Patient-centered evaluation of home-based rehabilitation developed using community-based participatory research approach for people with disabilities: a case series

Purpose: The purpose of this study was to evaluate the effectiveness of the locally tailored and individualized home-based rehabilitation (HBR) program developed using the community-based participatory research (CBPR) approach, in terms of perceived health in patients with different levels of social engagement, and to explore the perceived facilitators and barriers to rehabilitation.

Method: A concurrent mixed-method design was employed. Four patients participated in the combined therapist- and self-delivered HBR program for 5 months. The perceived health outcomes were quantitatively assessed at baseline, after the therapist-delivered intervention period, and at 1 and 3 months after the self-delivered intervention period. Then, in-depth individual interviews were conducted to explore the facilitators and barriers to rehabilitation.

Results: The perceived health of patients who were fully or partially engaged in society was increased during the therapist-delivered intervention period, and maintained the increased level during the self-delivered intervention period, whereas that of patients who were rarely or not engaged dropped again to lower than the baseline. These results were caused by differentiated facilitators and barriers to rehabilitation depending on the level of social engagement.

Conclusions: Applying tailored strategies to patients with differing levels of social engagement is recommended to further optimize the local relevance of the HBR program.

• Implications for rehabilitation

• A community-based participatory research approach can provide an opportunity to enhance local relevance through community-academic partnerships, in developing a home-based rehabilitation (HBR) program for the people with disabilities.

• For community therapists, enhancing the local relevance of the HBR program, applying tailored strategies to patients with differing levels of social engagement is recommended because the perceived health of the HBR program can be different owing to differing perceived facilitators and barriers to rehabilitation, depending on the level of social engagement.

• For patients with rare or no engagement in society, satisfying their need for interaction with the therapists and helping them cope with their wrong belief about the possibility of their recovery is important to encourage behavioral change and perceived physical improvements.

     

Engaging stakeholders in rehabilitation research: a scoping review of strategies used in partnerships and evaluation of impacts

Abstract

Purpose: To describe how stakeholder engagement has been undertaken and evaluated in rehabilitation research. Methods: A scoping review of the scientific literature using five search strategies. Quantitative and qualitative analyses using extracted data. Interpretation of results was iteratively discussed within the team, which included a parent stakeholder. Results: Searches identified 101 candidate papers; 28 were read in full to assess eligibility and 19 were included in the review. People with disabilities and their families were more frequently involved compared to other stakeholders. Stakeholders were often involved in planning and evaluating service delivery. A key issue was identifying stakeholders; strategies used to support their involvement included creating committees, organizing meetings, clarifying roles and offering training. Communication, power sharing and resources influenced how stakeholders could be engaged in the research. Perceived outcomes of stakeholder engagement included the creation of partnerships, facilitating the research process and the application of the results, and empowering stakeholders. Stakeholder engagement outcomes were rarely formally evaluated. Conclusions: There is a great interest in rehabilitation to engage stakeholders in the research process. However, further evidence is needed to identify effective strategies for meaningful stakeholder engagement that leads to more useful research that positively impacts practice.

• Implications for Rehabilitation

• Using several strategies to engage various stakeholders throughout the research process is thought to increase the quality of the research and the rehabilitation process by developing proposals and programs responding better to their needs.

• Engagement strategies need to be better reported and evaluated in the literature.

• Engagement facilitate uptake of research findings by increasing stakeholders’ awareness of the evidence, the resources available and their own ability to act upon a situation.

• Factors influencing opportunities for stakeholder engagement need to be better understood.

     

Patients’ quest for recognition and continuity in health care: time for a new research agenda?

User involvement is important in democratization of health care and is assumed to contribute to better and more relevant research. Despite increased requirements for user involvement in research, more studies are still needed. This study aimed at exploring what research agenda people with varied health problems consider as important, based on their own experience. The study had a phenomenological approach with a qualitative design. The sample consisted of 23 informants; nine had been critically ill and 14 were suffering from chronic muscle pain. Data were collected in five focus group interviews and one individual interview. A phenomenological approach was used in analyzing the data. Written consent was obtained from all the participants, and ethical considerations were taken throughout the entire research process. Despite various experiences among the participants, a quest to be taken seriously over time by healthcare professionals emerged as a strong meaning structure in both groups. Based on these experiences, continuity across lifetime changes turned out to be an important research topic for future research. User involvement should be appreciated in all parts of the research process. A crucial prerequisite is that the users get the opportunity to bring their own experiences into the process.     

Participatory action as a research method with public health nurses

Aim

This article explores and describes participatory action research (PAR) as a preferred method in addressing nursing practice issues. This is the first study that used PAR with public health nurses (PHNs) in Canada to develop a professional practice model.

Background

Participatory action research is a sub‐category of action research that incorporates feminist and critical theory with foundations in the field of social psychology. For nurses, critical analysis of long‐established beliefs and practices through PAR contributes to emancipatory knowledge regarding the impact of traditional hierarchies on their practice.

Design

This study used participatory action, a non‐traditional but systematic research method, which assisted participants to develop a solution to a long‐standing organizational issue.

Method

The stages of generating concerns, participatory action, acting on concerns, reflection and evaluation were implemented from 2012 ‐ 2013 in an urban Canadian city, to develop a professional practice model for PHNs.

Findings

Four sub‐themes specific to PAR are discussed. These are “participatory action research engaged PHNs in development of a professional practice model;” “the participatory action research cycles of “Look, Think, Act” expanded participants’ views;” “participatory action research increased awareness of organizational barriers;” and “participatory action research promoted individual empowerment and system transformation.”

Conclusions

This study resulted in individual and system change that may not have been possible without the use of PAR. The focus was engagement of participants and recognition of their lived experience, which facilitated PHNs’ empowerment, leadership and consciousness‐raising.     

Significant elements of community involvement in participatory action research: evidence from a community project

Significant elements of community involvement in participatory action research: evidence from a community project ¶Participatory action research (PAR) has been heralded as an important research methodology to address issues of research relevance, community involvement, democracy, emancipation and liberation. Increasingly, nurse researchers are turning to PAR as a method of choice. Although nursing interest in PAR is expanding little is known about how to successfully involve the community in research. This article attends to this dearth of information by presenting the results of a study investigating the significant elements of community involvement in PAR. Through the use of qualitative research methods, five themes emerged that describe the community participation process: (a) planning for participation, (b) the structural components of community participation, (c) living the philosophy, (d) enhancing the credibility, and (e) the type of leadership required to facilitate community participation. It is hoped that by sharing these results others may consider the knowledge gleaned from this project as they plan and proceed with the challenges and rewards inherent in PAR.     

Service user's actual involvement in mental health research practices: A scoping review

Service user involvement in mental health research is on the international political agenda, for example mirrored by an emphasis on user involvement in funding of research. The idea is that service users contribute with their lived experiences of mental distress to the research process and thereby heighten the quality and relevance of the research. The purpose of this scoping review was to identify and evaluate empirical research of how mental health service users actually partake in collaborative research processes and to summarize this research in dialogue with mental health user‐researchers. The review included 32 studies. Main findings indicated that actual involvement of service user‐researchers in research processes encompassed a complex set of precarious negotiation practices, where academics and service user‐researchers were positioned and positioned themselves in alternative ways. The review accounts for how mental health service users were involved in collaborative research processes. The extracted themes concerned: (i) Expectations of research processes, (ii) Contribution to research processes, and (iii) Training and learning from research processes. The study reveals that collaborative research in mental health requires changes to traditional research practices to create and support genuine collaborative partnerships and thereby avoid tokenism and power inequalities.     

Taking action to close the research/practice divide

In this paper we focus at the level of individual project to explore aspects of the nexus between research and practice. Using a research project that sought to explore and understand care transitions for older people as the vehicle for our discussion, we examine how the process by which a research project itself is thought about, conceptualized, developed and conducted influences knowledge translation and ways to get research into practice, and conversely practice into research. Processes and strategies we engaged in throughout this research project to promote the transfer of knowledge both among and between researchers, practitioners and the wider practice community are highlighted.     

Patient engagement,involvement, or participation — entrapping concepts in nurse-patient interactions: A critical discussion

The importance of patients taking an active role in their healthcare is recognized internationally, to improve safety and effectiveness in practice. There is still, however, some ambiguity about the conceptualization of that patient role; it is referred to interchangeably in the literature as engagement, involvement, and participation. The aim of this discussion paper is to examine and conceptualize the concepts of patient engagement, involvement, and participation within healthcare, particularly nursing. The concepts were found to have semantic differences and similarities, although, from a nursing perspective, they can be summoned to illustrate the establishment of a mutual partnership between a patient and a nurse. The individualization of such processes requires the joint effort of engagement, involvement, or participation, represented by interactive actions of both the patient (asking questions, telling/speaking up, knowledge acquisition, learning, and decision-making) and the nurse (recognizing, responding, information sharing, teaching, and collaborating). Suggesting that the concepts can be used interchangeably comes with some caution, requiring that nurses embrace patients playing a role in their health and healthcare. Further research and practice development should focus on how patients and nurses receive and respond to each other to establish patient engagement, involvement, and participation.