Caring for people with early and advanced chronic obstructive pulmonary disease: how do family carers cope?

“…Similarities in caregiver experiences of emotional impacts have been documented across other more common progressive diseases (Figueiredo et al . , Grose et al . ).…”

Section: Discussionmentioning

confidence: 99%

Balancing needs as a family caregiver in H untington's disease: a qualitative interview study

Røthing

Malterud

Frich

2014

Health Soc Care Community

View full text Add to dashboard Cite

Family members in families with severe chronic disease play important roles in care‐giving. In families affected by Huntington's disease (HD), caregivers encounter practical and emotional challenges and distress. Enduring caregiver burdens may lead to problems and caregivers are in need of social support and health services to deal with challenges. We wanted to explore coping strategies and behaviour patterns used by family caregivers to care for themselves, while caring for a family member with HD. Participants were recruited from hospitals and community‐based healthcare. The sample represents experiences from care‐giving in all stages of the disease. We conducted semi‐structured interviews with 15 family caregivers in Norway. The transcribed material was analysed by use of systematic text condensation, a method for cross‐case thematic analysis of qualitative data. We found that family members used various coping strategies, adjusted to the stage and progression of HD. They tried to regulate information about the disease, balancing considerations for protection and disclosure, within and outside the family. The participants made efforts to maintain a balance between their own needs in everyday life and the need for care for affected family member(s). As the disease progressed, the balance was skewed, and the family caregivers' participation in social activities gradually decreased, resulting in experiences of isolation and frustration. In later stages of the disease, the need for care gradually overshadowed the caregivers' own activities, and they put their own life on hold. Health professionals and social workers should acknowledge that family caregivers balance their needs and considerations in coping with HD. They should, therefore, tailor healthcare services and social support to family caregivers' needs during the different stages of HD to improve caregivers' abilities to maintain some of their own activities, in balance with care‐giving.

show abstract

“…Fifth, generalisability may be compromised by the small sample size and international differences in healthcare systems. Sixth, other factors that may influence the experience of caregiving could be the duration of care provided , the relationship of the caregiver with the patient, the quality of the relationship and how caregivers cope with their caring demands . However, data concerning these characteristics were not available.…”

Section: Discussionmentioning

confidence: 99%

Family caregiving during 1‐year follow‐up in individuals with advanced chronic organ failure

Nakken

Spruit

Wouters

et al. 2015

Scandinavian Caring Sciences

View full text Add to dashboard Cite

show abstract

Caring for people with early and advanced chronic obstructive pulmonary disease: how do family carers cope?

Abstract: The findings are relevant to informing early supportive interventions aiming to prevent burden and promote healthy adjustment to care-giving demands within the specific context of chronic obstructive pulmonary disease.

Cited by 32 publications

References 31 publications

Undefined and unpredictable responsibility: a focus group study of the experiences of informal caregiver spouses of patients with severe COPD

Undefined and unpredictable responsibility: a focus group study of the experiences of informal caregiver spouses of patients with severe COPD

Balancing needs as a family caregiver in H untington's disease: a qualitative interview study

Family caregiving during 1‐year follow‐up in individuals with advanced chronic organ failure

Contact Info

Product

Resources

About