'A balancing act'. Living with severe chronic obstructive pulmonary disease in Southern New Zealand: a qualitative study

Abstract

INTRODUCTIONChronic obstructive pulmonary disease (COPD) is a common chronic condition managed in primary care. AIMTo understand how patients with severe COPD living in the Southern Health Region (Otago and Southland) experience and cope with the condition. METHODSSemi-structured interviews were undertaken with 23 patients with severe COPD (defined using the 2013 GOLD classification). A thematic analysis was conducted. RESULTSPatients’ accounts of living with severe COPD revealed four themes: loss, adaptation, isolation and social support. All participants discussed their sense of loss in coming to terms with having COPD and the ongoing restrictions or changes that were associated with breathlessness and fatigue. These losses required adaptation in daily living. Some patients struggled to adjust to new limitations and needed to rely on others for support. Others found ways to adapt their surroundings or ways of doing things while trying to maintain the same activities. Isolation was described in two ways – direct (no longer being able to easily socialize because activities often caused breathlessness) and indirect (the feeling of being isolated from others because they do not understand what it is like to live with COPD). Social support, including support provided by group-based pulmonary rehabilitation, helped to address the problems of social isolation. DISCUSSIONLiving with severe COPD is a ‘balancing act’ between insecurity (loss and isolation) and resilience (adaptation and social support). Health-care providers need to be proactive in identifying and managing patients’ unmet health needs and promote activities that reduce social isolation.

Social dimensions of chronic respiratory disease: stigma, isolation, and loneliness

“…With burdensome symptoms limiting mobility and function, along with the social context of stigma, people with chronic respiratory diseases are at particular risk of both social isolation and loneliness. A recent qualitative study with people with severe COPD [34 ▪ ] outlines a distinction between ‘direct’ and ‘indirect’ isolation in this population. Direct isolation constituted no longer being able to socialize because of physical limitations (e.g.…”

“…Preliminary evidence suggests similar negative outcomes of isolation and loneliness in chronic respiratory disease, including qualitative descriptions of feelings of loss and sadness [34 ▪ ]. Evangelista et al [48 ▪ ] evaluated associations between social participation, health, and quality of life in 57 people with COPD on long-term oxygen therapy.…”

“…Evangelista et al 's [48 ▪ ] work highlighted the potential role of breathlessness in limiting social participation, and qualitative evidence from breathlessness support services suggests that recipients felt less isolated, and more able to maintain or increase their daily activities [64]. Alongside this, participants’ descriptions of the importance of good family and community support [34 ▪ ] suggest finding ways to help people with chronic respiratory disease to forge social connections may also be beneficial. One such example is the GENIE intervention (Generating Engagement in Network Support), which supports participants to map their current social network, identify preferences for support, and link with local activities.…”

Nonpharmacological management of psychological distress in people with COPD

“…Such feelings are often mirrored in stigma and blame from others and/or society [48,49] and can contribute to reduced treatment adherence and help-seeking, increased emotional distress, and social isolation. In turn, social isolation [50], which can also be caused by reduced functional capacity or fear-based avoidance of physical activity, can be associated with loneliness in people with COPD [51][52][53][54], which is associated with worse functional capacity, HRQoL and psychological distress [47]. However, respective prevalence estimates are often not reported, requiring further research efforts [49,55].…”