Consequences for family members of being informal caregivers to a person with advanced cancer

90 Pages·2012·1.6 MB·English

School of Health Sciences, Jönköping University

Consequences for family members
of being informal caregivers to a
person with advanced cancer

Catarina Sjölander

DISSERTATION SERIES NO. 37, 2012
JÖNKÖPING 2012
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© Catarina Sjölander, 2012

Publisher: School of Health Sciences
Print: Ineko AB

ISSN 1654-3602
ISBN 978-91-85835-36-2

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To Daniella and Fredrika

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Abstract
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
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(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.

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Original Studies

This thesis is based on the following studies, which are referred to by Roman
numerals in the text:

Study I
Catarina Sjölander, Bo Rolander, Johannes Järhult, Jan Mårtensson, Per
Carlsson, Gerd Ahlström. Health consequences and costs of informal caregiving
among family members of patients with advanced cancer: a prospective follow-
up study. Manuscript submitted

Study II
Catarina Sjölander, Bo Rolander, Johannes Järhult, Jan Mårtensson, Gerd

Ahlström. Health-related quality of life in family members of patients with an
advanced cancer diagnosis: A one-year prospective study. Health and Quality of
Life Outcomes 2012, 10:89. http://www.hqlo.com/content/10/1/89

Study III
Catarina Sjölander, Berith Hedberg, Gerd Ahlström
Striving to be prepared for the painful: Management strategies following a
family member’s diagnosis of advanced cancer BMC Nursing 2011 Oct 4;10:18.
http://www.biomedcentral.com/1472-6955/10/18

Study IV
Catarina Sjölander, Gerd Ahlström
The meaning and validation of social support networks for close family members
of persons with advanced cancer. BMC Nursing 2012, 11:17.
http://www.biomedcentral.com/1472-6955/11/17

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Contents

Abstract..................................................................................................................................................................5
Original Studies ...................................................................................................................................................7
Abbreviations and Definition..........................................................................................................................11
Introduction.........................................................................................................................................................12
Background.........................................................................................................................................................12
Prevalence and mortality of cancer disease ...............................................................................................13
Palliative care ..................................................................................................................................................14
Informal caregiving .........................................................................................................................................15
Health and health-related quality of life .......................................................................................................17
Cost of informal caregiving and health care................................................................................................18
Coping ..............................................................................................................................................................19
Social network and support ...........................................................................................................................20
Rationale for this thesis..................................................................................................................................21
Aim ........................................................................................................................................................................23
Methods ...............................................................................................................................................................24
Study Design I-IV ............................................................................................................................................24
Sampling procedure and participants ..........................................................................................................26
Sampling procedure (Studies I-IV) ..........................................................................................................26
Participants (Studies I-II)...........................................................................................................................26
Participants Studies (III-IV) .......................................................................................................................28
Data collection.................................................................................................................................................30
Questionnaires and interviews .................................................................................................................31
Self-reported questionnaire (Study I) .................................................................................................31
Review of medical records (Study I)...................................................................................................32
SF-36 (Study II) .....................................................................................................................................32
EQ-5D (Study II) ....................................................................................................................................32
Telephone interview (Study I)..............................................................................................................33
Interviews (Studies III-IV) .....................................................................................................................33
Analysis ............................................................................................................................................................34
Statistical analysis (Study I)......................................................................................................................34
Statistical analysis (Study II).....................................................................................................................35
Qualitative Analysis (Studies III-IV) .........................................................................................................36
Latent content analysis (Study III) ...........................................................................................................36
Latent content analysis (Study IV)...........................................................................................................37
Ethical considerations ....................................................................................................................................37
Results .................................................................................................................................................................39
Health consequences and costs of informal caregiving among family members of patients with
advanced cancer: a prospective follow-up study (Study I) .......................................................................39
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Health-related quality of life in family members of patients with an advanced cancer diagnosis: A
one-year prospective study (Study II) ..........................................................................................................42
Striving to be prepared for the painful: Management strategies following a family member’s
diagnosis of advanced cancer (Study III) ....................................................................................................43
The meaning and validation of social networks for family members of persons with advanced cancer
(Study IV) .........................................................................................................................................................44
Discussion ..........................................................................................................................................................47
Summary of main results ................................................................................................................................55
Methodological Considerations.....................................................................................................................56
Quantitative studies ........................................................................................................................................56
Design (Studies I-II) ...................................................................................................................................56
Participants (Studies I-II)...........................................................................................................................57
Analysis (Studies I-II).................................................................................................................................58
Qualitative studies ..........................................................................................................................................61
Credibility (Studies III-IV) ..........................................................................................................................61
Dependability (Studies III-IV)....................................................................................................................62
Transferability (Studies III-IV)...................................................................................................................62
Conclusions........................................................................................................................................................63
Clinical and research implications ...............................................................................................................63
Swedish Summary ............................................................................................................................................65
Acknowledgements ..........................................................................................................................................72
References ..........................................................................................................................................................75

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