The Relation Between Family Quality of Life and the Family‐Centered Approach in Families With Children With an Intellectual Disability

Vanderkerken, Lien; Heyvaert, Mieke; Onghena, Patrick; Maes, Beatrijs

doi:10.1111/jppi.12317

Cited by 22 publications

(17 citation statements)

References 57 publications

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“…This could be prospectively measured in the future. Furthermore, a family-based approach to improving QoL ( 24 ) could be a consideration for local (day) services, when considering QoL interventions for people with an intellectual disability who avail of their services ( 25 – 27 ).…”

Section: Discussionmentioning

confidence: 99%

Quality of Life Outcomes in a Community Cohort of Adults With an Intellectual Disability Using the Personal Outcome Scale

Burke

Deffew

Stafford

et al. 2022

Front. Rehabilit. Sci.

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ObjectivesQuality of life (QoL) is a multi-dimensional phenomenon composed of core domains that are influenced by personal characteristics, values, and environmental contributions. There are eight core domains of QoL aligned with both the United Nations and the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD). The Personal Outcome Scale (POS), is a semi-structured self and proxy instrument that specifically measures these aspects of QoL for people with an intellectual disability.MethodsA total of 85 people with an intellectual disability and their primary keyworker (n = 85) took part in this study. A convenience sample recruitment strategy was employed to recruit participants during the calendar year from January–December 2020. Participants completed the self-report and proxy POS, and clinic-demographic data was also considered.ResultsQoL is higher in those who have a dedicated service planner and also for those with a less severe to profound disability. People who were in gainful employment reported significantly higher QoL as did those availing of outreach and residential services, over and above local services.ConclusionsThis research shows that there are distinct and specific factors that relate to QoL for people with an intellectual disability community-based services in Ireland. Future research could aim to investigate these longitudinally, and specifically how QoL relates to cognitive and functional outcomes.

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Section: Discussionmentioning

confidence: 99%

Quality of Life Outcomes in a Community Cohort of Adults With an Intellectual Disability Using the Personal Outcome Scale

Burke

Deffew

Stafford

et al. 2022

Front. Rehabilit. Sci.

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show abstract

“…This seems to be especially important if a child is at risk or has special needs, due to greater demands and pressures that parents are faced with ( Baxter, Cummins, & Yiolitis, 2000 ; Challela, 1981 ). Developmental disability in the family often affects the entire family system, usually because the mother has to provide extra care and time for the disabled child, leaving fewer resources for other responsibilities and relationships, within or outside the family ( Lundy, 2011 ; Vanderkerken, Heyvaert, Onghena, & Maes, 2019 ). Children with intellectual disability process information more slowly than children without intellectual disability.…”

mentioning

confidence: 99%

Parenting Sense of Competence in Parents of Children with and without Intellectual Disability

Jandrić

Kurtović

2021

Eur. J. Psychol.

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Our study aims to examine the relationship of child’s intellectual disability, parental education, employment and perceived stress with parenting sense of competence (satisfaction and self-efficacy). Three groups of parents (children without intellectual disability, children with mild intellectual disabilities, and children with moderate/severe intellectual disability) completed measures of perceived stress, parenting sense of competence and socio-demographic questions. Results show that child’s intellectual disability affects parenting satisfaction but not parenting self-efficacy. Parental employment predicted parenting satisfaction, but not parenting self-efficacy, while perceived stress predicted parenting satisfaction and self-efficacy. Results further suggest that parental employment moderates the relationship of child's disability with parenting satisfaction and perceived stress. Result suggest a need for interventions aimed at supporting parents in dealing with emotional consequences of their child’s disability.

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“…Further, due to the descriptive nature of this study, no insight was gained into the effects of social support on important outcome variables such as (family) quality of life (Balcells‐Balcells et al, 2019; Vanderkerken et al, 2019). Future research could focus on the differential effects of different support types, exploring benefits and areas for further work.…”

Section: Discussionmentioning

confidence: 99%

“…Importantly, since the non-randomised sampling method and limited sample size impedes generalizability, we would recommend studying a larger and randomised group of participants in order to increase representativeness and statistical power. Also, caution is warranted when interpreting this study's results in the context of other countries.Further, due to the descriptive nature of this study, no insight was gained into the effects of social support on important outcome variables such as (family) quality of life(Balcells-Balcells et al, 2019;Vanderkerken et al, 2019). Future research could focus on the differential effects of different support types, exploring benefits and areas for further work.…”

mentioning

confidence: 99%

‘We can't do it alone’: Perceived social support in parents of children with a significant cognitive and motor developmental delay

keer

Leeuwen

Maes

2021

Research Intellect Disabil

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Background It is generally acknowledged that parent social support is an important target for intervention. To explore the specific needs of parents of young children with a significant cognitive and motor developmental delay (SDD), we aim to chart the sources and perceived sufficiency of the social support they receive. Method Within the context of a broader project, 42 parents of a young child with SDD filled out a questionnaire on contextual factors, including information on social support. Results The majority of parents reported to receive (more than) sufficient support. Insufficiency is primarily reported with regard to practical support. Apart from the partner, grandparents of the child were the most common source of support. Conclusions This study confirms the importance of professional support and work‐life balance within this specific target group. Specific attention for practical support needs seems warranted considering the high basic care needs of these children.

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The Relation Between Family Quality of Life and the Family‐Centered Approach in Families With Children With an Intellectual Disability

Cited by 22 publications

References 57 publications

Quality of Life Outcomes in a Community Cohort of Adults With an Intellectual Disability Using the Personal Outcome Scale

Quality of Life Outcomes in a Community Cohort of Adults With an Intellectual Disability Using the Personal Outcome Scale

Parenting Sense of Competence in Parents of Children with and without Intellectual Disability

‘We can't do it alone’: Perceived social support in parents of children with a significant cognitive and motor developmental delay

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