Managing Stigma - the Experiences of Parents of Children with Intellectual Disability

Parents with intellectual disabilities face a disproportionately high risk of having their children removed from their care. Independent advocates can play an important role in supporting parents with intellectual disabilities through child protection proceedings. This study explored the lived experiences of both parents with intellectual disabilities and the advocates who supported them in the context of child protection proceedings. Four superordinate themes emerged from the data (power and control; justice and fairness; compassion and empathy; and resilience), underpinned by fourteen themes and three subthemes. The findings revealed positive and effective relationships between advocates and parents with intellectual disabilities and offered insights into this relationship. They also provided new information about the lived experiences of advocates themselves and the challenges they face. Points of interest Many parents with intellectual disabilities have their children taken away. Independent advocates help parents to understand why this happens and to have their voices heard. The independent advocate’s job is complex, requiring many different skills. They receive no funding from the state. Both parents with intellectual disabilities and advocates suffer feelings of powerlessness, due to isolation, lack of support and the challenges of going through child protection proceedings. Advocates can help to improve the experiences of parents with intellectual disabilities who go through the child protection process.

This thesis explores the experiences of parents with an intellectual disability who participated in a family support program over a twelve month period. It also explores the impact of this program on their ability to effectively parent and protect their children. Parents with an intellectual disability are overly represented within child protection notifications and investigations. This group of parents experience heightened surveillance, as do other marginalised groups, and having a disability becomes a form of oppression in a hostile environment (Read, 2000). Others liken their lived experiences to a form of apartheid (Goggin and Newell, 2005) where the social construction of disability produces negative perceptions and therefore responses by social institutions and systems.Limited attention has been paid to the needs and experiences of parents with an intellectual disability leaving them increasingly vulnerable in the community. Such parents are typically assumed to be 'bad' parents and children usually removed without accurate or appropriate assessment of risk and needs. Relatively few research programs have explored the issues for these parents and even fewer practice options have been available within the general field of family support. This study addresses this gap.This qualitative study explored the experiences of five families where one or both parents had an intellectual disability and where there was increased risk of notification to and or involvement of child protection authorities. All the families participated in a family support program specifically designed for parents with an intellectual disability over a twelve month period. Using in depth interviews with the parents and the practitioners who provided the interventions this study revealed important findings for future practice with this group. The thesis also discusses the implications for policy, practice and future research.

The Journal of Social Inclusion (JoSI) is a peer-reviewed academic journal that will contribute to current knowledge and understanding of the social processes that marginalise individuals, families and communities. The journal will be published bi-annually under the guidance of an International Editorial Advisory Board. The Journal of Social Inclusion (JoSI) is an initiative of the School of Human Services and Social Work, Griffith University.

Little is known about the lives of parents with intellectual disabilities from minority ethnic communities. Previous research suggests that what it means to live with intellectual disabilities varies across cultural contexts. The current research aimed to explore how cultural values and practices impact upon the experiences of parents with intellectual disabilities within the Bangladeshi community in London, England. Six members of the Bangladeshi community, four Bangladeshi parents with intellectual disabilities and four of their family members were interviewed. Thematic analysis was used to identify key themes. Both parenting and intellectual disability are thought about in this community in ways that make parenting more accessible for people with learning disabilities, but also create tensions to be negotiated. Bangladeshi family carers face dilemmas balancing the benefits and risks of promoting parenting for sons and daughters with intellectual disabilities, particularly in the context of service principles of autonomy and informed consent.

ObjectivesThis study aimed to explore the experiences of parents caring for children with intellectual and developmental disabilities (IDD) during the UK national lockdown in spring 2020, resulting from the COVID-19...

L'A. examine la situation des meres d'enfants handicapes dans le contexte actuel de valorisation des enfants « parfaits ». Elle presente un certain nombre de donnees collectees aux Etats-Unis entre 1993 et 1995. Elle souligne que, dans ce pays, la reproduction biologique est envisagee comme une production de type economique. Dans cette perspective, les meres d'enfants handicapes apparaissent comme des productrices de marchandises de mauvaise qualite. Elle identifie la « mere reelle » a une personne qui sait, d'une part, percevoir les besoins et la nature de son enfant et, d'autre part, affronter le diagnostic medical. Elle insiste sur la detresse emotionnelle des meres face au handicap de leur enfant. Elle critique les representations de la normalite dans le contexte culturel americain.

Accessible Summary Becoming an adult can be a difficult time. We wanted to find out what it is like for parents who have a son or daughter with an intellectual disability. Ten parents were interviewed. They were asked questions about being in their family, helping their son or daughter, and support services for people with an intellectual disability and their parents. Things that mattered the most to parents: Many parents were confused about what to do when their son or daughter became eighteen years old. They were worried about the future. Independence was important. Parents found it hard sometimes helping their son or daughter to be more independent. Getting more help and talking to other parents. Services and staff can help by: Working together in a better way to help parents. Setting up support groups for parents to talk together and learn from each other. Writing better plans with every person with an intellectual disability. AbstractBackgroundTransition to adulthood is an important time for young people and may be a particularly challenging time for people with intellectual disabilities. However, there has been little research in the UK regarding the experiences of parents who have son or daughter with an intellectual disability transitioning to adulthood.MethodThe study used interpretive phenomenological analysis to explore the lived experiences of ten parents who had a son or daughter (aged 18–25 years) with an intellectual disability. Half of the sample also had a diagnosis of autism.ResultsThree superordinate themes were generated from the data: (a) Transition: The Good, the Bad and Unknown; (b) Striving for Independence; and (c) Supporting the Supporters. Parents experienced many difficulties and uncertainty related to their role, their son/daughter's independence, navigating services for their son/daughter and accessing support for themselves.ConclusionsIncreased collaboration and consistency from statutory services is required in addition to providing emotional support to parents and facilitating parent support networks.

Parents of children with intellectual disabilities could experience difficulties associated with their care. Yet, insight into individual experiences is inadequate to guide effective responses to the needs of parents and their sons and daughters with intellectual disability. This study sought to explore the experiences of parents of children with intellectual disability with the aim of making these experiences visible to guide the design and provision of support services for the parents and their children. In-depth interviews were conducted with 20 parents of children with intellectual disability between the ages of 4 and 15 years residing in the Ashanti Region of Ghana. Data were analyzed using qualitative content analysis to explore themes that describe the experiences of the parents. The study found that parents of intellectually disabled children encounter challenges looking after their children due to the negative perceptions associated with having such children. Financial costs and managing behavioral challenges of intellectually disabled children were also major sources of stressors for parents. Although informal support and assurances from professionals alleviated parental stress and gave them some hope about the future of their children, these support services seem inadequate. A more structured support programme that includes financial empowerment of the parents and recognizes the importance of early detection and intervention practices is needed.

ABSTRACTBackground People with intellectual disability have a limited understanding of dying and death. The role of parents in developing the understanding of their son or daughter with intellectual disability about these concepts is unclear. This study aimed to explore parental experiences when talking with their son or daughter with intellectual disability about dying and death.Method Four participants were interviewed about how they discussed dying and death with their son or daughter with intellectual disability. Thematic analysis was used to interpret the findings.Results Parents did more than talk to their son or daughter about death; they involved them in dying and death experiences. Parents’ motivations influenced the way they included their son or daughter in these experiences.Conclusions The parents played an important role in providing learning experiences for their son or daughter with intellectual disability about dying and death.

This study aims to contribute valuable insights into the experiences of parents raising children with intellectual disabilities, offering a holistic understanding of the complexities surrounding parenting stress and coping strategies. This qualitative research study explores the intricate dynamics of parenting stress and the coping strategies employed by parents in families raising children with intellectual or developmental disabilities, historically referred to as "mentally retarded children." The study employs a phenomenological research design, delving into the lived experiences of parents who navigate the unique challenges posed by their children's disabilities. Thematic analysis was employed to identify recurring themes and patterns within the interview transcripts. Multiple data sources, including interviews and participant observations, were triangulated to enhance the credibility and validity of the findings. The results of this study illuminate the diverse sources of parenting stress experienced by these families, ranging from emotional and behavioral challenges exhibited by the children to financial strain, societal stigma, and concerns about the future. Furthermore, the coping strategies employed by parents were found to be equally diverse, encompassing seeking social support, accessing professional assistance, practicing self-care, advocacy, problem-solving, fostering resilience, and more. These coping mechanisms were shown to significantly influence the physical and mental well-being of parents, their family relationships, work-life balance, and social connectedness.

Definitions of adulthood for people with intellectual disability are often complicated, with milestones being markedly different for this population. This is then associated with difficulties for both the people with intellectual disability and their parents, who are closely involved in this transitional period. This paper aims to report on parents’ perception and experience of adulthood for their son or daughter with an Intellectual Disability (ID). Qualitative data were collected through 30 − 60-minute phone interviews with eight parents of a person with an intellectual disability aged 15 or older (mean parent age = 60; mean child age = 23). Thematic analysis found that Perception of Adulthood encompassed themes of Independence and Normality. Experiences of Adulthood were categorised under Government Services, Responsibility and Social Supports. Findings of this research provide information for the growing literature around adulthood for people with intellectual disability, as well as how to amend policies and procedures for services that cater to people with intellectual disability and their parents during this transition.

This article considers the response of the Disability Royal Commission (the Commission) to the experiences of the estimated 21,000 Australian parents with intellectual disabilities and their children. Research shows that interlocking complex social disadvantage and ableist professional attitudes toward parenting by people with intellectual disabilities persist, leading to very high rates of child protection and child removal. The approach taken by the Commission to examination of violence, abuse, neglect, and exploitation against parents with disabilities as a group led to the invisibility of parents with intellectual disabilities within the Final Report. The life course approach was narrowly conceived and did not fully capture reproductive justice across the life course. The issue of parenting and child protection contact was primarily considered in relation to First Nations families, which brought critical attention to some aspects of systemic violence and abuse, but issues and experiences of non-Indigenous parents with intellectual disabilities were absent. We argue that these and other flaws prevented the Commission from making important recommendations in relation to legal and policy reform to uphold the rights of people with intellectual disabilities to become parents and to receive the support they need for parenting over the life course.

Background:It is predicted that over the next 30 years, there will be a significant increase in the number of elderly parents who care for their children with intellectual disability. This paper is part of a larger qualitative study which investigated the unpleasant experiences of these parents.Materials and Methods:A phenomenological approach was adopted and data were collected through unstructured in-depth interviews with elderly parents of children with intellectual disability. The data were analyzed using Colaizzi's seven-step method.Results:“Bitterness” is one of the four emergent themes extracted in this study which has five theme clusters: inappropriate behavior toward the child in the society, the society's failure to support the child with intellectual disability, sorrows experienced by parents, the child's problems, and barriers in the care of the child with intellectual disability. One significant barrier in the last theme cluster is limitations due to aging.Conclusions:The findings of this study suggest that the elderly parents of children with intellectual disability experience many sorrows and unpleasant feelings, but they mostly consider the social factors as the cause of problems and not the presence of the child. The results also indicate that older parents cannot look after the child as before in their old age; so, future well-designed studies are required for identification of the process of supporting them.

The purpose of this study was to describe and analyze the beliefs and experiences of South Korean parents of former students with intellectual disabilities regarding Integrated Physical Education (PE). The research design was a multiple case study whereby four mothers of former students with intellectual disabilities were interviewed via Zoom technology. The data were transcribed in the Korean language, then translated to both Korean and English languages, and analyzed by two researchers using the thematic data analysis method. Two major themes were identified: (a) perspectives about integrated PE and (b) barriers to inclusivity. We found South Korean parents of former students with intellectual disabilities were not satisfied with the South Korean's educational system, including integrated PE. Nonetheless, the parents were supportive of their former students' engaging in physical activity and/or sports programs.

BackgroundParents of adolescents with intellectual disability experienced stress caused by challenges that come from having such adolescents. Those challenges affected the parents physically and emotionally, depending on the severity of the adolescent’s intellectual disability. Having an adolescent with an intellectual disability becomes a burden if the challenges were not resolved.AimThis study aimed to explore and describe the experiences of parents of adolescents with intellectual disability in Giyani.SettingThis study was conducted at the participants’ homes in Giyani, Limpopo province, South Africa.MethodsA qualitative, exploratory, descriptive and contextual design was utilised. The main question was ‘How is it to have an adolescent with intellectual disability?’ Eight purposively sampled parents participated, and data were collected through in-depth interviews, observations and field notes. Data were analysed by means of thematic coding and an independent coder was consulted.ResultsFour themes were identified. The study revealed that parents of adolescents with intellectual disability experienced negative emotional responses. Most parents reported a lack of support from family members and the community. They also reported caring challenges, yet some showed positive coping mechanisms.ConclusionParents of adolescents with intellectual disability experienced various challenges in caring for these children. A collaborative approach from relevant stakeholders could have a positive impact in supporting the parents of adolescents with intellectual disabilities.