Katharina Kovacs Burns

Systematic review of knowledge translation strategies in the allied health professions

BackgroundKnowledge translation (KT) aims to close the research-practice gap in order to realize and maximize the benefits of research within the practice setting. Previous studies have investigated KT strategies in nursing and medicine; however, the present study is the first systematic review of the effectiveness of a variety of KT interventions in five allied health disciplines: dietetics, occupational therapy, pharmacy, physiotherapy, and speech-language pathology.MethodsA health research librarian developed and implemented search strategies in eight electronic databases (MEDLINE, CINAHL, ERIC, PASCAL, EMBASE, IPA, Scopus, CENTRAL) using language (English) and date restrictions (1985 to March 2010). Other relevant sources were manually searched. Two reviewers independently screened the titles and abstracts, reviewed full-text articles, performed data extraction, and performed quality assessment. Within each profession, evidence tables were created, grouping and analyzing data by research design, KT strategy, targeted behaviour, and primary outcome. The published descriptions of the KT interventions were compared to the Workgroup for Intervention Development and Evaluation Research (WIDER) Recommendations to Improve the Reporting of the Content of Behaviour Change Interventions.ResultsA total of 2,638 articles were located and the titles and abstracts were screened. Of those, 1,172 full-text articles were reviewed and subsequently 32 studies were included in the systematic review. A variety of single (n = 15) and multiple (n = 17) KT interventions were identified, with educational meetings being the predominant KT strategy (n = 11). The majority of primary outcomes were identified as professional/process outcomes (n = 25); however, patient outcomes (n = 4), economic outcomes (n = 2), and multiple primary outcomes (n = 1) were also represented. Generally, the studies were of low methodological quality. Outcome reporting bias was common and precluded clear determination of intervention effectiveness. In the majority of studies, the interventions demonstrated mixed effects on primary outcomes, and only four studies demonstrated statistically significant, positive effects on primary outcomes. None of the studies satisfied the four WIDER Recommendations.ConclusionsAcross five allied health professions, equivocal results, low methodological quality, and outcome reporting bias limited our ability to recommend one KT strategy over another. Further research employing the WIDER Recommendations is needed to inform the development and implementation of effective KT interventions in allied health.

Diabetes Attitudes Wishes and Needs 2 (DAWN2): A multinational, multi-stakeholder study of psychosocial issues in diabetes and person-centred diabetes care

AIMS The Diabetes Attitudes Wishes and Needs 2 (DAWN2) study aims to provide a holistic assessment of diabetes care and management among people with diabetes (PWD), family members (FM), and healthcare professionals (HCPs) and explores potential drivers leading to active management. METHODS DAWN2 survey over 16,000 individuals (∼9000 PWD, ∼2000 FM of PWD, and ∼5000 HCPs) in 17 countries across 4 continents. Respondents complete a group-specific questionnaire; items are designed to allow cross-group comparisons on common topics. The questionnaires comprise elements from the original DAWN study (2001), as well as psychometrically validated instruments and novel questions developed for this study to assess self-management, attitudes/beliefs, disease impact/burden, psychosocial distress, health-related quality of life, healthcare provision/receipt, social support and priorities for improvement in the future. The questionnaires are completed predominantly online or by telephone interview, supplemented by face-to-face interviews in countries with low internet access. In each country, recruitment ensures representation of the diabetes population in terms of geographical distribution, age, gender, education and disease status. DISCUSSION DAWN2 aims to build on the original DAWN study to identify new avenues for improving diabetes care. This paper describes the study rationale, goals and methodology.

Personal Accounts of the Negative and Adaptive Psychosocial Experiences of People With Diabetes in the Second Diabetes Attitudes, Wishes and Needs (DAWN2) Study

OBJECTIVE To identify the psychosocial experiences of diabetes, including negative accounts of diabetes and adaptive ways of coping from the perspective of the person with diabetes. RESEARCH DESIGN AND METHODS Participants were 8,596 adults (1,368 with type 1 diabetes and 7,228 with type 2 diabetes) in the second Diabetes Attitudes, Wishes and Needs (DAWN2) study. Qualitative data were responses to open-ended survey questions about successes, challenges, and wishes for improvement in living with diabetes and about impactful experiences. Emergent coding developed with multinational collaborators identified thematic content about psychosocial aspects. The κ measure of interrater reliability was 0.72. RESULTS Analysis identified two negative psychosocial themes: 1) anxiety/fear, worry about hypoglycemia and complications of diabetes, depression, and negative moods/hopelessness and 2) discrimination at work and public misunderstanding about diabetes. Two psychosocial themes demonstrated adaptive ways of coping with diabetes: 1) having a positive outlook and sense of resilience in the midst of having diabetes and 2) receiving psychosocial support through caring and compassionate family, friends, health care professionals, and other people with diabetes. CONCLUSIONS The personal accounts give insight into the psychosocial experiences and coping strategies of people with diabetes and can inform efforts to meet those needs and capitalize on strengths.

‘Practical’ resources to support patient and family engagement in healthcare decisions: a scoping review

BackgroundExtensive literature exists on public involvement or engagement, but what actual tools or guides exist that are practical, tested and easy to use specifically for initiating and implementing patient and family engagement, is uncertain. No comprehensive review and synthesis of general international published or grey literature on this specific topic was found. A systematic scoping review of published and grey literature is, therefore, appropriate for searching through the vast general engagement literature to identify ‘patient/family engagement’ tools and guides applicable in health organization decision-making, such as within Alberta Health Services in Alberta, Canada. This latter organization requested this search and review to inform the contents of a patient engagement resource kit for patients, providers and leaders.MethodsSearch terms related to ‘patient engagement’, tools, guides, education and infrastructure or resources, were applied to published literature databases and grey literature search engines. Grey literature also included United States, Australia and Europe where most known public engagement practices exist, and Canada as the location for this study. Inclusion and exclusion criteria were set, and include: English documents referencing ‘patient engagement’ with specific criteria, and published between 1995 and 2011. For document analysis and synthesis, document analysis worksheets were used by three reviewers for the selected 224 published and 193 grey literature documents. Inter-rater reliability was ensured for the final reviews and syntheses of 76 published and 193 grey documents.ResultsSeven key themes emerged from the literature synthesis analysis, and were identified for patient, provider and/or leader groups. Articles/items within each theme were clustered under main topic areas of ‘tools’, ‘education’ and ‘infrastructure’. The synthesis and findings in the literature include 15 different terms and definitions for ‘patient engagement’, 17 different engagement models, numerous barriers and benefits, and 34 toolkits for various patient engagement and evaluation initiatives.ConclusionsPatient engagement is very complex. This scoping review for patient/family engagement tools and guides is a good start for a resource inventory and can guide the content development of a patient engagement resource kit to be used by patients/families, healthcare providers and administrators.

Analyzing the Impact of Disability Legislation in Canada and the United States

Experiences with disability legislation are different between Canada and the United States, but both countries have experiences to share regarding trends and best practices, as well as challenges addressing the accessibility of public facilities, housing, and transportation for persons with disabilities. Based on this distinction, a literature review was conducted focusing on the similarities and differences between Canadian and American disability legislation, primarily for trends and best practices that have resulted in positive outcomes for people with disabilities. Three times as much literature exists on U.S. experiences based on disabilities legislation over the past two decades. One major reason is that the United States has federal legislation specific to disabilities (dating back to 1990) and Canada has none. The impact of federal legislation is seen across each American state. Without federal legislation in Canada, the provinces are left to implement their own, often different, practices. This country comparison includes gaps in practices and considerations for improvements.

Exploring Patient Engagement Practices and Resources within a Health Care System: Applying a Multi-Phased Mixed Methods Knowledge Mobilization Approach

Abstract A Canadian health authority developed a patient engagement framework, but had no standard resources or supports to prepare staff, leaders or patients/families for meaningful patient engagement. A study was conducted to determine what resources, preparation and supports were needed for patients, providers and leaders to be meaningfully engaged in patient-centred care decisions, and for the contents of a resource ‘kit.’ A multi-phased mixed methods approach included a needs assessment with patients, providers and leaders on what was essential for the patient engagement experience; a scoping literature review on appropriate resources; a patient engagement ‘Resource Kit’ based on findings; and a pilot and evaluation of the kit. This integrated approach resulted in a resource kit that was relevant in terms of content, comprehensive in the volume of resources, and tailored to the unique needs of patients/families, providers and leaders. Continuing evolution and evaluation of the kit was seen as critical.

Canadian rural-urban differences in end-of-life care setting transitions.

Few studies have focused on the care setting transitions that occur in the last year of life. A three part mixed-methods study was conducted to gain an understanding of the number and implications or impact of care setting transitions in the last year of life for rural Canadians. Provincial health services utilization data, national online survey data, and local qualitative interview data were analyzed to gain general and specific information for consideration. Rural Albertans had significantly more healthcare setting transitions than urbanites in the last year of life (M=4.2 vs 3.3). Online family respondents reported 8 moves on average occurred for family members in the last year of life. These moves were most often identified (65%) on a likert-type scale as “very difficult,” with the free text information revealing these trips were often emotionally painful for themselves and physically painful for their ill family member. Eleven informants were then interviewed until data saturation, with constant-comparative data analysis conducted for a more in-depth understanding of rural transitions. Moving from place to place for needed care in the last year of life was identified as common and concerning for rural people and their families, with three data themes developing: (a) needed care in the last year of life is scattered across many places, (b) travelling is very difficult for terminally-ill persons and their caregivers, and (c) local rural services are minimal. These findings indicate planning is needed to avoid unnecessary end-of-life care setting transitions and to make needed moves for essential services in the last year of life less costly, stressful, and socially disruptive for rural people and their families.

Age-based differences in care setting transitions over the last year of life

Context. Little is known about the number and types of moves made in the last year of life to obtain healthcare and end-of-life support, with older adults more vulnerable to care setting transition issues. Research Objective. Compare care setting transitions across older (65+ years) and younger individuals. Design. Secondary analyses of provincial hospital and ambulatory database data. Every individual who lived in the province for one year prior to death from April 1, 2005 through March 31, 2007 was retained (N = 19, 397). Results. Transitions averaged 3.5, with 3.9 and 3.4 for younger and older persons, respectively. Older persons also had fewer ER and ambulatory visits, fewer procedures performed in the last year of life, but longer inpatient stays (42.7 days versus 36.2 for younger persons). Conclusion. Younger and older persons differ somewhat in the number and type of end-of-life care setting transitions, a matter for continuing research and healthcare policy.

Living with an adult who has diabetes: Qualitative insights from the second Diabetes Attitudes, Wishes and Needs (DAWN2) study

AIMS The second Diabetes Attitudes, Wishes and Needs (DAWN2) study identified the experiences of family members who support adults living with diabetes. METHODS Participants were 2057 adult family members living with the person with diabetes from 17 countries. Qualitative data were responses to open-ended survey questions about how living with a person with diabetes has impacted family members and the ways they choose to be involved in the diabetes care for the person with whom they live. Emergent coding with input from multinational collaborators identified thematic content about psychosocial aspects. RESULTS Family members wanted to do what was best for the person with diabetes and help in whatever way possible. Four themes branched from that principle: (1) family members worry about day-to-day struggles of the person with diabetes, such as hypoglycemia and employment stability; (2) diabetes negatively affects the person with diabetes-family member relationship, creating an emotional strain and shift in relationship; (3) family members have some support resources to deal with the burdens and lifestyle changes of diabetes, but would like more; and (4) the person with diabetes has provided inspiration to the family member, and helped the family member make positive life changes in eating healthier. CONCLUSIONS These data provide insight into the ways that family members experience living with diabetes, including their challenges, motivations and intentions in supporting their person with diabetes. Family members speak eloquently and with emotion about their role in a family with diabetes.

Confidentiality and treatment decisions of minor clients: a health professional’s dilemma & policy makers challenge

Issues relating to confidentiality and consent for physical and mental health treatment with minor clients can pose challenges health care providers. Decisions need to be made regarding these issues despite the absence of clear, direct, or comprehensive policies and legislation. In order to fully understand the scope of this topic, a systemic review of several pieces of legislation and guidelines related to this topic are examined. These include the: Canadian Human Rights Act, Children’s Rights: International and National Laws and Practices, Health Information Act, Gillick Competence and Medical Emancipation, Freedom of Information and Protection of Privacy Act, Child, Youth and Family Enhancement Act, Common Law Mature Minor Doctrine, and Alberta Health Services Consent to Treatment/Practice(s) Minor/Mature Minor. In order to assist health professionals with decisions regarding confidentiality and treatment with minor clients a case study and guide for decision-making is also presented.