HEALTH CAPABILITY OF FAMILY CAREGIVERS
Contribution of, and relations between its
dimensions
Barbara BUCKI
1,2, Michèle BAUMANN
1, Elisabeth SPITZ
21
INSIDE, Institute Health and Behaviour, University of Luxembourg
Family caregivers and their health
A growing public health challenge
◦
Complex care provided day to day in addition to personal life
◦
About10% of the population
A lifestyle which entails risks for their health
(2 meta-analyses)
:
◦
Problems with physical health
(Vitaliano & al., 2003)
◦
Stress, depression,
(Pinquart & Sörensen, 2003)
+
Social isolation
(Spitz & Sordes, 2007)
2
Context
Methodology
Results
Discussion
Vitaliano, P. P., Zhang, J., & Scanlan, J. M. (2003). Is caregiving hazardous to one’s physical health? A meta-analysis. Psychological bulletin, 129(6), 946–972.
Pinquart, M., & Sörensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychology and aging, 18(2), 250.
Spitz, E., & Sordes Ader, F. (2007). Qualité de vie, entourage, soutien social. In Qualité de vie et maladies
rénales chroniques: satisfaction des soins et autres Patient-Reported Outcomes. John Libbey
The capability approach
Developed from the 1980’s by Amartya Sen
(Sen, 1992)
◦
Welfare economist and philosopher
◦
Nobel Price of Economy in 1998
A way to conceive quality of life
◦
Alternative to economic models of development:
Resourcist (economic development)
Utilitarist (improvement of satisfaction)
Capability
◦
What a person can do or be according to the choices which really are
available to them
3
Context
Methodology
Results
Discussion
Sen,A. (1993). Capability and well-being. The quality of life, 1(9), 30–54. Nussbaum, M.C., 2011. Creating capabilities. Harvard University Press. Venkatapuram, S. (2011). Health Justice. Polity Press.
Coast, J., Flynn, T. N., Natarajan, L., Sproston, K., Lewis, J., Louviere, J. J., & Peters, T. J. (2008). Valuing the ICECAP capability index for older people. Social science & medicine, 67(5), 874–882.
Kinghorn, P. B. (2010). Developing a Capability Approach to Measure and Value Quality of Life: An application to
chronic pain. University of East Anglia.
Al-Janabi, H., Flynn, T. N., & Coast, J. (2012). Development of a self-report measure of capability wellbeing for adults: the ICECAP-A. Quality of Life Research, 21(1), 167–176.
Capability approach:
Application to health
•
Capability to be healthy
•
Fundamental for human dignity
(Sen, 1993; Nussbaum, 2011)
•
A complex set of capabilities
(Venkatapuram, 2011)
Contribution of health economics
◦
Finding indicators of capability to evaluate health interventions
◦
Reconsider health & health-related quality of life to measure effectiveness
◦
Questionnaires of capacity to accomplish valued domains of life
(Coast & al., 2008 ; Kinghorn, 2010 ; Al-Janabi & al., 2012)
4
The Health Capability Paradigm
(Ruger, 2010)
•
Medical ethics and health politics
•
Theory of a right to health
•
Capacity to achieve one’s optimal health
o
Health status (functioning)
o
The way a person takes care of his/her health (agency)
oChoice?
5
Ruger, J. P. (2010a). Health and social justice. Oxford University Press, USA.
Conceptual model of health capability
6
Public health, health care system Enabling and interactive environment Access to high-quality prevention and
treatment
Health values and norms Cultural barriers
Intermediate social context Social norms
Social networks (family, school…) Group membership Neighborhood/ Community Life circumstances Biology and genetic predisposition Genes Personality Predisposition to disease Macrosocial, political, and economic environment Economic opportunities Moral norms and values
Social structures Empowerment
Security
Health capability
Capacity to achieve one’s
optimal health
Ruger, J. P. (2010). Health capability: conceptualization and operationalization. American Journal of Public
Health, 100(1), 41–49.
HCFC-8 domains:
a tool for measuring
health capability of family caregivers
National stroke survey - Luxembourg
Health Capability of Family Caregivers questionnaire (8
domains - 20 items; Bucki, 2014)
◦
Psychological health (3 items),
◦
Physical health (2 items),
◦
Self-efficacy (2 items),
◦
Lifestyle value (3 items),
◦
Family support (3 items),
◦
Social capital (3 items),
◦
Material condition / Security (2 items),
◦
Satisfaction with health services (2 items)
Psychometric and content validity tested
7
Bucki, B. (2014). Health capability of family caregivers: Analyses of the paradigm and means of operationalization. University of Lorraine and university of Luxembourg, Metz, France.
Aim
8
To determine:
- Which relations exist between the
dimensions of health capability,
- Which dimensions contribute the most to
health capability
Methodology
Participants
Family caregivers who participated to the Luxembourg stroke survey
(n=62)
Design
Face-to-face structured interviews
Instrument
HCFC-8 domains questionnaire
Statistical analyses
Bayesian approach
Structural equation modelling
9
Characteristics of the sample
10
n=62
64.5% women
85% partners
Average age : 59.3 (± 13,7)
≈ 50% of caregivers accompany victims who have motor and/or
sensory (especially pain) impairments
Domains of health capability :
Which relations ?
11 Family support Social capital Material conditions and security Enabling health services Psychological health Physical health Self-efficacy towards health services Lifestyle valueDomains of health capability :
Which relations ?
12 Family support Social capital Material conditions and security Enabling health services Psychological health Physical health Self-efficacy towards health services Lifestyle value 0.59 *** 0.47 * 0.39 * 0.49 * 0.43 * 0.41 *Domains of health capability :
Which relations ?
13 Family support Social capital Material conditions and security Enabling health services Psychological health Physical health Self-efficacy towards health services Lifestyle value 0.60 *** 0.42 * 0.43 * 0.49 *Domains of health capability :
Which relations ?
14 Family support Social capital Material conditions and security Enabling health services Psychological health Physical health Self-efficacy towards health services Lifestyle value 0.42 * 0.47 * 0.53 ** 0.57 **1.00* 1.23 2.83 1.00*
Domains of health capability :
Which contribution ?
15 1.18 0.96 Psychological healthBodily image and appearence Self-esteem Negative feelings (rev.)
Family support
Difficulty to get helped
(rev.)
Family works together
Feel abandonned(rev.)
Material conditions and
security safety and securityFreedom, physical
Financial resources
Social capital Personal relationships
Sexual activity Social support Interactions with health services 0.86 0.62 0.64 1.65 2.14 4.64 0.52 0.56 0.66 0.79 0.70 1.00* 0.78 0.65 1.00* 1.52 2.92 1.00* 1.00* 0.86 0.88 1.02 Availability of information and help
Help received
Lifestyle value
Want to care Caring makes feel good
Enjoy caring
Physical health
Tired all the time (rev.)
Health got worse (rev.)
Self-efficacy towards health services Confident to know whom to contact Ability to get information 0.94 0.79 3.24 3.47 0.96 0.86 1.04 1.00* 0.98 1.39 1.00* 1.02 1.23 1.60 1.81 1.95 1.79 1.72 2.15 1.46 * Reference value
1.00* 1.23 2.83 1.00*
Domains of health capability :
Which contribution ?
16 1.18 0.96 Psychological healthBodily image and appearence Self-esteem Negative feelings (rev.)
Difficulty to get helped
(rev.)
Family works together
Feel abandonned(rev.)
Material conditions and
security safety and securityFreedom, physical
Financial resources
Social capital Personal relationships
Sexual activity Social support Interactions with health services 0.86 0.62 0.64 1.65 2.14 4.64 0.52 0.56 0.66 0.79 0.70 1.00* 0.78 0.65 1.00* 1.52 2.92 1.00* 1.00* 0.86 0.88 1.02 Availability of information and help
Help received
Lifestyle value
Want to care Caring makes feel good
Enjoy caring Tired all the time (rev.)
Health got worse (rev.)
Self-efficacy towards health services Confident to know whom to contact Ability to get information 0.94 0.79 3.24 3.47 0.96 0.86 1.04 1.00* 0.98 1.39 1.00* 1.02 1.23 1.60 1.81 1.79 1.72 1.46 * Reference value Physical health 2.15 Family support 1.95
1.00* 1.23 2.83 1.00*
Domains of health capability :
Which contribution ?
17 1.18 0.96 Psychological healthBodily image and appearence Self-esteem Negative feelings (rev.)
Difficulty to get helped
(rev.)
Family works together
Material conditions and
security safety and securityFreedom, physical
Financial resources
Social capital Personal relationships
Sexual activity Social support Interactions with health services 0.86 0.62 0.64 1.65 2.14 0.52 0.56 0.66 0.79 0.70 1.00* 0.78 0.65 1.00* 1.52 2.92 1.00* 1.00* 0.86 0.88 1.02 Availability of information and help
Help received
Lifestyle value
Want to care Caring makes feel good
Enjoy caring Self-efficacy towards health services Confident to know whom to contact Ability to get information 0.94 0.79 0.96 0.86 1.04 1.00* 0.98 1.39 1.00* 1.02 1.23 1.60 1.81 1.79 1.72 1.46 * Reference value Physical health 2.15 Family support 1.95
Tired all the time
(rev.)
Health got worse
(rev.)
3.47 3.24
Feel abandonned
(rev.) 4.64
Enhance family caregivers’ health capability
Find ways to:
◦
relieve them physically,
◦
foster family networking around the ill
+
giving priority to the socially disadvantaged
For example:
◦
Trialogues (Amering, 2010)
◦
Access and training to Information and Communication Technologies
18
Context
Methodology
Results
Discussion
Limits
Sample size
Impossible to generalize the results
Need to validate the HCFC questionnaire with a larger sample
Cross-sectional study
How has health capability evolved ?
19
Perspectives
Finalize the HCFC questionnaire
◦
Complete the domains and items
◦
Administer to a new and larger sample of caregivers
◦
Validate the final version
Applications of the HCFC questionnaire
◦
Evaluation of complex health interventions
◦
Diagnosis of family caregivers’ needs
A European research project in preparation
20
Thank you for your attention.
21
