Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Health-related quality of life in family members of patients with an advanced cancer diagnosis: A one-year prospective study
Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ, Quality Improvement and Leadership in Health and Welfare.
The Ryhov County Hospital, Jönköping.
The Ryhov County Hospital, Jönköping.
Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. ADULT.
Show others and affiliations
2012 (English)In: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 10, no 89Article in journal (Refereed) Published
Abstract [en]

Background: Receiving a cancer diagnosis affects family members as well as the person diagnosed. Familymembers often provide support for the sick person in daily life out of duty and love, and may not always think of their own vulnerability to illness. To individualise support for them, family members who are most at risk for becoming ill must be identified. The aim of this study was to investigate health-related quality of life (HRQOL) in family members of patients with advanced lung or gastrointestinal cancer 3 to 15 months after diagnosis.

Methods: Data on mental and physical dimensions of HRQOL were collected from family members of these patients in this prospective quantitative study. Five assessments using the Short Form 36 Health Survey (SF-36) and EuroQol (EQ-5D) were conducted during a 1-year period starting 3 months after diagnosis. Thirty-six family members completed the study, i.e. participated in all five data collections.

Results: No statistically significant changes in physical or mental HRQOL within the study group appeared over the 1-year follow-up. Compared with norm-based scores, family members had significantly poorer mental HRQOL scores throughout the year as measured by the SF-36. Family members also scored statistically significantly worse on the EQ-5D VAS in all five assessments compared to the norm-based score. Findings showed that older family members and partners were at higher risk for decreased physical HRQOL throughout the 1-year period, and younger family members were at higher risk for poorer mental HRQOL.

Conclusions: It is well known that ill health is associated with poor HRQOL. By identifying family members with poor HRQOL, those at risk of ill health can be identified and supported. Future large-scale research that verifies our findings is needed before making recommendations for individualised support and creating interventions best tailored to family members at risk for illness.

Place, publisher, year, edition, pages
2012. Vol. 10, no 89
Keyword [en]
Family member, Advanced cancer, Health-related quality of life, Mental health dimension, Physical health dimension
National Category
Nursing
Identifiers
URN: urn:nbn:se:hj:diva-19532DOI: 10.1186/1477-7525-10-89OAI: oai:DiVA.org:hj-19532DiVA: diva2:556763
Available from: 2012-09-26 Created: 2012-09-26 Last updated: 2017-12-07Bibliographically approved
In thesis
1. Consequences for family members of being informal caregivers to a person with advanced cancer
Open this publication in new window or tab >>Consequences for family members of being informal caregivers to a person with advanced cancer
2012 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Aim: The overall aim is to generate knowledge about consequences of informal caregiving for the family members of patients diagnosed with advanced cancer, over a one-year period, including the family members’ health, health-related quality of life, health care utilization, and associated costs. Furthermore, the family members’ management of their stressful daily life and the meanings of social support networks in the early stage will be explored in order to get deeper understanding.

Method: The thesis is based on two quantitative prospective studies (I–II) and two qualitative cross-sectional studies (III–IV). Studies I–II involved data from the same study group of 36 family members to relative with cancer. Use was made of questionnaires about sociodemographic characteristics, informal caregiving, leisure activities and absence from work (Study I), also of the Short Form 36 Health Survey (SF–36) and EuroQol (EQ–5D) (Study II), during a 1-year period starting 3 months after diagnosis. Study I also included a telephone interview and a review of medical records. Twenty family members were interviewed in Study III, 17 in Study IV; and the interviews were subjected to latent content analysis.

Results: The findings indicate that family members’ informal caregiving influence the risk of morbidity with increased health care utilization and lower health-related quality of life the year following the diagnosis. The number of hours spent giving the patients was highest in respect of emotional support. If professional caregivers as home help care assistants had provided the support, it would be equivalent to a cost of 327,000 SEK per 15 months. The medical records indicated increased morbidity with increased health service use (physician consultations), more psychiatric disorders and more musculoskeletal diseases during the follow-up period (Study I). No statistically significant differences in health-related quality of life (HRQOL) were found within the study group over the 1-year follow-up in either physical or mental dimensions. However, the family members did have mental HRQOL scores significantly lower than the norm-based ones as measured throughout the year by SF–36. In addition, results showed that older age and being a partner had a negative influence on HRQOL (Study II). Management employed by family members during the early stage after patient diagnosis was expressed by the theme Striving to be prepared for the painful, based on emotion-focused strategies except the problem-focused strategy to ‘Making things easier in everyday life’ both for the sick person and for themselves (Study III). The meaning of the social support network was expressed by the theme Confirmation through togetherness, covering emotional and, to a lesser extent, instrumental support. Confirmation through togetherness derived principally from information, understanding, encouragement, involvement and spiritual community. Need of support, Desire for a deeper relationship with relatives and Network to turn to were identified as antecedents to social support. Social support involves reciprocal exchange of verbal and non-verbal information (Study IV).  

Conclusions: The results of this thesis provide knowledge of family members’ risk of morbidity, which motivates developing guidelines for preventing both physical and mental morbidity. Developing valid measurement of the meaning of social support network for the individual patient could encourage nurses and other health-care professionals to focus on family members’ personal networks as a way to strengthen their mental health.

Place, publisher, year, edition, pages
Jönköping: School of Health Sciences, 2012. p. 90
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 37
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-19819 (URN)978-91-85835-36-2 (ISBN)
Public defence
2012-11-30, Sal: Originalet, Qulturumhuset, Hus B, Länssjukhuset Ryhov, Jönköping, 13:00 (English)
Available from: 2012-11-13 Created: 2012-11-13 Last updated: 2012-11-26Bibliographically approved

Open Access in DiVA

fulltext(405 kB)145 downloads
File information
File name FULLTEXT01.pdfFile size 405 kBChecksum SHA-512
8b255256731c02a7e1ebf702acbdd0bd0406f502ad1b80e70e3189fcec9e7311064b73c2fbbb02992954121008e36af35c1ad5705b930d8c8bed7c25dbe992b7
Type fulltextMimetype application/pdf

Other links

Publisher's full textFulltext

Search in DiVA

By author/editor
Sjölander, CatarinaMårtensson, Jan
By organisation
HHJ, Dep. of Nursing ScienceHHJ, Quality Improvement and Leadership in Health and WelfareHHJ. ADULT
In the same journal
Health and Quality of Life Outcomes
Nursing

Search outside of DiVA

GoogleGoogle Scholar
Total: 145 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

doi
urn-nbn

Altmetric score

doi
urn-nbn
Total: 667 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf