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Informal caregivers' conceptions of daily life with a spouse having chronic obstructive pulmonary disease
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
2013 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this thesis was to explore informal caregivers’ daily life with particular focus on those living with a spouse who has Chronic Obstructive Pulmonary Disease (COPD) in different grades, mild to severe, based on the ill person’s main concern.

The study design was explorative, comparative and descriptive. The thesis included a literature review of 45 scientific articles and semi-structured interviews with 23 patients suffering from COPD, and 21 women and 19 men living with a spouse suffering from COPD. Data were analysed using content analysis, grounded theory, and phenomenography.

Main findings: Men and women living with a spouse suffering from mild COPD did not experience changes in their daily life, and were not in need of support. It was when the COPD gradually escalated that their daily life was affected and they needed support. The caregiving women conceived that their daily life was socially restricted, they had changed roles, changes in health and changes in the couple’s relationship. The caregiving men’s daily life was conceived as burdened, restricted and the partner relationship was affected. The men’s attitude was to continue with their own life and own activities, and their approach to their caregiving situation was to view themselves as “Me and my spouse”. The main concern for people suffering from COPD was feelings of guilt due to self-inflicted disease associated with smoking habits. The thesis shows that there are differences in informal caregiving between males and females.

Conclusion: This thesis shows that there are differences in male and female caregiving for a spouse suffering from COPD. The caregivers conceive and handle the caregiving situation in different ways. It is central that health professionals and municipality consider this along with the individual needs that are related to the development of the COPD. There is a need to identify the person who suffers from COPD and their spouses from the first contact onwards, to regularly follow the development of their situation and need of support.

Place, publisher, year, edition, pages
Växjö, Kalmar: Linnaeus University Press, 2013. , 83 p.
Series
Linnaeus University Dissertations, 112/2013
Keyword [en]
Informal caregivers, gender, literature review, Chronic Obstructive Pulmonary Disease, daily life, feelings of guilt, grounded theory, main concerns, male spouses, female spouses, everyday life, phenomenography
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
URN: urn:nbn:se:lnu:diva-23308ISBN: 978-91-86983-99-4 (print)OAI: oai:DiVA.org:lnu-23308DiVA: diva2:582854
Public defence
2013-02-01, Myrdal, Hus K, Växjö, 10:00 (Swedish)
Opponent
Supervisors
Available from: 2013-01-10 Created: 2013-01-07 Last updated: 2016-03-10Bibliographically approved
List of papers
1. Conceptions of daily life in women living with a man suffering from chronic obstructive pulmonary disease
Open this publication in new window or tab >>Conceptions of daily life in women living with a man suffering from chronic obstructive pulmonary disease
2013 (English)In: Primary Health Care Research and Development, ISSN 1463-4236, E-ISSN 1477-1128, Vol. 14, no 01, 40-51 p.Article in journal (Refereed) Published
Abstract [en]

Aim To describe conceptions of daily life in women living with a man suffering from chronic obstructive pulmonary disease (COPD) in different stages.

Background The spouse is often the primary caregiver to someone with COPD, and thus also affected by the consequences of the disease. No previous studies have been found focusing on conceptions of daily life in women living with a man suffering from COPD in different stages.

Methods A phenomenographic study was conducted. Data were collected in 2008–2009 through semi-structured interviews with 21 women living with men suffering from COPD in different stages.

Findings Four main descriptive categories were found: unchanged life situation where no support was needed; socially restricted life and changed roles; changes in health; and changes in the couple's relationship where support was needed. The categories are described in relation to the woman herself, in relation to the man, and in relation to others. No support was needed from society or health care when the men had mild COPD and the women experienced no change in their daily life. As the disease progressed, the women's responsibilities increased and their role changed from being a spouse to being an informal carer. Social contacts became limited, and they began to feel isolated. The women prioritized their spouse's health and well-being and compromised their own health. They experienced lack of support from health professionals and from the municipality.

Keyword
COPD, everday life, female spouses, nursing, phenomenography
National Category
Nursing Sociology
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-23122 (URN)10.1017/S146342361200031X (DOI)000209618700005 ()22785223 (PubMedID)2-s2.0-84879778419 (Scopus ID)
Available from: 2013-01-07 Created: 2012-12-20 Last updated: 2017-12-06Bibliographically approved
2. Informal home caregiving in a gender perspective: A selected literature review
Open this publication in new window or tab >>Informal home caregiving in a gender perspective: A selected literature review
2004 (English)In: Vård i Norden, ISSN 0107-4083, E-ISSN 1890-4238, Vol. 24, no 4, 26-30 p.Article in journal (Refereed) Published
Abstract [en]

An informal home caregiver is a person (family member or friends) who takes care of or participates to some degree in the care of a person in the home. This study provides a selected review of literature published 1982-2003 of the informal home caregiving from a gender perspective. A computer-aided search using MEDLINE and CINAHL was carried out. The final number of articles was 45. The main findings were that there are differences in informal caregiving due to gender. Gender differences were found in categories such as affected lifeworld, health problems, managing ability and caregivers experience from caring for a care receiver with different diseases. It is of importance that the informal caregiver is involved in the planning and that a planning act takes place. If society involves the informal home caregiver we can avoid the caregiver being the hidden victim of illness and disability. It is known that burdensome caregiving can result in encroachment due to exhaustion.

Keyword
Informal home caregivers, gender, literature review
National Category
Medical and Health Sciences
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-23116 (URN)
Available from: 2013-01-07 Created: 2012-12-20 Last updated: 2017-12-06Bibliographically approved
3. Feelings of guilt due to self-inflicted disease: A grounded theory of suffering from chronic obstructive pulmonary disease
Open this publication in new window or tab >>Feelings of guilt due to self-inflicted disease: A grounded theory of suffering from chronic obstructive pulmonary disease
2010 (English)In: Journal of Health Psychology, ISSN 1359-1053, E-ISSN 1461-7277, Vol. 15, no 3, 456-466 p.Article in journal (Refereed) Published
Abstract [en]

The aim of this grounded theory studywas to illuminate the main concern ofpeople suffering from chronicobstructive pulmonary disease(COPD) and how they handle theireveryday life. Data were collectedthrough interviews with 23 peoplewith COPD at different stages, frommild to severe. A substantive theorywas generated showing that the mainconcern was feelings of guilt due toself-inflicted disease associated withsmoking habits. This core categorywas related to five managingstrategies termed making sense ofexistence, adjusting to bodilyrestrictions, surrendering to fate,making excuses for the smokingrelatedcause and creating compliancewith daily medication.

Keyword
chronic obstructive pulmonary disease, daily life, feelings of guilt, grounded theory, main concerns
National Category
Medical and Health Sciences
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-23119 (URN)10.1177/1359105309353646 (DOI)
Available from: 2013-01-07 Created: 2012-12-20 Last updated: 2017-12-06Bibliographically approved
4. Conceptions of daily life in men living with a woman suffering from chronic obstructive pulmonary disease
Open this publication in new window or tab >>Conceptions of daily life in men living with a woman suffering from chronic obstructive pulmonary disease
2013 (English)In: Primary Health Care Research and Development, ISSN 1463-4236, E-ISSN 1477-1128, Vol. 14, no 02, 140-150 p.Article in journal (Refereed) Published
Abstract [en]

Aim To describe conceptions of daily life in men living with a woman suffering from chronic obstructive pulmonary disease (COPD) in different stages of the disease. BACKGROUND: A chronic disease like COPD affects not only the person living with the illness, but also the spouse. Significant tasks and demands are placed on husbands. COPD has for a long time been considered more a man's disease than a woman's disease, but according to new evidence COPD is a vast problem in women, which requires support from their spouses. The literature review did not reveal any previous studies concerning conceptions of daily life in men living with women suffering from COPD in different stages. METHODS: A phenomenographic study was conducted. Data were collected from October 2008 to October 2009 through semi-structured interviews with 19 men living with a woman suffering from COPD. Findings Two main descriptive categories were found: (1) unchanged life situation where no support was needed; (2) changed life situation related to severity of COPD, where support was needed. The categories were described from the perspective 'ME and my spouse'. Even in their caregiving situation, the men continued with their own life and activities and did not put themselves in second place. No support was needed from healthcare or municipality when the women had mild COPD, but this changed when the COPD progressed. The men felt that daily life was burdened, restricted and the partner relationship was affected, even if the disease had not reached the final stage. The COPD forced them gradually into a caregiving role, and their daily life changed. They become more of a caregiver than a spouse. The men experienced lack of knowledge and support, and they felt that health professionals and municipality did not care about them.

Keyword
COPD, everyday life, male spouses, nursing, phenomenography
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-23123 (URN)10.1017/S1463423612000394 (DOI)000209618900005 ()23026500 (PubMedID)2-s2.0-84883161471 (Scopus ID)
Available from: 2012-12-20 Created: 2012-12-20 Last updated: 2017-12-06Bibliographically approved

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