“I love my sister, but sometimes I don't”: A qualitative study into the experiences of siblings of a child with profound intellectual and multiple disabilities

Luijkx, Jorien; Putten, Annette van der; Vlaskamp, Carla

doi:10.3109/13668250.2016.1224333

Cited by 36 publications

(26 citation statements)

References 26 publications

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“…First, regarding family interactions, in agreement with findings by previous researchers [ 50 , 51 , 52 , 53 , 54 ], our results indicate that, the role of the siblings of the person with ID had usually changed. Siblings also tended to have become caregivers, which had a positive effect on their parents because it had reduced the individual burden of care that they had had to carry.…”

Section: Discussionsupporting

confidence: 92%

Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study

Fernández-Ávalos

Pérez-Marfil

Ferrer‐Cascales

et al. 2020

IJERPH

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Background: Previous studies have confirmed that parenting a child diagnosed with an intellectual disability (ID) can negatively affect the parents’ quality of life in several dimensions. However, fewer have assessed its impact years after the initial diagnosis. The objective of this work was to carry out an in-depth analysis of the current quality of life and concerns of both mothers and fathers of adults diagnosed with ID, having as a reference the moment of the diagnosis. Methods: 16 parents of adult children with ID were evaluated using a semi-structured interview format. A thematic qualitative analysis was carried out by employing ATLAS.ti software. Results: The results suggested that both the emotional and physical well-being of parents, as well as their interpersonal relationships, had declined. In addition, the multiple life changes that had occurred over the time considered in this study, as well as day-to-day worries, had prevented improvements in their quality of life. Conclusions: Several dimensions of the parents’ quality of life were affected years after a child is diagnosed with ID. These included poor physical and psychological health, economic difficulties, lack of social and family support, and lack of time for self-care.

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Section: Discussionsupporting

confidence: 92%

Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study

Fernández-Ávalos

Pérez-Marfil

Ferrer‐Cascales

et al. 2020

IJERPH

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“…Hu et al, establish a connection between the holistic nature of the FQoL and the method used. To solve this problem, Brown et al, propose that one of the parents responds on behalf of the rest of the family [ 66 ], who would thus be represented by him or her [ 74 , 87 , 94 ]. However, as Giné et al, note, there is no way to ensure that this instruction of responding on behalf of the family has been followed by the family representative [ 58 ].…”

Section: Discussionmentioning

confidence: 99%

State of the Art of Family Quality of Life in Early Care and Disability: A Systematic Review

Mora

Ibáñez

Balcells‐Balcells

2020

IJERPH

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Background: In recent years, there has been a growing international interest in family quality of life The objective of this systematic review is to understand and analyze the conceptualization of the quality of life of families with children with disabilities between 0 and 6 years of age, the instruments for their measurement and the most relevant research results. Method: A bibliographic search was conducted in the Web of Science, Scopus and Eric databases of studies published in English and Spanish from 2000 to July 2019 focused on “family quality of life” or “quality of family life” in the disability field. A total of 63 studies were selected from a total of 1119 and analyzed for their theoretical and applied contributions to the field of early care. Results: The functional conceptualization of family quality of life predominates in this area, and a nascent and enriching holistic conceptualization is appreciated. There are three instruments that measure family quality of life in early care, although none of them is based on unified theory of FQoL; none of them focus exclusively on the age range 0–6 nor do they cover all disabilities. Conclusions: The need to deepen the dynamic interaction of family relationships and to understand the ethical requirement that the methods used to approach family quality of life respect the holistic nature of the research is noted.

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“…What do parents see as possible solutions to fill the gaps that they might leave behind after they are gone? And which roles can siblings play in relation to this possible gap (Heller & Kramer, 2009; Luijkx, Putten, & Vlaskamp, 2016; Rawson, 2010)? These questions are clinically relevant and should be addressed in future studies.…”

Section: Discussionmentioning

confidence: 99%

Parents' knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis

Kruithof

Willems

Etten-Jamaludin

et al. 2020

Research Intellect Disabil

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Persons with profound intellectual and multiple disabilities (PIMD) have an estimated IQ below 20. They have profound neuromotor dysfunctions, often accompanied by sensory impairments and medical problems, such as seizures, respiratory and feeding problems (Nakken & Vlaskamp, 2007). Persons with PIMD have little or no understanding of verbal language and no apparent symbolic interaction with objects and are therefore always dependent on others (Nakken & Vlaskamp, 2007). This dependency means that parents of persons with PIMD play a large, often lifelong (Seltzer, Greenberg, Floyd, Pettee, & Hong, 2001), role in the lives of their child. Although most people with PIMD live in professional care settings, some of them, in all age groups, live at home. Rough estimations in the Netherlands suggest percentages of between 2.4% and 13% of people with PIMD being cared for in their family home (Schuurman, 2010; Vlaskamp, 2002; Vugteveen, Putten, & Vlaskamp, 2014). However, the ambiguous description of the group in literature and surveys makes that especially the numbers of people with PIMD living at home may be underestimated (Vugteveen et al., 2014). The literature suggests that parents have unique and crucial knowledge of their child with PIMD, which helps them, for example, to improve the support and care of the child, regardless of whether the child is living at home or not (Gauthier-Boudreault, Gallagher, & Couture, 2017; Jokinen & Brown, 2005). For example, if persons with PIMD live at a residential care facility or go to a day activity centre, parents are often involved in personalizing the care for their child, monitoring this care and making decisions on

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“I love my sister, but sometimes I don't”: A qualitative study into the experiences of siblings of a child with profound intellectual and multiple disabilities

Cited by 36 publications

References 26 publications

Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study

Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study

State of the Art of Family Quality of Life in Early Care and Disability: A Systematic Review

Parents' knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis

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