Applicability of a national strategy for patient-oriented research to people who use(d) substances: a Canadian experience.

BACKGROUND: Europe and North America are in the grips of a devastating overdose crisis. People who use substances often feel unsafe to access healthcare due to fears of stigma, blame, judgement, poor treatment, or other repercussions. As a result, they often avoid, delay, or leave care, resulting in premature death and missed opportunities for care. Internationally, there have been concerted efforts to move towards patient-engaged research to enhance the quality of health care systems and services. In Canada, the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) initiative promotes engagement of patients as active partners in health care research. As part of a community based patient oriented research project, we critically analyze the SPOR framework to provide insights into what constitutes safer research with people who use(d) substances. METHODS: We undertook a two-stage process that began with a review of community based research principles and the SPOR framework. At the second stage, we undertook a qualitative descriptive study employing focus groups to generate description of the adequacy and appropriateness of the SPOR framework for guiding research with people who use(d) substances on four key dimensions (patient engagement, guiding principles, core areas of engagement and benefits). The data were analyzed using qualitative content analysis to identify key issues and insights. RESULTS: While the SPOR framework includes a range of patient roles, principles and areas for engagement, there are issues and gaps related to essential elements of safe patient-oriented research for people who use substances. These include an individualized focus on patients as partners, lack of recognition of community benefits, power imbalances and distrust due to systemic stigma, engagement as one way capacity building and learning, and lack of accountability for taking action on research findings. CONCLUSIONS: Given the extent of stigma in health care and the ongoing illicit drug policy crisis, strategies for enhancing equitable Patient-Oriented Research (POR) include shifting language from patient partners to community researchers, recognizing power inequities and adding trust and equity as core POR principles including pay equity. Employing community based participatory research as a POR methodology allows the lead researchers to fully engage community throughout the research process, enhances community benefits and accountability for action.

Experiences of nurse educators facilitating and teaching in an international setting.

BACKGROUND: Multiple studies focus on the experiences of visiting students from high resource regions that participated in clinical placements in lower resource countries but less focus on the experiences of the educators accompanying students. AIM: The purpose of this study was to explore the experiences of educators during an international clinical placement of nursing students in a country in West Africa. METHODS: We implemented a focussed ethnographic design. We purposively sampled educators who accompanied students on an international clinical placement. Data collection from 2018 to 2019 consisted of in-depth individual interviews. We utilized Roper and Shapira's (2000, 10.4135/9781483328294.) data analysis process, which includes coding keywords, identifying patterns and theorizing. FINDINGS: Three themes emerged from the data: rewards in accompanying students, challenges experienced and the need for mentoring and continuous support. Educators found it rewarding to see growth in students, how students developed as global citizens, how students developed critical thinking and problem-solving skills and create lifelong friendships. CONCLUSION: Educators who accompany nursing students to international clinical placement experience valuable learning and challenging issues. Educators must navigate, support and advance student learning when on an international placement. It is crucial to have adequate institutional support from both the home and host country.

People with lived experience (PWLE) of depression: describing and reflecting on an explicit patient engagement process within depression research priority setting in Alberta, Canada.

PLAIN ENGLISH SUMMARY: The Alberta Depression Research Priority Setting Project aimed to meaningfully involve patients, families and clinicians in determining a research agenda aligned to the needs of Albertans who have experienced depression. The project was modeled after a process developed in the UK by the James Lind Alliance and adapted to fit the Alberta, Canada context. This study describes the processes used to ensure the voices of people with lived experience of depression were integrated throughout the project stages. The year long project culminated with a facilitated session to identify the top essential areas of depression research focus. People with lived experience were engaged as part of the project's Steering Committee, as survey participants and as workshop participants. It is hoped this process will guide future priority setting opportunities and advance depression research in Alberta. ABSTRACT: Background The Depression Research Priority Setting (DRPS) project has the clear aim of describing the patient engagement process used to identify depression research priorities and to reflect on the successes of this engagement approach, positive impacts and opportunities for improvement. To help support patient-oriented depression research priority setting in Alberta, the Patient Engagement (PE) Platform of the Alberta Strategy for Patient Oriented Research Support for People and Patient-Oriented Research and Trials (SUPPORT) Unit designed, along with the support of their partners in addictions and mental health, an explit process to engage patients in the design and execution of the DRPS. Methods The UK's James Lind Alliance (JLA) Priority Setting Partnership (PSP) method was adapted into a six step process to ensure voices of "people with lived experience" (PWLE) with depression were included throughout the project stages. This study uses an explicit and parallel patient engagement process throughout each estage of the PSP designed by the PE Platform. Patient engagement was divided into a five step process: i) Awareness and relationship building; ii) Co-designing and co-developing a shared decision making process; iii) Collaborative communication; iv) Collective sensemaking; and v) Acknowledgement, celebration and recognition. A formative evaluation of the six PE processes was undertaken to explore the success of the parallel patient engagement process. Results This project was successful in engaging people with lived depression experience as partners in research priority setting, incorporating their voices into the discussions and decisions that led to the top 25 depression research questions. Conclusions The DRPS project has positively contributed to depression research in Canada by identifying the priorities of Albertans who have experienced depression for depression research. Dissemination activities to promote further knowledge exchange of prioritized research questions, with emphasis on the importance of process in engaging the voices of PWLE of depression are planned.

The top research questions asked by people with lived depression experience in Alberta: a survey.

BACKGROUND: To support patient-oriented setting of priorities for depression research in Alberta, the Patient Engagement Platform of the Alberta Strategy for Patient Oriented Research's Support for People and Patient-Oriented Research and Trials Unit and Alberta Health Services' Addiction and Mental Health Strategic Clinical Network, along with partners in addictions and mental health, designed the Alberta Depression Research Priority Setting Project. The aim of the project was to survey patients, caregivers and clinicians/researchers in Alberta about what they considered to be the most important unanswered questions about depression. METHODS: The project adapted the James Lind Alliance Priority Setting Partnership method into a 6-step process to gather and prioritize questions about depression posed by people with lived depression experience, which included patients, caregivers, clinicians and health care practitioners. RESULTS: Implementation of the project, from initial data collection to final priority setting, took 10 months (August 2016 to June 2017). A total of 445 Albertans with lived experience of depression participated, ultimately identifying 11 priority depression research questions spanning the health continuum, life stages, and treatment and prevention opportunities. INTERPRETATION: This project is a fundamental step that has the potential to positively influence depression research. Including the voices of Albertans with lived experience will create advantages for depression research for Albertans, researchers and research funders, and for patient engagement in the research enterprise overall.

Sources of support for women experiencing obstetric fistula in northern Ghana: A focused ethnography.

OBJECTIVE: we explored how women in northern Ghana who have or have had obstetric fistula and those close to them perceive support. DESIGN: focused ethnography, that includes in-depth interviews, participant observation, and scrutiny of relevant records. SETTING: a fistula treatment centre in a regional urban centre and three remote villages located in northern Ghana. PARTICIPANTS: the sources of data included in-depth interview (n=14), non-participant observation and interaction, as well as scrutiny of relevant health records and documents. Participants for in-depth interviews and observation included women affected by obstetric fistula, their partners, parents, relatives, nurses and doctors. FINDINGS: presentation of obstetric fistula information, particularly by Non-Governmental Organisations was not in a format that was readily understandable for many women and their families. Food and other basic requirements for daily living were not necessarily available in the fistula treatment centre. Travelling for care was costly and frequently not easily accessed from their communities. Fistula repair surgery was available at unpredictable times and only for a few days every one to two months. CONCLUSIONS: women perceived support from spouses/partner, family members, and other relatives but much of this is limited to tangible support. Perceptions of support were particularly focused on access to information and finances. IMPLICATIONS FOR PRACTICE: the implementation of strategies to increase support for women living with obstetric fistula include improving access to fistula repair treatment, directing resources to create a dedicated specialist fistula centre located where most cases of OF occur and providing education to front-line workers. Strategies to prevent fistula as well as identify and support safe motherhood practices are needed for women affected by obstetric fistula.