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This chapter reviews qualitative research on parenting children with disabilities published over the last 50 years to explore whether shifts in academic discourse and changes in professional training have affected research on parenting and/or the experiences of parents who are the subject of such research.

An extensive literature search was conducted, and 78 peer-reviewed, qualitative studies on the experience of parenting a child with a disability were included in the sample. Themes were extracted from the reviewed literature and compared across decades.

The findings of the present review suggest that some aspects of the parenting experience have changed very little. In particular, parents continue to experience negative reactions such as stress and anomie, especially early in their children’s lives, and socially imposed barriers such as unhelpful professionals, and a lack of needed services continue to create problems and inspire an entrepreneurial response. In addition, stigmatizing encounters with others continue to be a common occurrence. In contrast to earlier decades, studies conducted in more recent years have begun to use the social model of disability as an analytic frame and also increasingly report that parents are questioning and challenging the concept of “normal” itself.

Additional improvements are needed in professional education and services to reduce the negative reactions experienced by parents of children with disabilities.

The findings of this meta-analysis can serve as a guide to future research on parenting children with disabilities.

This chapter explores the parental experiences of 21 mothers of young and/or adult children who have been diagnosed with developmental disabilities (DD). Specific attention is paid to mothers’ reflections on marginalization, stress, and resiliency. Intersectionality of marginalization was explored with a select number of participants who identified with minority racial groups, with the LGBTQ community, and/or as a single or young mother. Data were collected via semi-structured interviews and analyzed using the constant comparative method. Eighteen mothers reported experiencing elevated levels of stress specifically related to challenges associated with DD; the need for greater investments of time and money was emphasized. However, nearly every participant highlighted stories of resilience and acclimation to these challenges associated with raising a child with DD. Thirteen mothers overtly discussed experiences of discrimination and marginalization. Some of these scenarios included being stared at or criticized in public, being excluded from social events, and facing discrimination within school settings. Select participants from marginalized backgrounds (being as a young parent, or as Black, single, lesbian, bisexual, and/or transgender) provided insight into how layers of marginalization negatively impacted their parental experiences. These personal accounts provide additional evidence that mothers of children with DD experience courtesy stigma. In addition, they provide a holistic illustration of motherhood experiences that does not center on only negative or positive aspects. Finally, the reports of mothers who identified with multiple marginalized identities strengthen the call for additional empirical focus on intersectionality as it concerns mothers of children with DD.

The number of parents with a learning disability is growing rapidly, as the closure of institutions and the rise of community living encourage this population to take on roles that were previously denied to them (DoH, 2001). People with a learning disability are seen as people first, with the right to be a parent and raise a child, a valued role in society. The rise in the number of parents with a learning disability can also be attributed to the discontinuation of enforced sterilisation and increasing opportunities to form relationships in which consensual sex is accepted and supported (Martin & Ticktum, 1987). Accordingly, the research on the ability of parents with learning disability to provide adequate parenting is expanding. However, research on the effect on the child of having a parent with a learning disability is still limited. This article will first look at the literature on factors affecting the ability of parents with a learning disability to care for their children adequately. The effects of having a parent with a learning disability will then be considered, and finally the implications for clinical practice will be outlined.

According to international conventions and UK government policy, parents with intellectual disability have a right to have children and should have access to support to help them bring them up successfully. Government good practice guidance sets out what form that support should take, but in practice parents with intellectual disability are still disproportionately at risk of having their children taken from them. This article reviews the challenges parents face in holding on to their children and the support they need, both from professionals and from the wider extended family where appropriate. The importance of having access to independent advocacy, especially in child protection or court proceedings is highlighted; such advocacy is not widely available, despite recent policy commitments in this area.

Research on caregiving has been considering the positive effects experienced by the mothers of children with disabilities. This paper aims to examine whether positive perceptions mediate the relationships between coping strategies used and psychological well-being among mothers of children with intellectual disabilities.

The study opted for a quantitative approach that includes a correlation research design to examine the relationships between the variables of coping, positive perceptions and well-being among mothers of children with intellectual disabilities attending special schools in the metropolitan city Bengaluru, India. The four-factor structure of Brief COPE examined were active avoidance coping, problem-focussed coping, positive coping and religious-denial coping. “Positive perceptions” refer to the positive contributions for the mother from the experiences of raising a child with intellectual disability. Mediation analysis explored the relationship between the variables.

Problem-focussed coping was the most commonly reported coping factor and was associated with higher levels of well-being. Active-avoidance coping was the least commonly reported coping strategy. Positive perceptions partially mediated the relationship between the four coping factors and maternal well-being. These findings indicate that positive maternal perceptions have important implications for the employment of effective coping strategies that are associated with enhancement of psychological well-being.

The focus on positive perceptions would help in understanding the use of coping strategies and planning of support services or interventions. The positive mental health of mothers paves the way for positive developments in the child’s physical and psychological health.

Using queer/crip theory as a frame, I examine the narratives of 17 mothers raising children with disabilities.

Results show that the mothers’ narratives of an imagined future for their children often involve the idea of success in terms of production and reproduction. However, some mothers do question this idea of normalcy, challenge deeply seated ideas about neoliberal inclusion, and reframe disability as a different way of existing as opposed to a deficient way of being.

The focus of this paper is on how mothers imagine different kinds of social arrangements. Some mothers, instead of embracing success as narrowly defined under neoliberalism, challenge the idea and instead offer queer narratives of parenting. This study illustrates how counternarratives can be constructed to resist prevailing narratives of disability as deficiency.

India has one of the more progressive disability frameworks in the developing world which tends to adopt western philosophies and principles (e.g. parent participation and advocacy) which to some degree mirrors the type of service delivery in the UK. The purpose of this paper is to adopt a cross-cultural perspective to explore caregiving amongst parents caring for a child with intellectual/developmental disabilities in India.

Three focus groups were used to interview parents at Action for Autism (AFA) located in Delhi, India. The focus groups explored how disability is encountered within an Indian context.

Two main themes were identified in the parents narratives which were “making the decision to get help” and “seeing disabilities in from a new perspective”. Family members played an important role in the decision to get help and acted as a platform for mothers to explore their own concerns. Seeing disability from a new perspective was a four stage process which included initially accepting the diagnosis and their child; regaining control through parenting skills training; witnessing positive changes in their children and themselves and reaping personal benefits as a result of their involvement with AFA.

The research is very small scale and focused on parents in a specific organisation, as a consequence the results cannot be generalised.

The discourses of these individuals do provide a useful insight into the provision of services to children in India and provide a starting point for cross-cultural understanding of parenting children with disabilities.

This study aims to explore the cultural context of care‐giving amongst South Asian communities caring for a child with intellectual disabilities in the United Kingdom.

In the context of the United Kingdom's Children's Intellectual Disability Services, the study set out to develop a culturally sensitive account of Sikh and Muslim parents' experiences of caring for a child with intellectual disabilities. Focus groups were conducted with parents from Sikh and Muslim support groups who were all accessing intellectual disability services for their children. Transcripts were analyzed using interpretative phenomenological analysis, a qualitative technique.

Three master themes emerged from the analysis which were: Making sense of the disability; Feeling let down by services and Looking to the future. These themes reinforce findings from previous research particularly in relation to difficulties when making sense of the disabilities and difficult interactions with services.

The study makes recommendations for service delivery to ethnic minority groups including being aware of intra‐group variations in the interpretations and responses of South Asian parents.

Ultimately, the study makes recommendations for developing culturally sensitive support and interventions for ethnic minority groups which is important given the increase in multi‐ethnic populations in the UK.

This paper presents an updated summary of a meta-analysis of qualitative research on parenting children with disabilities published over the last 50 years. In this summary, we explore whether shifts in academic discourse and changes in professional training are reflected in research on parenting and/or the experiences of parents who are the subject of such research. The detailed findings of the original analysis were published in Volume 7 of Research in Social Science and Disability.

An extensive literature search was conducted, and 79 peer-reviewed qualitative studies on the experience of parenting a child with a disability were included in the sample. Themes were extracted from the reviewed literature and compared across decades.

The findings of the present review suggest that some aspects of the parenting experience have changed very little. In particular, parents continue to experience negative reactions such as stress and anomie, especially early in their children’s lives, and socially imposed barriers such as unhelpful professionals and a lack of needed services continue to create problems and inspire an entrepreneurial response. In addition, stigmatizing encounters with others continue to be a common occurrence. In contrast to earlier decades, studies conducted in more recent years have begun to use the social model of disability as an analytic frame and also increasingly report that parents are questioning and challenging the concept of “normal” itself.

Additional improvements are needed in professional education and services to reduce the negative reactions experienced by parents of children with disabilities. The findings of this meta-analysis can serve as a guide to future research on parenting children with disabilities.

The differential impact of young adult diagnosis on families during the period of transition from school to adult life was examined. Participants were parents of 246 young adults with severe learning disability aged 18‐26. Young adults were classified into four diagnostic groups: autism (N = 30), Down's syndrome (N = 68), cerebral palsy (N = 95) and an undifferentiated learning disability group (N = 53). Research questions pertained to parent expectations about their young adults' transition to living and working environments post high school. Parental satisfaction and worries were also assessed. The results indicated more community expectations of work for young adults with Down's syndrome, and more restrictive expectations for young adults with autism, including more expectations that young adults with autism would move out of the family home into a residential environment. Parents of young adults with autism also worried significantly more about various aspects of transition than other parent groups.