Needs and Supports of People with Intellectual Disability and Their Families in Catalonia

Vilaseca, Rosa; Gràcia, Marta; Beltran, Francesc S.; Dalmau, Mariona; Alomar, Elisabeth; Adam-Alcocer, Ana Luisa; Simó-Pinatella, David

doi:10.1111/jar.12215

Cited by 29 publications

(25 citation statements)

References 60 publications

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“…Although various skills were described, everyone agreed that all people with ID require at least some support from others. This is congruent with previous studies (Hale et al, ; Vilaseca et al, ). Even though staff reported that a small minority of their clients might not feel the need to become more independent, staff, and legal representatives expressed that most people with ID would have both the desire and the ability to become more independent.…”

Section: Discussionsupporting

confidence: 94%

“…Most people with intellectual disabilities (ID) struggle with managing their affairs independently (Ramdoss et al, 2012;Sigafoos et al, 2005) and are therefore often at least somewhat dependent on the support from family and care staff (Hale, Trip, Whitehead, & Conder, 2011;Vilaseca et al, 2017). The struggles of people with ID can range from difficulties with personal care and household activities, to trouble with community participation and employment (Dusseljee, Rijken, Cardol, Curfs, & Groenewegen, 2011;Ramdoss et al, 2012;Smith, Shepley, Alexander, & Ayres, 2015).…”

Section: Introductionmentioning

confidence: 99%

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Promoting Independence of People with Intellectual Disabilities: A Focus Group Study Perspectives from People with Intellectual Disabilities, Legal Representatives, and Support Staff

Sandjojo

Gebhardt

Zedlitz

et al. 2018

Policy Practice Intel Disabi

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People with intellectual disabilities (ID) commonly struggle with managing their affairs, while they consider it important to be independent. This study aimed to gain insight into the perspectives of people with ID, legal representatives, and support staff on promoting independence in this population. Two focus groups were conducted with people with ID (n = 7), two with legal representatives (n = 13), and three with support staff (n = 17). Topics included the meaning of independence, the current level and needs of people with ID regarding their independence, and what they perceived as barriers and requirements when wanting to promote independence in this group. Possible outcomes of a greater independence of people with ID were also discussed. Verbatim transcripts were analyzed qualitatively with a general inductive approach. According to the respondents, people with ID require support from others, but most want to be more independent. Various barriers are experienced when trying to promote independence. These concern barriers at the level of support staff (e.g., lack of time), family (e.g., taking over tasks), and of the persons with ID themselves (e.g., emotional difficulties). When promoting independence in this population, more support and time seem necessary, as well as a clear, step‐by‐step tailored approach and good communication between all parties involved. Last, several advantages (e.g., greater self‐worth) and risks (e.g., overestimation by others, greater exposure to hazards) were proposed that could result from a greater independence of people with ID. As this study showed that people with ID generally want to become more independent. This stresses the need for the development of interventions, which could benefit from the findings from this study.

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Section: Discussionsupporting

confidence: 94%

Section: Introductionmentioning

confidence: 99%

Promoting Independence of People with Intellectual Disabilities: A Focus Group Study Perspectives from People with Intellectual Disabilities, Legal Representatives, and Support Staff

Sandjojo

Gebhardt

Zedlitz

et al. 2018

Policy Practice Intel Disabi

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“…Em consonância com outras pesquisas 49,57,58,59 , nosso estudo revelou que os deficientes recebem menos serviços e suportes do que realmente necessitam, nas áreas de saúde, educação e lazer. Políti-Cad.…”

Section: Discussionunclassified

Impacto da deficiência intelectual moderada na dinâmica e na qualidade de vida familiar: um estudo clínico-qualitativo

et al. 2017

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Este estudo clínico-qualitativo investigou o impacto da deficiência intelectual moderada na dinâmica e na qualidade de vida familiar. Os dados foram coletados por meio de entrevistas individuais com 15 mães de deficientes, escolhidas por conveniência, e examinados pela técnica de análise de conteúdo categorial temática. Os resultados foram discutidos usando-se abordagem compreensiva e interpretativa. Da análise das entrevistas apreendeu-se que o cuidado do filho deficiente é centrado na mãe, o que contribuiu para a modificação das relações familiares. O enfrentamento religioso apareceu como estratégia comum de ajuste. Os filhos deficientes tiveram acesso a menos serviços e suportes do que necessitavam, nas áreas de saúde, educação e lazer. Restrições financeiras e dificuldades no convívio comunitário impactaram negativamente na qualidade de vida familiar. Apoio emocional e psicológico para todos os membros da família, e apoio prático e social, incluindo distribuição de renda e acesso a serviços adequados, mostraram-se essenciais para o bem-estar do deficiente e de sua família.

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“…This can pertain to many aspects of daily living, from taking care of their personal hygiene and their household, to dealing with social interactions and employment (Dusseljee, Rijken, Cardol, Curfs, & Groenewegen, ; Smith, Shepley, Alexander, & Ayres, ; Van Laarhoven & Van Laarhoven‐Myers, ). Therefore, people with intellectual disabilities often have to rely on others (Hale, Trip, Whitehead, & Conder, ; Vilaseca et al., ). This does not only pose everyday challenges for these individuals, but also for their families and health care providers.…”

Section: Introductionmentioning

confidence: 99%

“…This is important, as this could enhance their overall quality of life and their participation and inclusion as equal and valued co‐citizens (Dollar, Fredrick, Alberto, & Luke, ; Sigafoos et al., ), which could lead to reductions in behavioural problems (García‐Villamisar, Dattilo, & Matson, ). Furthermore, it could decrease their demand for professional care and the burden that is experienced by family members (Dawson et al., ; Vilaseca et al., ).…”

Section: Introductionmentioning

confidence: 99%

Training staff to promote self‐management in people with intellectual disabilities

Sandjojo

Zedlitz

Gebhardt

et al. 2018

Research Intellect Disabil

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Background People with intellectual disabilities have increasing difficulties managing their daily affairs. This study examined the effectiveness of a staff training, which teaches staff to promote self‐management in people with intellectual disabilities. Method Effectiveness was assessed with questionnaires addressing clients’ (n = 26) independence and self‐reliance, support needs and challenging behaviour, using a pre–posttest control group design. Additionally, focus groups were conducted with trained staff members 6 months after the training. Results In the long term, the intervention group showed a significant increase in independence and self‐reliance, in contrast to the comparison group. No effect was found on support needs and challenging behaviour. Trained staff members reported limited benefits of the training, but had noticed changes in their attitude and method of working afterwards. Conclusions Further self‐management research is required to investigate how independence and self‐reliance can be promoted more effectively in this population. Future trainings should carefully consider their content, format, and implementation.

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Needs and Supports of People with Intellectual Disability and Their Families in Catalonia

Abstract: Besides providing specific support for individuals with intellectual disability, local policymakers and practitioners should apply a family-centred approach to the provision of support for families in order to improve FQoL.

Cited by 29 publications

References 60 publications

Promoting Independence of People with Intellectual Disabilities: A Focus Group Study Perspectives from People with Intellectual Disabilities, Legal Representatives, and Support Staff

Promoting Independence of People with Intellectual Disabilities: A Focus Group Study Perspectives from People with Intellectual Disabilities, Legal Representatives, and Support Staff

Impacto da deficiência intelectual moderada na dinâmica e na qualidade de vida familiar: um estudo clínico-qualitativo

Training staff to promote self‐management in people with intellectual disabilities

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