A valuable burden? The impact of children with profound intellectual and multiple disabilities on family life

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

doi:10.3109/13668250.2017.1326588

Cited by 34 publications

(33 citation statements)

References 18 publications

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“…This is caused by a combination of factors including an inability of some fathers to provide due to unemployment, difficulty in locating the father and lack of maintenance payment enforcement by the authorities (Smit, 2002). However, the financial need of mothers who have a child affected by a genetic disorder is increased due to the extra costs of caring for the child and because mothers frequently give up work to provide care for their child (Luijkx et al, 2019). Without work and support from the father, many mothers with a child with a genetic disorder become entirely dependent on extended family and the insufficient Government Care-Dependency Grant.…”

Section: The Need For Supportmentioning

confidence: 99%

Exploring how mothers of a child with a genetic disorder experience their couple relationship in a low socio‐economic setting

Haw

Henriques

2021

Journal of Genetic Counseling

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The effect of having a child with a genetic disorder on the couple relationshipThere is an extensive body of literature on the impact that having a child with a disability or genetic disorder has on family functioning and couple relationships. However, the vast majority of these studies have been done in well-resourced Western world contexts with comparably few studies done in disadvantaged, resource-poor settings (van der Mark et al., 2017). There is consensus in the international literature that having a child with a disability increases levels of parental stress, as well as the risk of depression and anxi-

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Section: The Need For Supportmentioning

confidence: 99%

Exploring how mothers of a child with a genetic disorder experience their couple relationship in a low socio‐economic setting

Haw

Henriques

2021

Journal of Genetic Counseling

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“…The awareness of parents’ high vulnerability raises imperative questions regarding their challenges and the family’s quality of life ( Boelsma et al, 2018 ; Luijkx et al, 2017 , 2019 ). The current standards of evidence- and value-based care and participatory health perspectives underline the importance to engage in the parents’ lifeworld to achieve care that will match specific needs ( Brown et al, 2005 ; Groot et al, 2020 ; Misak, 2010 ).…”

Section: Introductionmentioning

confidence: 99%

Exploring the Experiences of Dutch Parents Caring for Children with Profound Intellectual and Multiple Disabilities: A Thematic Analysis of Their Blogs

Geuze

Goossensen

2021

Global Qualitative Nursing Research

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The current study analyzed blogs written by four Dutch parents of children with profound intellectual and multiple disabilities, with the aim of deepening the understanding of the parents’ concerns. Thematic analysis was conducted and five main themes were identified: Dealing with uncertainties addressed the impact of unpredictability present in the everyday lives of parents, Love and loss described the complexity of concurrently cherishing the child and grieving various types of loss, Struggling with time, energy and finances detailed imbalances and struggles related to parents’ personal resources, Feeling included in communities and society specified social consequences, and Relating to professional care services reflected on stress and support associated with professional care delivery. The study findings demonstrate how care professionals should acknowledge parents’ vulnerabilities by being aware of their existential distress and empowering parents to exercise control of family thriving.

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“…Many parents experienced a mismatch between the needs of their child and capacity of the services available, and a needed long-term perspective on the services [ 9 , 14 ]. However, families with ID children face challenges that exceed those of typical families, and several studies identify the impact of these challenges for the families as higher objective and subjective burden, more frequent psychological distress, and lower social support [ 15 – 18 ].…”

Section: Introductionmentioning

confidence: 99%

Improving the transition process to independent living for adolescents with profound intellectual disabilities. Experiences of parents and employees

Roos¹,

Søndenaa

2020

BMC Health Serv Res

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Background The transition process from the family home to independent living for young adults with profound intellectual disability (PID) becomes delayed. Those families face challenges that exceed those of typical families such as higher objective and subjective burden, more frequent psychological distress and lower social support. The aim of this study was to explore the collaboration process between parents and employees and identify factors that improve the transition with less burden. Methods A descriptive qualitative study was undertaken with 18 persons (9 parents and 9 employees) interviewed individually and in groups. In accordance with the municipality’s guidelines, families with a child with PID should apply for housing, when the child turns 16. The purpose is to ensure interdisciplinary collaboration, information flow and coordinated services according to family’s needs. The main question in the interviews was ‘What was your experience with cooperation in the transition process, and what would you do to improve this process?’ The interviews were analysed with a thematic approach using systematic text condensation. Results The parents experienced a lack of general information about the ‘housing waiting list’, level of services, and the plan for time of moving from the family home, and how to choose where and whom to live with. Parents described an unsustainable burden of care during the waiting period, and a family crisis caused the allocation of an apartment in a group house. Employees shared challenges to meet families’ wishes, as there were too few group homes. They experienced good collaboration with families and said they offered respite care, due to reduce parents’ burden of care. Employees experienced that PID adolescents developed skills, mastery and degrees of independence after completing a residency at the Folk High School. Conclusions To improve the transition process from family home to independent living for young adults with PID, the informants highlighted some factors to reduce the burden of care on families: 1) Systematic follow-up program for families to observe their needs at an early stage; 2) More available group houses; 3) Information about the housing priorities of the services and; 4) Educational preparation programs for families.

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A valuable burden? The impact of children with profound intellectual and multiple disabilities on family life

Cited by 34 publications

References 18 publications

Exploring how mothers of a child with a genetic disorder experience their couple relationship in a low socio‐economic setting

Exploring how mothers of a child with a genetic disorder experience their couple relationship in a low socio‐economic setting

Exploring the Experiences of Dutch Parents Caring for Children with Profound Intellectual and Multiple Disabilities: A Thematic Analysis of Their Blogs

Improving the transition process to independent living for adolescents with profound intellectual disabilities. Experiences of parents and employees

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