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Family members' experience of palliative home care
Linköping University, Department of Neuroscience and Locomotion, Geriatrics. Linköping University, Faculty of Health Sciences.
2003 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The presence of a family member is often a prerequisite for successful palliative home care. The overall aim of this thesis was to contribute to a deeper understanding of family members' experiences of having a dying relative or friend cared for by advanced palliative home care. Two methodological approaches were used. Semi-structured tape-recorded interviews were analysed with a hermeneutic approach (19 family members; 30 interviews). Two postal questionnaires with open-ended questions were distributed and the responses (217 and 233, respectively) were analysed with qualitative and quantitative content analyses.

All studies had a salutogenic orientation, i.e. with the origin of health in focus, and therefore facilitating as well as burdensome aspects were studied. In the interview studies, Antonovsky's salutogenic theory of Sense of coherence was applied as a framework, and the concepts of comprehensibility, manageability and meaningfulness were used.

The studies showed that when the family members evaluated the palliative home care, they mentioned both positive and negative aspects with regard to the service, e.g. accessibility and staff competence, and comfort factors, e.g. feeling secure and being at the centre of attention.

Comprehensibility concerned more than traditional information-giving and included symbols, basic life assumptions and previous knowledge, which were important for creating an inner congruent reality, as opposed to an inner chaos.

Staff - family member interactions contributed to manageability by facilitating the family member's feeling of sharing the responsibility and contributing to the care together with the staff.

Having a dying relative of friend could include also feelings of meaningfulness in an otherwise burdensome situation. Participating in the care, feeling hope, knowing that the patient did not suffer and doing the best possible had contributed to a feeling of meaningfulness.

Of the family members, 36% had experienced powerlessness and/or helplessness, whereas 33% stated that they had never had such feelings during the palliative home care period. The feelings were characterised by perception of the patient's suffering, his/her fading away, and a feeling of own insufficiency. Moreover, the meaning of powerlessness and helplessness involved a deeper level including feelings of guilt, anger and loneliness.

It is concluded that a salutogenic perspective is relevant in palliative home care. When staff interacts with family members in palliative care, there is a potential for facilitating the family members' perception of manageability, comprehensibility and meaningfulness. Understanding of home as a place of palliative care seems important and includes the contribution of a familiar environment, retained everyday life and of a basis for self-transcendence. Staff needs also to be aware of the risk of negative aspects, such as lost privacy and changed meaning of the home. Higher abstraction levels, including existential dimensions, such as security and powerlessness were essential parts of the family members' experiences. If such experiences are not considered in goal-setting and in service evaluation, important parts of palliative care will not be reflected by the chosen/measured parameters.

Place, publisher, year, edition, pages
Linköping: Linköpings universitet , 2003. , 52 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 821
Keyword [en]
family member, palliative home care, Sense of coherence, salutogenesis, comprehensibility, manageability, meaningfulness, powerlessness, helplessness
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-25691Local ID: 10067ISBN: 91-7373-513-2 (print)OAI: oai:DiVA.org:liu-25691DiVA: diva2:246239
Public defence
2003-11-13, Victoriasalen, Universitetssjukhuset, Linköping, 09:00 (Swedish)
Opponent
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2012-10-16Bibliographically approved
List of papers
1. Advanced palliative home care: next-of-kin's perspective
Open this publication in new window or tab >>Advanced palliative home care: next-of-kin's perspective
2003 (English)In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 6, no 5, 749-756 p.Article in journal (Refereed) Published
Abstract [en]

Goals: (1) To describe what aspects are important when next-of-kin evaluate advanced palliative home care (APHC) and (2) to compare the expressed aspects and describe eventual differences among the three settings, which differed in terms of length of services, geographic location, and population size.

Subjects and methods: Four to 7 months after the patient's death (87% from cancer), 217 consecutive next-of-kin from three different settings in Sweden responded (response rate 86%) to three open-ended questions via a postal questionnaire. Qualitative content analysis was performed.

Main results: Service aspects and comfort emerged as main categories. The staff's competence, attitude and communication, accessibility, and spectrum of services were valued service aspects. Comfort, such as feeling secure, was another important aspect and it concerned the next-of-kin themselves, the patients, and the families. Additionally, comfort was related to interactional issues such as being in the center and sharing caring with the staff. The actual place of care (i.e., being at home) added to the perceived comfort. Of the respondents, 87% described positive aspects of APHC and 28% negative aspects. No major differences were found among the different settings.

Conclusions: Next-of-kin incorporate service aspects and aspects relating to the patient's and family's comfort when evaluating APHC. The importance of these aspects is discussed in relation to the content of palliative care and potential goals.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-25273 (URN)10.1089/109662103322515257 (DOI)9713 (Local ID)9713 (Archive number)9713 (OAI)
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2017-12-13Bibliographically approved
2. Exploring comprehensibility and manageability in palliative home care: an interview study of dying cancer patients' informal carers
Open this publication in new window or tab >>Exploring comprehensibility and manageability in palliative home care: an interview study of dying cancer patients' informal carers
2004 (English)In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 13, no 9, 605-618 p.Article in journal (Refereed) Published
Abstract [en]

The presence of an informal carer is often a prerequisite for successful palliative home care, and the staff's ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-24730 (URN)10.1002/pon.774 (DOI)6980 (Local ID)6980 (Archive number)6980 (OAI)
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2017-12-13Bibliographically approved
3. Meaningfulness in palliative home care: an interview study of dying cancer patients' next of kin
Open this publication in new window or tab >>Meaningfulness in palliative home care: an interview study of dying cancer patients' next of kin
2003 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 1, no 2, 171-180 p.Article in journal (Refereed) Published
Abstract [en]

Objective: An increasing number of patients are cared for at home and the presence of next of kin is often a prerequisite for successful home care. The aim of this study was to describe and interpret the construct of meaningfulness in next of kin of cancer patients who are in advanced palliative home care.

Methods: The perspective of Antonovsky's salutogenic framework of sense of coherence was applied in the analysis. Using a hermeneutic approach, 19 next of kin were interviewed (n = 30 interviews) during ongoing palliative home care.

Results: Elements that facilitated meaningfulness included comfort, retaining everyday life, action, commitment, and hope, which were of great importance for creating a perception of self-transcendence and that the best possible was done.

Significance of results: The findings are discussed in relation to the concepts of meaning-based coping, tragic optimism, and existentialism. Clinical implications are suggested.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-25274 (URN)10.1017/S1478951503030311 (DOI)9714 (Local ID)9714 (Archive number)9714 (OAI)
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2017-12-13Bibliographically approved
4. Next of kin’s experience of powerlessness and helplessness in palliative home care
Open this publication in new window or tab >>Next of kin’s experience of powerlessness and helplessness in palliative home care
2004 (English)In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 12, no 2, 120-128 p.Article in journal (Refereed) Published
Abstract [en]

Goals of work  Powerlessness and helplessness have been very little studied. The aims of this study were (1) to describe what characterise such experiences and the meaning of them to next of kin of cancer patients in advanced palliative home care and (2) to make quantifications.

Patients and methods  The study design was cross-sectional and targeted next of kin during ongoing palliative home care and next of kin of patients who had died 3–9 months earlier; 233 next of kin responded (response rate 72%) to a postal questionnaire with both Likert-type and open-ended questions. The text responses were analysed with a combined qualitative and quantitative content analysis.

Main results  Thirty-six percent of respondents stated that they had experienced powerlessness and/or helplessness every day or several times per week, whereas 33% had never had this experience during the palliative home care period. Powerlessness and helplessness concerned next of kins perception of the patients suffering, of the patients fading away and the next of kins own feelings of insufficiency and resulted in both physical and psychological symptoms, such as muscle tension, headache, loss of appetite, anxiety and depression. In addition, powerlessness and helplessness concerned also a deeper meaning with existential and social aspects, such as feelings of guilt, anger and loneliness.

Conclusions  The main findings provide tools for the practitioner to identify situations contributing to next of kins sense of powerlessness and helplessness. The findings are discussed in relation to the concepts of symptom control, communication of awareness and humans search for action.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-23726 (URN)10.1007/s00520-003-0569-y (DOI)3233 (Local ID)3233 (Archive number)3233 (OAI)
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2017-12-13Bibliographically approved

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