The ties that bind us: how existing relationships, health and gender shape family care in chronic obstructive pulmonary disease

Abstract

Chronic obstructive pulmonary disease (COPD) changes family roles and relationship dynamics and the experience of the disease is influenced by family functioning. Merleau- Ponty’s existential philosophy of the body provided the framework for this Heideggerian phenomenological inquiry. Fifteen people with COPD and 14 family members engaged in 58 semi-structured interviews either face-to-face or by telephone. This study identified a difference in the essence of the lived experiences between male and female carers, and between spousal and non-spousal carers in relation to severe COPD. Previous reciprocity framed the level of acceptance of the caring role and perception of care burden. The stories highlight the self-perceived need for women carers to be <em>conscious micro-managers</em> of illness. Male family members would care alongside, lending support and caring in a reactive way as specific needs or crises arose. Caring in COPD required a <em>binding vigilance</em>; a constant need of the carer to monitor the physical and emotional well-being of the sick person that bound them emotionally and cognitively to the task of caring. Carers were the managers of crises and families cared from a perspective of possible death. Family was perceived as the best thing in life. Health professionals should consider the influence of gender, family relationships and the impact of reciprocity when planning support for family caregivers. Further research is required to identify the similarities and differences in family caring between COPD and other chronic illnesses, and to further understand the specific needs of male carers.