Living with a spouse with chronic obstructive pulmonary disease: the meaning of wives’ experiences

Abstract

Aim. To describe and understand the meaning of the experience of living with a spouse who has chronic obstructive pulmonary disease. Background. Living with a spouse with a chronic illness may have a profound effect on women’s lives since society expects families, and especially women, to care for the chronically ill. The family member providing care and support is usually the wife. Design. This study investigated the wife’s experience of living with a husband’s chronic illness. A hermeneutic phenomenological approach was used to describe and understand the experience of women living with a spouse who has chronic obstructive pulmonary disease to determine the meaning this experience has for their lives. Methods. In‐depth interviews were conducted with ten women whose husbands had mild to severe obstructive lung disease. Thematic analysis was based on interpretive methods. Data were collected in 1997. Results. The findings are presented as two clusters, living with everyday illness and surviving the illness. Everyday illness includes monitoring, regulating activity, integrating illness effects, and managing technologies. Surviving the illness includes riding the roller coaster, keep on going, garnering support and finding explanations. Conclusions. The spouse’s illness had a major influence on these women’s lives, and the effects are very complex and interwoven with one another. Relevance to clinical practice. Health professionals can have a major role in assisting women to both live with the everyday illness and to survive its effects. Women were eager to tell their stories. Health professionals can help women deal with the experience by forming support groups and by asking the ‘How can I help?’ question more often and then actively listening to expressed concerns. Supporting women in their monitoring and regulating role is especially critical.

Caregivers’ experiences of contributing to patients’ self‐care in Chronic Obstructive Pulmonary Disease: A thematic synthesis of qualitative studies

“… Note Legend: (1) Aasbø et al, 2016 ; (2) Aasbø et al, 2017 ; (3) Boyle, 2009 ; (4) Bove et al, 2016 ; (5) Essue et al, 2010 ; (6) Ferreira et al, 2020 ; (7) Fotokian et al, 2017 ; (8) Gysels & Higginson, 2009 ; (9) Hynes et al, 2012 ; (10) Philip et al, 2014 ; (11) Robinson et al, 2018 ; (12) Schafheutle et al, 2018 ; (13) Simpson et al, 2010 ; (14) Spence et al, 2008 ; (15) Strang et al, 2018 . Abbreviations: ADL, activities of daily living; COPD, Chronic Obstructive Pulmonary Disease; IADL, instrumental activities of daily living.…”

“… Legend: (1) Aasbø et al, ( 2016 ); (2) Aasbø et al, ( 2017 ); (3) Boyle ( 2009 ); (4) Bove et al, ( 2016 ); (5) Essue et al, ( 2010 ); (6) Ferreira et al, ( 2020 ); (7) Fotokian et al, ( 2017 ); (8) Gysels and Higginson ( 2009 ); (9) Hynes et al, ( 2012 ); (10) Philip et al, ( 2014 ); (11) Robinson et al, ( 2018 ); (12) Schafheutle et al, ( 2018 ); (13) Simpson et al, ( 2010 ); (14) Spence et al, ( 2008 ); (15) Strang et al, ( 2018 ). …”

“…Caregivers learn to manage medical equipment, such as oxygen masks (Aasbø et al, 2016), oxygen concentrators, nebulizers (Essue et al, 2010) and electric backup systems (Aasbø et al, 2016). However, managing technologies increases the complexity of exacerbation management (Boyle, 2009). When the patients are unable to participate in exacerbation management, caregivers assume the role of patient's 'advocate' (Essue et al, 2010;Hynes et al, 2012;Philip et al, 2014); they make decisions on behalf of the patients and interpret the information, Because I'm the one that's dealing with it when X comes home…and then every day I go up and I check… I'm just watching everything that's going on up there… because after all, if I don't look after X, who will look after X, do you know?…”

“…). After experiencing several exacerbations, caregivers have learnt to recognize and interpret their manifestations(Boyle, 2009; Hynes et al, 2012), such as changes in oxygen saturation (Aasbø et al, Abbreviations: CO, country of origin; COPD, Chronic Obstructive Pulmonary Disease; EL, educational level; F, female; HF, heart failure; M, male. a [don't] understand.…”

Patients and informal caregivers’ experiences of burden of treatment in lung cancer and chronic obstructive pulmonary disease (COPD): a systematic review and synthesis of qualitative research

“…Patients with lung cancer frequently reported the importance of support from empathetic, trusted specialist HCPs in whom they had faith 49 53 66 85–87 93 97 121 122 131 132. Patients with COPD also described positive experiences of interactions with HCPs,125 129 particularly those with a specialist interest in COPD57 78 80 103 106 109 120 127 or those with whom they had relational continuity 80 109 125 129. Patients with COPD described lack of relational continuity with HCPs as making access to, and navigation of, the healthcare system more challenging 81 109 111 129.…”