Parent and healthcare provider views of live varicella vaccination of pediatric solid organ transplant recipients.

BACKGROUND: Live attenuated varicella vaccine (LAVV) has historically been contraindicated in children who are immunocompromised due to solid organ transplant (SOT) because of safety concerns. Recently, clinical guidelines were developed that support post-transplant varicella vaccination in selected SOT recipients based on emerging evidence of LAVV safety. This qualitative study sought to explore barriers and facilitators to implementing the new guidelines, as well as acceptability of LAVV among healthcare providers (HCPs) and parents. METHODS: HCPs and parents of transplant recipients were recruited from four sites using purposive sampling. Data from semi-structured interviews were analyzed using an Interpretive Description approach that incorporated data from the interviews, academic knowledge and clinical experience, and drew from Grounded Theory and Thematic Analysis. The theoretical framework used was Adaptive Leadership. RESULTS: Thirty-four participants (16 HCPs and 18 parents) were included in the analysis. Parents developed skills in adaptive leadership that included strategies to protect their child against infectious diseases. Foundational information that live vaccines were absolutely contraindicated post-transplant "stuck" with parents and led them to develop strategies other than vaccination to keep their child safe. Some parents struggled to understand that information previously presented as a certainty (contraindication of LAVV) could change. Their approach to adaptive leadership informed their appraisal of the new vaccination guidelines and willingness to accept vaccination. CONCLUSIONS: HCPs should adopt a family-centered approach to communicating changing guidelines that considers parents' approach to adaptive leadership and discusses the changing nature of medical evidence. Trust between HCPs and parents can facilitate these conversations.

Patient perspectives on primary care for multimorbidity: An integrative review.

INTRODUCTION: Improving healthcare for people with multiple chronic or ongoing conditions is receiving increased attention, particularly due to the growing number of people experiencing multimorbidity (MM) and concerns about the sustainability of the healthcare system. Primary care has been promoted as an important resource for supporting people with MM to live well with their conditions and to prevent unnecessary use of health care services. However, traditional primary care has been criticized for not centring the needs and preferences of people with MM themselves. Our aim was to conduct a review that centred on the perspective of people with MM in multiple ways, including having patient partners co-lead the design, conduct and reporting of findings, and focusing on literature that reported the perspective of people with MM, irrespective of it being experimental or nonexperimental. METHODS: We searched for published literature in CINAHL with Full Text (EBSCOhost) and MEDLINE All (Ovid). Findings from experimental and nonexperimental studies were integrated into collaboration with patient partners. RESULTS: Twenty-nine articles were included in the review. Findings are described in five categories: (1) Care that is tailored to my unique situation; (2) meaningful inclusion in the team; (3) a healthcare team that is ready and able to address my complex needs; (4) supportive relationships and (5) access when and where I need it. CONCLUSION: This review supports a reorientation of primary care systems to better reflect the experiences and perspectives of people with MM. This can be accomplished by involving patient partners in the design and evaluation of primary care services and incentivizing collaboration among health and social supports and services for people with MM. PATIENT OR PUBLIC CONTRIBUTION: Patient partners were involved in the design and conduct of this review, and in the preparation of the manuscript. Their involvement is further elucidated in the manuscript text.

Protocol for a mixed-method analysis of implementation of case management in primary care for frequent users of healthcare services with chronic diseases and complex care needs.

INTRODUCTION: Case management (CM) in a primary care setting is a promising approach to integrating and improving healthcare services and outcomes for patients with chronic conditions and complex care needs who frequently use healthcare services. Despite evidence supporting CM and interest in implementing it in Canada, little is known about how to do this. This research aims to identify the barriers and facilitators to the implementation of a CM intervention in different primary care contexts (objective 1) and to explain the influence of the clinical context on the degree of implementation (objective 2) and on the outcomes of the intervention (objective 3). METHODS AND ANALYSIS: A multiple-case embedded mixed-methods study will be conducted on CM implemented in ten primary care clinics across five Canadian provinces. Each clinic will represent a subunit of analysis, detailed through a case history. Cases will be compared and contrasted using multiple analytical approaches. Qualitative data (objectives 1 and 2) from individual semistructured interviews (n=130), focus group discussions (n=20) and participant observation of each clinic (36 hours) will be compared and integrated with quantitative (objective 3) clinical data on services use (n=300) and patient questionnaires (n=300). An evaluation of intervention fidelity will be integrated into the data analysis. ETHICS AND DISSEMINATION: This project received approval from the CIUSSS de l'Estrie - CHUS Research Ethic Board (project number MP-31-2019-2830). Results will provide the opportunity to refine the CM intervention and to facilitate effective evaluation, replication and scale-up. This research provides knowledge on how to resp ond to the needs of individuals with chronic conditions and complex care needs in a cost-effective way that improves patient-reported outcomes and healthcare use, while ensuring care team well-being. Dissemination of results is planned and executed based on the needs of various stakeholders involved in the research.

Sharpening the focus: differentiating between focus groups for patient engagement vs. qualitative research.

PLAIN ENGLISH SUMMARY: Patient engagement is an opportunity for people with experience of a health-related issue to contribute to research on that issue. The Canadian Strategy for Patient-Oriented Research (SPOR) highlights patient engagement as an important part of health research. Patient engagement, however, is a new concept for many researchers and research ethics boards, and it can be difficult to understand the differences between patient engagement activities and research activities. Focus groups are one example of how research and patient engagement activities are often confused.We distinguish these two types of activities by using different terms for each. We use focus groups to refer to research activities, and discussion groups to refer to patient engagement activities. In focus groups, researchers collect data by speaking with a group of research subjects about their experiences. Researchers use this information to answer research questions and share their findings in academic journals and gatherings. In patient engagement, discussion groups are a way for patients to help plan research projects. Their contributions are not treated as research data, but instead they help make decisions that shape the research process. We have found that using different language to refer to each type of activity has led to improved clarity in research planning and research ethics submissions. ABSTRACT: Background In patient-oriented research (POR), focus groups can be used as a method in both qualitative research and in patient engagement. Canadian health systems researchers and research ethics boards (REBs), however, are often unaware of the key differences to consider when using focus groups for these two distinct purposes. Furthermore, no one has clearly established how using focus groups for these two purposes should be differentiated in the context of Canada's Strategy for Patient-Oriented Research (SPOR), which emphasizes appropriate patient engagement as a fundamental component of POR. Body Researchers and staff in the Maritime SPOR SUPPORT Unit refer to focus groups in patient engagement as discussion groups for clarity, and have developed internal guidelines to encourage their appropriate use. In this paper, the guidelines comparing and contrasting the design and conduct of focus groups and of discussion groups is described, including: the theoretical framework for each; the need for research ethics board review approval; identifying participants; collecting and analyzing data; ensuring rigour; and disseminating results. Conclusion The MSSU guidelines address an important and current methodological challenge in patient-oriented research, which will benefit Canadian and international health systems researchers, patients, and institutional REBs.