Groups for Parents with Intellectual Disabilities: A Qualitative Analysis of Experiences

Gustavsson, Marie; Starke, Mikaela

doi:10.1111/jar.12258

Cited by 6 publications

(4 citation statements)

References 21 publications

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“…In this study, the relationality of support was clearly displayed in activities undertaken within social community groups. This form of support is well-described in literature (Dodds & Singer, 2018;Gustavsson & Starke, 2017), which emphasises that this is an important way for providing role model of fatherhood. Positive neighbourly relations are vital, because it supports that social inclusion of fathers with intellectual disabilities is possible.…”

Section: Discussionmentioning

confidence: 86%

“…Parents can share negative and positive experiences, provide role models, and obtain information (Franklin et al, 2021; Gustavsson & Starke, 2017; Strnadova et al, 2019; Tarleton & Ward, 2007). Parents' isolation is also reduced (Tarleton et al, 2006) and no superior‐superordinate relationships are established (Gustavsson & Starke, 2017). Thus, parents were empowered to act as educators and consultants for services, and become not only support recipients, but also supporters (parental transformation) (Dodds & Singer, 2018; Tarleton et al, 2006).…”

Section: Introductionmentioning

confidence: 99%

“…Support groups can provide much‐needed connections between parents with intellectual disabilities who face similar challenges. Parents can share negative and positive experiences, provide role models, and obtain information (Franklin et al, 2021; Gustavsson & Starke, 2017; Strnadova et al, 2019; Tarleton & Ward, 2007). Parents' isolation is also reduced (Tarleton et al, 2006) and no superior‐superordinate relationships are established (Gustavsson & Starke, 2017).…”

Section: Introductionmentioning

confidence: 99%

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Support as described by fathers with intellectual disabilities

Ćwirynkało

Parchomiuk

2022

Research Intellect Disabil

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Background Many fathers with intellectual disabilities experience some difficulties in fulfilling their parenting role due external factors. The quality of their parenting depends on various factors, including the availability and adequacy of support. The aim of this study was to understand the lived experiences associated with social support of fathers with intellectual disabilities. Method The organisation of the research and data analysis were carried out in accordance with Interpretative Phenomenological Analysis. Semi‐structured interviews were conducted with 20 fathers with intellectual disabilities. Results In the analysis, three interrelated themes emerged: Discrepancies between needs and provision of support; Discriminatory practices and feeling (dis)empowered; and Recognition of support. Conclusions Fathers described negative aspects of their experiences that were not conducive to strengthening paternal competences and led to a sense of loneliness. Positive aspects also emerged, indicating that fathers were determined to fulfil their role despite the lack of adequate support for their needs.

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Section: Discussionmentioning

confidence: 86%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Support as described by fathers with intellectual disabilities

Ćwirynkało

Parchomiuk

2022

Research Intellect Disabil

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“…The highest number of abstracts were found to cover medical-linked people and groups as allies (31 abstracts), using terms and phrases such as professionals [144][145][146][147][148][149][150], negative views of health professionals [151], rehabilitation professionals [152], rehab psychology [64], caregivers [153,154], social workers [155], social work misses the opportunity to be an ally [156], social work can support disabled people and their allies [157], patients [158,159], clinicians [159][160][161], practitioners [162,163], physicians [164,165], occupational therapists [166,167], physiatrists [168], physiotherapists [169], adapted physical education [170], medical community [171], and medical students [172].…”

Section: Years Number Of Abstractsmentioning

confidence: 99%

Coverage of Allies, Allyship and Disabled People: A Scoping Review

Wolbring,

Lillywhite

2023

Societies

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Disabled people face many problems in their lived reality, as evidenced by the content of the UN Convention on the Rights of Persons with Disabilities. Disabled people are constantly engaged in activism to decrease their problems. However, disabled people cannot do all the work by themselves and need allies (who can be so-called non-disabled people or disabled people of a different background to other disabled people) given the many barriers disabled people face in being activists, given the precarious lived reality of many, and given the many problems in need of solving. At the same time, the expectations linked to being an authentic ally of disabled people pose many challenges and stressors and a danger of burnout for the ally. Therefore, the aim of this study was to better understand the academic coverage of allyship and allies in relation to disabled people in general, and specifically the coverage of challenges, stressors, and danger of burnout for allies of disabled people. To fulfill this aim, we performed a scoping review of academic abstracts and full texts employing SCOPUS, the seventy databases of the EBSCO-HOST and the Web of Science. Of the 577 abstracts, covering allies and allyship in relation to disabled people that were downloaded, 306 were false positives. Of the 271 relevant ones, the content of six abstracts suggested a deeper coverage of allyship/allies in the full texts. Within the full texts, two mentioned ally burnout and four mentioned challenges faced by allies. Among the 271 abstracts, 86 abstracts mentioned allies without indicating who the allies were, 111 abstracts mentioned specific allies with technology as an ally being mentioned second highest. Sixty-three abstracts covered specific topics of activism for allies. Furthermore, although searching abstracts for equity, diversity, and inclusion (EDI) related phrases, terms, and policy frameworks generated sixty-three abstracts, only three abstracts mentioned disabled people. Abstracts containing science and technology governance or technology focused ethics fields terms did not generate any hits with the terms ally or allies or allyship. Searching abstracts and full texts, phrases containing ally or allies or allyship and burnout had 0 hits, ally terms with stress* generated four hits and phrases containing anti-ableism, or anti disablism, anti-disableist, anti-disablist, anti-ablist, or anti-ableist with ally terms had 0 hits. Our findings show many gaps in the coverage of allies and allyship in relation to disabled people especially around the barriers, stressors, and burnout that authentic allies of disabled people can face. These gaps should be filled given that disabled people need allies and that there are many challenges for being an authentic disabled or non-disabled ally of disabled people.

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Recent Trends and Future Directions in Research Regarding Parents with Intellectual and Developmental Disabilities

Feldman

Aunos

2020

Curr Dev Disord Rep

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Purpose of Review This report updates research on parents with IDD and their children published since 2014. Recent Findings Since 2014, a plethora of studies using large administrative databases in different countries support a contextual approach to understand why parents with IDD and their children may have worse outcomes than other families. In most studies, increased risk of ill health in women with IDD and health and developmental problems in their children were fully or partially accounted for by socioeconomic and psychosocial hardships. New research has found that pregnant women with IDD tend to have risk factors for pregnancy, birth, and postpartum complications that may contribute to adverse child outcomes. Intervention research is gradually becoming more contextualized. Summary More studies are needed on multicultural aspects of parenting, programs that could help parents with IDD overcome social and health disadvantages, comprehensive and coordinated service models that start during pregnancy, innovative parent support arrangements, parenting education for teens and young adults with IDD, use of technology, and dissemination and implementation of evidence-based programs.Keywords Parents with intellectual and developmental disabilities . At-risk children . Administrative datasets . Contextual model . Vulnerable parent groups1 This term will be used to include persons with study labels of intellectual disability, intellectual or cognitive impairment, learning difficulties, learning disabilities (UK), or borderline intellectual levels. Many of the studies in this area use different definitions and measures to determine the intellectual level of their participants and rarely document formal ID diagnosis. This article is part of the Topical Collection on Intellectual Disability

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Groups for Parents with Intellectual Disabilities: A Qualitative Analysis of Experiences

Abstract: The group provided the parents with the opportunity to meet both other parents and two social workers. The group gave a greater number of social relations, adding to the parents' social capital and helping to reduce social isolation.

Cited by 6 publications

References 21 publications

Support as described by fathers with intellectual disabilities

Support as described by fathers with intellectual disabilities

Coverage of Allies, Allyship and Disabled People: A Scoping Review

Recent Trends and Future Directions in Research Regarding Parents with Intellectual and Developmental Disabilities

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