How is SelfCare defined in the literature

1
How is Self-Care defined in the literature?
Jones M, MacGillivary S, Kroll T, Zohoor A
2
Introduction
Hello
Self care - highlighted in the NHS Plan as a key
component of the model for Supporting People with
Long Term Conditions (Department of Health,
2005). Increase in interventions focused on
chronic disease management (Michie et al, 2003
Newman et al, 2004). There is a lack of
consensus about the meaning of terms such as
self-care and self-management and the additional
terms of self-management support.
3
Background to Scoping review
Hello

• Modernisation agenda within NHS Tayside
• Central nature of self-care, self-management to
  the Consortium
• all that people, patients and carers do to
  maintain health, prevent illness, seek and adhere
  to treatment, manage symptoms and side effects,
  accomplish recovery and rehabilitation and manage
  the impact of chronic illness and disability.
  (ASCR, 2005 http//www.ascr.ac.uk/selfcare.htm).

4
Study Aims
Hello

• To map the volume of the self-care and
  self-management literature in the last 10 years
• To conduct a thematic analysis of the range and
  nature of definitions of self-care and
  self-management in chronic disease.

5
Methods
Hello

• Three phases
• Phase 1 search literature using key words
  self-care and chronic disease
• map the ways in which the concept is currently
  understood and defined.
• Phase 2 will be concerned with best ways to find
  self-care literature
• map the volume and type of literature being
  published in this area.
• Phase 3 will focus upon existing review
  literature and will describe the nature and range
  of interventions for enhancing self-care that are
  reported.

6
Phases 1 and 2
Hello

• Phases 1 and 2 seek to answer the following
  research questions
• How is self-care defined in the chronic disease
  management literature?
• What is the volume of published self-care
  literature?
• How has this changed over time?
• Where is it being published?
• What types of literature are being published?

7
Methods
Hello

• Search multiple research literature databases
• (MEDLINE, Embase, CINAHL, DARE, BIDs, the
  Cochrane Library)
• Other sources of health related information
• (Websites for Department of Health, National
  research register, Bandolier, Guidelines
  Update, HTA publications)

8
Self-care AND chronic disease
Hello

• Specificity rather than sensitivity
• 921 publications during last 10 years in all
  databases.
• AZ and SM independently scrutinized abstracts
• Purposefully selected 198 (20) for full
  retrieval
• types of publication and study types (tutorials,
  reviews, RCTs, evaluation, qualitative etc)
• disease areas (Asthma, diabetes, cardiovascular,
  stroke, dementia etc)
• age group (children, adults, elderly).

9
Thematic analysis
Hello

• Data extraction
• Construction of a coding frame
• Iterative process to refine frame
• Application of coding frame to extracted data
  from 192 articles
• Identification of dimensions within emergent
  themes
• - P I (C) O

10
Findings A growing field
Hello
11

• Self care
• A multidimensional construct with definitions
  varying as to who is involved, why self care
  occurs, what is entailed, and how self care is
  accomplished (Becker et al, 2004).
• Self management
• Term first used by T. Creer (mid 1960s)
  self-management denoted the active participation
  of patients in their treatment (Lorig and Holman,
  2003).
• Self-management support
• a patient-centred collaborative approach to
  care that promotes patient activation, education
  and empowerment see p46 (Wagner et al., 2001
  Glasgow et al, 2001ab cited in Goldstein, 2004)

Hello
12
Self..

• Self management
• Self efficacy
• Self responsibility
• Self renewal
• Self help
• Self management groups
• Self care management
• Self advocacy
• Self health care
• Self efficacy
• Self determination

Hello

• Self healing
• Self regulation
• Self control
• Self care agency
• Self organisation
• Self surveillance
• Self report
• Self measurement
• Self monitoring/ blood pressure monitoring
• Self treat
• Self administration
• Self medication

13
Why self-care is being promoted
Hello

• Lessons from abroad (Dongbo et al., 2003)
• Worldwide trend of people living longer and
  increasing healthcare costs (Clark, 2003)
• Expectations of patients for greater involvement
  in healthcare (Baker, 2000)
• Service redesign initiatives (DOH, 2004)
• To protect patients from health services (Butler
  et al, (1979) cited in (Eales Stewart, 2001)

14
Who is involved in self-care? (P)

• The individual in self-initiated activity
  (Artinian, et al, 2002)
• The individual helping to support others
  (Beckingham Watt, 1995 cited in Ekpe, 2001)
• Patient, families, communities in collaboration
  with healthcare professionals and healthcare
  systems (WHO, 1993 cited in (Becker, 2004)
• Presence or absence of healthcare professionals
  (Becker, 2004)
• Not including professionals (Clark, 2003) or
  excluding professionals (Eales Stewart, 2001)

15
Who is involved in self-management?
Hello

• Patients, peers and support networks (Loeb et al,
  2003)
• Patient and practitioners (Barlow et al, 2002)
• Depression (Brown et al, 2001), Heart failure
  (Jaarsma et al, 2000), Asthma (Koch et al, 2004)

Who is involved in self-management support?

• Patients, practitioners and the healthcare system
  (Lorig et al, 2001)

16
What self-care entails (I)
Hello

• Intentional activity (Eales Stewart, 2001) or
  deciding to do nothing (Haugh et al, 1991)
• Taking responsibility (Monsivais, 2005)/asserting
  control (Thorne et al., 2003 )
• Managing emotion (Von Korff et al, 1997)
• Behaviour action in context of chronic disease,
  e.g diabetes (Chang et al, 2005) and heart
  failure (Jaarsma et al., 2000)
• Goal attainment and behavioural change (Hobbs,
  Wilson, Archie, 1999)

17
What self-management entails (I)
Hello

• Self-determination/control and self efficacy
  beliefs (Kralik, et al, 2004 Koch et al., 2004
  Lorig, 2003)
• Medical and Role management (Corbin Strauss
  (1988) cited in Neufeld Kniepmann, 2003)
• Management of emotions (Barlow, Stuart et al.,
  2002)
• Self regulation/self-monitoring (Nalagawa-Kogan
  et al, 1988)
• Symptom management (Barlow et al, 2002)
• Generic vs Illness specific behavioural tasks
• (Clark et al, 1991 cited in (Gallant, 2003)
• Individual versus group tasks (Barlow and Ellard,
  2004)

18
What self-management entails (I)
Hello

• Generic tasks/activities
• Patient education (Bodenheimer, 2003)
• Unspecified behaviours/daily activities (Kralik
  et al 2004)
• - Health promoting behaviours (Farrell et al,
  2004)
• - Social skills training and support (Barlow and
  Ellard, 2004)
• - Engagment with healthcare practitioners (Brown
  et al, 2001)
• - Adherence to treatment ( Newman et al 2004,
  p20)
• Religious coping (Dunn and Horgas, 2004)
• Behaviour change techniques (including cognitive
  symptom management, cognitive behavioural
  techniques for changing maladaptive assumptions,
  problem solving, weekly action planning,
  modelling, self-monitoring, feedback) (e.g.
  Farrell et al 2004)

19
What self-management entails (I)
Hello
Illness specific beliefs and behaviours Self-mana
gement programs must be based on patient
perceived problems. In arthritis major
patient concern is pain, not disability (Lorig
Holman, 2003a 2003b) - Arthritis (Broom, 2003)
People SM even when pursuing remedies with no
known benefit - Diabetes (Fournier et al, 2002)
- Asthma (Koch et al, 2004) - Elder care
(Leveille et al, 1998 Loeb et al, 2003) -
Vascular management (Berna et al)
20
What self-management support entails
Hello

• Key factors in chronic care management
• Community resources, health care organization,
  self management support, decision support,
  delivery system re-design, and clinical
  information systems (Bodenheimer, 2003)
• Provision of information and support to patients
  (and families) to better care for their illness
  (Epping-Jordan et al, 2000
• Development of new skills, e.g. problem solving
  and goal setting, with the patient as a key
  resource (Bodenheimer, 2003)
• Adoption of new behaviour (Michie et al, 2003)
• - Self-care and self-efficacy (Farrell et al,
  2004)

21
What self-management support entails
Hello
Generic programmes - Chronic Disease Management
Programme (Lorig et al 1999-2003) - Chronic
Care Model (cited in Glasgow et al, 2004) -
Expert Patient Programme (cited in (Lewis
Dixon, 2004) Disease specific applications - Diab
etes (Lorig et al, 2003 cited in (Goldstein,
2004) - Heart failure (Chronic Illness Care
Breakthrough Series, Glasgow (2002)
22
Self-care versus? (C)
Hello

• Self-care and medical care sometimes viewed as
  competing, rather than complementary strategies
  (Gruman VonKorff, 1999)
• Medical self care versus health self care
  (Becker, 2004).
• Medical care for chronic illness is rarely
  effective in the absence of adequate self-care.
  Self-care and medical care are both enhanced by
  effective collaboration among chronically ill
  patients and their families and health care
  providers (Gruman VonKorff, 1999)
• Dangers of putting patient care into the hands of
  patients (MacStravic, 1997)

23
Outcomes of self-care (O)
Hello

• Prevention of disease, limitation of illness and
  restoration of health. Improvement in the
  existing state of health which may be a chronic
  condition. Changes in lifestyle, maintenance of
  optimal levels of health (WHO (1983) cited in
  Eales Stewart, 2001)
• 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).
• Lifestyle changes (Barlow, Stuart et al., 2002)
• Maintain a satisfactory quality of life Barlow
  et al 2002 (Barlow et al, 2002 Barlow, Stuart et
  al., 2002)

24
Outcomes of self-management(O)
Hello

• Self-management has been described to minimize
  pain, share in decision-making about treatment,
  gain a sense of control over their lives (Lorig
  Holman, 1993, Barlow et al., 1999), reduce the
  frequency of visits to medical doctors and enjoy
  a better quality of life (Lorig et al, 1998
  Barlow et al. 2000). (Kralik et al 2004)
• Self management of chronic illness refers to the
  daily activities that individuals undertake to
  keep the illnesses under control, minimize its
  impact on physical health status and functioning,
  and cope with the psychological sequelae of the
  illness (Clark et al 1991).(Gallant, 2003)

25
Outcomes of self-management (O)
Hello

• Disease specific examples
• Heart-failure related self-care behaviour (HF-SC
  behaviour) is the behaviour that the patient
  undertakes to care for himself to promote health
  and well-being. This definition includes
  behaviours such as adherence to medication, diet
  and exercise, but it also refers to behaviours
  such as seeking assistance when symptoms occur or
  weighing daily.(Jaarsma et al., 2000)
• Self-management of chronic illness involves both
  the adoption of new behaviours (e.g., blood
  glucose monitoring in diabetes adherence to
  medication, etc.) as well as changes in existing
  behaviours (e.g., dietary modification).
  (Michie et al., 2003)

26
Outcomes of self-management support (O)
Hello

• Generic
• The programme improved weekly minutes of aerobic
  exercise, practice of cognitive symptom
  management, self-efficacy to manage own symptoms,
  and self-efficacy to manage own disease.
  Improvements in eight indices of health status
  and, on average, fewer hospitalizations. The
  programme improved participants' health
  behaviour, self-efficacy, and health status and
  reduced the number of hospitalizations six months
  after the course (Dongbo et al., 2003)
• Disease specific
• Improved skills, diabetes. Evaluation of an
  internet based patient education module, enabled
  patients to access their own records, upload
  blood glucose readings, enter medication,
  nutrition and exercise data into a personal diary
  (Goldberg et al., 2003)

27
Barriers to Self-Care
Hello

• Self-care emphasises the importance of access to
  decision support for patients (Gruman Von
  Korff, 1999).
• But there are barriers
• Personal
• Relating to practitioners
• Lack of access
• Culture
• Social deprivation

28
Theoretical perspectives/ Classification systems
Hello

• Orems 1985 self-care theory (cited in Artinian
  et al., 2002)
• 5 As model of self-management support. (Glasgow
  et al., 2003)
• Model for Effective Chronic Illness Care (Wagner
  et al., 2001)
• WHOs International Classification of
  Functioning, Disability, and Health (Cited in
  Neufeld Kniepmann, 2003)

29
Hello
30
Theories applied to self-care, SM, SMS

• Social Cognitive Theory including self-efficacy
• Cognitive Behavioural approaches
• Behavioural approaches
• Problem-solving/goal attainment
• Self-esteem
• Consumer Information Processing
• The Health Belief Model
• Theory of Reasoned Action
• The Stages of Change model.
• Stress, Appraisal and Coping
• Self Regulation Theory

Hello
31
Summary of definitions

• Self Care - an overarching concept including SC
  undertaken by the person to stay well or managing
  chronic illness, with or without support from an
  healthcare practitioner. May also include SM and
  SMS
• Self Management - managing the everyday impact of
  long term conditions. Involves the active
  participation of patients in their treatment
  (Lorig and Holman, 2003). Also involves, family,
  community in collaboration with peers,
  professionals and support networks.
• Self Management Support - the help that can be
  given to help people maintain an active and
  engaged life and minimise their symptoms.
  Involves access to programmatic intervention, and
  additionally involves the healthcare system

32
Conclusion
Hello

• The terms, self-care, self-management and
  self-management support are widely used and many
  definitions co-exist.
• Need clarity of definitions and consistent use in
  intervention programmes in chronic disease.
• Barriers to self-care have personal, professional
  and cultural dimensions
• Need to explore the evidence base for self-care
  in chronic disease in areas of social deprivation.

33
Hello
m.c.jones_at_dundee.ac.uk