Background
The COVID‐19 pandemic poses risks to the quality of life (QoL) of relatives of individuals with intellectual disabilities. This paper investigates relatives' QoL and associated risk and buffering factors before and during the pandemic.
Method
Surveys were administered to three samples of relatives in the Netherlands in 2019 (
N
= 105) and during the first waves of COVID‐19 in June (
N
= 207) and October 2020 (
N
= 332). Associations between QoL and care burden, care competence, social support, and resilience, and changes over time were analysed using (logistic) regressions.
Results
No significant changes in overall QoL nor its domains were found. Care burden was negatively associated with QoL and increased during the pandemic. Care competence was lower than in 2019. Competence, social support, and resilience were positively associated with QoL.
Conclusions
Although relatives' QoL remained stable, the pandemic poses non‐negligible risks to their wellbeing. It is, therefore, crucial to provide relatives with adequate support.
Background
Family carers of people with an intellectual disability sometimes need to transfer their caregiving tasks for example because of illness or ageing. We examined carers' experiences with long‐term care planning and the impact of the COVID‐19 pandemic on their intentions to engage in long‐term planning in the Netherlands.
Method
Twenty‐five semi‐structured interviews with family carers of people with an intellectual disability were conducted and 169 answers to an open question were thematically analysed. Data collection took place at three timepoints during 2020 and 2021.
Results
Family carers were recurrently concerned with long‐term care planning, especially with finding people to whom they can entrust their tasks. However, they perceived barriers in care planning. The COVID‐19 pandemic reinforced awareness of long‐term care planning and moved some to action.
Conclusions
The perceived urge to plan by family carers has grown due to the COVID‐19 pandemic. The current study provides valuable insights for stakeholders to support them in this.
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