Gerry Molloy

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Informal caregiving and enhancing self-care.

• Gerry Molloy
• University of Aberdeen

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Informal caregiving?
The provision of ongoing, unpaid, voluntary care
for chronically ill family or friends as opposed
to
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The scale of Informal caregiving?

• Present Close to 6 million people in UK (DoH,
  1999).
• Carers support is estimated at 57.4 billion
  (Carers UK, 2002).
• The future More care needing adults and less
  caregivers.
• A shortfall of caregivers in the next 20-30
  years?
• Scotlands ageing population 2001-2025.

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Source General Registrar, Scotland and the
Office for National Statistics.
Total population
Caregivers
Care needing population
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But why study informal caregiving?

• The health effects of receiving informal care
• Social relationships and health
• House et al., 1988, Science, 241. Isolation
  kills!
• Cohen et al. 1997, JAMA, 277. Social ties
  protect!

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But why study informal caregiving?

• The health effects of receiving informal care
• Social relationships and health
• House et al. 1988, Science, 241. Isolation kills!
• Cohen et al. 1997, JAMA, 277. Social ties
  protect!
• The health effects of providing informal care

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Key finding Caregiver strain A independent risk
factor for health problems in those providing
care (Schulz Beach, 1999, JAMA, 282,).
p, lt0.05
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But why study informal caregiving?

• The health effects of not receiving informal care
• Social relationships and health
• House et al. 1988, Science, 241. Isolation kills!
• Cohen et al. 1997, JAMA, 277. Social ties
  protect!
• Christakis Allison 2006, NEJM, 354
• The health effects of providing informal care

Bereavement effect caregiver strain effect
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Key finding Christakis Allison (2006)
Mortality after the hospitalization of a spouse.
NEJM, 354,

• N518,240 couples.
• y axis is mortality within one year of
  hospitalization.

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Key finding Christakis Allison (2006)
Mortality after the hospitalization of a spouse.
NEJM, 354,

• N518,240 couples.
• y axis is mortality within one year of
  hospitalization.

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Key finding Christakis Allison (2006)
Mortality after the hospitalization of a spouse.
NEJM, 354,

• N518,240 couples.
• y axis is mortality within one year of
  hospitalization.

12
But why study informal caregiving?

• The health effects of receiving informal care
• Social relationships and health
• House et al. 1988, Science, 241. Isolation kills!
• Cohen et al. 1997, JAMA, 277. Social ties
  protect!
• Christakis Allison 2006, NEJM, 354
• The health effects of providing informal care

Can intervening on the caregiver enhance
self-care of patients and their caregivers?
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Self-care?

• ..Self care includes the actions people take
  for themselves, their children and their families
  to stay fit and maintain good physical and mental
  health meet social and psychological needs
  prevent illness or accidents care for minor
  ailments and long-term conditions and maintain
  health and wellbeing after an acute illness or
  discharge from hospital.
• (DoH A Real Choice Self Care Support)

Can intervening on the caregiver enhance
self-care of patients and their caregivers?
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Key finding Kalra et al. (2004) Training carers
of stroke patients randomised controlled trial.
BMJ, 328, 1099-

• Aims To evaluate the effectiveness of training
  care givers in reducing burden of stroke in
  patients and their caregivers.
• Design - A single- blind, randomised controlled
  trial.
• Outcomes- Patient, caregiver and health care
  costs.
• Intervention - Training care givers in basic
  nursing and facilitation of personal care
  techniques.
• Sample 300 stroke patients returning home
  following stroke and their caregivers.

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Key finding Kalra et al. (2004) Training carers
of stroke patients randomised controlled trial.
BMJ, 328, 1099-
Caregiver outcomes
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Key finding Kalra et al (2004) Training carers
of stroke patients randomised controlled trial.
BMJ, 328, 1099-
Patient outcomes
Health care costs
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Caregivers enhancing self-care the evidence?

• Kalra et al., (2004) study would suggest yes
• Two recent meta-analysis suggest yes
• Social support and adherence DiMatteo MR. (2004)
  Social support and patient adherence to medical
  treatment a meta-analysis. Health Psychology,
  23, 207-218.
• Martire LM et al., (2004) Is It Beneficial to
  Involve a Family Member? A Meta-Analysis of
  Psychosocial Interventions for Chronic Illness.
  Health Psychology, 23, 599-611.

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Theoretical mechanisms- Behaviour change theory

• Enhancing self care is primarily about changing
  behaviour!
• Social cognitive theory (Bandura)
• Self regulation theory (Carver Scheier)
• Lorig and colleagues
• -self-management
• -expert patient program

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Social cognitive theory
Outcome expectancies
Self-Efficacy
Goals
Behaviour
Socio-structural Factors Facilitators Impediments
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Methods of behaviour change

• Caregiver could be involved in using these
  behaviour change techniques to enhance self care.
• Sources of self-efficacy (behaviour change
  technique).
• Personal mastery (Guided mastery)
• Vicarious experience (Modelling)
• Persuasion (Verbal persuasion)

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What studies need to be done?

• Caregivers as agents of behaviour change.
• Behaviour change methods
• that are theory based e.g. Banduras social
  cognitive theory although other models possible.
• Replicable
• Practical
• Expert patients and expert caregivers.

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Policy and practice

• Researchers, health professionals, policy makers
  and anyone involved in patient care should know
  that.
• Supporting the caregivers can improve outcomes
  for patients.

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Take home message(s)!

• The health of people connected by a social tie
  appears to be interdependent.
• Health care intervention on one effects the
  health of the other.
• Current methods of enhancing self care may not
  fully exploit the potential of intervening on the
  individual closest to the patient.
• Thank you!

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Funding and collaborators Professor Derek
Johnston, Aberdeen. Professor Marie Johnston,
Aberdeen. Professor Marion McMurdo,
Dundee. Professor Allan Struthers, Dundee. Dr.
Miles Witham, Dundee. Dr Ron MacWalter,
Dundee. Dr Val Morrison, Bangor. Health
Psychology Research Group at the University of
Aberdeen School of Psychology, University of St
Andrews. Further information E mail
g.molloy_at_abdn.ac.ukhttp//www.abdn.ac.uk/healthps
ychology
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• Title Informal caregiving and enhancing
  self-care
• Background
• The provision of unpaid voluntary care for
  chronically ill or disabled friends or family is
  referred to as informal caregiving. Informal
  caregiving is an important area for self-care
  research for at least three key reasons 1.
  Informal caregivers have been shown to be at risk
  for poor physical and psychological health. Many
  informal caregivers have health problems
  themselves that require appropriate self-care. 2.
  Chronically ill patients with readily available
  informal care have been shown to have better
  health outcomes than socially isolated patients.
  It has been widely accepted for some time that
  social isolation, in other words a lack of
  informal care, has a causal role in explaining
  poor health. Socially influenced self-care
  behaviour could potentially partially mediate
  this effect. 3. Informal caregivers have the
  potential to reduce health care costs by
  contributing to the alleviation of the health
  care burden of the ageing population in Scotland.
  
• The relationship between self-care and informal
  care in the community requires further
  elucidation in order to fulfill this potential.
• Aims of presentation (a) To outline some of the
  key empirical findings relating to three areas
  identified above. (b) To identify theoretical
  mechanisms whereby informal caregivers could
  influence self-care. (c) To discuss whether there
  is sufficient empirical evidence to demonstrate
  that informal caregivers can influence self-care
  and ultimately health outcomes. Relevance for
  policy and practice As the population ages it is
  becoming increasingly clear that much of the
  management of chronic conditions that was
  previously provided by the health service will
  move to the community in the coming years.
  Informal caregivers may have an important role to
  play in helping the chronically ill remain in
  thecommunity, particularly in supporting
  self-care behaviours. Policy and practice
  decisions about enhancing self care should factor
  in the impact of these decisions on informal
  caregivers and the potential role that informal
  caregivers may play in enhancing self-care.
  Collecting data on the provision of informal care
  in research projects and audit has the potential
  to increase our knowledge base and give clear
  guidance to policy and practice.