Implementation analysis of a case management intervention for people with complex care needs in primary care: a multiple case study across Canada.

BACKGROUND: Case management is one of the most frequently performed interventions to mitigate the negative effects of high healthcare use on patients, primary care providers and the healthcare system. Reviews have addressed factors influencing case management interventions (CMI) implementation and reported common themes related to the case manager role and activities, collaboration with other primary care providers, CMI training and relationships with the patients. However, the heterogeneity of the settings in which CMI have been implemented may impair the transferability of the findings. Moreover, the underlying factors influencing the first steps of CMI implementation need to be further assessed. This study aimed to evaluate facilitators and barriers of the first implementation steps of a CMI by primary care nurses for people with complex care needs who frequently use healthcare services. METHODS: A qualitative multiple case study was conducted including six primary care clinics across four provinces in Canada. In-depth interviews and focus groups with nurse case managers, health services managers, and other primary care providers were conducted. Field notes also formed part of the data. A mixed thematic analysis, deductive and inductive, was carried out. RESULTS: Leadership of the primary care providers and managers facilitated the first steps of the of CMI implementation, as did the experience and skills of the nurse case managers and capacity development within the teams. The time required to establish CMI was a barrier at the beginning of the CMI implementation. Most nurse case managers expressed apprehension about developing an "individualized services plan" with multiple health professionals and the patient. Clinic team meetings and a nurse case managers community of practice created opportunities to address primary care providers' concerns. Participants generally perceived the CMI as a comprehensive, adaptable, and organized approach to care, providing more resources and support for patients and better coordination in primary care. CONCLUSION: Results of this study will be useful for decision makers, care providers, patients and researchers who are considering the implementation of CMI in primary care. Providing knowledge about first steps of CMI implementation will also help inform policies and best practices.

Evaluating Self-Control Theory Among the Deaf Community.

This study evaluates the generality of self-control theory with a previously untested cultural group rarely studied by criminologists, the Deaf community. Survey data (n = 428) from participants attending a university that houses a college for the Deaf and hard-of-hearing were compared with a sample of "hearing" students. The findings support Gottfredson and Hirschi's cultural invariance thesis as self-control was consistently able to predict a wide range of rule-breaking behaviors among the culturally distinct groups examined. However, several unexpected results challenge the parental management thesis. In particular, exposure to effective parenting techniques was a significant contributor to variations in self-control for the hearing, but not the Deaf sample. Additionally, self-control did not fully mediate the relationship between child-rearing experiences and norm violating behaviors for the Deaf sample. Implications of these findings are discussed.

Patient and researcher experiences of patient engagement in primary care health care research: A participatory qualitative study.

BACKGROUND: Studies have highlighted common challenges and barriers to patient engagement in research, but most were based on patient partners' or academic researchers' experiences. A better understanding of how both groups differentially experience their partnership could help identify strategies to improve collaboration in patient engagement research. AIM: This study aimed to describe and compare patient partners' and academic researchers' experiences in patient engagement research. METHODS: Based on a participatory approach, a descriptive qualitative study was conducted with patient partners and academic researchers who are involved in the PriCARE research programme in primary health care to examine their experience of patient engagement. Individual semi-structured interviews with patient partners (n = 7) and academic researchers (n = 15) were conducted. Academic researchers' interview verbatims, deidentified patient partners' summaries of their interviews and summaries of meetings with patient partners were analysed using inductive thematic analysis in collaboration with patient partners. RESULTS: Patient partners and academic researchers' experiences with patient engagement are captured within four themes: (1) evolving relationships; (2) creating an environment that fosters patient engagement; (3) striking a balance; and (4) impact and value of patient engagement. Evolving relationships refers to how partnerships grew and improved over time with an acceptance of tensions and willingness to move beyond them, two-way communication and leadership of key team members. Creating an environment that fosters patient engagement requires appropriate structural support, such as clear descriptions of patient partner roles; adequate training for all team members; institutional guidance on patient engagement; regular and appropriate translation services; and financial assistance. For patient partners and academic researchers, striking a balance referred to the challenge of reconciling patient partners' interests and established research practices. Finally, both groups recognized the value and positive impact of patient engagement in the programme in terms of improving the relevance of research and the applicability of results. While patient partners and academic researchers identified similar challenges and strategies, their experiences of patient engagement differed according to their own backgrounds, motives and expectations. CONCLUSION: Both patient partners and academic researchers highlighted the importance of finding a balance between providing structure or guidelines for patient engagement, while allowing for flexibility along the way. PATIENT OR PUBLIC CONTRIBUTION: Patient partners from the PriCARE research programme were involved in the following aspects of the current study: (1) development of the research objectives; (2) planning of the research design; (3) development and validation of data collection tools (i.e., interview guides); (4) production of data (i.e., acted as interviewees); (5) validation of data analysis tools (code book); (6) analysis of qualitative data; and (7) drafting of the manuscript and contributing to other knowledge translation activities, such as conference presentations and the creation of a short animated video.

Reconciling validity and challenges of patient comfort and understanding: Guidelines to patient-oriented questionnaires.

BACKGROUND: Patient-reported outcome measures (PROMs) are widely recognized as important tools for achieving a patient-centred approach in health research. While PROMs are subject to several stages of validation during development, even questionnaires with robust psychometric properties may challenge patient comfort and understanding. AIM: Building on the experience of patient engagement in the PriCARE research programme, this paper outlines the team's response to concerns raised by patient partners regarding the administration of the questionnaire. METHODS: Based on a participatory action research design and the patient engagement framework in the Strategy for Patient-Oriented Research of the Canadian Institutes of Health Research, PriCARE team members worked together to discuss concerns, review the questionnaires and come up with solutions. Data were collected through participant observation of team meetings. RESULTS: This paper demonstrates how patient partners were engaged in PriCARE and integrated into the programme's governance structure, focusing on the challenges that they raised regarding the questionnaires and how these were addressed by PriCARE team members in a six-step approach: (1) Recognizing patient partner concerns, discussing concerns and reframing the challenges; (2) Detailing and sharing evidence of the validity of the questionnaires; (3) Evaluating potential solutions; (4) Searching the literature for guidelines; (5) Creating guidelines; and (6) Sharing and refining guidelines. CONCLUSION: This six-step approach demonstrates how research teams can integrate patient partners as equal members, develop meaningful collaboration through recognition of individual experiences and expertise and ensure that the patient perspective is taken into consideration in research and healthcare innovation. PATIENT OR PUBLIC CONTRIBUTION: All patient partners from the PriCARE programme were actively involved in the six-step approach. They were also involved in the preparation of the manuscript.

Planning, operationalizing, and evaluating patient partners' engagement in primary care research: a logic model.

Context. There is growing evidence supporting patients' engagement (PE) in primary care research to improve the quality, relevance, and uptake of research. However, guidance is still needed to plan and operationalize this engagement during the research process. Objective. To develop a logic model illustrating empirically the causal links between context, resources, activities, and expected outcomes of PE in an implementation research program in primary care. Study design. Instrumental case study. Setting. A research program (PriCARE) aiming to implement and evaluate a case management intervention (CMI) in primary care clinics across five provinces in Canada. Population studied. Research team members. Methods. Data collection. Participant observation and in-depth interviews (n=22) conducted by two independent research assistants with research team members: principal investigators (n=5); co-investigators (n=2); research coordinators and assistants (n=8); and patient partners (n=7). Analysis. Deductive thematic analysis using components of the logic model as coding categories. All data were coded using NVivo 12 software. Data were reduced and organized in a first logic model version. Team meetings helped to refine the logic model. The final version was validated by all research team members. Results. The logic model provides an empirical illustration of the relationship between context, resources, activities, and expected outcomes for PE. Mobilized resources (human, financial, organizational, and communicational) allow research team members to be involved in many activities related to PE: recruitment, training, and support of patient partners; development of a governance structure; participation in research activities; agreement on decision-making processes; training and support of clinicians; development of tools for patients' involvement in the CMI. These activities lead to the following benefits for health research: improved communication amongst all team members, results and knowledge translation; development of a PE culture; capacity building; democratization of health research; and for healthcare: improved implementation of the intervention; improved patient engagement in their care; better health outcomes and resource utilization; support of decision-makers and clinicians; and better practices. Conclusions. The logic model may be useful for the planning, operationalization and evaluation of PPE in primary care research programs.

Patient engagement works: Patient and researcher experiences of patient partnership in primary healthcare research.

Context: Health researchers are increasingly engaging patients and their families as partners in the research process, from inception to knowledge translation. The trend toward 'patient-oriented' research is encouraged by a growing view that studies which integrate the patient perspective will make better use of resources to produce more relevant evidence that can be more easily translated to clinical settings. While there is an emerging literature on best practices, challenges, and learnings related to patient engagement (PE), few studies consider the experiences of patient partners (PP) and researchers in the same project. This presentation will present PP and researcher experiences of PE, highlighting important similarities and differences and proposing recommendations. Objectives: To characterize PE experience from the perspective of researchers and PP working together on the same research program, PriCARE; to identify successes and challenges; to ascertain contributions of PE in health research. Study Design: Qualitative. Setting or Dataset: This study was conducted within the larger 5-province PriCARE study examining a nurse-led case management intervention for primary care patients with complex needs. Population studied: 22 members of the study team (7 PP, 8 coordinators, 2 co-investigators, 5 principal investigators). Methods: Data collection: In-depth interviews using guides co-created by researchers and PP covering topics such as PE-related training and knowledge, and reflections on PE processes and impact. Research assistants external to the PriCARE study conducted interviews, transcribed researcher interviews, and generated a summary of PP interviews. Analysis: Data were analyzed thematically using a coding framework that was co-developed with PP. Outcome Measures: Researcher and patient experiences of PE, PP contributions to health research. Results: All team members need PE training at the beginning of and throughout the research process. Evolving trust and flexibility helped team members to navigate different experiences and priorities. PP make integral contributions to study and instrument design, data analysis, and knowledge translation. Clear expectations about the degree and nature of PE and team members' roles are critical. Conclusions: Meaningful PE requires patient-researcher partnership and clear expectation setting at the outset and throughout the research process, and ongoing flexibility to adapt.

Bringing Value-Based Perspectives to Care: Including Patient and Family Members in Decision-Making Processes.

BACKGROUND: Recent evidence shows that patient engagement is an important strategy in achieving a high performing healthcare system. While there is considerable evidence of implementation initiatives in direct care context, there is limited investigation of implementation initiatives in decision-making context as it relates to program planning, service delivery and developing policies. Research has also shown a gap in consistent application of system-level strategies that can effectively translate organizational policies around patient and family engagement into practice. METHODS: The broad objective of this initiative was to develop a system-level implementation strategy to include patient and family advisors (PFAs) at decision-making points in primary healthcare (PHC) based on wellestablished evidence and literature. In this opportunity sponsored by the Canadian Foundation for Healthcare Improvement (CFHI) a co-design methodology, also well-established was applied in identifying and developing a suitable implementation strategy to engage PFAs as members of quality teams in PHC. Diabetes management centres (DMCs) was selected as the pilot site to develop the strategy. Key steps in the process included review of evidence, review of the current state in PHC through engagement of key stakeholders and a co-design approach. RESULTS: The project team included a diverse representation of members from the PHC system including patient advisors, DMC team members, system leads, providers, Public Engagement team members and CFHI improvement coaches. Key outcomes of this 18-month long initiative included development of a working definition of patient and family engagement, development of a Patient and Family Engagement Resource Guide and evaluation of the resource guide. CONCLUSION: This novel initiative provided us an opportunity to develop a supportive system-wide implementation plan and a strategy to include PFAs in decision-making processes in PHC. The well-established co-design methodology further allowed us to include value-based (customer driven quality and experience of care) perspectives of several important stakeholders including patient advisors. The next step will be to implement the strategy within DMCs, spread the strategy PHC, both locally and provincially with a focus on sustainability.

Investigating the Risk of Date Rape by Auditory Status.

This exploratory study examines the impact of auditory status, gender, and prior sexual victimization on attitudes and behaviors related to date rape among undergraduate college students (n = 3,352) at a private university in the northeast. An abbreviated version of the College Date Rape Attitude and Behavior Survey (Lanier & Elliot, 1997) and the Sexual Experiences Survey (Koss, Gidycz, & Wisniewski, 1987) were employed. Findings indicated that Deaf and hard of hearing (DHH) students were more likely to experience negative sexual experiences than hearing students. No differences were found in rape-supportive attitudes by auditory status. The analysis also found that DHH students were more likely to engage in sexual behaviors that increase the risk of date rape than were hearing students. Finally, significant differences were found regarding gender and prior sexual victimization on rape attitudes and behaviors. Implications and directions for future research are discussed.

The Relationship Between Child Maltreatment and Partner Violence Victimization and Perpetration Among College Students: Focus on Auditory Status and Gender.

Partner violence is a pervasive public health concern that has received significant attention over the past three decades. Although a number of studies have reported that college students who are Deaf or hard of hearing are at an increased risk of experiencing partner violence compared with their hearing counterparts, little is known about partner violence perpetration among college students who are Deaf or hard of hearing. Furthermore, beyond disability, studies examining partner violence among students with disabilities tend to ignore other potential risk factors that may increase the risk of partner violence as a victim and/or a perpetrator. This exploratory study examines the extent of partner violence among male and female college students by auditory status and the relationship between experiencing and perpetrating partner abuse (i.e., physical abuse and psychological abuse) and child maltreatment (i.e., witnessing abuse and experiencing child physical abuse). The study also examines gender differences in the relationship between child maltreatment and physical and psychological abuse victimization and perpetration. Data were collected from a sample of approximately 680 college students at a northeastern university. Findings indicate that having witnessed interparental abuse as a child was only significant for being an adult victim of physical abuse. Having been a child victim of parental abuse was not significant for any of the abuse measures. Gender was only significant for being an adult victim of physical abuse. Deaf students were significantly more likely to report all abuse measures. Implications and directions for further research are discussed.

Intimate violence among underrepresented groups on a college campus.

Rape, sexual violence, psychological violence, and physical violence, among college students have been a concern. Lifetime events are often studied but not violence that specifically transpires while one is in college. Underrepresented groups such as Deaf and Hard of Hearing students, students who are gay, lesbian, and bisexual, and students who are members of racial and ethnic minorities have not been studied as extensively as White, heterosexual females. The authors used several measures to investigate the incidence of sexual violence, physical and psychological abuse among underrepresented groups in a random sample of 1,028 college students at a private, northeastern, technological campus in upstate New York, United States and analyzed victimization rates by gender, race/ethnicity, auditory status, and sexual orientation. Binary logistic regression analyses found that statistically significant differences are likely to exist between members of underrepresented groups and groups in the majority. The study found statistically significant associations between Deaf and Hard of Hearing students and students who were gay, lesbian, bisexual, or other sexual orientation with psychological abuse and physical abuse. Racial and ethnic minorities and gay, lesbian, bisexual, and other sexual orientation students were significantly more at risk for sexual abuse. Gay, lesbian, bisexual, and other sexual orientation students, students who were members of a racial or ethnic minority, and female students were significantly more likely to be raped. Female heterosexual students were more likely to be the victim of an attempted rape. Suggestions for further research and policy implications are provided.

Auditory status and experiences of abuse among college students.

Studies that explore experiences of abuse among deaf or hard of hearing college students are sparse and usually focus on lifetime experiences rather than the college years. A random sample of more than 1,000 college students at a campus in Upstate New York provided the data for this study. An institute for the deaf or hard of hearing was one of the colleges at the university and provided a unique opportunity to explore experiences among this demographic. Victimization rates and experiences by auditory status--deaf and hard of hearing or hearing--were examined. Binomial regression analyses were employed and findings indicated a significant association with being deaf or hard of hearing and physical and psychological abuse at the hands of a partner. Implications for policy and future research are discussed.

Physicians' perspectives on caring for cognitively impaired elders.

PURPOSE: This study aims to develop an in-depth understanding of the issues important to primary care physicians in providing care to cognitively impaired elders. DESIGN AND METHODS: In-depth interviews were conducted with 20 primary care physicians. Text coded as "cognitive impairment" was retrieved and analyzed by use of grounded theory analysis techniques. RESULTS: A patient's impaired ability to provide an accurate history and to participate in self-care hindered the usual process of care, often resulting in greater medical uncertainty and feelings of inadequacy and frustration for the physician. Shifting the goal of care from "curing" the patient's illness to "caring" for the patient's quality of life was also problematic. The doctor-patient relationship changed dramatically as others became involved in care, often with attendant ethical dilemmas related to patient autonomy and the locus of decision making. Many physicians described a deep sense of loss and grief as the personhood of patients faded. The increased complexity and prominent social and emotional issues were difficult to manage in the context of the current model of practice. IMPLICATIONS: Profound changes occur in the process of care with cognitively impaired patients. The increased complexity mandates an expanded model of care that addresses the prominent psychosocial and ethical aspects of care as well as the medical ones.