Centre conducting the review
Queen's Joanna Briggs Collaboration School of Nursing, Queen's University Canada
Contact for the review
Name: Christina Godfrey RN MSc
Telephone: (613) 533-6000 ext. 78760
Facsimile: (613) 533-6331
Name: Christina Godfrey RN MSc
Assistant Director, Queen's Joanna Briggs Collaboration
Telephone: (613) 533-6000 ext. 78760
Facsimile: (613) 533-6331
Name: Margaret B. Harrison RN PhD
Telephone: (613) 533-6000 ext. 74760
Facsimile: (613) 533-6331
Name: Rosemary Lysaght PhD
Name: Marianne Lamb RN PhD
Telephone: 613-533-6000 x74764
Name: Ian Graham PhD
Name: Patricia Oakley MLIS
Expected completion date
The incidence of chronic disease and numbers of people who live with complex chronic medical needs is increasing worldwide.1;2 Over 3,300,000 Canadians and at least 125 million Americans live with chronic disease and report some level of disability that poses a unique problem to their health.3;4 Chronic disease is typically regarded as “a condition that has lasted or is expected to last a year or longer, limits what one can do, and may require ongoing care.”5,p.438 This on-going care commonly takes the form of self-care. In 2005 the Department of Health in the United Kingdom proposed the following comprehensive definition of self-care:
Self care is a part of daily living. It is the care taken by individuals towards their own health and well being, and in their role as carers includes the care extended to their children, family, friends and others, whether in their homes, neighbourhoods, local communities, or elsewhere. Self care includes the actions individuals and carers take for themselves, their children, their families and others 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.6,p.5
Any debilitating or disabling condition, such as stroke or arthritis, may compromise an individual's ability to perform this self-care that is part of their daily living. Self-care is an important element for these individuals as they adapt to life with disabilities, but may pose challenges both to individuals and those providing care. Disability refers to “the outcome or result of a complex relationship between an individual's health condition and personal factors, and of the external factors that represent the circumstances in which the individual lives.”7,p.9 When an individual presents with multiple conditions, however, this complex relationship may be disrupted, and their capacity to provide their own self-care further reduced. For example, individuals with osteoarthritis have a high rate of comorbidity with chronic conditions such as hypertension, cardiovascular diseases, obesity, and respiratory diseases. Both morbidity count and severity of the diseases are associated with limitations in activities and increased pain for these individuals.8 Similarly, individuals with diabetes and comorbid common mental disorders testify to lower medication adherence and greater difficulties managing their medical care.9 It is estimated that 9 million Canadians and over 60 million Americans have been diagnosed with one or more chronic health conditions.4;10;11 Integrating self-management tasks for coexisting and often interacting diseases is complex,12 and may reduce an individual's and/or their family's ability to perform self-care activities.
Individuals performing therapeutic self-care (self-care activities performed to address illness or disability) assess and monitor their symptoms, perform treatments (e.g., medication administration) and evaluate the results. For individuals with multiple conditions this becomes a complex task as they are frequently required to follow several potentially conflicting self-management recommendations.2 Statements such as: “hard to keep on top of needing different medications at different times"; “medication for one affects another health problem"; and “can't exercise for diabetes due to the breathing", illustrate some of the struggles individuals report when balancing self-care with multiple conditions.4,p.19 To date substantive work has been undertaken regarding self-care strategies however it is largely disease specific13 and has not been adapted to situations in which individuals present with multiple concurrent conditions. Furthermore, management and treatment based on single disease conditions may be mutually incompatible, becoming ineffectual, or at worst, harmful.2 The research literature lacks detail regarding how health care professionals can best support the self-care efforts of those with multiple conditions.14
In their study on self-management for patients with complex medical needs, Bayliss and colleagues call for “a comprehensive, stepped-care menu of self-management support that varies in content, intensity, and delivery modality.”2,p.170 They suggest further investigation to “clarify complex chronic care self-management needs and tasks, and to develop the organizational infrastructure required to support its delivery in large populations.”2,p.172 In order to provide this level of integrated support, health care professionals require evidence concerning the interventions for self-care across multiple disease groupings.
For health care professionals, supporting self-care can be particularly difficult “given that clinical guidelines are tailored to individual illnesses, and specialized care may involve multiple providers that need to work together to provide patient-centered, coordinated care.”15,p.373 Rehabilitation is “an educational, problem-solving process that focuses on activity limitations and aims to optimize patient social participation and well-being, and so reduce stress on carer/family.”16,p.814 To achieve these goals, health care professionals focus on developing strategies to support individuals with daily routines for self-care. Unfortunately, research that would inform practice about self-care support is limited, spread across many fields, and difficult to access. Furthermore, research indicates that some health care professionals tend to rely on past education or on the opinions of their colleagues.17
Integration of self-care into treatment is typically studied within individual disease groups, often with small samples. Yet self-care needs and concerns span illness groups as well as patient populations throughout the age span. We propose to develop an enquiry that will examine all current evidence across multiple chronic disease populations (e.g., stroke, heart disease, musculoskeletal conditions) rather than focusing on a single condition/disease.
This study will integrate the evidence on interventions aimed at initiating or enhancing individuals' engagement in self-care activities. Initiating a self-care activity refers to establishing a behaviour that was not previously part of the individual's repertoire, whereas enhancing self-care activities refers to the support of or encouragement for already existing behaviours. Self-care activities include any behaviours performed by the individual on their own behalf of by another as assistance, to address health, illness, injury or disability. Interventions to initiate or enhance self-care could include strategies such as the provision of written material or computerized programs to assist individuals to quit smoking, or the creation of an asthma self-management plan to initiate asthma self-care activities. Given the challenge of performing self-care with multiple conditions, evidence from multiple chronic diseases/disabilities will be synthesized. To provide this knowledge, the Cochrane Library of systematic reviews will be used as the primary data source, for the following reasons:
- The Cochrane Library contains systematic reviews performed by 51 different Review Groups, each of which focuses on a different disease or condition. Cutting across this repository of data will provide the evidence relevant to self-care across multiple chronic disease/disability groupings.
- The Cochrane Library is a repository of systematic reviews. Currently, systematic reviews are the highest level of evidence available.18 Integrating the evidence at this level will provide the “current state of knowledge” on self-care and offer practitioners a standard of evidence they can confidently adopt into practice.
As an integrative study, this review will perform an ‘overview of reviews.’ In the Cochrane handbook for the performance of systematic reviews, Becker and Oxman19 define an overview of reviews as being “intended primarily to summarize multiple Cochrane Intervention reviews addressing the effects of two or more potential interventions for a single condition or health problem.” However, this integrative study will deviate from this process by integrating the evidence across conditions or health problems.
The objective is to perform a cross-cutting, integrative study to determine the ‘state of knowledge’ relevant to interventions for self-care. The overall research question for the integrative study is:
What is the evidence on interventions to initiate or enhance individuals' self-care activities across population groups in the Cochrane repository of systematic reviews?
The synthesis process will be guided by the following specific questions:
- What intervention strategies have been described?
- How have the outcomes of interventions to initiate or enhance individuals' self-care activities been measured?
This integrative study will further identify:
- What evidence that is of value to rehabilitation practice has been provided by this cross-cutting investigation?
- What gaps in the research does this evidence reveal?
- Is there a conceptual map or framework to facilitate the integration of this evidence?
Criteria for considering studies for this review
Population - individuals who engage, or have the potential to engage in self-care activities (no age stipulation);
Intervention - strategies to initiate or enhance self-care activities;
Context - in the context of chronic disease or disability as represented by the 51 review groups of the Cochrane Collaboration. Health care settings across the continuum of care, including acute, community or rehabilitation settings
Outcomes - the successful engagement of the individual in self-care activities; the sustainment of self-care activities; health outcomes
Types of studies
This integrative study will consider all systematic reviews contained within the Cochrane Library that describe interventions aimed at initiating or enhancing self-care activities.
Types of participants
This integrative study will consider systematic reviews that focus on individuals who engage in or have the potential to engage in self-care activities. For example, individuals who have the potential to engage in a new (perhaps specific) self-care activity would be individuals recently diagnosed with a chronic disease such as asthma or diabetes mellitus. Individuals who currently engage in self-care activities (but may require ongoing support or encouragement) would be individuals who currently perform self-care activities to address chronic disease, injury or disability. Changes in life, such as a decrease in visual acuity with aging, may require an adaptation of self-care activities.
Types of intervention(s)/phenomena of interest
This integrative study will consider systematic reviews that describe intervention strategies focused on initiating or enhancing self-care activities.
Types of outcomes
Outcomes of interest for this study include: the successful engagement of the individual in self-care activities; the sustainment of self-care activities; or health outcomes. The successful engagement in self-care activities would be indicated by the individual actively performing all (or some aspects) of a new self-care behaviour. For example, a child recently diagnosed with diabetes mellitus may begin to check their own blood sugar levels but rely on a parent to inject the insulin. The sustainment of self-care activities would be indicated by the individual actively continuing to perform a self-care behaviour that was already part of their repertoire. For example, an adolescent diagnosed with asthma as a child and who continues to use an inhaler to prevent asthmatic attacks. These outcomes would generally be measured by observation or self-report through questionnaires or participant diaries. In some situations, for example with children, parents may provide the report on the outcomes.
Health outcomes refer to changes in health status such as a decrease in pain, stability in blood sugar levels, reduction in asthmatic attacks or decrease in the frequency of epileptic seizures. For individuals with disability, outcomes could include the ability to engage in work, education, or social environments. Health outcomes could be measured by self-report through questionnaires or interviews, or by administrative records (when measuring utilization of health care services).
Search strategy for identification of studies
The search strategy aims to find all systematic reviews contained within the Cochrane Library. A two-step search strategy will be utilized. An initial limited search of the Cochrane Library will be undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe the review. A second search using all identified keywords and index terms will then be undertaken.
Electronic searching is expected to result in the lists of reviews with details of title, author, source, and abstract. All identified reviews will be assessed on the basis of the abstract by two reviewers, and full reports will be retrieved for all reviews that meet the inclusion criteria. Where doubt exists, the full review will be retrieved.
Initial keywords will include, but not be limited to:
Self care skills
Methods of the review
Assessment of methodological quality
This integrative study will assess the quality of included reviews using the JBI Critical Appraisal Checklist for Systematic Reviews. (Appendix I)
Data will be extracted from the systematic reviews using an adaptation of the standardized data extraction form, the JBI Data Extraction Form for Systematic Review of Experimental/Observational Studies (Appendix II).
The extraction tool will be adapted to reflect the self-care intervention strategy and outcomes measured.
Given the heterogeneity of the range of self-care intervention strategies, this integrative study will synthesize and discuss the results in narrative form.
The lead author would like to acknowledge the Canadian Institutes of Health Research (CIHR) for funding support provided by a Knowledge Translation Award (KPD 85181).
Conflicts of interest
(1) World Health Organization. Preventing chronic diseases: a vital investment. WHO Global Report. Public Health Agency of Canada; 2005.
(2) Bayliss EA, Bosworth HB, Noel PH, Wolff JL, Damush TM, Mciver L. Supporting self- management for patients with complex medical needs: recommendations for a working group. Chronic Illness 2007 Jun;3(2):167-75.
(3) Health Canada. Healthy Living: Just for You - People with Disabilities. Health Canada 2008 [cited 2008 Apr 19];Available from: URL: http://www.hc-sc.gc.ca/hl-vs/ify-spv/dis-incae.html
(4) Bayliss EA, Steiner JF, Fernald DH, Crane LA, Main DS. Descriptions of barriers to self- care by persons with comorbid chronic diseases.[see comment]. Annals of Family Medicine 2003 May;1(1):15-21.
(5) Anderson GF. Physician, public, and policymaker perspectives on chronic conditions. Archives of Internal Medicine 2003 Feb 24;163(4):437-42.
(6) Department of Health. Self care support: A compendium of practical examples across the whole system of health and social care. United Kingdom: National Health System; 2005.
(7) World Health Organization. Towards a common language for disability functioning and health ICF. Geneva: World Health Organization; 2002.
(8) van Dijk GM, Veenhof C, Schellevis F, Hulsmans H, Bakker JP, Arwert H, et al. Comorbidity, limitations in activities and pain in patients with osteoarthritis of the hip or knee. BMC Musculoskeletal Disorders 2008;9:95.
(9) Das-Munshi J, Stewart R, Ismail K, Bebbington PE, Jenkins R, Prince MJ. Diabetes, common mental disorders, and disability: findings from the UK National Psychiatric Morbidity Survey. Psychosomatic Medicine 2007 Jul;69(6):543-50.
(10) Statistics Canada. Why Health Care Renewal Matters: Learning from Canadians with Chronic Health Conditions. Facts and Figures - Chronic Health Conditions in Canada. 2007.
(11) Health Council of Canada. Population patterns of chronic health conditions in Canada: A data supplement to Why Health Renewal Matters: Learning from Canadians with Chronic Health Conditions. 2007.
(12) Bayliss EA, Ellis JL, Steiner JF. Barriers to self-management and quality-of-life outcomes in seniors with multimorbidities. Annals of Family Medicine 2007 Sep;5(5):395-402.
(13) Bayliss EA, Edwards AE, Steiner JF, Main DS. Processes of care desired by elderly patients with multimorbidities. Family Practice 2008 Aug;25(4):287-93.
(14) Sevick MA, Trauth JM, Ling BS, Anderson RT, Piatt GA, Kilbourne AM, et al. Patients with complex chronic diseases:Perspectives on supporting self-management. Journal of General Internal Medicine 2007;22 (Suppl 3):438-44.
(15) Kupersmith J. Managing patient and system complexities to improve the quality and outcomes of chronic care. Journal of General Internal Medicine 2007;22 (Suppl 3):373.
(16) Wade DT. Describing rehabilitation interventions. Clinical Rehabilitation 2005;19:811-8.
(17) Rappolt S, Tassone M. How rehabilitation therapists gather, evaluate, and implement new knowledge. Journal of Continuing Education in the Health Professions 2002;22(3):170-80.
(18) Pearson A, Wiechula R, Court A, Lockwood C. The JBI model of evidence-based healthcare. International Journal of Evidence-Based Health Care 2005;3:207-15.
(19) Becker LA, Oxman AD. Overview of reviews. In: Higgins JPT, Green S, editors. Cochrane Handbook for Systematic Reviews of Interventions. 5.0.2 ed. The Cochrane Collaboration; 2009.
Appendix I - Assessment of methodological quality
Appendix II - Data extraction instrument