Support needs, coping, and stress among parents and caregivers of people with Down syndrome

Abstract

Background: Caregiving for an individual with Down syndrome (DS) results in needs that can impact the stress and wellbeing of the entire family. These needs may also vary over the lifespan of the individual with DS. Coping strategies may affect stress levels and reduce the effects of unmet needs.

Aims: (1) Do important unmet needs (IUNs), coping, and stress vary between parents and caregivers of adults compared to children with DS? (2) What is the relationship between stress, coping, and needs for parents and caregivers of people with DS?

Methods: 152 parents and caregivers of people with DS of various age groups completed an online survey including: demographic information, Family Needs Survey - Revised, Questionnaire on Resources and Stress - Friedrich Version, and the Family Crisis Oriented Personal Scales. Comparisons of IUNs, coping and stress between caregivers of adults and caregivers of children with DS were conducted. Relationships between stress, coping, and needs were explored using correlations and multiple regression.

Results: IUNs were greater for parents and caregivers of children than for parents and caregivers of adults. Stress level was positively correlated with the number of IUNs, and great use of coping strategies were associated with less stress and fewer IUNs. The coping styles that predicted stress were different for caregivers of children versus adults.

Conclusion: The results of this research highlight the importance of considering age in relation to needs and stress among families with a child with DS. Fostering effective coping strategies, including acquiring social support, is likely to support positive outcomes for caregivers of people with DS.

Keywords: Down syndrome; Needs assessment; Stress and coping; Unmet needs.