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Consequences for family members of being informal caregivers to a person with advanced cancer
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.
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. , 90 p.
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 37
National Category
Nursing
Identifiers
URN: urn:nbn:se:hj:diva-19819ISBN: 978-91-85835-36-2 (print)OAI: oai:DiVA.org:hj-19819DiVA: diva2:567503
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
List of papers
1. Health consequences and costs of informal caregiving among family members of patients with advanced cancer: a prospective follow-up study
Open this publication in new window or tab >>Health consequences and costs of informal caregiving among family members of patients with advanced cancer: a prospective follow-up study
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(English)Article in journal (Other academic) Submitted
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-19818 (URN)
Available from: 2012-11-13 Created: 2012-11-13 Last updated: 2012-11-13Bibliographically approved
2. Health-related quality of life in family members of patients with an advanced cancer diagnosis: A one-year prospective study
Open this publication in new window or tab >>Health-related quality of life in family members of patients with an advanced cancer diagnosis: A one-year prospective study
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2012 (English)In: Health and Quality of Life Outcomes, 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.

Keyword
Family member, Advanced cancer, Health-related quality of life, Mental health dimension, Physical health dimension
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-19532 (URN)10.1186/1477-7525-10-89 (DOI)
Available from: 2012-09-26 Created: 2012-09-26 Last updated: 2013-08-02Bibliographically approved
3. Striving to be prepared for the painful: Management strategies following a family member’s diagnosis of advanced cancer
Open this publication in new window or tab >>Striving to be prepared for the painful: Management strategies following a family member’s diagnosis of advanced cancer
2011 (English)In: BMC Nursing, ISSN 1472-6955, Vol. 10, no 18, 1-8 p.Article in journal (Refereed) Published
Abstract [en]

Background: Cancer has consequences not only for the sick person but also for those who have a close relationship with that person. Greater knowledge about how family members manage the situation in the period immediately following the diagnosis means greater opportunity to provide the best possible support for the family. The purpose of this study was to explore management strategies that family members use when the patient is in the early stage of treatment for advanced cancer.

Methods: Twenty family members of cancer patients were included in the study shortly after the diagnosis. The patients had been diagnosed 8-14 weeks earlier with advanced lung cancer or gastrointestinal cancer. The data were collected in interviews with family members and subjected to qualitative latent content analysis. Through the identification of similarities and dissimilarities in the units of meaning, abstraction into codes and sub-themes became possible. The sub-themes were then brought together in one overarching theme.

Results: The overall function of management strategies is expressed in the theme Striving to be prepared for the painful. The family members prepare themselves mentally for the anticipated tragedy. Family relationships become increasingly important, and family members want to spend all their time together. They try to banish thoughts of the impending death and want to live as normal a life as possible. It becomes important to family members to live in the present and save their energy for the time when they will need it the most. How participants handle their worries, anxiety and sadness can be categorized into seven sub-themes or management strategies: Making things easier in everyday life, Banishing thoughts about the approaching loss, Living in the present, Adjusting to the sick person’s situation, Distracting oneself by being with others, Shielding the family from grief, and Attempting to maintain hope.

Conclusions: The findings revealed that the family members have their own resources for handling the early stage of the cancer trajectory in an acceptable way. There is a need for longitudinal studies to generate knowledge for designing evidence-based intervention programmes that can prevent future ill-health in these vulnerable family members.

Keyword
advanced cancer, family member, management strategies, latent content analysis
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-19530 (URN)10.1186/1472-6955-10-18 (DOI)
Available from: 2012-09-27 Created: 2012-09-26 Last updated: 2015-06-11Bibliographically approved
4. The meaning and validation of social support networks for close family of persons with advanced cancer
Open this publication in new window or tab >>The meaning and validation of social support networks for close family of persons with advanced cancer
2012 (English)In: BMC Nursing, ISSN 1472-6955, Vol. 11, no 17Article in journal (Refereed) Published
Abstract [en]

Background: To strengthen the mental well-being of close family of persons newly diagnosed as having cancer, it is necessary to acquire a greater understanding of their experiences of social support networks, so as to better assess what resources are available to them from such networks and what professional measures are required. The main aim of the present study was to explore the meaning of these networks for close family of adult persons in the early stage of treatment for advanced lung or gastrointestinal cancer. An additional aim was to validate the study’s empirical findings by means of the Finfgeld-Connett conceptual model for social support. The intention was to investigate whether these findings were in accordance with previous research in nursing.

Methods: Seventeen family members with a relative who 8–14 weeks earlier had been diagnosed as having lung or gastrointestinal cancer were interviewed. The data were subjected to qualitative latent content analysis and validated by means of identifying antecedents and critical attributes.

Results: The meaning or main attribute of the social support network was expressed by the theme Confirmation through togetherness, based on six subthemes covering emotional and, to a lesser extent, instrumental support. Confirmation through togetherness derived principally from information, understanding, encouragement, involvement and spiritual community. Three subthemes were identified as the antecedents to social support: Need of support, Desire for a deeper relationship with relatives, Network to turn to. Social support involves reciprocal exchange of verbal and non-verbal information provided mainly by lay persons.

Conclusions: The study provides knowledge of the antecedents and attributes of social support networks, particularly from the perspective of close family of adult persons with advanced lung or gastrointestinal cancer. There is a need for measurement instruments that could encourage nurses and other health-care professionals to focus on family members’ personal networks as a way to strengthen their mental health. There is also a need for further clarification of the meaning of social support versus caring during the whole illness trajectory of cancer from the family members’ perspective.

Keyword
Family members, Cancer, Social support, Social network, Confirmation, Latent content
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-19531 (URN)10.1186/1472-6955-11-17 (DOI)
Available from: 2012-09-26 Created: 2012-09-26 Last updated: 2013-08-02Bibliographically approved

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