Background. The role of informal spousal caregivers has increased as the population ages, levels of disability in society increase, and governments seek to restrain expenditure on the provision of institutional health care. Care giving has attracted a vast body of research, largely directed at caregiver burden. Incontinence, however, has been relatively unexplored, despite being a common problem faced by caregivers, and being recognised as a major caregiver burden and predictor of institutional placement.
Aims. This study began to explore the impact of care recipient incontinence on major care providers, that is, their spouses.
Approach. A qualitative approach based on the grounded theory method was used. Eight home-based caregivers of spouses with incontinence were interviewed.
Findings. Data analysis revealed a number of categories, grouped under three major themes: underpinnings, processes and consequences. The underpinnings were lifelong love and friendship, and acceptance; the processes were problem-solving and constant watchfulness. The consequences were role change, financial cost, decreased intimacy, emotional responses, sleeping issues and social isolation.
Discussion. The research highlighted the interconnectedness of factors in the experiences of carers, reinforcing the need for holistic assessment beyond a focus on the ‘continence issue’ alone. Nevertheless, simple interventions could make substantial differences. A framework is proposed which may guide nursing assessment.