Understanding caregiver stress to inform community-based stress monitoring and supportive interventions: a qualitative, descriptive study

To inform community-based stress monitoring tools and supportive interventions, this study aimed to understand caregiver stress as experienced by a diverse group of informal caregivers guided by the Pearlin Stress Process Model. We used a qualitative descriptive design conducting semi-structured interviews with informal caregivers (18 years) currently or previously caring for an adult with health issues at home. Data were analysed using the framework approach.

We recruited 27 caregivers (19 current, 8 former) from various geographic locations within the UK. In terms of background and context, poor caregiver health increased stress whereas prior employment in health or social care, and access to trusted supports and resources reduced stress. Common primary stressors included rapidly changing or palliative care care-recipient needs, loneliness and loss (i.e., loss of their normal life, or of the life and future plans they had expected). Family conflict, occupational/economic strains, and social/recreational life constraints were important secondary stressors. Guilt contributed to intrapsychic strain resulting in low self-esteem and feelings of role captivity. Few participants discussed positive elements of caregiving such as mastery or gain. Stress mediators included coping strategies such as taking control, humour, taking brief respite, social activities, access to peer and other forms of social support, and trusted support for caring. Common outcomes of stress included exhaustion, physical injuries, weight loss, difficulty sleeping, depression, and anxiety.

Despite growing recognition of issues facing informal caregivers and policies or services put in place to support them, our data indicate key stressors remain. Future supportive initiatives should reflect dynamic and individual caregiver needs, thereby enabling caregivers to prioritise their mental and physical wellbeing and receive brief respite from caregiving responsibilities. Stress monitoring tools and accompanying supportive interventions, if co-designed with caregivers with lived experience, offer the potential to identify high-stress periods, enable timely interventions, and guide more efficient resource allocation.