learning disabled child case study

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Publications
Account settings

Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now .

Advanced Search
Journal List
Int J Dev Disabil
v.64(3); 2018

‘We want to be parents like everybody else’: stories of parents with learning disabilities

Kate theodore.

1 Department of Psychology, Doctorate in Clinical Psychology, Royal Holloway University of London, Egham, UK

Daniel Foulds

2 Mind the Gap, Bradford, UK

Paul Wilshaw

Alison colborne, joyce nga yu lee, lisa mallaghan, mary cooper, julia skelton.

This project represents a unique collaboration between creative and research processes using an inclusive qualitative methodology.

Semi-structured interviews with five mothers and three fathers with learning disabilities were led by learning disabled researchers, and thematic analysis conducted with input from people with learning disabilities.

Five main themes are presented; (1) subjective experiences of becoming parents, (2) perceptions that other people assume people with learning disabilities are incompetent parents, resulting in a need to prove worthiness, (3) experiences of services, (4) overcoming ‘knock-backs’ and (5) support for the rights of other parents. An additional subgroup analysis is presented: fathers feel ‘left out’.

Parents felt criticized by others, who they felt questioned their competence as parents unfairly by comparison to those without learning disabilities. The collaboration between academic research and an inclusive theater group allowed dissemination of parents’ stories to wider public, and professional, audiences through creative performances.

Introduction

There has been an increasing focus in research on the needs of families where one or more parents have learning disabilities. 1 Despite this, there have been a number of limitations to this literature, which leave the experiences of this group of parents still less well understood. These limitations include sampling issues, such as the almost exclusive focus to date on the needs of mothers with learning disabilities (Emerson et al . 2015 ). Estimates of numbers of parents with learning disabilities have varied widely from 23,000 to upwards of 250,000 (McGaw 1998 , Department of Health and Department for Education and Skills 2007 ); accuracy of estimates have been limited by the reliance in the literature on identifying parents already known to services, poor records, and shifting and unclear definitions (Booth et al . 2005 ). It has been reported that most parents with learning disabilities are likely to have mild or even borderline intellectual disabilities, and as such are less likely to be known to services, or in some cases to meet eligibility criteria for adult social services (Emerson et al . 2015 ). Therefore, reliance in the research to date on samples already known to services is likely to have biased inclusion of parents with more significant disabilities, or additional challenges such as mental health difficulties or identified difficulties with parenting, bringing them into contact with services.

A unique population-based survey in the UK attempted to identify the health needs of parents thought to have learning disabilities, rather than relying on identification of parents already known to services, to compare their health needs with parents without learning disabilities (Emerson et al . 2015 ). This methodology had limitations in its accuracy of identifying people with learning disabilities, but it still represents a unique way to attempt to identify a group of individuals who may be regarded as the ‘hidden majority’ (Emerson 2011 ) of those with less severe learning disabilities, who may not otherwise be identified. As a group, it is known that people with learning disabilities face multiple disadvantages in their parenting role. Emerson et al . ( 2015 ) identified that parents with learning disabilities were significantly more socio-economically disadvantaged, experienced more neighborhood adversities, and less intergenerational support than parents without learning disabilities.

It has been identified that such factors of multiple disadvantage, although not necessarily all attributable to an individual’s learning disabilities per se, may influence parenting ability, and parents with learning disabilities have been reported to be disproportionately likely to lose custody of their children (McGaw and Newman 2005 ). Many parents with learning disabilities will have their parenting ability formally assessed by social services (McGaw and Candy 2010 ). While multiple factors still compromise the accuracy of current figures, estimated rates suggest that 40–60% of parents with learning disabilities have children removed from their care (Emerson et al . 2005 ). Families where one or more parent has learning disabilities or borderline learning disabilities were reported to make up to almost a quarter of cases following a review of court findings conducted in 2000 in the UK (Leeds and Sheffield areas), with just 10% of the children identified as having parents with learning disabilities returning to live at home (Booth et al . 2005 ). Recent studies outside the UK also report that parents with learning disabilities represent a similarly significant proportion of children removed from parental custody by welfare services (20–25% of cases in Norway; Tøssebro et al . 2017 ).

Specific good practice guidance for services supporting families where one or more parent has a learning disability was developed a decade ago in the UK (Department of Health and Department for Education and Skills 2007 ), and recently updated (Working Together with Parents Network 2016 ) to reflect current policy and legislation. However, there are concerns about the application of these good practice principles to services provided to parents with learning disabilities and their families, and that services remain patchy across the UK.

Understanding the experiences of parents with learning disabilities is therefore essential to continue to inform professionals within health and social care, and the wider community who will come into contact with parents. There is a growing and important literature base on the experiences of parents with learning disabilities. Largely this literature has focused on the experiences of mothers, and as above recruitment strategies may also often have focused on those who are already in contact with services, which can lead to skewed samples. However, it still gives a rich and valuable insight into the experiences of parents with learning disabilities, often using qualitative methodologies. Mayes et al . ( 2011) provided the first reflective account of how women with learning disabilities adopt, and how much they value, their mother identity when they become parents. Interestingly, Kaspar and Stenfert Kroese ( 2017 ) found in an interpretive phenomological analysis that women with learning disabilities, who were not mothers, had sometimes differing views about whether having a learning disability was compatible with being a mother. Perhaps reflecting this idea that others may not always be positive about the identity of a mother with learning disabilities, another key finding from Mayes et al . ( 2011) was how mothers with learning disabilities align themselves to a social ‘ally’ as a significant person in their social network who can advocate for them as mothers and support both them and their children. Another study looking at the experiences of parenting from the perspectives of mothers, and their family and multi-disciplinary professional support networks, again highlighted the importance of the quality of a woman’s relationships in supporting her through, often emotional, periods of decision-making during pregnancy and parenting (Jamieson et al . 2016 ). Gould and Dodd ( 2014 ) explored experiences of mothers with learning disabilities who had had their children removed from care within the UK, and drew attention to the ‘presumed incompetence’ and high levels of scrutiny mothers reported experiencing. Mothers with learning disabilities whose children have been compulsorily removed from their care, often have multiple experiences of child removal (Mayes and Lewellyn 2012 ). It is notable that to date there has been much less emphasis in the research literature on the experiences of fathers with learning disabilities, however a recent research project in the UK found that fathers often experienced even greater exclusion from services (Dugdale and Symonds 2017 ).

These qualitative investigations into the lives of parents with learning disabilities highlight some common themes; the importance of a mother’s (or parent’s) social support and securing social allies in the support network, the experience of stigma and prejudice experienced by parents both in the social care system but also in their wider communities; and perhaps most significantly the experience of powerlessness (particularly around child removal and when questions are raised about parenting ability) and the power differentials identified between parents and those in their social or professional support network.

Current project: rationale and design

The idea for this innovative project came from Mind the Gap, the largest UK inclusive theater company for people with learning disabilities, and specifically from a personal source; the experience of a parent-to-be known to the theater company, who was undergoing a parenting assessment. This inspiration led the team of performers with learning disabilities to begin researching the subject matter, through immediate circles as well as reviewing what literature already existed regarding the lives of parents with learning disabilities, including on the internet and in the media. They quickly established that not only is the subject matter difficult to access for non-academics and non-professionals, as it exists mostly in the form of professional articles and advice for non-disabled people, but that there was an absence of the voices and perspectives of learning disabled parents in the information available and accessible to them. The company wanted to bring this hidden subject to a ‘mainstream’ audience using their creative means. They wanted to base their project on ‘real lives’, which led to their aim to interview parents about their experiences. Mind the Gap secured funding to recruit an academic researcher to support the research element of the project. Qualitative interviews have been established as an effective way of giving a voice to people with learning disabilities (Booth and Booth 1994 ) in research. It was agreed that the researcher would take the semi-structured interviews conducted by Mind the Gap, and qualitatively analyse the content, using Thematic Analysis. This led to the current collaboration and inclusive research design, which had the following aims:

• To collect stories of a group of parents with learning disabilities, to contribute directly to the creative outputs of ‘Daughters of Fortune’.
• To add to the body of qualitative literature regarding the experiences of parents with learning disabilities, using an inclusive user-led research methodology.

Furthermore, the original vision from Mind the Gap was that the voices of parents with learning disabilities be shared much more broadly with people with learning disabilities themselves, but also professionals and the wider community; with aims to help enhance the impact of research on policy, and to help support the wider goals of reducing stigma and (mis)perceptions of parents with learning disabilities in the wider public arena (e.g. Tarleton 2015 ). The research has directly fed into and impacted the public facing outputs of the overall project from Mind the Gap, ‘Daughters of Fortune’: ‘Anna’, a Forum Theater interactive workshop, which is aimed at parents with learning disabilities, and supporting professionals; ‘Mia’, a touring theater production, which is aimed at the general public across the UK; ‘Paige’, a planned book that will combine images of the parents, artistic responses such as extracts, poems and short stories, and the research findings; ‘Zara’, the ultimate vision for the overall project, a large-scale spectacle which will reach large audiences in London, Halifax and online (Mind the Gap 2017 ).

Ethical review

The research was approved by Royal Holloway University of London College Ethics Committee. All participants had capacity to give informed consent to participate in the research. The information relating to the confidentiality and procedures of the interview were discussed with all participants at the start of the interview, and their understanding of this checked verbally, prior to individuals giving their informed consent. Additional written consent for interviews to be used for the purposes of research was sought. The nature of the interview topic (about experiences of parenting) was sensitive; support was available from participants’ self-advocacy groups, or from Mind the Gap for interviewers.

Participants

Participants were adults with learning disabilities living in the community, who were parents, and who had capacity to give consent to be interviewed and share their experiences verbally. Participants were identified by self-advocacy groups, in two areas of the UK. The eight participants represented a heterogeneous group with varied characteristics. Five participants were mothers, and three fathers. Five were from White British backgrounds, and three from minority ethnic backgrounds. Their ages ranged from 31 to 61 years at the time of the interview. The eight parents had 22 children between them; their children’s ages spanned widely from 2 years to 29 years, with seven of the parents having at least one child who was still under 18 years old. Two of the participants were also grandparents.

All but one of the parents had direct experience of children’s services involvement, for example through assessment of parenting abilities or undergoing child protection proceedings. Six parents had at some time experienced separation from their children, who had been adopted, placed in foster care, or in kinship care or special guardianship arrangements, or lived with their other parent. Three parents were currently living with at least some of their children at the time of the interview. Four parents were currently married or living with a partner. All except one parent interviewed lived independently; one currently lived semi-independently in sheltered housing, following separation from his family.

Table Table1 1 presents a summary of participant characteristics including participants’ history of parenting, and current contact with children where known; for the purposes of preserving anonymity, limited personal characteristics have been ascribed to individuals.

Pseudonym	Gender	Age	Ethnicity	Children (ages)	Parent’s living arrangements	Parenting history and current contact with children
Georgina	Female	31	White British	1 (2 years)	Independent – with husband	Child living with parents, following children’s services involvement and formal parenting assessment conducted
Eliza	Female	61	White British	1 (23 years)	Independent – with partner	Child (now adult) living with mother and mother’s partner, following children’s services involvement and formal parenting assessment previously
Lisa	Female	43	White British	2 (17 and 14 years)	Independent	One child adopted, one child fostered following children’s services involvement and formal parenting assessments conducted; limited contact currently with children
Ian	Male	44	White British	3 (25, 23, and 14)	Independent	Children living with their mother following parent separation, no formal parenting assessment or input from children’s services reported; has contact with adult children
Tariq	Male	35	British Pakistani	3 (15, 11, and 6 years)	Semi-independent; sheltered accommodation	Children living separately from father and living with mother and grandparents following children’s services involvement; has supervised contact with children
Gary	Male	48	Black British/Caribbean	4 (from 16 to 29 years old) (also 6 step-children)	Independent – with wife	Children separated from father, children’s services involvement reported previously; children current living arrangements unclear
Patricia	Female	36	White British	3 (12, 10, and 8 years)	Independent – with partner	Children living with parents, following children’s services involvement and formal parenting assessment conducted
Maria	Female	N/K	Mixed – Caribbean/Asian	5 (14, 11, 9, 6, and 3)	Independent – with daughter	One daughter living with mother; following children’s services involvement and formal parenting assessments conducted, varied contact with two children, no contact with two children

Semi-structured interviews

There is much written on the impact of power on research interviews (Råheim et al . 2016 ). There has equally been much written about the powerlessness felt by parents with learning disabilities going through the ‘system’ of health and social care (e.g. Gould and Dodd 2014 ). This power differential may then be even more influential when parents with learning disabilities are being interviewed by researchers who are often also powerful professionals. Therefore, we felt that having learning disabled researchers, who were also performers within the overall project, would best support participants to talk openly about their experiences, and may lead to different or enhanced narratives to emerge from the interviews.

An interview guide was developed together with the learning disabled researchers and the writing mentor prior to interviews. This was very much a guide to broad questions around experiences of parenting that may be asked in the interview. The questions in the interview schedule covered broad areas related to parenting experiences, including the participants’ experiences of choosing to have children, and / or finding out they or their partner was pregnant, experiences of pregnancy, childbirth and early parenting experiences, as well later parenting experiences such as supporting child going to school (if parent had continued to actively parent their child), and / or experiences of separation from children (e.g. if child had been removed from parent’s care or there was parental separation), and experiences of help from others, including professionals. The interview schedule included a number of open questions (e.g. ‘How did you feel when you found out you were/your partner was pregnant?’) but also possible prompts to be used (e.g. ‘Who did you tell?’), but was deliberately flexible, so that interviews could be guided by individual participants’ varied experiences.

All interviews were audio-recorded. Parents were each interviewed individually by a small team from Mind the Gap, consisting in each interview of a learning-disabled principal researcher, the ‘writing mentor’ and a photographer and film-maker (where appropriate). The term ‘writing mentor’ is used here to describe the relationship between the non-learning disabled writer from Mind the Gap (MC), and the team of learning disabled researchers. The writing mentor supported the learning disabled researchers to develop their writing practice and supported the interview process, through supporting the development of questions for interviews, training the writers on interview techniques, and providing pastoral support for the team during and after the interviews. The learning disabled researchers and writing mentor also make up the writing team which provide the artistic strand of the research, reviewing the same research interviews and creating short artistic responses in the forms of extracts, poems and short stories, which will eventually form part of another strand of the overall ‘Daughters of Fortune’ project: the planned book, ‘Paige’.

There was careful consideration with each participant to ensure they fully understood and consented to sharing their stories for the purposes of the different parts of the project, including both the research and the creative outputs. To support this informed consent process, once interviews had been conducted, a summary of the story as shared was written up by the writing mentor and learning disabled researchers, and a copy given and read back to the individual participant, to check again they were happy with the content of the information they had shared. Following this process, all of those interviewed confirmed they were happy to share their stories.

Data analysis

Thematic Analysis was deemed an appropriate qualitative methodology for this project, as it is used as a method for under-researched topics or where participants’ views are less well known, has been used successfully with qualitative research with people with learning disabilities, and allows a theoretical flexibility.

Interviews were transcribed verbatim for the purposes of the research analysis. Braun and Clarke’s ( 2006 ) method of Thematic Analysis was followed. As the academic researcher (KT) conducting the initial analysis had not conducted the interviews, the initial phase of ‘ familiarisation with the data ’ was important to attend to; this was achieved through listening and re-listening to the audio files, reading the transcripts while listening to the audio, and reading and re-reading the transcripts, noting down initial thoughts. Initial codes were generated by line-by-line reviewing of the transcripts, highlighting data comprehensively and inclusively to comprise the initial codes. Initial codes were then reviewed across the interviews, and eventually combined into themes.

There were a number of recommendations followed to ensure quality in qualitative research (Elliot et al . 1999 ; Mays and Pope 2000 ; Yardley 2000 ). The researcher is experienced in working with people with learning disabilities and in conducting qualitative research. Following the development of the initial themes, these were presented, reviewed and discussed with one of the learning disabled researchers, to explore interpretation differences, and to check credibility of the interpretation. This led to some subtle adjustments to interpretation, including the language used to name the themes. A further process of triangulation occurred by presentation of some of the key themes from the analysis to a group of parents with learning disabilities at one of the self-advocacy organisations, who acted as a reference group to the research. The themes presented resonated strongly with the reference group, some of whom had been interviewed and others had not, but this process also led to some changes to the language presented in the final report. Following these processes, key themes from the final analysis are presented below.

Quotations from participants are provided to ground the analysis in examples. Direct quotes are presented below in italics , with the interviewee’s pseudonym. Square brackets indicate substituted or added words needed to maintain anonymity or to add clarification to the quotation. Where there is a break in the text presented from the direct quotation, this is denoted by ‘….’.

Reflections of the research team

Throughout this collaborative process of research, as is core to qualitative research, we have reflected together as a research team on our individual roles and perspectives. The lead author and academic researcher is a clinical psychologist, and a mother herself, with particular research and clinical interests in supporting the needs of families where a parent has learning disabilities. All of the learning disabled researchers had considered future parenthood, although none were parents at the time of the research. The research team throughout have reflected on the emotional impact of the stories shared by parents; there was potential for this to have a significant emotional impact for all the researchers, particularly those with learning disabilities, for whom the stories had potentially very personal resonance. All learning disabled researchers felt they were well supported by the writing mentor and by Mind the Gap in reflecting on the personal impact of hearing these powerful and emotive stories.

We have reflected on the benefits of having learning disabled researchers conducting interviews, to allow participants to share their stories honestly with peers rather than professionals. We were also keen to have no fixed agenda for the interviews, and the interview schedule was very flexible to allow participants to just ‘tell their stories’. The consent processes and transparency around how material shared by parents would be used by the team also supported parents to feel confident in divulging information.

We have also reflected on the position of being researchers who with varying degrees could be considered as ‘insiders’ or ‘outsiders’ (as people with or without learning disabilities, as parents or not), and we have reflected that there may be benefits and challenges of each position. Perhaps between our various membership roles we have occupied ‘the space between’ ‘insider-outsider’ (Corbin Dwyer and Buckle 2009 ), and made attempts to balance these positions. We outline these positions here to help the reader also better understand how our different positions may have influenced the research conducted.

The following includes the most prominent themes developed from the Thematic Analysis. A number of the themes also comprised of sub-themes; Table Table2 2 presents the themes and sub-themes where relevant, and the participants who contributed to each of the themes.

Theme	Subtheme	Contributing participants
Theme	Subtheme	Georgina	Eliza	Lisa	Ian	Tariq	Gary	Patricia	Maria
Becoming a parent	Desire for parenthood	✓	✓	✓	✓	✓			✓
Becoming a parent	Planning for and being ‘ready’ for parenthood	✓		✓		✓
Assumption of incompetence and proving worthiness as parents		✓	✓	✓	✓		✓	✓	✓
Experiences of services	Feeling criticized and let down by services			✓	✓			✓	✓
Experiences of services	Being believed in as a parent			✓		✓			✓
Overcoming ‘knock-backs’		✓	✓				✓	✓	✓
Support for rights of parents with learning disabilities		✓	✓			✓	✓		✓
		-	-	-	✓		✓	-	-
Fathers feel ‘left out’		-	-	-	✓		✓	-	-

Becoming a parent

Desire for parenthood.

Many parents (both mothers and fathers) talked about their own desire for becoming a parent being a long-held aspiration:

And I told him I always wanted kids, I always you know, felt I was meant to be a mum. (Georgina)

However, at least some parents explicitly said they had not expressed these ideas with people other than their partners, before becoming parents or trying to conceive. Some parents expressed that they were concerned that they may not be ‘ good enough ’ to be parents, or that this may not be a realistic life aspiration for a person with learning disabilities:

Being honest, I didn’t really think about kids at the time because I’d feel like I wasn’t good enough … I didn’t believe in myself. (Ian)

Planning for and being ‘ready’ for parenthood

Several parents described that they had ‘planned it, to have family …’ (Tariq). However, Georgina reflects on the paradox between expectations of people with learning disabilities deciding when they are ready to be parents in comparison with people without such disabilities:

You never know how ready you are to be a parent until you’ve got kids. So to say to people with special needs, you need to make sure you’re ready before you try, that’s already setting you up to fail. (Georgina)

Preparation for parenthood for a number of parents also followed the ‘typical’ experiences, common for all parents, such as preparing equipment needed, and considering names:

We went through some names while I was pregnant. If it’s a boy this, if it’s a girl this. So we chose her first name and middle name while I was still carrying her … (Georgina)

However for a number of parents this was also tinged with an uncertainty, based in reality, about whether the preparation would be in vain, and whether after the pregnancy and birth of the child, their child may not return home with them:

We wanted to decorate her room, but given there was no guarantee we would be able to keep her, we felt we couldn’t. (Georgina) No the cot was … the cot was in the next room but [son] wasn’t in the cot, he was living with [paternal grandmother] … (Lisa)

Assumption of incompetence and proving worthiness as parents

A strong theme that emerged was parents’ experiences of others (often professionals) making assumptions of incompetence toward parents with learning disabilities, that they would not be able to be good enough parents:

They say learning disability can’t look after a child and they just assume straight away that you can’t look after your child. (Lisa)

There was a sense of needing to ‘prove’ competence as parents:

I’d changed everything they wanted around … And I proved I could do it. (Eliza)

This presumed inability to be good enough parents was experienced as unfair by parents. It was also felt that in fact more was being expected of parents with learning disabilities than those without:

I think you can’t say that just because these people have learning disabilities they have to go through all the social services and all the hoops. Because there are a lot of people that don’t have a learning disability that are really naff parents and they don’t have to go through all the social services. (Georgina)

Parents talked about feeling like they needed to demonstrate being not only ‘good enough’, but in fact ‘better’ than other parents without learning disabilities in order to stop their abilities being questioned. Georgina spoke of this in a number of contexts, including that prior to conceiving, she and her partner chose to complete a course in childcare in order to prove competence:

At least if we do this, it shows we’ve got a qualification, it will give us a tick, it will be a tick for us rather than tick against us, because it shows we’re taking it seriously. (Georgina)

Parents felt that expectations on them were unfairly high, so that they would actually never be able to meet them, and that others, even professionals, if in their position, would not be able to do better than them:

All the assessments I passed, both independent social worker and the guardian’s, I passed all the assessments. So I don’t know what they needed more from me. (Maria)

I said [to the social worker], you have [daughter] for a fortnight, and see how you cope with her. Oh, [social worker said] I don’t … I couldn’t cope with her. I said no, but then you’re telling me I’m not doing my job … (Eliza)

I said, who do you expect me to be, Mother Theresa? (Lisa)

Parents interviewed also talked about something that felt more ominous and threatening about this. Ian talked about frustrations about others ‘always look[ing] at us like we’re different’ possibly ‘lesser’, than others without learning disabilities, and that professionals were ‘ just too eager to take the child away ’ (Ian) from parents with learning disabilities:

They prey on our disability and our vulnerability … it’s just unfair, ‘cause we’ve got learning disabilities … but we want to be parents like everybody else. We want to have the opportunity; we want support from the beginning like everybody else. Parents without learning disabilities can be bad parents too, but they get support … if you’ve got a learning disability you get judged you can’t parent. (Ian)

Experiences of services

Parents’ talk about their experiences of services often resonated with the ideas already presented within good practice guidance, such as appreciating support that was long-term, and the benefits of advocacy. As this is well-documented elsewhere (Working Together with Parents Network 2016 ), repeating this here is not the focus of this article. However, a couple of sub-themes within this are reported below.

Feeling criticized and let down by services

Parents often did recognize their own support needs:

If you need help, get help … don’t do it on your own, it’s hard. (Eliza)

However, they often spoke about feeling criticized by professionals:

It’s just them dictating and I don’t like that … ‘You’re not a good mother. You’re not this. You’re not that …’ (Patricia)

Furthermore, some described they had not received services that had been agreed:

They said they would do a pre-birth assessment … I was okay with that agreement … but it didn’t happen. I didn’t get the pre-birth assessment …. (Lisa)

For Lisa this resulted in negative consequences after the birth of her son:

Now, the doctor had discharged me and said I could go home with my son, so but the social worker wasn’t having it. He said no, he said we haven’t done the assessment on you … He said, oh we’ll have to put [son] into foster care … (Lisa)

Lisa also spoke about being offered support that did not meet her needs, but being criticized for not engaging with it:

They were teaching me stuff I could already do like how to feed my son… and they made a report to the social worker to say [I’m] not fully taking part in these courses … I told her … they’re telling me stuff I already know, I don’t need those courses, they’re not right for me. (Lisa)

Being believed in as a parent

Having someone who believed in and positively encouraged parents’ capabilities, seemed to be one of the most valued qualities of professionals, and often occurred where parents reported positive experiences of services:

In all those eight social workers that my children have had there’s been one nice one … she was the one believed in me and got me to keep my children. All the rest didn’t, you know, didn’t believe in me. So they … they all labelled me and think I couldn’t parent. (Lisa) Throughout all of this I’ve learned how good it is to have positive encouragement and positive support. (Maria)

Overcoming ‘knock-backs’

I’ve had my knock backs in life … and I know that the knock-backs they could, if I let it, get to me (Gary)

All the parents talked about the ‘ knock - backs ’ they had experienced in their lives. But these were also stories of strength and resilience against adversity, and of hope for the future. Some parents spoke about personal strength achieved through supportive relationships or support from others, which helped them to cope:

You just have to do it. You try to do it. You’ve got to cope. If you need help, get help, because there’s help there. (Eliza)

Parents also talked of their own internal coping resources and personal strength:

Hope. Strength. Love for my kids. The fact that I’m a strong person but at the same time emotional. (Patricia)

Furthermore, parents spoke about taking the challenges they had experienced as ‘ a learning curve ’ (Gary) and a way to become stronger for the future:

In life you go through things and they either break you or make you stronger. I’ve gone through too much; I didn’t lose my family to gain nothing. (Maria)

Support for rights of parents with learning disabilities

Parents were supportive of the rights of other parents with learning disabilities. Georgina also reflected on the need to move towards seeing disability as ‘difference’ that is not necessarily ‘lesser’, in a way that was reflective and eloquent:

Well I don’t think that just because you’re a learning disabled parent, that you’re going to be less able to parent, I think, if anything it gives you a different perspective on parenting and helps you … So I think that as long you understand how your disability affects you, you can stop that from impacting your child in a negative way. (Georgina)

Fathers feel ‘left out’

Much of the parenting literature to date has focused on the experience of women with learning disabilities becoming mothers, and the experiences of fathers has been largely neglected. Our study interviewed both mothers and fathers, which allowed some analysis of the subgroup of fathers. While many experiences as described above were shared by mothers and fathers, it was of note that two of the three fathers that we interviewed also talked specifically and significantly of feeling ‘ pushed out ’ (Ian) or even ‘ cheated ’ (Gary) in their role as father, both by professionals and others in their social network.

Being a father is a very, very good thing. I’m proud to be a father, but …. fathers need to be included … if you’re a father the focus is on the mothers, not on the fathers and we feel left out. I felt really left out before my son being born. I hated it. (Ian)

Both of these fathers had experienced some separation with their children, although still had some contact currently with their (now adult) children. Interestingly, the one father (Tariq) who did not specifically talk about feeling his subjective experience was one of being ‘left out’, objectively had still been excluded to some extent from his (still younger) children’s lives, and was no longer living with his children, although he did have some supervised contact.

This collaborative project has used an inclusive qualitative research methodology to gather and analyse the stories of a diverse group of eight mothers and fathers with learning disabilities. Some previous literature (McGaw 1996 ) has suggested that people with learning disabilities most often present with ‘unplanned’ pregnancies. In our study, at least a couple of parents spoke of actively planning their families, and more still spoke about a strong desire to be a parent, which resonates with literature that has emphasized the value attached to the ‘parent identity’, which can provide a positive and distinct identity from that of learning disability (Baum and Burns 2007 ; Shewan et al . 2014 ). However, some participants also spoke of not having talked to others about their desire to be a parent. As a research team we reflected whether this was related to an internalized self-stigma about not being ‘good enough’ to be parents, as voiced by some parents in our study, which also reflects the perspectives of some women with learning disabilities about the capabilities of women with learning disabilities to be good mothers in other literature (Kaspar and Stenfert Kroese 2017 ). We also wondered, however, how much wider societal expectations and perceived stigma from others about the parenting rights of people with learning disabilities impacts on people’s decisions to voice such aspirations. Historically it has been the case that people with learning disabilities have been viewed as ‘asexual’ or ‘eternal children’ with society not placing expectations around sexuality and parenthood as synonymous with having learning disabilities. Current policy indicates that adults with learning disabilities should be supported to have access to the rights and responsibilities of ‘ordinary lives’ including sexual lives and parenthood. However, research has suggested that although public attitudes toward sexuality of people with learning disabilities are increasingly positive, this often still does not extend to progressive attitudes toward parenting rights (Cuskelly and Gilmore 2007 ; Scior 2011 ).

One of the key themes to come from the research data was the parents’ experiences of others (including professionals) assuming that they, as people with learning disabilities, would not make competent parents. This mirrors other qualitative research (Gould and Dodd 2014 ). In our study, this left parents struggling to prove their abilities (and worthiness) as parents, but further left them feeling that in order to do this, they may need to be even ‘better’ than parents without learning disabilities. The research team and reference group were again curious where these expectations were coming from, and whether this also resulted from internalized self-stigma. Recent literature has also explored how middle-class UK mothers without learning disabilities consider, and largely resist, pressure to live up to the ‘ideal’ mother (Pederson 2016 ). Although this parenting pressure is not unusual for all parents, it contributed to an powerful emotional experience for our parents with learning disabilities, when coupled with the intense scrutiny and criticism they experienced from others, and the often very real threat of child removal each time they may get it ‘wrong’. These ideas of assumed incompetence and the need to prove oneself as a worthy parent is something that resonated strongly with the research team and reference group. We also wondered whether this reflects broader (historical) narratives around who is deemed ‘worthy’ of bringing children into the world, and that although policy has progressed far from it, the shadow of these ideas from the eugenics movement (Kempton and Kahn 1991 ), still has some (unconscious) influence on society, as reflected perhaps in some of the wider stigmatised beliefs still held about parents with learning disabilities (Scior 2011 ).

This continued questioning whether parents with learning disabilities can be ‘good enough’ parents, from the starting point that it is unlikely they will be, left parents feeling heavily scrutinized and criticized by services. All but one of the parents within our study had experience of statutory services’ involvement in supporting their parenting; all but two had experienced some form of separation from at least some of their children, be it temporary or permanent. It therefore seems pertinent to note that it is the quality of the involvement from services that is important, not just that services are involved; with highly critical support likely to inhibit rather than promote parenting competence (Tucker and Johnson 1989 ). Good practice guidance in place (Working Together with Parents Network 2016 ) emphasizes the need for service providers to make ‘reasonable adjustments’ to ensure appropriate services and fair processes are provided to disabled parents, in line with the Equality Act ( 2010 ) and the Human Rights Act ( 1998 ). However, the experiences of our parents suggests services are not always adjusted to meet individuals’ needs or the standards set by good practice, such as ensuring support is centerd around parents’ strengths, not only their deficits.

Fathers interviewed also reported an additional feeling of being alienated from processes and aspects of parenting that they felt their partners, the mothers of their children, had been included in. Although fathers with learning disabilities have been largely neglected in the literature, our small subgroup analysis also supports the recent larger qualitative study that investigated experiences of eight fathers with learning disabilities, which similarly found that fathers often felt excluded and received little statutory support in their parenting role (Dugdale and Symonds 2017 ).

One of the key elements of professional and peer support that parents found important was having someone who believed in parents’ capabilities, and who therefore did not assume incompetence as was so often parents’ experiences. This is resonant with other research highlighting the importance for mothers in recruiting a ‘social ally’ (Mayes et al. 2011 ). Parents also demonstrated great resilience and strength in the face of adversity and challenges to their parent identities, and identified the need for professionals and the wider community to reduce stigmatized ideas and to instead demonstrate a belief that, with support, parents with learning disabilities can be ‘good enough’ parents.

We hope that writing up our experiences of the process of this inclusive qualitative research methodology will also encourage others to consider similar inclusive research designs, in line with recent calls for further articles attending to the voices of co-researchers with learning disabilities in academic research (Strnadova and Walmsley 2018 ). Although a number of recent research studies have ensured significant involvement from people with learning disabilities in their research processes (e.g. Dugdale and Symonds 2017 ), to the authors’ knowledge this is the first paper that has used such an inclusive design to further explore the experiences of parents with learning disabilities, including people with learning disabilities conducting interviews and contributing the analysis and dissemination. We believe that the inclusive research methodology is a strength of the research. Many of the themes developed from this study still resonate with other qualitative literature in this area, which has not been conducted with such an inclusive methodology (e.g. Mayes and Lewellyn 2012 ; Gould and Dodd 2014 ; Dugdale and Symonds 2017 ; Kaspar and Stenfert Kroese 2017 ). However, people with learning disabilities, within the research team and reference group, have appreciated the opportunity to be involved throughout, and we feel that the study has demonstrated that such involvement can enhance, rather than compromise, the quality of the research. Having people with learning disabilities conduct the research interviews, jointly with others without learning disabilities, reduced the usual power dynamics that can inhibit interviewees with learning disabilities from sharing their experiences openly, particularly groups such as parents whom we know have already experienced significant power disparities with professionals. This enabled parents to talk openly about difficult experiences, and extended themes, such as the ‘assumption of incompetence’ initially explored in previous research (Gould and Dodd 2014 ). Furthermore, including the processes of credibility checks with individuals with learning disabilities meant that the ultimate themes were shaped further by, and resonated with, the experiences of people with learning disabilities. Learning disabled researchers, as any novice researchers, will understandably require support both to develop skills in interviewing and analysing data, and also support to manage any emotional impact of hearing the sensitive stories of participants, which may have personal relevance. This support requires some additional resource than if research is conducted by experienced academic researchers alone. However, we feel this resource is justified for both its impact on research results, and also the skills development it brings for learning disabled researchers.

The research is a small-scale qualitative project, and has a number of limitations that should be noted. Given the small number of parents interviewed, they represented a broad range of mothers and fathers, for example with a wide range of ages of their children, from two to 29 years old, and living in two geographical areas of the UK. While in some respects this means a broad range of experiences have been represented, as a small scale thematic analysis project, the heterogeneity of the sample may have made it challenging to differentiate how the experiences of parents with learning disabilities may change over time or place. For example, we may hope that the experiences of those who have more recently become parents for the first time, and after a number of policy developments over the past decade (e.g. Department of Health and Department for Education and Skills 2007 ) may be very different from parents with now much older children. However, in this study experiences of these individuals have been considered together. It is of note that it was more challenging to recruit parents with younger children, including those going through current parenting assessments or other involvement with children’s services, with some such parents approached but ultimately deciding not to participate in the interviews. This may have been both due to the nature of being a parent with young children, but also likely reflects the increased pressures on these parents’ time due to additional appointments with social or legal services, as well as being an indication of parents’ ‘readiness’ to talk at such a difficult time in their lives. It would however be invaluable to hear the experiences of more parents going through child protection proceedings currently or recently.

As with other research in this area (e.g. Mayes et al . 2011 ), individuals in this study self-identified as having a learning disability. This therefore may include those who would be recognized by services as meeting diagnostic criteria for learning disability (American Psychiatric Association 2013 ), but may also include others who do not meet the eligibility criteria for services, who are functioning at borderline range of intellectual functioning, but who may present with significant learning difficulties, difficulty with literacy, and / or other needs such as being on the autistic spectrum, and also other complex needs related to living in socio-economic disadvantage (Emerson et al . 2015 ). This does therefore reflect a heterogeneous group, but likely a group with a high level of functioning (as indicated by the majority living independently) by comparison to the full range of individuals with global learning disabilities. This does however make it likely to capture the wide range of individuals who often present to services with some difficulties; in fact those who do not formally meet the eligibility criteria for learning disabilities services may face increased difficulties as the ‘hidden majority’ (Emerson 2011 ), due to lack of support services available to them. The majority of parents in this study were identified through self-advocacy or parent support groups, and a number of parents interviewed had a role as self-advocates or supporters of others. Therefore, this is probably a group who are particularly informed and versed in talking about their own and others’ experiences of being parents with learning disabilities. While it has been important to understand their stories, there may be a wider group of individuals who are less used to talking about their experiences, or who are not identified as, or who even self-identify as having learning disabilities, whose experiences may be different (or similar), but whose voices are even less heard.

This small research project is part of a much larger creative project, ‘Daughters of Fortune’, led by Mind the Gap inclusive theater company. As such, the research has informed Mind the Gap’s public-facing outputs, which has enabled a broad dissemination of the stories and messages of parents to wider public and professional audiences, allowing greater impact than is often the case for academic research. This has included the forum theater workshop ‘Anna’ and national touring of theater production ‘Mia’, in which performers with learning disabilities, some of whom were also researchers, tell the stories of the parents included in this research project. A ‘plain english’ summary of the research processes and results has been developed and shared with people with learning disabilities. Where the research has been presented at academic conferences, presentations have been co-constructed and delivered jointly by the academic researcher and one of the learning disabled researchers. There are plans to enhance accessibility and wider dissemination of the messages through further incorporation of research with photograph and film resources, through the planned book ‘Paige’ and plans for large-scale creative spectacle ‘Zara’. All of this is in line with the parents’ aspirations to share their experiences and educate others, including health and social care professionals but also mainstream public, about the needs but also the strengths of parents with learning disabilities.

Contributors

KT is a clinical psychologist and lecturer at Royal Holloway University of London. She works in the National Health Service with people with learning disabilities, and her research interests are the experiences and support needs of parents with learning disabilities. DF, PW and AC are all learning disabled researchers and performers at Mind the Gap, one of Europe’s leading learning disability theatre companies. JNYL is a resident director and artistic lead for the ‘Daughters of Fortune’ project at Mind the Gap. LM is a senior producer at Mind the Gap. MC is a writer for Mind the Gap. JS is a executive director at Mind the Gap.

Conflict of interest

No potential conflict of interest was reported by the authors.

This work was supported by the Wellcome Trust [grant number 203034/Z/16/Z].

1. Also known as intellectual disabilities, but the term ‘learning disabilities’ (or occasionally ‘learning disabled’) is used here and throughout as the term favoured by the people with learning disabilities involved in this study.

American Psychiatric Association . 2013. Diagnostic and statistical manual of mental disorders . 5th ed. Washington, DC: American Psychiatric Association. [ Google Scholar ]
Baum, S. and Burns, J. 2007. Mothers with learning disabilities: Experiences and meanings of losing custody of their children . Tizard Learning Disability Review , 12 , 3–14. 10.1108/13595474200700018 [ CrossRef ] [ Google Scholar ]
Booth, T., et al.. 2005. The prevalence and outcomes of care proceedings involving parents with learning difficulties in the family courts . Journal of Applied Research in Intellectual Disabilities , 18 , 7–17. 10.1111/jar.2005.18.issue-1 [ CrossRef ] [ Google Scholar ]
Booth, T. and Booth, W.. 1994. The use of depth interviewing with vulnerable subjects: lessons from a research study of parents with learning difficulties . Social Science & Medicine . 39 ( 3 ), 415–424. [ PubMed ] [ Google Scholar ]
Braun, V. and Clarke, V.. 2006. Using thematic analysis in psychology . Qualitative Research in Psychology , 3 , 77–101. 10.1191/1478088706qp063oa [ CrossRef ] [ Google Scholar ]
Corbin Dwyer, S. and Buckle, J. L.. 2009. The space between: On being an insider-outsider in qualitative research . International Journal of Qualitative Methods , 8 , 54–63. 10.1177/160940690900800105 [ CrossRef ] [ Google Scholar ]
Cuskelly, M. and Gilmore, L.. 2007. Attitudes to sexuality questionnaire (individuals with an intellectual disability): Scale development and community norms . Journal of Intellectual & Developmental Disability , 32 , 214–221. 10.1080/13668250701549450 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Department of Health and Department for Education and Skills . 2007. Good practice guidance on working with parents with a learning disability . London: HMSO. Available at: < http://webarchive.nationalarchives.gov.uk/20080817163624/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_075119 > [Accessed 1 March 2018]. [ Google Scholar ]
Dugdale, D. and Symonds, J.. 2017. Fathers with learning disabilities and their experiences of adult social care services . Bristol: School for Policy Studies, University of Bristol. [ Google Scholar ]
Elliot, R., et al.. 1999. Evolving guidelines for publication of qualitative research studies in psychology and related fields . British Journal of Clinical Psychology , 38 , 215–229. 10.1348/014466599162782 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Emerson, E. 2011. Health status and health risks of the ‘hidden majority’ of adults with intellectual disability . Intellectual and Developmental Disabilities , 49 , 155–165. 10.1352/1934-9556-49.3.155 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Emerson, E., et al.. 2005. Adults with learning disabilities in England 2003/4 . Available at: < http://webarchive.nationalarchives.gov.uk/20110504140405/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsStatistics/DH_4120033 ≥ [Accessed 1 March 2018].
Emerson, E., et al.. 2015. The health of parents with and without intellectual impairment in the UK . Journal of Intellectual Disability Research , 59 , 1142–1154. 10.1111/jir.12218 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Equality Act . 2010. London: HMSO. [ Google Scholar ]
Gould, S. and Dodd, K.. 2014. ‘Normal people can have a child but disability can’t’: The experiences of mothers with mild learning disabilities who have their children removed . British Journal of Learning Disabilities , 42 , 27–37. [ Google Scholar ]
Humans Rights Act . 1998. London: HMSO. [ Google Scholar ]
Jamieson, R., et al.. 2016. Becoming a mother: Supported decision-making in context . Journal of Intellectual Disabilities , 20 , 313–328. 10.1177/1744629515604552 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Kaspar, P. and Stenfert Kroese, B.. 2017. What makes a good mother? An interpretive phenomological analysis of the views of women with learning disabilities . Women’s Studies International Forum , 62 , 107–115. 10.1016/j.wsif.2017.04.005 [ CrossRef ] [ Google Scholar ]
Kempton, W. and Kahn, E.. 1991. Sexuality and people with intellectual disabilities: A historical perspective . Sexuality and Disability , 9 , 93–111. 10.1007/BF01101735 [ CrossRef ] [ Google Scholar ]
Mayes, R. and Lewellyn, G.. 2012. Mothering differently: Narratives of mothers with intellectual disabilities whose children have been compulsorily removed . Journal of Intellectual and Developmental Disability , 37 , 121–130. 10.3109/13668250.2012.673574 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Mayes, R., et al.. 2011. ‘That’s who I choose to be’: The mother identity for women with intellectual disabilities . Women’s Studies International Forum , 34 , 112–120. 10.1016/j.wsif.2010.11.001 [ CrossRef ] [ Google Scholar ]
Mays, N. and Pope, C.. 2000. Qualitative research in health care: Assessing quality in qualitative research . British Medical Journal , 320 , 50–52. 10.1136/bmj.320.7226.50 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
McGaw, S. 1996. Services for parents with learning disabilities . Tizzard Learning Disability Review , 1 , 21–32. [ Google Scholar ]
McGaw, S. 1998. Practical support for parents with learning disabilities. In: O’Hara J. and Sperlinger A., eds. Adults with learning disabilities . New York: Wiley, pp. 123–128. [ Google Scholar ]
McGaw, S. and Candy, S.. 2010. Supported Decision Making for Women with Intellectual Disabilities. In: Llewellyn G., et al., eds. Parents with intellectual disabilities: Past, present and futures . Chichester: Wiley, pp. 137–154. 10.1002/9780470660393 [ CrossRef ] [ Google Scholar ]
McGaw, S. and Newman, T.. 2005. What works for parents with learning disabilities? Essex: Barnardo’s. [ Google Scholar ]
Mind the Gap . 2017. Daughters of Fortune . [online] (updated January 2018). Available at: < http://www.mind-the-gap.org.uk/projects/daughters-of-fortune/ > [Accessed 16 January 2018].
Pederson, S. 2016. The good, the bad and the ‘good enough’ mother on the UK parenting forum Mumsnet . Women’s Studies International Forum , 59 , 32–38. 10.1016/j.wsif.2016.09.004 [ CrossRef ] [ Google Scholar ]
Råheim, M., et al.. 2016. Researcher–researched relationship in qualitative research: Shifts in positions and researcher vulnerability . International Journal of Qualitative Studies on Health and Well - Being [e-journal] 11 , Available through: Taylor and Francis group [Accessed 16 January 2018]. [ PMC free article ] [ PubMed ] [ Google Scholar ]
Scior, K. 2011. Public awareness, attitudes and beliefs regarding intellectual disability: A systematic review . Research in Developmental Disabilities , 32 , 2164–2182. 10.1016/j.ridd.2011.07.005 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Shewan, L., et al.. 2014. A qualitative exploration of the identities of parents with a learning disability . British Journal of Learning Disabilities , 42 , 17–24. 10.1111/bld.2014.42.issue-1 [ CrossRef ] [ Google Scholar ]
Strnadova, I. and Walmsley, J.. 2018. Peer reviewed articles on inclusive research: Do co-researchers with intellectual disabilities have a voice? Journal of Applied Research in Intellectual Disabilities , 31 , 132–141. 10.1111/jar.2018.31.issue-1 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Tarleton, B. 2015. A few steps along the road? Promoting support for parents with learning difficulties . British Journal of Learning Disabilities , 43 , 114–120. 10.1111/bld.2015.43.issue-2 [ CrossRef ] [ Google Scholar ]
Tøssebro, J., et al.. 2017. Prevalence, trends and custody among children of parents with intellectual disabilities in Norway . Journal of Applied Research in Intellectual Disabilities , 30 , 533–542. 10.1111/jar.2017.30.issue-3 [ PubMed ] [ CrossRef ] [ Google Scholar ]
Tucker, M. B. and Johnson, O.. 1989. Competence promoting versus competence inhibiting social support for mentally retarded mothers . Human Organization , 48 , 95–107. 10.17730/humo.48.2.d64q452755008t54 [ CrossRef ] [ Google Scholar ]
Working Together with Parents Network . 2016. Update of the Department of Health and Department for Education and Skills Good practice guidance on working with parents with a learning disability (2007) . Bristol: Working Together with Parents Network, Norah Fry Centre for Disability Studies, School for Policy Studies, University of Bristol. Available at: < https://www.bristol.ac.uk/media-library/sites/sps/documents/wtpn/2016%20WTPN%20UPDATE%20OF%20THE%20GPG%20-%20finalised%20with%20cover.pdf > [Accessed 1 March 2018]. [ Google Scholar ]
Yardley, L. 2000. Dilemmas in qualitative health research . Psychology and Health , 15 , 215–228. 10.1080/08870440008400302 [ CrossRef ] [ Google Scholar ]

Browse Works
A CASE STUDY ANALYSIS OF A CHILD WITH LEARNING...

A CASE STUDY ANALYSIS OF A CHILD WITH LEARNING DISABILITY/IES

The case study seeks to explore a child with a learning disorder that dropped out of his grade school, exploring the explicit factors that lead to that discussion and what he exactly went through. The case study will contain detailed information about the child starting from the point of birth, social, medical, and all other historical facts that are important in dissecting the learning disability in him. Historically, several children across the world struggle in school in certain circumstances of learning as monitored from time to time. Nevertheless, it has been noted that when a child struggles during learning in school with some skills for a period, it could be related to a learning disorder (O’Connell et al., 2019). The learning disorder has various definition depending on the prevailing parameters at that time. However, a learning disorder in a child can be defined as a scenario when a child exhibits some level of difficulty in one or more learning spheres.

Nastor, D. (2021). A CASE STUDY ANALYSIS OF A CHILD WITH LEARNING DISABILITY/IES. Afribary . Retrieved from https://afribary.com/works/a-case-study-analysis-of-a-child-with-learning-disability-ies

Nastor, Dan Paul "A CASE STUDY ANALYSIS OF A CHILD WITH LEARNING DISABILITY/IES" Afribary . Afribary, 05 Mar. 2021, https://afribary.com/works/a-case-study-analysis-of-a-child-with-learning-disability-ies. Accessed 24 Aug. 2024.

Nastor, Dan Paul . "A CASE STUDY ANALYSIS OF A CHILD WITH LEARNING DISABILITY/IES". Afribary , Afribary, 05 Mar. 2021. Web. 24 Aug. 2024. .

Nastor, Dan Paul . "A CASE STUDY ANALYSIS OF A CHILD WITH LEARNING DISABILITY/IES" Afribary (2021). Accessed August 24, 2024. https://afribary.com/works/a-case-study-analysis-of-a-child-with-learning-disability-ies

Document Details

Related works, graphic materials in educational technology, the impact of oil industry on the economic development of nigeria (a case study of nigeria national petroleum corporation (nnpc) ), the impact of financial institution on the economic development of nigeria (a case study of commercial bank in enugu urban), the causes and effects of economic meltdown on the nigerian economy, impact of teacher’s involvement in examination malpractice on students in secondary schools in ebonyi state: afikpo educational zone, impact of the human relations theory on educational administration, the relevance of industrial work experience to secretarial students, problems of examination malpractice in tertiary institutions and ways of solving them, analysis of shs integrated science syllabus for ghana, (arts) combine eng,govt,lit, crs&eco) unn post-utme past questions & answers for sciences, social sciences and arts..

Payment Method

Pay with card/bank/ussd/mobile money.

We accept several ATM, debit, credit cards. We also process bank transfer, direct bank debit, mobile money and USSD payments. Click "Pay Now" below to pay online and access works immediately.

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Publications
Account settings
My Bibliography
Collections
Citation manager

Save citation to file

Email citation, add to collections.

Create a new collection
Add to an existing collection

Add to My Bibliography

Your saved search, create a file for external citation management software, your rss feed.

Search in PubMed
Search in NLM Catalog
Add to Search

Child disability case studies: an interprofessional learning opportunity for medical students and paediatric nursing students

Affiliation.

1 Centre for Child and Adolescent Health, University of Bristol, Bristol, UK. [email protected]
PMID: 17661885
DOI: 10.1111/j.1365-2923.2007.02800.x

Context: We describe an interprofessional learning (IPL) opportunity for pre-qualification medical and paediatric nursing students using community-based case studies of disabled children and their families.

Methods: A total of 160 students were randomly allocated into interprofessional and uniprofessional pairs. Each pair visited a disabled child at home and school and presented their experience to the rest of the group. Quantitative and qualitative evaluation methods were used to explore the learning experience. Data collection tools included a scale measuring attitudes towards IPL, which was completed by all students before and after their visits and focus groups.

Results: The value of the community setting and independent working of the case study was appreciated by the students. The intimacy involved in working in IP pairs demonstrated both positive and negative features. Nursing students showed more open and positive attitudes towards IPL than medical students. Nursing students in IP pairs appear to have benefited most from the exercise, notably in terms of confidence and self-esteem. Professional differences in communication skills and approach were identified as particular learning points for all students.

Conclusions: The added value of combining quantitative and qualitative research methods is well demonstrated by this study. Learning opportunities from the case study were greater as a result of working interprofessionally. Student attitudes towards IPL and professional stereotyping changed as a result of this IPL exercise. The importance of the social context of learning and the contact hypothesis are supported by our findings.

PubMed Disclaimer

Publication types

Search in MeSH

LinkOut - more resources

Full text sources.

Ovid Technologies, Inc.

Citation Manager

NCBI Literature Resources

MeSH PMC Bookshelf Disclaimer

The PubMed wordmark and PubMed logo are registered trademarks of the U.S. Department of Health and Human Services (HHS). Unauthorized use of these marks is strictly prohibited.

Academia.edu no longer supports Internet Explorer.

To browse Academia.edu and the wider internet faster and more securely, please take a few seconds to upgrade your browser .

Enter the email address you signed up with and we'll email you a reset link.

We're Hiring!
Help Center

A CASE STUDY OF A CHILD WITH SPECIAL NEED/LEARNING DIFFICULTY Researcher

2018, INTERNATIONAL JOURNAL OF CREATIVE RESEARCH THOUGHTS(IJCRT)

The study has been conducted to investigate the levels and kind of difficulty the child/student is facing in learning things in or outside the classroom. It also examines the relationship between the school and home environment of the student with special needs who is facing difficulty in learning i.e. reading, writing listening or speaking. The case study was conducted by keen observations of the special needed child by involving and getting information directly from different reliable sources like,concerned teachers, peer groups from the school, parents, family members and peer groups of the child from the home environment. The tools used in the study were 1. Qustionnaire. 2. Direct observation. Etc.The study reveals the fact that the actually the child not having any slow learners like problem nor she is shy or un interested in learning by nature but she loves to read , learn , take part in different activities, she is having a creative mind by birth or nature but only the problem of her difficulties in learning is because of the depression she has laid in her mind of part of the home environment and improper treatment given to her by parents,family,teacher' s, elder' s in the school or at home.

Related Papers

The main purpose of this study was to find out the contributions and challenges of Sebeta Special School for the students with visual impairments. The research design used was qualitative case study method as this would enable the researcher to make in-depth study of the case from different perspectives. For responding to this main purpose of the study, purposive sampling was used and the subjects of the study were selected by purposive sampling technique as they were taught to have the necessary information for the problem under study. Accordingly, twelve teachers, (six males and six females), ten members of the support staff (five males and five females) and twelve students of grades five to eight (six males and six females) were selected for focus group discussions. Besides, interview was conducted with the director and vice-director of the school and two teachers (a male and a female) and two students of grades five to eight (a male and a female).Relevant documents and observation checklists were also used as data sources. Finally, the data collected were organized, thematically analyzed and presented. Regarding the contributions made, the findings revealed that the school has been serving the students as school to learn in and succeed, home to live in and family to leave with. There were also services being delivered for the students and different resources were also available in the special school. Findings displayed that challenges to the special school as manpower assignment was not need based and there were lack of skills necessary to run activities in the special school as reading and writing braille, inadequate budget and resources like student textbooks transcribed in to braille and wastages in usage of the available resources. Besides, there were conditions that violate the safety of students. The recommendations made included such things as alleviating the challenges the school encountered such as appropriate use of resource, availing the necessary resources as braille textbooks, budget and others.

CERN European Organization for Nuclear Research - Zenodo

Arpeeta Anand

IOSR Journals

" The ramification and still over effect of learning disability affect so much that education of school children find hard reality to attain its universal character. At the same time the problem continues to be the most baffling one for the state thriving for universalization of elementary education and ensuring right to education for all. Many interventions and policy measures although were initiated to increase the achievement level of students but at the Psycho-social level addressing the problem still remained attempted. Providing appropriate literacy and innumeracy learning opportunities especially, continues to be a challenge both for the teachers so also parents. Observing the gravity of the problem an earnest attempt has been made in this paper to understand the conflicting currents of the problem from a psycho-social perspective. A diagnosis also has been made to address the challenges of learning disability among school children, so that the objective of universalization of education could be well attained with.

Croatian Journal of Education - Hrvatski časopis za odgoj i obrazovanje

Jasna Kudek

Journal of emerging technologies and innovative research

Masrat Majeed

Learning Disorder is not single disorder but include disabilities in any of seven areas related to Reading, Language and Mathematics. These separate types of learning disabilities frequently co-occur with one-another and with Social Skill Deficits and Emotional or Behavioral Disorder. Approximately 7% of all school children under the age group of 3-6 years are identified as Learning Disability in the Composite Regional Centre (CRC) according the Survey done during the period of 2018. Using many tests and assessments, it was found that these children with LD are also attributed to other emotional or behavioral disorders. While learning disability, learning disorder and learning difficulty are often used interchangeably, they differ in many ways. Disorder refers to significant learning problems in an academic area. These problems, however, are not enough to warrant an official diagnosis. Learning disability, on the other hand, is an official clinical diagnosis, whereby the individual ...

SHODH SARITA

Arpeeta Anand , Mohd. Faijullah Khan (Asstt. Prof., IASE)

Specific Learning Disability (SLD) is a neurological problem which creates lots of challenges in the life of children. Academic challenges are the most significant one when it comes to SLD. Aims: To realize the academic challenges that children experienced with Specific Learning Disability. Setting and Design: Phenomenological method with purposive sampling technique was used to understand the perspective of children. Materials and Methods: Semi-structured Interview Schedule was administered on 10 SLD children who are already diagnosed by clinical psychologist studying in elementary grade i.e. 6th grade to 8th grade of private inclusive schools of Delhi. Analysis Used: Content Analysis was used to elicit the data from open-ended questions. Results: (i) Children with learning disability are not lazy & dumb, they perceive and process information in a different manner. (ii) They encounter difficulty in comprehending what they have read, experience making mistakes while reading, repeating the sentences, taking pause, trouble in remembering & mispronouncing same sounding words. (iii)Children doesn’t want to write because of the fright behind committing spelling mistakes. (iv) Many children experience problem of illegible writing, pain in hand, extra efforts & longer time for writing and trouble in expressing their own ideas & feelings in writing. (v)They struggle while comprehending & solving the word problems, issues of learning formulas, making things in order of operations, basic calculations, understanding time, directions, money related work and difficulty in keeping scores of games & matches. (vi) Have trouble in adjusting to new situations, take time to adapt new changes in their life, demand lots of coordination & organization, face problem in rote learning & remembering, comprehending meaning from text and thinking out of box (vii) Complained about inability to perform activities that require sequential order, meeting deadlines, following schedules, arranging things, setting priorities and managing time for themselves. (viii) Experience inability to interpret their own environment as a consequence react inappropriately, misunderstood situation and comprehend different meaning with incorrect interpretation. (ix) Trouble in understanding what they hear and making differences in sound, difficulty in comprehending meaning from sounds, require frequent repetition and struggle in remembering what they heard. (x) The foremost problem of misunderstanding in analyzing and synthesizing visually presented information. (xi)They experience inability to differentiate between same sounding words, struggle while copying from writing board, mispronouncing the words while reading, difficulty in comprehending meaning out of what they read and figuring out what is there in pictures & graphs. Conclusions: The present study has identified various challenges faced by children academically. Proper support & motivation of parents & teachers can help children in developing positive attitude towards learning. Keywords: Specific Learning Disability, Children, Education, Academic Challenges, Phenomenological Analysis

Science Park Research Organization & Counselling

This study aims to obtain problems encountered in special education in the direction of opinions of parents attending to Special Training and Rehabilitation Institution and develop solution suggestions compansating these problems. In the scope of study parents of 20 students were interviewed. Tha datas that were obtained as a result of qualitative semi-structured interview form, were analysed by descriptive analysis method. The participant parents were asked 7 questions about education period, physical conditions, difficulties they encountered regarding their children in the scope of relations of teachers with parents and managers and point of view of society. Most of the participants expressed problems such as most of the problems should be solved by top levels, training hours are insufficient and rejection of society.

Sara Sadiki , Fitore Bajrami

The qualitative method was the research method used in this study as the most appropriate to the purpose, objectives, and research questions of the study. The purpose of this study is to examine the experiences of parents during education of their children with special needs. The research question of this study was: What experiences have parents had during the education of their children with special needs? The sample in this paper consists of 13 respondents, citizens of Debar parents of children with special needs. The interviewed sample consisted of 10 mothers and 3 fathers. From the analyzes made, it appears that 99% of parents regarding the inclusion of children answered that it is very necessary, they hope that these laws and rules are respected in schools, that there are no differences and discriminations with children, but that everyone is equal in the classroom and have maximum care, especially children with special needs. 46% of the parents answered that they got enough help from the school, they were not underestimated by others, the teacher supported them and helped them adapt, showing that the children were calmer and more productive. While 53.8% of parents answered that the school does not have help with their child, they express dissatisfaction and non-fulfillment of the conditions for work with children with special needs. Based on the analyzes carried out, 75% of the parents answered that they had difficulties with their child's adaptation to school, and the parents were also forced to stay with them in the classroom for several months.

Dr. Muhammad Irfan Arif

Authors: Kafiat Ullah Khan Research Scholar Allama Iqbal Open University Islamabad E-mail: [email protected] Ameer Hasan MS(Management Sciences) Riphah International University Islamabad E-mail: [email protected] Muhammad Irfan Arif Ph.D Scholar University of Education Lahore E-mail: [email protected] "ABSTRACT The purpose of the study was to explore and measure the perception and satisfaction level of parents of special children about the role of special education institutes in the adjustment of special children in their families. The researcher used two self developed questionnaires to collect the data about the problem under investigation, one questionnaire to explore the perception of parents of special children about the role of special education school in the adjustment of special children in their families and the other questionnaire to measure the satisfaction level of parents. All special children of District Bhakkar were constituted as target population for the study. The special children of Special Education School Bhakkar were assessable population for the study. Parents of sixty special children from Special Education School Bhakkar conveniently selected as a sample for the study. Simple descriptive statistical techniques such as mean and percentages were used to analyze the collected data. After careful data analysis the researchers concluded that the special education schools may play very vital role in the adjustment of special children in their family but unfortunately due to lack of resources and infrastructure they are not fulfilling the needs of special children and there is also some lack in the awareness about the importance of social adjustment of special children in their families. The researcher identified very important needs, problems, self concept, and adjustment problems of special children through review of literature and research. Key Words: Special Education , Special Children , Family Adjustment "

The International Journal of Social Sciences and Humanities Invention

Ermira Tati

Loading Preview

Sorry, preview is currently unavailable. You can download the paper by clicking the button above.

RELATED PAPERS

International Journal of Disabilities Sports & Health Sciences

Gözde Keleş

Proceedings of the 2nd INDOEDUC4ALL - Indonesian Education for All (INDOEDUC 2018)

Rohmah Ageng Mursita

Nidhomul Haq : Jurnal Manajemen Pendidikan Islam

Achmad Mudrikah

Role of Special Education Schools in the Adjustment of Special Children in Their Family

ameer hasan

Satyendra Tyagi

Kyla Oliver

Yunan Putra

Zenodo (CERN European Organization for Nuclear Research)

jake VILLANUEVA , Ryan Jacob

Journal of Educational Research and Reviews

muhammad al faruq

Béla Csillei

International Journal of Open-Access, Interdisciplinary & New Educational Discoveries of ETCOR Educational Research Center (iJOINED ETCOR)

sammy guzman

sreeramamurty namburu

Fernando Raimundo Macamo

Nordisk tidsskrift for pedagogikk og kritikk

Gunhild Reite

Jurnal Penelitian Pendidikan IPA

Jenny Indrastoeti Siti P

Proceedings of the Borneo International Conference on Education and Social Sciences

IJASS JOURNAL

Prof Dr Anwar Chishti

SOCIETY, INTEGRATION, EDUCATION. Proceedings of the International Scientific Conference

Lina Milteniene

Başak Bağlama

journal of reserach and innovations in soial sciences, The Hermitage

bharti kaushik

IJSRP Journal

Universal Journal of Educational Research

Horizon Research Publishing(HRPUB) Kevin Nelson

The Explorer Islamabad

Protocol for a randomized controlled trial of an internet-based prevention intervention for young children at-risk for functional abdominal pain

Rona L. Levy 1 ,
Tasha B. Murphy 1 ,
Miranda A. L. van Tilburg 2 , 3 , 4 ,
Margaret R. Kuklinski 5 ,
Jennifer A. Bailey 5 ,
Homer Aalfs 6 ,
Isabel Badillo 6 ,
Hafsah Diakhate 6 &
Tonya M. Palermo 6 , 7

Trials volume 25 , Article number: 549 ( 2024 ) Cite this article

236 Accesses

Metrics details

Chronic pain often clusters in families, where parents and their offspring both experience chronic pain conditions. Young children of parents with irritable bowel syndrome (IBS) represent an at-risk group for the development of abdominal pain, disability, and excess health care visits in later childhood. Parental solicitous responses to children’s expressions of discomfort and maternal modeling of their own illness behavior contribute to a greater focus on somatic sensations, leading to illness behaviors in children. This randomized controlled trial will test the effectiveness of an early preventive web-based psychosocial intervention (REACH)[TM] vs. an educational web-based safety comparison condition delivered to parents with IBS to alter parental responses and lead to improved child health and decreased health care costs.

Parents with IBS who have children ages 4–7 years are recruited via community-based approaches (e.g., social media advertisements, school electronic distribution, research networks) and health care providers. The target sample is 460 parents randomized to REACH, a web-based social learning and cognitive behavior therapy (SLCBT) intervention or an educational web-based safety comparison condition (EC). Participants will be assessed at baseline, 6-week (immediate post-intervention), 6-month, 12-month, and 18-month follow-up periods (months post-completion of intervention). The primary outcome is change in parental solicitous/protective behaviors. Secondary outcomes include parent risk and protective factors, child health and symptom outcomes, and health care utilization and cost savings.

This study adapts a validated, parent-delivered intervention to treat chronic pain in children to a web-based application designed to prevent the development of chronic pain in very young, high-risk children. If successful, this strategy can both prevent adverse sequelae of this condition from developing as well as be widely accessible. Furthermore, the availability of a prevention model for parent training could result in significant short- and long-term health benefits across a broad spectrum of conditions.

Trial registration

ClinicalTrials.gov NCT05730491. Registered on February 15, 2023.

Peer Review reports

Introduction

Background and rationale {6a}.

How people perceive and react to somatic sensations, both acute and chronic, has sometimes been described as “illness behavior” [ 1 ]. Inappropriate illness behavior may include over and underreacting to somatic sensations, worrying, focusing, and reacting to somatic sensations. Misinterpretation of normal somatic sensations as symptoms of disease may also result in seeking unnecessary medical treatment (for oneself or one’s child) for minor complaints. In the case of children, inappropriate parental concerns about children’s expressions of discomfort may also contribute to an apparent worsening of symptoms and increased disability [ 2 ].

Unexplained symptoms and associated illness behavior in children are prevalent, disabling, and costly. Abdominal pain, the second most common recurrent pain complaint of childhood (after headaches), affects approximately 13.5% of children worldwide [ 3 ]. Frequent pain is associated with increased school absenteeism and missed work by parents [ 3 , 4 ]. The majority of children with persistent abdominal pain meet criteria for functional abdominal pain disorder (FAPD), defined as episodic or continuous abdominal pain without evidence of an inflammatory, anatomic, metabolic, or neoplastic process that could explain symptoms [ 5 ]. FAPD is associated with significant illness behavior such as disruption of activity and high health care utilization, resulting in low health-related quality of life (HRQOL), as well as emotional distress in both children and parents [ 4 , 6 , 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 ].

Familial clustering of idiopathic chronic abdominal pain has been observed [ 15 ]. Lewis et al. found that children whose mothers have a history of IBS are 62% more likely to report symptoms of gastrointestinal disease in the absence of physiological findings than those without IBS [ 16 ]. Walker and Greene [ 17 ] found a significant positive association between severity of somatic symptoms in children diagnosed with FAPD and similar symptoms in both mothers and fathers, suggesting that either parent may influence the development or maintenance of these symptom reports. A study by Levy et al. that examined idiopathic chronic abdominal pain rates between monozygotic and dizygotic twins and their parents concluded that the contribution of learning processes appeared to be greater than that of genetics in the development of idiopathic chronic abdominal pain [ 18 ].

There is mounting evidence that multiple factors, including parental modeling, solicitous responses, and beliefs, account for the development and maintenance of symptom reports in children with a diagnosis of FAPD [ 19 , 20 , 21 , 22 , 23 , 24 ]. Learning theory [ 25 , 26 ] provides a strongly supported explanatory model for why gastrointestinal complaints may run in families. Children may learn from their parents by observing how parents react to their own illness symptoms (modeling) and/or by how parents respond to the children’s gastrointestinal symptoms (concern and reinforcement). Several randomized controlled trials (RCTs) have demonstrated the effectiveness of social learning theory approaches including parent cognitive behavioral interventions (such as parental reinforcement of wellness behaviors) for children with established chronic pain conditions, including FAPD [ 27 , 28 , 29 , 30 ]. Therefore, psychosocial interventions have become part of the recommended treatment for FAPD [ 31 ].

There is evidence that children may incur a significant increase in the risk for developing abdominal pain and disability just prior to, or in the first years of school [ 16 , 32 ], suggesting that strategies to prevent illness behaviors should be implemented before they develop or are well established. However, to date, preventive interventions have not been used to target the illness behavior patterns in childhood that are critical precursors leading to development of FAPD. Developing strategies to prevent and/or reduce illness behavior in children at risk for FAPD has the potential to mitigate deleterious effects on children’s academic, social, and emotional development [ 33 ]. Prevention studies following participants as far as late adolescence or young adulthood have demonstrated positive, long-term effects on a range of developmental outcomes from interventions that targeted parenting skills and other external or internal risk factors during early childhood [ 34 , 35 , 36 ].

A social learning approach, with its emphasis on parent education and skills training, provides a potentially powerful framework for early intervention with families whose children are at higher risk for illness behavior due to their parent’s IBS or idiopathic abdominal pain. Intervening early, before patterns have a chance to become established, could truncate the development of illness behaviors (e.g., somatic complaints and activity avoidance) that often lead to disability. Intervening early can also improve children’s health-related quality of life and reduce children’s healthcare utilization, especially attributable to FAPD [ 37 ]. Though beyond the scope of this study, more distal goals of early, preventative intervention include forestalling the development of FAPD, with its potentially lifelong negative effects on health and well-being. Furthermore, delivering the intervention via the internet through approaches our team has successfully used with other CBT pain interventions enhances the potential for scalability and dissemination [ 38 , 39 ].

Figure 1 provides the conceptual model of the targets and outcomes of the prevention intervention on which this study is based.

Intervention targets and outcomes

Specifically, the intervention being tested here is designed to decrease risk factors for children of parents with IBS or idiopathic abdominal pain (parent catastrophic thinking about their own and their child’s symptoms and anxiety, and parenting stress) and increase protective factors (positive affect and social support). This, in turn, is expected to decrease parental solicitousness (primary outcome) as well as decrease children’s abdominal symptom complaints, and increase children’s physical, psychological, social, and school functioning, which will result in reduced health care utilization, and related direct and indirect costs including parent missed work time and costs of medical visits.

Objectives {7}

This randomized controlled trial (RCT) aims to determine the efficacy of REACH (REsilient Active CHildren; https//reachkids.info), a web-based preventive social learning and cognitive behavior therapy (SLCBT) intervention delivered to parents with IBS, compared to an educational web-based safety comparison condition (EC) (aim 1). This trial also aims to determine the contribution of changes in parental risk and protective factors in mediating treatment effects (aim 2). Finally, we aim to determine cost savings of implementing this preventive intervention on health care expenditures and resource utilization over 18 months (aim 3).

The following hypotheses will be tested: (1) Parents receiving SLCBT will show lower solicitous behaviors (primary outcome) and lower levels of risk factors, including anxiety, parenting stress, and catastrophizing, than those receiving EC; (2) Parents receiving SLCBT will show increased levels of protective factors, including higher positive affect and social support, than those receiving EC; (3) Children of parents trained in SLCBT will have better physical, psychological, social, and school functioning, and fewer abdominal symptoms than those of parents in EC; (4) Changes in parental risk and protective factors will mediate treatment effects on child health-related quality of life; and (5) The SLCBT group will demonstrate superiority in a cost savings analysis compared to the EC group.

Trial design {8}

This study utilizes a RCT with parallel 1:1 assignment to two study arms, (1) REACH, a SLCBT prevention intervention, and (2) an educational comparison condition (EC). Figure 2 provides the study recruitment flow and condition allocation.

Study recruitment and measurement flowchart

Methods: participants, interventions, and outcomes

Study setting {9}.

The study team is based at academic institutions and hospitals (University of Washington, Seattle Children’s Hospital, University of North Carolina at Chapel Hill, Cape Fear Valley Medical Center). Study participants, however, are recruited through social media outlets, newsletters, and relevant community groups (as described in Sect. 15) and may reside anywhere in the United States (because the intervention is web-based there are no limitations on participant location within the US). All participant data will be collected electronically through REDCap (Research Electronic Data Capture) [ 40 ], hosted at the University of Washington in Seattle, WA, USA.

Eligibility criteria {10}

The study sample will include 460 parents with IBS who have young children ages 4–7 years. Complete inclusion and exclusion criteria are presented in Table 1 .

Who will take informed consent? {26a}

If families are interested and eligible to participate, study staff will complete screening and obtain consent from parents and assent from participating children ages 7 or older via online REDCap e-consent forms.

Additional consent provisions for collection and use of participant data and biological specimens {26b}

N/A: This study does not collect biological specimens, nor is it affiliated with any ancillary studies.

Interventions

Explanation for the choice of comparators {6b}.

This study has two intervention groups: education control (EC) and social learning and cognitive behavioral therapy (SLCBT) (see Sect. 11a below). As this study is novel, in that preventive interventions have not previously been applied to reduce intergenerational transmission of pain conditions, there is no standard for control conditions for prevention studies of this nature. Our team, however, has developed and tested SLCBT interventions in prior studies to change parental behaviors and modeling to reduce children’s illness behaviors; the education control comparator condition in this study is similar to those we have implemented in these prior large randomized controlled trials in children with FAPD and other pain conditions. The purpose of this comparator condition is to control for time, attention, and online usage, and to allow masking to treatment allocation.

Intervention description {11a}

Education control (ec) condition.

Participants assigned to the control group will receive access to a web program and complete three modules focused on child health and safety behaviors, including sports and water safety, home and fire safety, and technology safety. The EC condition is designed to be completed in a 4-week period and uses several interactive elements to increase engagement including brief questions to assess participant knowledge, question/answer components, and instructional videos. The control condition is designed to match the active intervention in time, attention, and expectancy, three major components of the placebo effect. In two previous studies, a safety focused control condition produced credible treatment expectancy effects [ 42 , 43 ].

Social learning and cognitive behavioral therapy (SLCBT) condition

Participants assigned to the SLCBT group will complete a 4-week web-based intervention. The website includes an introductory module, three skills-training modules (i.e., strategies to promote wellness behaviors, use adaptive cognitive coping, model wellness behaviors for their children, and determine when it is appropriate to take further action regarding potential illness in their child), and a brief maintenance and summary module. The web modules were designed to be visually attractive and interactive in order to engage participants through using brief questions to assess participant knowledge, interactive question/answer components, instructional videos, and storyboards that participants can click through. Screenshots can be seen in Fig. 3 . Additionally, participants are provided a “Toolbox” in which informational handouts can be accessed, downloaded, and printed. The handouts provide a summary of the knowledge provided in each module. Participants in each group are instructed to log in to the website for 3–4 weeks, approximately 20–30 min per week. Research team members will regularly assess web program usage for all participants and will send reminders up to two times each week as needed to encourage regular usage and completion of all modules.

Sample screenshots of REACH intervention conditions

Criteria for discontinuing or modifying allocated interventions {11b}

This protocol is for a web-based prevention intervention, and as such, the intervention is not able to be modified. Participants may, however, opt out of the study at any time. There are no criteria for discontinuing intervention.

Strategies to improve adherence to interventions {11c}

Adherence during the treatment phase is monitored as follows: Participants will receive a link to the study website via email. Participants will have the ability to log in and out of their online study dashboard as needed; when they log back into the website it will take them to the location where they left off. The study website will track participant progress and send reminder emails to complete each module if they are not completed within the module timeframe. Study staff will also track progress and send additional reminders to participants as needed to promote website usage. Once a participant has completed a module, they will receive another email informing them when their next module is ready to begin with a link to access their online study dashboard. These email contacts will ensure that accessing the study materials is convenient and efficient.

Relevant concomitant care permitted or prohibited during the trial {11d}

Study participants are not prohibited from seeking other interventions or treatment during their participation in the study. Participants and their child(ren) can engage in any interventions (e.g., counseling, medication) as recommended by their care providers. The study team will collect information on any medical or psychosocial treatment received by the participants throughout their duration in the study.

Provisions for post-trial care {30}

Adverse events are not expected, however, if they occur they are expected to be minor. Therefore, there are no provisions for any additional post-trial care or to provide compensation to those who suffer harm from trial participation.

Outcomes {12}

The primary outcome is change in parental solicitous/protective behaviors. Secondary outcomes include parent risk and protective factors and child health and symptom outcomes. Participant outcomes will be assessed at baseline, immediate post-intervention (6 weeks) and at 6-month, 12-month, and 18-month follow-up periods. See also Sects. 6a and 18a.

Participant timeline {13}

See Fig. 4 .

Schedule of enrollment, interventions, and assessments [ 13 ]. *-t 1 : enrollment timepoint; t 1 : pre-treatment timepoint. **t 2 –t 5 : post-intervention assessments (time 2 to time 5). ***Specific measures and timepoints are shown in Table 1

Sample size {14}

Based on our prior studies with the intervention [ 43 ], we expect the intervention effect sizes for our primary outcome measure in the range of 0.30–0.40 (Cohen’s d ). Using Optimal Design software [ 44 ], we calculated that a sample size of 210–380 families is sufficient to detect the expected effect sizes with a power of 0.80 and alpha = 0.05. Power to detect mediation in analyses was calculated using Monte Carlo estimation methods. For single mediator models such as those proposed here, a sample size of 368 has > 0.80 power to detect a medium sized indirect effect that explains 13% of the variance in the outcome.

Recruitment {15}

Recruitment will be conducted through community-based approaches including health care providers, social media (e.g., postings with relevant groups and communities via Facebook, Twitter, Instagram, and others), school electronic distribution lists, and networks that connect volunteers with research projects (e.g., ResearchMatch). Potential participants complete a study interest and pre-screening form hosted on REDCap, a secure web-based data collection platform. Alternatively, they can contact study staff via a phone number or email provided in the study advertisement or through the study interest form, which provides complete details and easy links to assist in completion. A second wave of screening is conducted with interested parents wherein study staff contacts potentially eligible participants via phone call/voicemail, email, or text to see if the family is interested in hearing more about the study and assess eligibility.

Assignment of interventions: allocation

Sequence generation {16a}.

Group allocation will be determined using a computer-generated algorithm [ 45 , 46 ] with equal assignments to each study arm, using randomly selected block sizes stratified by self-reported parent sex at birth.

Concealment mechanism {16b}

Allocation concealment will be ensured, as randomization does not occur until after baseline measurements have been completed.

Implementation {16c}

As described in Sect. 16a, the allocation sequence is generated using a computer-generated algorithm. The study coordinator(s) will screen, consent, and enroll participants, administer baseline measures (via REDCap), and initiate randomization (via REDCap).

Assignment of interventions: blinding

Who will be blinded {17a}.

With the exception of study coordinators and statisticians (see 17b), all other study staff will be blinded to treatment assignment. Blinding will be made possible through restricting access to participants’ treatment assignments in the study database only to staff whose role is to assign participants to interventions, contact participants throughout the intervention phase, or analyze results by treatment group. Study participants will also be blinded to treatment assignment as both treatment arms are using the same web site platform with the same branding, however participants may deduce their treatment group based on the content they receive.

Procedure for unblinding if needed {17b}

Study coordinators and statisticians will not be blinded to the treatment assignment. In the unlikely event that an adverse event should occur, unblinding of other study staff can be conducted by the study coordinator who assigns participants to interventions.

Data collection and management

Plans for assessment and collection of outcomes {18a}.

All outcome measures will be completed online independently by study participants, reducing risk of bias.

A list of measures with descriptions and timing of assessments can be found in Table 2 .

Plans to promote participant retention and complete follow-up {18b}

Participants will receive automated assessment survey invitations and reminders. Research coordinators will send reminders if assessments are not complete, until the completion of the assessment period. We will use a database checklist to ensure that all study procedures are being followed (including consents) and that all surveys are being completed according to schedule. Study staff will review study participant data and monitor parent responses. Participants will also receive gift card incentives for completing baseline and follow-up assessments. All study questionnaires will be completed online so that participants may complete them at a time and place that is convenient for them.

We will continue to collect outcome data from all participants, irrespective of intervention discontinuation or deviation from protocol. However, we will construct a variable for the amount of treatment completed (number of web-based modules) and conduct sensitivity analyses to evaluate impact on intervention outcomes.

Data management {19}

All survey data will be collected from parents online through Research Electronic Data Capture (REDCap). Research coordinators will track assessment completion regularly, monitor for any missing data, and follow up with participants when missing data are identified. Research coordinators will also use REDCap alerts, reports, and queries to minimize missing data and ensure accuracy. Additionally, study staff will monitor for data irregularities such as skip patterns and out of range data and completion times. The REDCap database will require online sign-in with a username and password assigned to individual study staff; all data stored in REDCap will be retained on a secure server accessible only to study staff. Scoring of study measures will be done via syntax to minimize errors.

Confidentiality {27}

The subject’s identity, research records, and personal health information will be safeguarded using secure password-protected servers. The primary source of data will come from questionnaires, which will be stored electronically in REDCap (secure password-protected database). All data will be coded with a unique participant ID. The software will be hosted on a secure, HIPAA-compliant server. Only the research team and the Seattle Children’s IRB will be able to access the participant data and information collected from this study. All research data will be de-identified at the earliest possible opportunity to promote data sharing.

Given this is an online study, it is important that user information and data be protected from theft, alteration, or unauthorized access of any kind. We have developed a User Privacy Policy and a Terms of Use Agreement for the REACH web program as per standard. Use of the web program will indicate agreement and acceptance of the Terms of Use. Only study identification numbers will be used to identify participants on the website. The web program will not collect or ask for information that can be used to identify the participant. Seattle Children’s will not sell or rent information collected by the web program to others.

Plans for collection, laboratory evaluation, and storage of biological specimens for genetic or molecular analysis in this trial/future use {33}

N/A: As stated in Sect. 26b, no biological specimens will be collected for this study.

Statistical methods

Statistical methods for primary and secondary outcomes {20a}, general analytic procedures.

All main analyses will be intention-to-treat analyses, including all participants randomized regardless of intervention compliance. Missing values due to dropouts will be imputed with well-established methods that reduce bias in estimates such as multiple imputation, full information maximum likelihood, and empirical Bayes estimation, or multiple imputations with chained equations (MICE), if a substantial amount of missing data exists.

Analyses by aims

Aim 1: Determine the efficacy of a preventive SLCBT intervention delivered to parents with IBS compared to a time and attention placebo/education condition (EC) at post-intervention, and at 6-, 12-, and 18-month follow-up periods. Analyses for this aim will use an intent-to-treat and dose–response approach. Intent-to-treat analyses will test associations between a dichotomous treatment assignment variable and primary (hypothesis 1) and secondary parent outcomes (hypothesis 2), as well as child health and symptom outcomes (hypothesis 3). Efficacy tests will be conducted using multilevel modeling (MLM) to maximize power and account for the longitudinal design with nesting of observations within person/family. In addition, the use of multilevel modeling allows estimation of intervention effects at a specific time point (intercept) and change over time in intervention effects (slope; time × intervention interaction). For example, to test hypothesis 1, we will estimate a series of MLMs testing the effect of the dichotomous intervention assignment variable on the level (intercept) of Adult Response to Children’s Symptoms (ARCS) scores at each time point by systematically re-centering the intercept (e.g., model 1: intercept at post treatment, model 2: intercept at 6 months, etc.). Next, we will test the association between intervention assignment and the slope of ARCS scores across time points (time × intervention interaction). Controls will include parent age and sex, as well as child sociodemographic characteristics and parent pre-treatment irritable bowel syndrome severity. Dose–response analyses also will use MLM as described above; however, the dichotomous treatment assignment variable will be replaced with a treatment engagement score (e.g., modules completed).

Aim 2: Determine the contribution of changes in parental risk and protective factors as mediating treatment effects. Hypothesis 4 states that changes in parental risk and protective factors will mediate treatment effects on child health-related quality of life. Following the procedures outlined by Muthen and colleagues [ 66 ], we will test whether and to what extent parent pain catastrophizing mediates the association between intervention group and parent solicitous responses to child symptoms. Similar models will test other mediators, as well as secondary parent and child outcomes.

Aim 3: Determine cost savings of implementing this preventive intervention on health care expenditures and resource utilization over 18 months. To assess hypothesis 5 (that the SLCBT group will demonstrate cost savings in relation to the EC group), we will first estimate total health care costs in each group, which will be the sum of direct medical costs, direct non-medical costs, and indirect costs. Direct medical costs for each group will be estimated by multiplying utilization estimates for each reported service by the service-specific unit cost from the most recent Medical Expenditure Panel Survey (MEPS) [ 67 ], and then summing the costs of all services used. Direct non-medical costs for each arm will be the sum of parent-reported out-of-pocket expenses for special foods, equipment, and transportation to medical appointments. Indirect costs for each arm will be estimated by multiplying parent-reported hours of missed work and leisure time due to caring for their child (i.e., when absent from school due to illness behavior, taking to medical appointments) by the current mean hourly wage for a US worker from the Consumer Price Index of the US Bureau of Labor Statistics [ 68 ]. Cost superiority will be indicated by the arm with lower total health care costs if arms are equal in size, or by the average health care cost per family if they are not. Should the SLCBT arm prove superior as hypothesized, intervention-related cost savings per family will be estimated as the difference in average health care costs per family (health care cost/familySLCBT − health care cost/familyEC).

Interim analyses {21b}

N/A: As this is a low-risk behavioral intervention study, there are no plans to conduct interim efficacy or safety analyses.

Methods for additional analyses (e.g., subgroup analyses) {20b}

All analyses are described in Sect. 20a, including subgroup analyses.

Methods in analysis to handle protocol non-adherence and any statistical methods to handle missing data {20c}

As described in Sect. 19, study coordinators will monitor for missing data and follow up with participants when missing data are identified. As described in Sect. 20a, any missing values will be handled with well-established statistical methods, including multiple imputation, full information, or empirical Bayes estimation, or MICE.

Plans to give access to the full protocol, participant-level data, and statistical code {31c}

The study protocol and any datasets or statistical code required to support the protocol will be supplied on request. We will also make de-identified datasets available via a public data repository (see Sect. 29).

Oversight and monitoring

Composition of the coordinating center and trial steering committee {5d}.

N/A: This project does not include committees who are involved in trial coordination or conduct. Roles and responsibilities of study staff are outlined under “Authors’ contributions.”

Composition of the data monitoring committee, its role and reporting structure {21a}

N/A: A data monitoring committee is not needed, as the study sponsor deemed the study as requiring only a local Safety Monitoring Committee, which we describe below in Sect. 22.

Adverse event reporting and harms {22}

This study has been designated as minimal risk by the Seattle Children’s Institutional Review Board. Monitoring study safety will occur from the initial screening, throughout the informed consent process, and through study completion under the principal investigators’ (Palermo/Levy) supervision. A Safety Monitoring Committee (SMC) consisting of two independent investigators will review study progress and recommend appropriate action regarding adverse events or other safety issues.

In the case of an adverse event believed to be related to the study, documentation will be collected to describe the nature of the event and any associated risks. All adverse events will be discussed at weekly study meetings, and event reports will be provided to the SMC for quarterly review. The PIs will comply with all requirements of the IRB for the reporting of safety data and adverse/serious adverse events. All serious and/or unexpected problems presumed to be related to the study will be reported by the PIs to the IRB, the SMC, and the funding organization within 5 days after discovery. Dr. Levy or Palermo will retain the authority to stop or modify the trial at any time. All actions taken will be documented on a case report form.

Frequency and plans for auditing trial conduct {23}

Data quality will be ensured by annually verifying investigator compliance with all human subjects and HIPAA requirements. Additionally, Seattle Children’s Hospital’s Office of Research Compliance performs regular audits on all research studies. Furthermore, automated rules and logic in the study tracking database will enforce compliance with IRB requirements, conformance with informed consent requirements, and adherence to study protocols.

Plans for communicating important protocol amendments to relevant parties (e.g., trial participants, ethical committees) {25}

Any protocol modifications will be updated on ClinicalTrials.gov as needed and in the participants’ consent forms if participant activities are affected. All modifications will additionally be communicated to the study team (including co-investigators) and IRB for approval prior to implementation.

Dissemination plans {31a}

Study results will be disseminated via publication in peer-reviewed journals, reporting on ClinicalTrials.gov within 12 months of study completion, and presentations at professional society meetings. No identifying images or other personal or clinical details of participants will be presented in reports of the trial results. A summary of the study findings will be sent via email to all study participants after the final trial endpoint completion.

This intervention moves a previously successful parent training program for children who were diagnosed and treated for FAPD upstream to test whether it can be used to prevent precursors to future development of FAPD among children who are at risk by virtue of their parent’s experience with IBS. It will be the first study to evaluate the potential benefit of an early preventive psychosocial intervention specifically for children at risk for a common pediatric pain condition. The online aspect of the intervention being tested is also a significant advantage and significantly increases accessibility across many population groups.

Limitations

There are several potential limitations to consider. First is the risk of drop-out. Participants may not complete all follow-up assessments. Efforts to retain study participation over 18 months of follow-up assessments include maintaining regular contact through several forms of communication (e.g., text, email, phone), sending birthday cards to children, and reminders of upcoming assessments. Second, recruiting parents into family-based preventive programs is well known to be challenging, and rates of community-wide recruitment into universal parenting programs are typically less than 20% [ 69 , 70 , 71 ]. However, the pervasiveness of social media in the US and Canada [ 72 , 73 ] and the ease and constancy of access via mobile devices make Facebook [ 74 , 75 ] and other outreach mechanisms (e.g., Twitter, Reddit) valuable tools to increase successful recruitment of participants to research studies [ 76 , 77 , 78 , 79 , 80 , 81 , 82 , 83 ]. Finally, there is the potential that our findings may not generalize to some populations. Our program is only available in English, and some groups may not have access to, or be comfortable with web-based interventions of this kind. If successful, it is our expectation that other delivery formats of this program will be developed.

The preventive REACH intervention is based on a growing body of literature that demonstrates the effectiveness of a SLCBT intervention in helping children with established chronic pain. The intervention is delivered by web and mobile technologies, which make it easily scalable for wide dissemination. Many parents do not have access to in-person psychological services or experience other significant barriers to seeking services, particularly in low income and rural areas. Access to internet and smartphone technologies is high, even among those of low income. According to a Pew Research Center Internet Survey, 98% of adults ages 30–49 years use the internet regularly (including 91% of Black adults and 97% of Hispanic adults) [ 84 ]. Our plan to use these technologies to deliver treatment allows us to potentially also reduce disparities in care. Thus, this research reflects a practical approach to prevention. Our focus on economic costs is innovative, providing data to address the potential cost-savings of SLCBT intervention in reducing health care costs and indirect costs of parental missed work time. Our community recruitment approach provides an efficient way of reaching a broad but targeted population of parents with IBS and greatly increases external validity.

In conclusion, if successful, this study has the potential to provide a model for a preventive intervention for a wide range of pediatric health problems which can impact functioning beyond early childhood in which parental responses are influencing factors. This early intervention may avoid a lifetime trajectory of disability and its associated costs.

Trial status

Recruitment started on October 11, 2023. The current approved protocol is version date 9/1/2023 (submission approval date: 9/27/2023; approved version at final journal submission: 9/1/2023). Recruitment is estimated to be complete by April 2027. Any protocol modifications will be updated on ClinicalTrials.gov and on the participants’ consent form if required.

Availability of data and materials {29}

The datasets that will be generated by this study will be made available in the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) data repository DASH ( https://dash.nichd.nih.gov/ )

Abbreviations

Social learning and cognitive behavioral therapy

Educational web-based safety comparison condition

Functional abdominal pain disorder

Health-related quality of life

Randomized controlled trial

REsilient Active CHildren

Seattle Children’s Hospital

Research Electronic Data Capture

Irritable Bowel Syndrome Symptom Severity Scale

Adult Responses to Children’s Symptoms

Generalized Anxiety Disorder scale

Pain Catastrophizing Scale

Positive and Negative Affect Schedule

Multidimensional Scale of Perceived Social Support

Children’s Somatic Symptoms Inventory

Pediatric Quality of Life Inventory—Short Form

Client Service Receipt Inventory

Treatment Evaluation Inventory—Short Form

Multiple Imputations with Changed Equations

Medical Expenditure Panel Survey

Safety Monitoring Committee

Mechanic D. Sex, illness, illness behavior, and the use of health services. Soc Sci Med. 1978;12:207–14.

Google Scholar

Gerson MJ, Schonholtz J, Grega CH, Barr DR. The importance of the family context in inflammatory bowel disease. Mt Sinai J Med. 1998;65(5–6):398–403.

CAS PubMed Google Scholar

Korterink JJ, Diederen K, Benninga MA, Tabbers MM. Epidemiology of pediatric functional abdominal pain disorders: a meta-analysis. PLoS ONE. 2015;10:e0126982.

Article PubMed PubMed Central Google Scholar

Saps M, Seshadri R, Sztainberg M, Schaffer G, Marshall BM, di Lorenzo C. A prospective school-based study of abdominal pain and other common somatic complaints in children. J Pediatr. 2009;154(3):322–6.

Article PubMed Google Scholar

Di Lorenzo C, Colletti RB, Lehmann HP, Boyle JT, Gerson WT, Hyams JS, et al. Chronic abdominal pain in children: a technical report of the American Academy of Pediatrics and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. J Pediatr Gastroenterol Nutr. 2005;40(3):249–61.

Walker LS, Garber J, Greene JW. Somatization symptoms in pediatric abdominal pain patients: relation to chronicity of abdominal pain and parent somatization. J Abnorm Child Psychol. 1991;19(4):379–94.

Article CAS PubMed Google Scholar

Youssef NN, Murphy TG, Langseder AL, Rosh JR. Quality of life for children with functional abdominal pain: a comparison study of patients’ and parents’ perceptions. Pediatrics. 2006;117(1):54–9.

Varni JW, Bendo CB, Nurko S, Shulman RJ, Self MM, Franciosi JP, et al. Health-related quality of life in pediatric patients with functional and organic gastrointestinal diseases. J Pediatr. 2015;166(1):85–90.

van der Veek SM, Derkx HH, de Haan E, Benninga MA, Boer F. Abdominal pain in Dutch schoolchildren: relations with physical and psychological comorbid complaints in children and their parents. J Pediatr Gastroenterol Nutr. 2010;51(4):481–7.

Shelby GD, Shirkey KC, Sherman AL, Beck JE, Haman K, Shears AR, et al. Functional abdominal pain in childhood and long-term vulnerability to anxiety disorders. Pediatrics. 2013;132(3):475–82.

Warschburger P, Hanig J, Friedt M, Posovszky C, Schier M, Calvano C. Health-related quality of life in children with abdominal pain due to functional or organic gastrointestinal disorders. J Pediatr Psychol. 2014;39(1):45–54.

Claar RL, Walker LS, Smith CA. Functional disability in adolescents and young adults with symptoms of irritable bowel syndrome: the role of academic, social, and athletic competence. J Pediatr Psychol. 1999;24(3):271–80.

Campo JV, Bridge J, Lucas A, Savorelli S, Walker L, Di Lorenzo C, et al. Physical and emotional health of mothers of youth with functional abdominal pain. Arch Pediatr Adolesc Med. 2007;161(2):131–7.

Devanarayana NM, Rajindrajith S, Benninga MA. Quality of life and health care consultation in 13 to 18 year olds with abdominal pain predominant functional gastrointestinal diseases. BMC Gastroenterol. 2014;14:150.

Dinan TG, Cryan J, Shanahan F, Keeling PW, Quigley EM. IBS: an epigenetic perspective. Nat Rev Gastroenterol Hepatol. 2010;7(8):465–71.

Lewis ML, Palsson OS, Whitehead WE, van Tilburg MAL. Prevalence of functional gastrointestinal disorders in children and adolescents. J Pediatr. 2016;177:39-43.e3.

Walker LS, Greene JW. Negative life events and symptom resolution in pediatric abdominal pain patients. J Pediatr Psychol. 1991;16(3):341–60.

Levy RL, Jones KR, Whitehead WE, Feld SI, Talley NJ, Corey LA. Irritable bowel syndrome in twins: heredity and social learning both contribute to etiology. Gastroenterology. 2001;121(4):799–804.

Bonilla S, Saps M. Early life events predispose the onset of childhood functional gastrointestinal disorders. Rev Gastroenterol Mex. 2013;78(2):82–91.

Chiou E, Nurko S. Functional abdominal pain and irritable bowel syndrome in children and adolescents. Therapy. 2011;8(3):315–31.

Levy RL, van Tilburg MA. Functional abdominal pain in childhood: background studies and recent research trends. Pain Res Manag. 2012;17(6):413–7.

Ramchandani PG, Stein A, Hotopf M, Wiles NJ. Early parental and child predictors of recurrent abdominal pain at school age: results of a large population-based study. J Am Acad Child Adolesc Psychiatry. 2006;45(6):729–36.

Van Slyke DA, Walker LS. Mothers’ responses to children’s pain. Clin J Pain. 2006;22(4):387–91.

Walker LS, Claar RL, Garber J. Social consequences of children’s pain: when do they encourage symptom maintenance? J Pediatr Psychol. 2002;27(8):689–98.

Bandura A. Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev. 1977;84(2):191–215.

Fordyce WE. Learning factors in pain. Scand J Rheumatol Suppl. 1989;82:13–7.

Huertas-Ceballos AA, Logan S, Bennett C, Macarthur C. Psychosocial interventions for recurrent abdominal pain (RAP) and irritable bowel syndrome (IBS) in childhood. Cochrane Database Syst Rev. 2014;2:CD003014.

Palermo TM, Eccleston C, Lewandowski A, de Williams AC, Morley S. Randomized controlled trials of psychological therapies for management of chronic pain in children and adolescents: an updated meta-analytic review. Pain. 2010;148(3):387–97.

Levy RL, Langer SL, Walker LS, Romano JM, Christie DL, Youssef N, et al. Cognitive-behavioral therapy for children with functional abdominal pain and their parents decreases pain and other symptoms. Am J Gastroenterol. 2010;105:946–56.

Levy RL, Langer SL, Romano JM, Labus J, Walker LS, Murphy TB, et al. Cognitive mediators of treatment outcomes in pediatric functional abdominal pain. Clin J Pain. 2014;30(12):1033–43.

Levy RL, Crowell MD, Drossman DA, Halpert AD, Keefer L, Lackner JM, et al. Biopsychosocial aspects of functional gastrointestinal disorders: how central and environmental processes contribute to the development and expression of the FGIDs. In: Drossman DA, editor., et al., ROME IV: the functional gastrointestinal disorders. McLean: Degnon Associates, Inc.; 2016.

Malaty HM, Abudayyeh S, Fraley K, Graham DY, Gilger MA, Hollier DR. Recurrent abdominal pain in school children: effect of obesity and diet. Acta Paediatr. 2007;96(4):572–6.

Walker LS, Guite JW, Duke M, Barnard JA, Greene JW. Recurrent abdominal pain: a potential precursor of irritable bowel syndrome in adolescents and young adults. J Pediatr. 1998;132(6):1010–5.

Hayakawa M, Giovanelli A, Englund MM, Reynolds AJ. Not just academics: paths of longitudinal effects from parent involvement to substance abuse in emerging adulthood. J Adolesc Health. 2016;58(4):433–9.

Campbell KJ, Hesketh KD, McNaughton SA, Ball K, McCallum Z, Lynch J, et al. The extended Infant Feeding, Activity and Nutrition Trial (InFANT Extend) Program: a cluster-randomized controlled trial of an early intervention to prevent childhood obesity. BMC Public Health. 2016;16:166.

Reynolds AJ, Ou SR. Generative mechanisms in early childhood interventions: a confirmatory research framework for prevention. Prev Sci. 2016;17(7):794–805.

Rouster AS, Karpinski AC, Silver D, Monagas J, Hyman PE. Functional gastrointestinal disorders dominate pediatric gastroenterology outpatient practice. J Pediatr Gastroenterol Nutr. 2015;62(6):847–51.

Article Google Scholar

Palermo TM, Law EF, Fales J, Bromberg MH, Jessen-Fiddick T, Tai G. Internet-delivered cognitive-behavioral treatment for adolescents with chronic pain and their parents: a randomized controlled multicenter trial. Pain. 2016;157(1):174.

Palermo TM, de la Vega R, Murray C, Law E, Zhou C. A digital health psychological intervention (WebMAP Mobile) for children and adolescents with chronic pain: results of a hybrid effectiveness-implementation stepped-wedge cluster randomized trial. Pain. 2020;161(12):2763–74.

Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377–81.

Drossman DA. Functional gastrointestinal disorders: history, pathophysiology, clinical features and Rome IV. Gastroenterology. 2016;150(6):1262–79.

Levy RL, van Tilburg MA, Langer SL, Romano JM, Walker LS, Mancl LA, et al. Effects of a cognitive behavioral therapy intervention trial to improve disease outcomes in children with inflammatory bowel disease. Inflamm Bowel Dis. 2016;22(9):2134–48.

Levy RL, Langer SL, van Tilburg MA, Romano JM, Murphy TB, Walker LS, et al. Brief telephone-delivered cognitive behavioral therapy targeted to parents of children with functional abdominal pain: a randomized controlled trial. Pain. 2017;158(4):618–28.

Spybrook J, Bloom H, Congdon R, Hill C, Liu X, Martinez A, et al. Optimal design plus empirical evidence. Documentation for the “Optimal Design” software. 2011.

Snow G. Randomization for block random clinical trials. 2022. https://cran.r-project.org/web//packages/blockrand/blockrand.pdf .

Team RC. R: a language and environment for statistical computing. Vienna, Austria: R foundation for statistical computing; 2022.

Francis CY, Morris J, Whorwell PJ. The irritable bowel severity scoring system: a simple method of monitoring irritable bowel syndrome and its progress. Aliment Pharmacol Ther. 1997;11(2):395–402.

Crnic KA, Booth CL. Mothers’ and fathers’ perceptions of daily hassles of parenting across early childhood. J Marriage Fam. 1991;53:1043–50.

Crnik KA, Greenberg MT. Minor parenting stresses with young children. Child Dev. 1990;61:1628–37.

Holly LE, Fenley AR, Kritikos TK, Merson RA, Abidin RR, Langer DA. Evidence-base update for parenting stress measures in clinical samples. J Clin Child Adolesc Psychol. 2019;48(5):685–705.

Walker LS, Levy RL, Whitehead WE. Validation of a measure of protective parent responses to children’s pain. Clin J Pain. 2006;22(8):712–6.

Noel M, Alberts N, Langer SL, Levy RL, Walker LS, Palermo TM. The sensitivity to change and responsiveness of the Adult Responses to Children’s Symptoms in children and adolescents with chronic pain. J Pediatr Psychol. 2015;41(3):350–62.

Kroenke K, Spitzer RL, Williams JB, Monahan PO, Löwe B. Anxiety disorders in primary care: prevalence, impairment, comorbidity, and detection. Ann Intern Med. 2007;146(5):317–25.

Kroenke K, Spitzer RL, Williams JB. The Patient Health Questionnaire-2: validity of a two-item depression screener. Med Care. 2003;41(11):1284–92.

Measures H. Health measures. 2017.

Sullivan M, Bishop S, Pivik J. The pain catastrophizing scale: development and validation. Psychol Assess. 1995;7(4):524.

Cheng S-T, Chen PP, Chow YF. The pain catastrophizing scale-short form: psychometric properties and threshold for identifying high-risk individuals. Int Psychogeriatr. 2019;31(11):1665–74.

Watson D, Clark LA, Tellegen A. Development and validation of brief measures of positive and negative affect: the PANAS scales. J Pers Soc Psychol. 1988;54(6):1063–70.

Zimet GD, Powell SS, Farley GK, Werkman S, Berkoff KA. Psychometric characteristics of the Multidimensional Scale of Perceived Social Support. J Pers Assess. 1990;55(3–4):610–7.

Walker LS, Garber J, Lambert W, Campo JV. Brief assessment of pediatric somatic symptom reporting: development and validation of the Children’s Somatic Symptoms Inventory (CSSI-8). 2011.

Drossman DA, Hasler WL. Rome IV-functional GI disorders: disorders of gut-brain interaction. Gastroenterol. 2016;150:1257–61.

Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory Version 4.0 Generic Core Scales in healthy and patient populations. Med Care. 2001;39(800–812):800-12.

Chan KS, Mangione-Smith R, Burwinkle TM, Rosen M, Varni JW. The PedsQL: reliability and validity of the short-form generic core scales and Asthma Module. Med Care. 2005;43(3):256–65.

Sleed M, Eccleston C, Beecham J, Knapp M, Jordan A. The economic impact of chronic pain in adolescence: methodological considerations and a preliminary costs-of-illness study. Pain. 2005;119(1–3):183–90.

Kelley ML, Heffer R, Gresham F, Elliot S. Development of a modified treatment evaluation inventory. J Psychopathol Behav Assess. 1989;11(3):235–47.

Muthen BO, Muthen LK, Asparouhov T. Regression and mediation using Mplus. Los Angeles, CA: Muthen & Muthen; 2017.

Quality AfHRa. Medical expenditure panel survey. Available from: https://meps.ahrq.gov/mepsweb/ .

Bureau of Labor Statistics USDoL. Consumer price index. 2017. Available from: http://www.bls.gov/cpi .

Fagan AA, Hanson K, Hawkins JD, Arthur M. Translational research in action: implementation of the communities that care prevention system in 12 communities. J Community Psychol. 2009;37(7):809–29.

Meek J, Lillehoj CJ, Welsh J, Spoth R. Rural community partnership recruitment for an evidence-based family-focused prevention program: the PROSPER Project. Rural Mental Health. 2004;29(2):23–8.

Prinz RJ, Sanders MR. Adopting a population-level approach to parenting and family support interventions. Clin Psychol Rev. 2007;27(6):739–49.

Smith A, Anderson M. Social media use in 2018: Pew Research Center. Washington, D.C. 2018.

McKinnon M. Social media use in Canada2018 1/18/2024. https://canadiansinternet.com/2018-social-media-use-canada/ p.

Greenwood S, Perrin A, Duggan M. Social media update 2016. Facebook usage and engagement is on the rise, while adoption of other platforms holds steady: Pew Research Center. Washington, D.C. 2016. https://assets.pewresearch.org/wp-content/uploads/sites/14/2016/11/10132827/PI_2016.11.11_Social-Media-Update_FINAL.pdf .

Arcia A. Facebook advertisements for inexpensive participant recruitment among women in early pregnancy. Health Educ Behav. 2014;41(3):237–41.

Batterham PJ. Recruitment of mental health survey participants using internet advertising: content, characteristics and cost effectiveness. Int J Methods Psychiatr Res. 2014;23(2):184–91.

Chu JL, Snyder CE. Use of a social networking web site for recruiting Canadian youth for medical research. J Adolesc Health. 2013;52(6):792–4.

Fenner Y, Garland SM, Moore EE, Jayasinghe Y, Fletcher A, Tabrizi SN, et al. Web-based recruiting for health research using a social networking site: an exploratory study. J Med Internet Res. 2012;14(1):e20.

Lohse B. Facebook is an effective strategy to recruit low-income women to online nutrition education. J Nutr Educ Behav. 2013;45(1):69–76.

Morgan AJ, Jorm AF, Mackinnon AJ. Internet-based recruitment to a depression prevention intervention: lessons from the Mood Memos study. J Med Internet Res. 2013;15(2):e31.

Pedersen ER, Helmuth ED, Marshall GN, Schell TL, PunKay M, Kurz J. Using Facebook to recruit young adult veterans: online mental health research. JMIR Res Protoc. 2015;4(2):e63.

Ramo DE, Prochaska JJ. Broad reach and targeted recruitment using Facebook for an online survey of young adult substance use. J Med Internet Res. 2012;14(1):e28.

Topolovec-Vranic J, Natarajan K. The use of social media in recruitment for medical research studies: a scoping review. J Med Internet Res. 2016;18(11):e286.

Center PR. Internet, broadband fact sheet 2024 [Available from: https://www.pewresearch.org/internet/fact-sheet/internet-broadband/ .

Download references

Acknowledgements

N/A: We have no acknowledgements for this manuscript.

As stated in the Administrative Information section, this research is supported by the National Institutes of Health through the Eunice Kennedy Shriver National Institute of Child Health and Human Development, P.O. Box 3006, Rockville, MD 20847 [R01HD107704, MPI: Palermo and Levy]. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health

Author information

Authors and affiliations.

School of Social Work, University of Washington, Seattle, WA, USA

Rona L. Levy & Tasha B. Murphy

Cape Fear Valley Medical Center, Fayetteville, NC, USA

Miranda A. L. van Tilburg

University of Washington, Seattle, WA, USA

Center for Functional GI & Motility Disorders, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

Social Development Research Group, University of Washington, Seattle, WA, USA

Margaret R. Kuklinski & Jennifer A. Bailey

Center for Child Health, Behavior, & Development, Seattle Children’s Research Institute, Seattle, WA, USA

Homer Aalfs, Isabel Badillo, Hafsah Diakhate & Tonya M. Palermo

Department of Anesthesiology & Pain Medicine, University of Washington School of Medicine, Seattle, WA, USA

Tonya M. Palermo

You can also search for this author in PubMed Google Scholar

Contributions

RL and TP: principal investigators, conceived the study, developed the proposal, designed the study protocol, and contributed to intervention web content. They also oversee all study activities. TM: study data manager, assisted with protocol design, proposal development, and intervention web design and content; also contributed to data management tasks. MvT: co-investigator, contributed to the study design, proposal development, and intervention web content. MK and JB: co-investigators, contributed to the study design and measures selection and contributed to intervention web content. HA: lead clinical research coordinator, contributed to the study design and intervention web design and content, led database build, conducted all data quality checks and reporting, authored human subjects documents, lead implementation efforts, reviewed data and web development process, responsible for annual risk reporting. IB and HD: clinical research coordinators, helped with protocol implementation, participant recruitment, data collection, and participant tracking to ensure adherence to study and intervention protocols.

Corresponding author

Correspondence to Rona L. Levy .

Ethics declarations

Ethics approval and consent to participate {24}.

This study is a phase II clinical trial and was approved by the Seattle Children’s Hospital (SCH) Institutional Review Board. It is registered at Clinicaltrials.gov (NCT05730491; see online supplementary file https://clinicaltrials.gov/study/NCT05730491). Electronic informed consent will be obtained from all participants (see also section 26a).

Consent for publication {32}

N/A: no identifying images or other personal or clinical details of participants will be presented in reports of the trial results. The study team is willing to provide copies of blank consent forms upon request.

Competing interests {28}

The authors declare that they have no competing interests.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Additional file 1: spirit checklist, rights and permissions.

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Levy, R.L., Murphy, T.B., van Tilburg, M.A.L. et al. Protocol for a randomized controlled trial of an internet-based prevention intervention for young children at-risk for functional abdominal pain. Trials 25 , 549 (2024). https://doi.org/10.1186/s13063-024-08371-8

Download citation

Received : 12 March 2024

Accepted : 05 August 2024

Published : 19 August 2024

DOI : https://doi.org/10.1186/s13063-024-08371-8

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

Irritable bowel syndrome
Abdominal pain
Prevention intervention
Internet interventions
Psychosocial intervention
Social learning
Cognitive behavioral therapy
Risk factors
Illness behavior
Solicitous behavior
Protective factors

ISSN: 1745-6215

Submission enquiries: Access here and click Contact Us
General enquiries: [email protected]

IMAGES

case study of learning disabled child
Teaching the Learning Disabled Child: A methods book that explains how
Case Study on Intellectual Disability
case study of learning disabled child
D'source Case Study
A Case Study of Students with Disabilities

COMMENTS

PDF A Case Study of A Child With Special Need/Learning Difficulty
A CASE STUDY OF A CHILD WITH SPECIAL NEED/LEARNING DIFFICULTY Researcher Vipan Raj Scholar PhD English Sardar Patel University Balaghat,{MP} Perminent Address: Jagota, Teh: Bhella. District: Doda. State/UT: Jammu & Kashmir. Abstract. The study has been conducted to investigate the levels and kind of difficulty the child/student is facing in ...
Understanding, Educating, and Supporting Children with Specific
Fifty years ago, the US federal government, following an advisory committee recommendation (United States Office of Education, 1968), first recognized specific learning disabilities (SLD) as a potentially disabling condition that interferes with adaptation at school and in society.Over these 50 years, a significant research base has emerged on the identification and treatment of SLD, with ...
LEARNING DISABILITY : A CASE STUDY
LEARNING DISABILITY : A CASE STUDY. Dr Yashpal D Netragaonkar. The present investigation was carried out on a girl name Harshita who has been identified with learning disability. She is presently studying at 'Udaan' a school for the special children in Shimla. The girl was brought to this special school from the normal school where she was ...
PDF Case Study: IPP Team Works With 10-Year-Old Child to Improve
Summary. Patty is a 10-year-old student with a seizure disorder, attention-deficit hyperactivity disorder (ADHD), receptive and expressive language impairment, and below-average cognitive functioning. A team of professionals at Patty's school created a plan to help Patty improve her daily communication and social interaction with speech ...
PDF The Transition of Students with Learning Disabilities: A Case Study
Julie, a 17-year-old white female, lived in a large, urban, midwestern city with her parents. She had received special education services since first grade, where she attended a special school for students with physical and learning disabilities. During seventh grade, Julie transferred to an accessible regular junior high.
'We want to be parents like everybody else': stories of parents with
Furthermore, the original vision from Mind the Gap was that the voices of parents with learning disabilities be shared much more broadly with people with learning disabilities themselves, but also professionals and the wider community; with aims to help enhance the impact of research on policy, and to help support the wider goals of reducing stigma and (mis)perceptions of parents with learning ...
Specific Learning Disability
Dyscalculia is a form of math-related disability that involves difficulties with learning math-related concepts (such as quantity, place value, and time), memorizing math-related facts, organizing numbers, and understanding how problems are organized on the page. People with dyscalculia are often referred to as having poor "number sense.".
Child case studies: Leading the way to inclusion
Abstract. This study explored the impact of combining direct instruction with structured field experience, in the form of a child case study, on the beliefs and practices of teacher participants. Seventeen Master of Education candidates, who enrolled in a 'Special Needs and Inclusion' course, conducted child case studies in private schools ...
The relationship among children's learning disabilities, working memory
The relationship between learning disabilities, working memory, and behaviour problems were examined with tailored recommendations for improvement to provide insight for classroom educators. Three children from the United Kingdom, all of whom were 8 years old and presented with symptoms of learning disorders and low working memory profiles ...
PDF CASE STUDIES OF STUDENTS WITH EXCEPTIONAL NEEDS
plexity of that issue. The vicarious experience of the case studies may even cause you to rethink and rewrite your philosophy. CASE STUDY FIVE—ATTENTION DEFICIT/ HYPERACTIVE DISORDER: GABE SILVA (PART I) Susan Sovinski's third year of teaching the second grade was, in her own view, going quite well. Her classroom was quiet, organized, and neat.
Child disability case studies: an interprofessional learning
approaches to learning Child disability case studies: an interprofessional learning opportunity for medical students and paediatric nursing students Karen N Street,1 Nicola Eaton,2 Brenda Clarke,3 Matthew Ellis,1 Patricia M Young,3 Linda Hunt4 & Alan Emond1 CONTEXT We describe an interprofessional learning (IPL) opportunity for pre-qualification medical and paediatric nursing students using ...
PDF Psychological intervention for specific learning disability: A case report
ning learning disabilities disabilities and are well established [7] [7]. Current case work included included two two types types of of treatment treatment modalities modalities i.e. i.e. remedial rem. dial training training and and cognitive cognitive retraining. retraining. The The aim aim of of the the case case work work was was to work on ...
Parents With Disabilities: A Case Study Exploration of Support Needs
Parents With Disabilities: A Case Study Exploration of Support Needs and the Potential of a Supportive Intervention. ... Sword C., Feldman M. (2015). Evaluation of a game-based parent education intervention to increase positive parent-child interactions in parents with learning difficulties. Behavior Analysis: Research and Practice, 15(3-4 ...
A Case Study Analysis of A Child With Learning Disability/Ies
This paper seeks to address the learning disability with an amplified and well-explained case study. The case study will illustrate a practical example of a child with a learning disability through the case to case approach—the causes of learning disability in children and even the medical history behind the learning disorder (Gadow, 2018).
Case study of a child with language impairment and specific learning
Case study of a child with language impairment and specific learning disability. Many school-age children demonstrate significant difficulties in the classroom, in multiple related areas. This case study is about a holistic approach that was implemented in conjunction with other school-based interventions. The student was in the second -grade ...
Child disability case studies: an interprofessional learning
Context: We describe an interprofessional learning (IPL) opportunity for pre-qualification medical and paediatric nursing students using community-based case studies of disabled children and their families. Methods: A total of 160 students were randomly allocated into interprofessional and uniprofessional pairs. Each pair visited a disabled child at home and school and presented their ...
PDF Case Study: Specific Learning Disability
ED 425 Dr. M. La Monte December 13, 2013 The following case study was performed at a public middle school of approximately 900. students in grades six through eight. The school is located in a mostly Latino, working class, neighborhood in Los Angeles, California. For this case study, I analyzed a seventh grade student.
(Pdf) a Case Study of A Child With Special Need/Learning Difficulty
I- Research proposed / Case Study: A Case Study on a actual situation:In this activity I Mr Vipan Raj Sardar Patel University Balaghat,{MP} have taken a real situation of a student/ child of a village, Jagota of tehsil Bhella , District Doda Jammu & Kashmir (India) from class 6th from a government school with special need/learning difficulty ...
(PDF) CASE STUDY ON BLIND CUM LEARNING DISABILITY
The present investigation was carried out on a boy name Harish who has been identified with a nu mber of. disabilities like learning disability, blindness, speech problem. He is presently study ...
Learning Disability A Case Study PDF
Harshita is a student with learning disabilities who was having trouble keeping up in normal school. She has a problem with executive functioning where she forgets things quickly after learning them. She was placed in a special school called Udaan that provides extra support. There, teachers take time to repeat lessons and give positive reinforcement to help Harshita learn at her own pace. In ...
Full article: A qualitative study investigating the experiences of
Introduction. Cerebral palsy is a life-span disability and the most common cause of physical disability in childhood, with a prevalence of 1.6 (1.5, 1.7) per 1000 live births in high-income countries [Citation 1].It is a clinical description for a group of conditions that impact movement and posture resulting from a non-progressive injury or abnormality to the developing brain [Citation 2].
Protocol for a randomized controlled trial of an internet-based
Background Chronic pain often clusters in families, where parents and their offspring both experience chronic pain conditions. Young children of parents with irritable bowel syndrome (IBS) represent an at-risk group for the development of abdominal pain, disability, and excess health care visits in later childhood. Parental solicitous responses to children's expressions of discomfort and ...

‘We want to be parents like everybody else’: stories of parents with learning disabilities

Daniel Foulds

Paul Wilshaw

Introduction

Current project: rationale and design

Ethical review

Participants

Semi-structured interviews

Data analysis

Reflections of the research team

Becoming a parent

Planning for and being ‘ready’ for parenthood

Assumption of incompetence and proving worthiness as parents

Experiences of services

Feeling criticized and let down by services

Being believed in as a parent

Overcoming ‘knock-backs’

Support for rights of parents with learning disabilities

Fathers feel ‘left out’

Contributors

Conflict of interest

A CASE STUDY ANALYSIS OF A CHILD WITH LEARNING DISABILITY/IES

Document Details

Payment Method

Save citation to file

Add to My Bibliography

Child disability case studies: an interprofessional learning opportunity for medical students and paediatric nursing students

Similar articles

Publication types

LinkOut - more resources

A CASE STUDY OF A CHILD WITH SPECIAL NEED/LEARNING DIFFICULTY Researcher

Related Papers

RELATED PAPERS

RELATED TOPICS

Protocol for a randomized controlled trial of an internet-based prevention intervention for young children at-risk for functional abdominal pain

Trial registration

Introduction

Objectives {7}

Trial design {8}

Methods: participants, interventions, and outcomes

Eligibility criteria {10}

Who will take informed consent? {26a}

Additional consent provisions for collection and use of participant data and biological specimens {26b}

Interventions

Intervention description {11a}

Social learning and cognitive behavioral therapy (SLCBT) condition

Criteria for discontinuing or modifying allocated interventions {11b}

Strategies to improve adherence to interventions {11c}

Relevant concomitant care permitted or prohibited during the trial {11d}

Provisions for post-trial care {30}

Outcomes {12}

Participant timeline {13}

Sample size {14}

Recruitment {15}

Assignment of interventions: allocation

Concealment mechanism {16b}

Implementation {16c}

Assignment of interventions: blinding

Procedure for unblinding if needed {17b}

Data collection and management

Plans to promote participant retention and complete follow-up {18b}

Data management {19}

Confidentiality {27}

Plans for collection, laboratory evaluation, and storage of biological specimens for genetic or molecular analysis in this trial/future use {33}

Statistical methods

Analyses by aims

Interim analyses {21b}

Methods for additional analyses (e.g., subgroup analyses) {20b}

Methods in analysis to handle protocol non-adherence and any statistical methods to handle missing data {20c}

Plans to give access to the full protocol, participant-level data, and statistical code {31c}

Oversight and monitoring

Composition of the data monitoring committee, its role and reporting structure {21a}

Adverse event reporting and harms {22}

Frequency and plans for auditing trial conduct {23}

Plans for communicating important protocol amendments to relevant parties (e.g., trial participants, ethical committees) {25}

Dissemination plans {31a}

Limitations

Trial status

Availability of data and materials {29}

Abbreviations