Care challenges for informal caregivers of chronically ill lung patients: Results from a questionnaire survey

Abstract

Aims: The article aims to answer who the informal caregivers of patients with chronic obstructive pulmonary disease (COPD) are, what kind of help they provide, and how they experience providing help to the patient. Method: Data from a questionnaire survey to next of kin of COPD patients carried through in Norway in December 2009 and January 2010 is explored. Result: About 70% of the patients have one or more informal caregivers, and a majority of the caregivers is the patient’s spouse, most often a wife. The help provided is, to a large extent, practical help like housework, garden work, and shopping. Another important support is to accompany the patient to health care. About 45% of the caregivers are part of the work force. Rather few of the respondents experience the caregiving as so demanding that they have chosen to work part-time or quit working. The most demanding part of being an informal caregiver is an overall worrying for the patient. Conclusions: Paid sick leaves for caregivers that are employed, and hospital-at-home programmes that provide education and surveillance to the patient and his/her family through different phases of the illness, are policy means that both can help the informal caregivers to manage daily life and reduce the pressure on the formal healthcare and long-term care services in the future.