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Patients as partners: a qualitative study of patients' engagement in their health care.

ABSTRACT: To advocate for patients to be more actively involved with the healthcare services they receive, particularly patients living with chronic illness, the Faculty of Medicine of the University of Montreal and its affiliated hospitals developed the Patients as Partners concept where the patient is considered a full-fledged partner of the health care delivery team and the patient's experiential knowledge is recognized. This study aims to show how patients view their engagement with healthcare professionals regarding their direct care. Using theoretical sampling, 16 semi-structured interviews were conducted with patients with chronic illness who were familiar with the concept of Patients as Partners. Data analysis followed a constructivist grounded theory approach. Patients describe themselves as proactively engaging in three types of practice, regardless of health professionals' openness to their role as partners. The first is a process of continuous learning that allows them to acquire experiential knowledge about their health, as well as scientific information and technical know-how. The second involves their assessment of the healthcare they receive, in terms of its quality and how it aligns with their personal preferences. It includes their assessment of the quality of their relationship with the health professional and of the latter's scientific knowledge and technical know-how. The third type, adaptation practices, builds on patients' learning and assessments to compensate for and adapt to what has been perceived as optimal or non-optimal health or healthcare circumstances. Patients appear to play a more active and less docile role in their own direct care than suggested so far in the literature, regardless of the degree of reciprocity of the partnership or the degree to which the health professional seeks to encourage patient engagement.

SUBMITTER: Pomey MP

PROVIDER: S-EPMC4391791 | biostudies-other | 2015

REPOSITORIES: biostudies-other

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Project description:BackgroundPatients and other stakeholders are increasingly engaging as partners in research, although how they perceive such experiences, particularly over the long term, is not well understood.ObjectiveTo characterize how participants from a nondialysis chronic kidney disease (CKD) research priority-setting project conducted 2 years previously perceived the significance of their involvement.DesignQualitative descriptive study with semi-structured, individual interviews.SettingParticipants resided across Canada.ParticipantsEligible participants included stakeholders (ie, patients with nondialysis CKD, caregivers, health care professionals, and policy makers) who had taken part in a prior CKD research priority-setting project.MeasurementsWe explored stakeholder experiences and perspectives on engagement in CKD research prioritization.MethodsWe purposively sampled across stakeholder roles and engagement types (ie, involvement in the priority-setting workshop, wiki online tool, and/or steering committee). All interviews were conducted by a single investigator by telephone or face-to-face, and audio-recordings were transcribed verbatim. The data were inductively coded and analyzed by 2 investigators using a thematic analysis approach.ResultsWe conducted 23 interviews across stakeholder roles and engagement types. Participants appreciated the integration of distinct stakeholder communities of patients, researchers, and health care professionals that occurred through engagement in research priority setting. Their opportunity to interact with patients and others directly impacted by CKD outside of the clinical setting contributed to an enhanced understanding of the CKD lived experience and value of patient-oriented research. This interaction helped participants refine and refocus their commitment to patient-centered CKD care and research, characterized by enhanced knowledge and confidence (patients/caregivers), adaptations to existing clinical practices and policies (health care providers/policy makers), and subsequent research engagement.LimitationsThe views of participants may not reflect those of individuals in other research or health care settings.ConclusionsStakeholder engagement in nondialysis CKD research prioritization encouraged the integration of stakeholder communities, an appreciation of the CKD experience, and a refocusing of participants' commitment to research and care. Findings highlight considerations for future health research engaging stakeholders, particularly those living with CKD, as research partners.

Project description:BackgroundApproximately one in five women will experience mental health difficulties in the perinatal period. However, for a large group of women, symptoms of adverse perinatal mental health remain undetected and untreated. This is even more so for women of ethnic minority background, who face a variety of barriers which prevents them from accessing appropriate perinatal mental health care.AimsTo explore minority ethnic women's experiences of access to and engagement with perinatal mental health care.MethodsSemi-structured interviews were conducted with 18 women who had been diagnosed with perinatal mental health difficulties and who were supported in the community by a specialist perinatal mental health service in South London, United Kingdom. Women who self-identified as being from a minority ethnic group were purposefully selected. Data were transcribed verbatim, uploaded into NVivo for management and analysis, which was conducted using reflective thematic analysis.ResultsThree distinct overarching themes were identified, each with two or three subthemes: 'Expectations and Experiences of Womanhood as an Ethnic Minority' (Shame and Guilt in Motherhood; Women as Caregivers; Perceived to Be Strong and Often Dismissed), 'Family and Community Influences' (Blind Faith in the Medical Profession; Family and Community Beliefs about Mental Health and Care; Intergenerational Trauma and Family Dynamics) and 'Cultural Understanding, Empowerment, and Validation' (The Importance of Understanding Cultural Differences; The Power of Validation, Reassurance, and Support).ConclusionWomen of ethnic minority background identified barriers to accessing and engaging with perinatal mental health support on an individual, familial, community and societal level. Perinatal mental health services should be aware ethnic minority women might present with mental health difficulties in different ways and embrace principles of cultural humility and co-production to fully meet these women's perinatal mental health needs.

Project description:Background: Advanced cancer patients need an accurate understanding of their prognoses in order to engage in informed end-of-life care treatment decision-making. Latino cancer patients experience disparities around prognostic understanding, in part due to a lack of culturally competent communication around prognosis and advance care planning (ACP). Objective: The objective of the present study of Latino patients with advanced, terminally ill cancer is to examine their understanding of prognosis, and how cultural factors may influence this understanding and engagement in ACP. Methods: A mixed methods study was conducted, which consisted of surveys and semi-structured interviews. Descriptive statistics were used for sociodemographic information and self-reported prognostic understanding. Interviews around prognostic understanding and cultural influences on this understanding and engagement in ACP were recorded, transcribed, and then coded and analyzed using thematic content analysis. Findings: Latino patients with advanced cancer (n = 20) completed a self-reported survey and participated in a semi-structured interview. Results indicate that among terminally ill patients, 50% of the patients inaccurately believed they had early-stage cancer, 85% did not believe their cancer was terminal, and 70% believed their cancer was curable. Moreover, interviews yielded two main themes: varying levels of awareness of the incurability of their cancer and diverse end-of-life care decision-making and treatment preferences based on prognostic understanding. Within these themes, patients expressed denial or acceptance of their prognosis through communication with the oncologist, the importance of family, and incorporating their pre-existing beliefs. Conclusion: Findings indicate the importance of communication, family involvement, and incorporation of beliefs for promoting an accurate prognostic understanding among Latino patients. It is imperative to address disparities in Latino advanced cancer patients’ prognostic understanding so they can engage in informed treatment decision-making around end-of-life care.

Project description:BackgroundIn Canada, primary care is usually the front door to health care for people with health issues. Among these primary care services are primary care clinics (PCC), where the competencies of registered nurses (RNs) are needed. However, nursing practice in PCCs is variable and sometimes suboptimal from one PCC to another. In 2019, the Quebec Ministry of Health and Social Services deployed a practical guide for RNs practicing in PCCs. This guide was intended to support best professional and interprofessional practices and enhance the quality of services offered according to a physical-social vision of care, interprofessional collaboration and partnership with the patient. The Formation de formateurs en première ligne (F2PL) project team developed a train-the-trainer educational intervention to support RNs in assimilating the content of this guide. This educational intervention is uncommon because it includes patients as trainers (PTs). PTs developed and provided andragogic content about patient's experience to enhance patient engagement.ObjectiveTo describe the impacts of the educational intervention provided by the PTs in nurses' patient engagement practices in PCCs.MethodsA descriptive qualitative approach was used to describe in-depth changes in RNs' practices. Individual interviews were conducted with 10 RNs and 3 PTs to explore the changes in RNs' practice and the barriers and facilitators to adopting this new practice. An inductive and deductive thematic analysis was carried out according to a conceptual model of patient engagement (the Montreal Model), and emerging themes were condensed into propositions. To ensure credibility, a peer review was conducted with the F2PL team, which includes a patient co-leader.ResultsThe educational intervention provided by PTs has impacted RNs' practice in 3 ways: awareness or reminding of general principles, updating commitment to already known principles and enhancing the development of new professional skills.ConclusionsPTs could effectively support the RNs' motivation to use patient engagement practices in primary care.

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Patients as partners: a qualitative study of patients' engagement in their health care.

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