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Den ombokade resan: att leva som familj med kronisk sjukdom
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
2017 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Aim: The overall aim was to generate deepened knowledge and understanding about families’ experiences of living as a family with chronic illness. The four studies aimed to: illuminate the meaning of living as a family in the midst of chronic illness (I), illuminate illness beliefs in those families (II), illuminate the meaning of place for family well-being (III) and describe the experiences of encounters with health care in families living with chronic illness (IV).

Methods: All studies had qualitative designs and a Family Systems Nursing perspective. Data was collected through family interviews with families where an adult family member had lived with chronic illness for more than two years. The used analyses were phenomenological hermeneutic (I,III), hermeneutic (II) and content analysis (IV).

Results: Living as a family with chronic illness was a continuously ongoing process where families co-created a context for living with illness and alternative ways for everyday life (I). Core and secondary beliefs within and across families about illness, family, and health care were revealed and showed for how families responded to and managed situations due to illness (II). Further, the meaning of place for family well-being was described as “a shared respite”, i.e. a place for relief, reflection and re-creation. It seemed to be important for families to be in secure places to enhance well-being (III). Living with chronic illness also includes frequent encounters with health care professionals and having an accompanying member constituted a great power. It helped families to get opportunities to collaborate, and receiving confirmation in the encounters (IV).

Conclusions: Living as a family with chronic illness is a continuously ongoing process where family members constitute support for each other. Families have a common desire to handle challenges and changes due to illness and to co-create new patterns for everyday living. Therefore, if nurses adopt a Family Nursing Perspective and involve families in health care, families’ strengths and resources can be facilitated. Then, family well-being can be strengthened.

Place, publisher, year, edition, pages
Växjö: Linnaeus University Press, 2017. , p. 171
Series
Linnaeus University Dissertations ; 278/2017
Keywords [en]
Family systems nursing, Family, Chronic illness, Hermeneutics
Keywords [sv]
Familjecentrerad omvårdnad, kronisk sjukdom, hermeneutik
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
URN: urn:nbn:se:lnu:diva-61333Libris ID: 20053075ISBN: 978-91-88357-61-8 (print)OAI: oai:DiVA.org:lnu-61333DiVA, id: diva2:1081373
Public defence
2017-03-03, V159 Storken, Kalmar, 11:21
Opponent
Supervisors
Available from: 2017-03-16 Created: 2017-03-14 Last updated: 2017-03-16Bibliographically approved
List of papers
1. Living as a family in the midst of chronic illness
Open this publication in new window or tab >>Living as a family in the midst of chronic illness
2014 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 28, no 1, p. 29-37Article in journal (Refereed) Published
Abstract [en]

Aims and objectives

The aim of the study was to illuminate the meaning of lived experience of living as a family in the midst of chronic illness.

Background

Chronic illness implies a change for both the individual and the family. In this changed situation, all family members seem to benefit from sharing experiences and receiving support. Current research highlights the individual patient's or family member's perspectives on chronic illness, but family systems nursing (FSN) studies are warranted.

Design

A qualitative design with a FSN approach was chosen.

Method

Repeated qualitative narrative interviews with seven families living with chronic illness were performed. A phenomenological hermeneutic analysis, inspired by Ricoeur, was used to interpret the data.

Results

The phenomenon can be described as an ongoing movement towards well-being. The results included two themes and five sub-themes. The first theme was ‘Co-creating a context for living with illness’ with the subthemes; ‘learning to live with the expressions of illness’ and ‘communicating the illness within and outside the family’. The second theme was ‘Co-creating alternative ways for everyday life’ with the subthemes; ‘adapting to a new life rhythm’, ‘altering relationships’ and ‘changing roles and tasks in the family’.

Conclusions

Living as a family in the midst of chronic illness can be described as an ongoing process where the family members co-create a context for living with illness. They also co-create a context for alternative ways of everyday life.

Relevance to clinical practice

Knowledge about lived experience of living as a family in the midst of chronic illness can help nurses to adopt a FSN care perspective. This can increase the chances of taking advantage of the ways family members manage situations

Place, publisher, year, edition, pages
Wiley-Blackwell, 2014
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-23010 (URN)10.1111/scs.12023 (DOI)000329925600004 ()3317153 (PubMedID)2-s2.0-84892842006 (Scopus ID)
Available from: 2012-12-16 Created: 2012-12-16 Last updated: 2017-12-06Bibliographically approved
2. Families Living With Chronic Illness: Beliefs About Illness, Family, and Health Care
Open this publication in new window or tab >>Families Living With Chronic Illness: Beliefs About Illness, Family, and Health Care
2015 (English)In: Journal of Family Nursing, ISSN 1074-8407, E-ISSN 1552-549X, Vol. 21, no 2, p. 206-231Article in journal (Refereed) Published
Abstract [en]

Beliefs can be described as the lenses through which we view the world. With emerging illness, beliefs about the illness experience become important for nurses to understand to enhance well-being and healing. The aim of this study was to illuminate illness beliefs of families living with chronic illness. A qualitative design was chosen, including repeated narrative research interviews with seven Swedish families living with chronic illness. Hermeneutic analysis was used to interpret the transcribed family interviews. The result described beliefs in families, both within and across families. Both core beliefs and secondary beliefs about illness, family, and health care were revealed. Illness beliefs have importance for how families respond to and manage situations that arise from their encounters with illness. Nurses have to make space for and listen to families’ stories of illness to become aware of what beliefs may support and encourage family well-being and healing. The Illness Beliefs Model provides a touchstone whereby nurses can distinguish both individual and shared beliefs within families living with chronic illness and provide ideas for family intervention if needed.

Place, publisher, year, edition, pages
Sage Publications, 2015
Keywords
chronic illness, families, beliefs about illness, beliefs about families, beliefs about health care, Illness Beliefs Model, hermeneutic inquiry, Sweden
National Category
Nursing Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-42623 (URN)10.1177/1074840715576794 (DOI)000354871600003 ()2-s2.0-84990393868 (Scopus ID)
Available from: 2015-04-15 Created: 2015-04-15 Last updated: 2017-12-04Bibliographically approved
3. A shared respite: The meaning of place for family well-being in families living with chronic illness
Open this publication in new window or tab >>A shared respite: The meaning of place for family well-being in families living with chronic illness
2016 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 11, article id 30308Article in journal (Refereed) Published
Abstract [en]

Living with chronic illness is a family affair that involves ongoing changes and challenges in everyday life. When life changes, the environment is important for family health and well-being. The relation between a place and a family is rarely described, and therefore the aim of this study was to explore the meaning of place for family well-being in families living with chronic illness. A qualitative design was chosen. Data were collected by photovoice combined with narrative family research interviews with 10 families living with chronic illness. A phenomenological hermeneutic analysis was used to interpret the data. The results showed that the meaning of place for family well-being in families living with chronic illness can be described as "a shared respite.'' This main theme included three subthemes: "a place for relief,'' "a place for reflection,'' and "a place for re-creation.'' These results were further understood by means of the concept place security. Feeling well means having place security in these families. Through knowledge about the meaning of place for family well-being, health care personnel can stimulate families living with chronic illness to find respite in places that contribute to well-being, both in familiar and new places.

Keywords
Family systems nursing, place security, sense of place, family well-being, chronic illness, phenomenological hermeneutics
National Category
Nursing
Research subject
Health and Caring Sciences
Identifiers
urn:nbn:se:lnu:diva-52125 (URN)10.3402/qhw.v11.30308 (DOI)000372205500001 ()26956097 (PubMedID)2-s2.0-84962218353 (Scopus ID)
External cooperation:
Available from: 2016-04-18 Created: 2016-04-18 Last updated: 2017-11-30Bibliographically approved

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