Abstract
Technological changes have led to important advances in medical diagnoses and treatments that prolong the informal care process. Support from the personal network of informal caregivers is an undervalued resource and the changes that have occurred over time are unknown. The aim of this study was to analyze the changes in personal network support among informal caregivers and to examine the effect of these changes on self-perceived caregiver health, with a focus on differences between men and women and caregivers with high and low levels of burden We also investigated caregiver perceptions and explanations of changes to their support network (losses and additions and no change). Using a mixed-methods approach, data were obtained from 32 caregivers that were intentionally selected in Spain, who were interviewed twice with a one-year interval. In the quantitative phase, personal networks analysis was performed with Egonet software, which obtained data on the composition and functional content in social support from 1600 personal relationships (25 alters for each ego in the two waves). In the qualitative phase, semi-structured interviews were conducted in the two waves with a guide in order to explore the changes in informal support resources over time. The selected men with high levels of burden pointed out a loss of network support with more discouraging reports compared with the low-burden male caregivers. Furthermore, the selected women with low burden levels mentioned losses too; however, their reports were more positive. Women reported improved health, especially those with low burden scores in the first wave and those who did not lose support. Caregivers with a high initial burden and who lost support reported worse health, particularly men and women with a strong sense of duty toward care. Social support from personal networks is important for caregiver health and its effects are influenced by gender roles. Our findings could help by improving the relational and social capital of informal caregivers and adapting them to the new needs of formal home care systems.
Highlights
We performed a two-wave mixed-methods longitudinal personal network analysis [20] that combined quantitative data on the social support function of networks and qualitative data that was obtained via semi-structured interviews
The intentional sampling was carried out based on the database of the CUIDAR-SE study [8], which is a larger study that has 404 registered informal caregivers from the Granada Health District
We studied changes in the personal support networks of informal caregivers that were selected on a purposive basis according to the objectives of the study over one year
Summary
All people need to be cared for at some point in their lives, but during childhood, old age, and periods of chronic illness or disability. Most informal care takes place in the home and is usually provided for by people from the care recipient’s immediate environment, mainly women [1]. Informal care is unpaid [2].
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