Everyday practices of exclusion/inclusion: women who have an intellectual disability speaking for themselves?

Welsby, Janette; Horsfall, Debbie

doi:10.1080/09687599.2011.618731

Cited by 37 publications

(41 citation statements)

References 16 publications

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“…It is essential to visualise the demands of intellectually disabled people and look for spaces where they can share their needs and projects with the people they live with. Sexual relationships, living as a couple or having a family must not be considered as being just another mirage of inclusion (Welsby & Horsfall ).…”

Section: Resultsmentioning

confidence: 99%

‘My great hope in life is to have a house, a family and a daughter’: relationships and sexuality in intellectually disabled people

Rojas

Haya

Visa

2014

Brit J Learn Disabil

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Accessible summary Relationships and sexuality are important for disabled people. Through the voices of 16 intellectually disabled adults, this paper shows what they consider to be important in areas such as education or personal relationships. Most of the people interviewed would like to have a partner and live together as a couple. Intellectually disabled people encounter many barriers to obtain certain basic rights. Summary This study starts from the premise that we are sexual beings, and therefore, sexuality is part of our lives and defines us as human beings. This is also true with regard to intellectually disabled people. Within the framework of broader qualitative research carried out in Spain, some partial results of an ongoing study aimed at finding out what a group of adults see as important in different areas of their lives are presented here. Through the personal narratives of 16 intellectually disabled people, this paper explores some of their ideas and demands about sexuality and their sexual lives. Most of the people interviewed expressed their desire to have a partner and to live as a couple. There is no doubt that many intellectually disabled people have greater control over their lives and the decisions that affect them, but as they tell us, the presence of old ideas can hinder them from securing their fundamental rights.

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Section: Resultsmentioning

confidence: 99%

‘My great hope in life is to have a house, a family and a daughter’: relationships and sexuality in intellectually disabled people

Rojas

Haya

Visa

2014

Brit J Learn Disabil

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“…Several studies have used a narrative approach to provide a better understanding of the lives of people with ID (e.g., Gabel, Cohen, Kotel, & Pearson, 2013;Hamilton & Atkinson, 2009;Marshall & Tilley, 2013;McClimens, 2002;Roberts & Hamilton, 2010;Van Hove et al, 2012;Welsby & Horsfall, 2011). These studies have shown the myriad of problems that people with ID encounter in their lives, including work and leisure, institutional changes, difficult social relations, bullying, stigmatization, and abuse.…”

Section: Story Work For People With Intellectual Disabilitymentioning

confidence: 98%

Who Am I? A Life Story Intervention for Persons With Intellectual Disability and Psychiatric Problems

Westerhof

Beernink

Sools

2016

Intellectual and Developmental Disabilities

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This article describes an innovative intervention based on narrative and life review therapy that is tailored to people with intellectual disability (ID) and psychiatric problems. The current study provides a first evaluation of the intervention. A symptom checklist (SCL-90) was used in a pre- and post-follow-up design, and a qualitative evaluation of the intervention was carried out with 25 participants. Results showed large changes in psychiatric symptoms, in particular on depression, anxiety, obsessive-compulsive disorder, and interpersonal sensitivity. Participants were mainly positive in their general explicit evaluations of the therapy as well as on personal learning points, intervention-specific, group-related, and therapist-related aspects. It is concluded that the intervention is promising for the treatment of people with ID and psychiatric complaints.

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“…This is due to the lengthy ethical process and difficulty in satisfying ethics review groups (Brown et al., ). On the other hand, noninclusion of people with intellectual disabilities in research further marginalises them and prevents them from contributing to and deciding what kind of service they want, resulting in them possibly receiving inappropriate services (Welsby & Horsfall, ).…”

Section: Introductionmentioning

confidence: 99%

End‐of‐life care research on people with intellectual disabilities: Challenges for proactive inclusion in an Irish context

Cithambaram

Duffy

Courtney

2018

Brit J Learn Disabil

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Accessible Summary• People with intellectual disabilities are living longer than ever before.• Although people with intellectual disabilities are living longer, they still suffer from many illnesses. This may reduce their lifespan, and they may die earlier than other people and therefore require good end-of-life care whatever age they die.• Views and opinions of people with intellectual disabilities are important in determining what is good care at the end of life.• Ethical and practical guidelines in relation to recruitment, obtaining consent, and having conversation around sensitive issues are clearly discussed in this paper. AbstractBackground: In recent times, people with intellectual disabilities are increasingly included in research studies; however, their participation in sensitive research such as palliative and end-of-life care is less frequent. The reasons for not including people with intellectual disabilities in these kinds of research studies are issues in relation to obtaining consent, difficulty of recruiting, and engaging and collecting relevant information. This paper aimed to provide insight into how people with intellectual disabilities could be proactively included in research which is sensitive to their unique needs.Method: This study included 13 people with mild and moderate intellectual disabilities and explored their end-of-life care needs from their perspectives. After obtaining appropriate ethical approval, the research process was commenced. Applying the constructive grounded theory approach, data were collected and analysed by using the constant comparative method. A story from the book Am I Going to Die was used to enhance the understanding of the concepts of death and dying while collecting data.Findings: Participants with intellectual disabilities were recruited by establishing a close relationship with service providers. Capacity to consent and informed consent were fostered by carefully explaining the research process through easy-to-read information, and the data collection process was successfully completed by having a person-centred approach.Conclusion: People with intellectual disabilities can be successfully included in research. This is possible when their diverse needs are carefully considered, and appropriately developed protocols which meet their needs in relation to their capacities and abilities are utilised. This approach requires a flexible and inclusive research process. | 71CITHAMBARAM eT Al.

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Everyday practices of exclusion/inclusion: women who have an intellectual disability speaking for themselves?

Cited by 37 publications

References 16 publications

‘My great hope in life is to have a house, a family and a daughter’: relationships and sexuality in intellectually disabled people

‘My great hope in life is to have a house, a family and a daughter’: relationships and sexuality in intellectually disabled people

Who Am I? A Life Story Intervention for Persons With Intellectual Disability and Psychiatric Problems

End‐of‐life care research on people with intellectual disabilities: Challenges for proactive inclusion in an Irish context

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