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A support group programme for family members: an intervention during ongoing palliative care
Ersta Sköndal University College, Palliative Research Centre, PRC.
2012 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Family members are central in providing care for patients with lifethreatening illness, but they often experience a lack of necessary preparation and knowledge, with a need for information and psychosocial support. The overall aim of this thesis was to investigate participant’s experiences as well as effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care.

Methods: A mixed method design was used. Study I was retrospective descriptive and used a phenomenological method to analyse 10 face-to-face interviews about experiences of participating in the programme. Study II was retrospective descriptive and used qualitative content analysis to analyse 29 telephone interviews about experiences of the programme design. Study III was correlational and used a confirmatory factor analysis to psychometrically evaluate the preparedness for caregiving scale(PCS), caregiver competence scale(CCS) and rewards of caregiving scale(RCS) in 124 family members. Study IV was prospective quasi-experimental and used interferential statistics to investigate effects of the programme, assessing preparedness, competence, rewards, anxiety, depression, hope and health in 125 family members.

Results: The main experiences of participation in the programme were; a sense of safety and belonging, confirmation, insight into the gravity of the illness, and a moment of rest. The programme was experienced as covering topics of interest, structured to make participants feel invited by the caring team and using an open approach that fostered a warm atmosphere. The Swedish versions of PCS, CCS and RCS were shown to be valid and reliable. Family members who participated in the programme significantly increased in preparedness, competence and rewards in relation to caregiving. No significant changes were shown for anxiety, depression, hope and health.

Clinical implications: The results should provide encouragement in the challenging work to develop and deliverer interventions, with the explicit purpose of supporting family members in palliative care.

Place, publisher, year, edition, pages
Örebro universitet , 2012. , 271 p.
Keyword [en]
Competence, Family members, Interventions, Palliative care, Preparedness, Rewards, Support groups
National Category
Health Sciences Nursing
Identifiers
URN: urn:nbn:se:esh:diva-1868Libris ID: 12683947ISBN: 9789176688694 (print)OAI: oai:DiVA.org:esh-1868DiVA: diva2:579895
Available from: 2012-12-27 Created: 2012-12-20 Last updated: 2017-02-14Bibliographically approved
List of papers
1. A support group programme for relatives during the late palliative phase.
Open this publication in new window or tab >>A support group programme for relatives during the late palliative phase.
2007 (English)In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 13, no 4, 175-83 p.Article in journal (Refereed) Published
Abstract [en]

This study describes an intervention where relatives were invited to take part in a support group programme during the late palliative phase of their family member. The purpose was to describe their experiences of the support group programme and the subsequent impact on their lives as relatives of a terminally ill person. Qualitative interviews were chosen as the data collection method. The analysis was inspired by the phenomenological method as described by Giorgi (1989). The relatives' experiences were categorised into six key constituents: confirmation; insight into the gravity of the illness; sense of belonging created by similar experiences; participation in the care system; being able to rest; and strength to provide support for the patient. These six constituents resulted in a sense of safety in relation to the patient, the illness, the nursing staff and the care unit. The study's findings show that interventions of this kind may be integral to the relatives' ability to handle their situation when caring for a terminally ill family member.

National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-443 (URN)17551421 (PubMedID)
Available from: 2010-07-02 Created: 2010-07-02 Last updated: 2017-01-12Bibliographically approved
2. Meeting the needs of family members of persons with life threatening illness: a support group programme during ongoing palliative care.
Open this publication in new window or tab >>Meeting the needs of family members of persons with life threatening illness: a support group programme during ongoing palliative care.
2011 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 9, no 3, 263-271 p.Article in journal (Refereed) Published
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:esh:diva-1320 (URN)10.1017/S1478951511000216 (DOI)
Available from: 2011-10-27 Created: 2011-10-27 Last updated: 2017-01-12Bibliographically approved
3. Effects of a support group programme for patients with life-threatening illness during ongoing palliative care
Open this publication in new window or tab >>Effects of a support group programme for patients with life-threatening illness during ongoing palliative care
Show others...
2013 (English)In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 27, no 3, 257-264 p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Health care systems in many countries are moving towards outpatient care in which family members are central in providing care for patients with life-threatening illness. Several studies show that family members report a lack of preparation, knowledge and the ability to handle the caregiver role, and a need for information and psychosocial support. 

AIM: The aim was to investigate the effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care.

DESIGN: A prospective quasi-experimental design, including an intervention group and a comparison group, was used.

SETTINGS/PARTICIPANTS: A support group programme was offered to family members during ongoing palliative care at three intervention settings: two specialist palliative care units and one haematology unit. A fourth setting, a specialist palliative care unit, was used for comparisons.

RESULTS: Family members taking part in the support group programme significantly increased their perceptions of preparedness for caregiving, competence for caregiving, and rewards of caregiving. Hope, anxiety, depression symptoms and health showed no significant changes.

CONCLUSIONS: The intervention, including a support group programme delivered to family members of patients with life-threatening illness during ongoing palliative care, proved to be effective in certain domains of caregiving. No negative outcomes were detected. The results indicate that this intervention could be implemented and delivered to family members during ongoing palliative care.

Keyword
Palliative care, Family members, Intervention, Support groups
National Category
Health Sciences
Identifiers
urn:nbn:se:esh:diva-1867 (URN)10.1177/0269216312446103 (DOI)22562965 (PubMedID)
Note

Published online before print May 4.

Available from: 2012-12-20 Created: 2012-12-20 Last updated: 2017-01-12Bibliographically approved
4. Adaptation and psychometric evaluation of the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in a sample of Swedish family members of patients with life-threatening illness
Open this publication in new window or tab >>Adaptation and psychometric evaluation of the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in a sample of Swedish family members of patients with life-threatening illness
2012 (English)In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 26, no 7, 930-938 p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Family members often take on many caring responsibilities, with complex issues and challenges to consider. Feelings of preparedness, competence and reward are identified as concepts that may protect caregiver wellbeing and decrease negative outcomes related to caregiving.

AIM: This study aimed to translate, adapt and psychometrically evaluate the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in Swedish family members of patients with life threatening illness.

DESIGN: Correlational.

SETTING/PARTICIPANTS: The study took place in four settings including advanced palliative care. The scales were tested in a sample of 125 family members of persons with life-threatening illness. All three scales were tested in relation to distribution of item and scale scores, missing data patterns, dimensionality, convergent validity and reliability.

RESULTS: The results in this study indicate that the Swedish versions of The Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale are valid, reliable and user-friendly scales. Confirmatory factor analysis showed that the scales were unidimensional and all demonstrated Cronbach's alpha values of ≥0.9.

CONCLUSIONS: As a result of this study it is anticipated that the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale could provide a basis for collaborative research between different countries and make international studies more comparable and generalizable despite differences in language and culture.

Keyword
Family caregivers, Life-threatening illness, Psychometric evaluation
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:esh:diva-1321 (URN)10.1177/0269216311419987 (DOI)21908520 (PubMedID)
Note

Published online before print September 9, 2011.

Available from: 2011-10-27 Created: 2011-10-27 Last updated: 2017-01-12Bibliographically approved

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