The double‐edged sword of vulnerability: Explaining the persistent challenges for practitioners in supporting parents with intellectual disabilities

MacIntyre, Gillian; Stewart, Ailsa; McGregor, Sharon

doi:10.1111/jar.12647

Cited by 29 publications

(22 citation statements)

References 47 publications

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“…Describing families as vulnerable can increase the barriers in accessing appropriate support and a constructive collaboration [37]. The emotional strain caused by experiencing their own child as a burden when negotiating with a professional caring system may cause conflict to both the parents themselves and the collaborating efforts [38]. Although these families felt burdened, local research has documented that such families have a robustness and a family structure similar to typical families, with an even higher proportion of lasting marriages or cohabitation [37].…”

Section: Burden Of Careoffers Respite Carementioning

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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Section: Burden Of Careoffers Respite Carementioning

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

View full text Add to dashboard Cite

show abstract

“…Describing families as vulnerable can increase the barriers in accessing appropriate support and a constructive collaboration (36). The emotional strain caused by experiencing their own child as a burden when negotiating with a professional caring system may cause con ict to both the parents themselves and the collaborating efforts (37). Although these families felt burdened, local research has documented that such families have a robustness and a family structure similar to typical families, with an even higher proportion of lasting marriages or cohabitation (36).…”

Section: Burden Of Care -Offers Respite Carementioning

confidence: 99%

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

Roos

Søndenaa

2020

Preprint

View full text Add to dashboard Cite

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 that they had 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 children 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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“…Recent concepts of practitioners' constructions of families as 'vulnerable' have suggested that such a label can be negative on their perceived capacity to parent. Describing families as vulnerable can increase the barriers in accessing appropriate support and a constructive collaboration (34)]. The emotional strain caused by experiencing their own child as a burden when negotiating with a professional caring system may cause con ict to both the parents themselves and the collaborating efforts (35).…”

Section: Burden Of Care -Offers Respite Carementioning

confidence: 99%

Parents living with profound intellectual disabilities – how to improve the transition process from family home to independent living. A qualitative study with parents and employees

Roos¹,

Søndenaa²

2020

Preprint

View full text Add to dashboard Cite

Background The transition process from the family home to independent living for young adults with intellectual disability (ID) 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 profound intellectual disability (PID) child 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, the plan for time of moving from the family home, and how to choose where and whom to live with. Parents described that they had 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 cooperation with families and said they offered respite care, due to reduce parents’ burden of care. Employees experienced that PID children developed skills, mastery and degrees of independence after completing a residency at the Folk High School. Conclusions To improve the collaboration process to reduce the burden of care to families, the informants highlighted the following imported factors:

show abstract

The double‐edged sword of vulnerability: Explaining the persistent challenges for practitioners in supporting parents with intellectual disabilities

Cited by 29 publications

References 47 publications

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

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

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

Parents living with profound intellectual disabilities – how to improve the transition process from family home to independent living. A qualitative study with parents and employees

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