Primary healthcare professionals' experience with patient participation in healthcare service development: A qualitative study

This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.Objective: How healthcare professionals experience patient participation in health service development impacts its use. This participatory study explores primary healthcare professionals' perceptions of developing health services with patient representatives. Methods: Four focus group interviews with primary healthcare professionals (n = 26) were conducted. We analyzed data by applying Braun and Clarke's reflexive thematic analysis. Results: The healthcare professionals perceived having a complementary interprofessional relationship with the patient representatives and regarded them as colleagues. However, the professionals navigated between a position of authority and collaboration, reconciling the need for participation with its challenges, e.g., to identify the representatives' collective representation among their personal experience, to ensure a more evidence-informed result that they and their colleagues would endorse. Conclusions: Regarding patient representatives as colleagues can blur the line between professionals and representatives' positions and functions and further complicate health service development. Our results indicate a need for skilled facilitators to lead the process. Innovation: This study identifies issues that professionals are uncertain about when collaborating with representatives to develop primary healthcare services; difficulties that professionals must overcome to collaborate constructively with representatives. Our findings can inform healthcare professionals' education about patient participation on all levels. We have suggested topics to address.publishedVersio

Enabling primary healthcare service development with patient participation: a qualitative study of the internal facilitator role in Norway

This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.Aim: To explore how primary healthcare professionals (HCPs) tasked with facilitating primary healthcare service development with patient participation perceived their role. Introduction: Patient participation in health service development is a recognized means of ensuring that health services fit the public’s needs. However, HCPs are often uncertain about how to involve patient representatives (PRs), and patient participation is poorly implemented. Inspired by the Promoting Action on Research Implementation in Health Services framework, we address the innovation (patient participation), its recipients (PRs, HCPs, supervisors, and senior managers), and its context (primary healthcare at a local and organizational level). Methods: We conducted semi-structured individual interviews with six HCPs working as internal facilitators in primary healthcare in four Norwegian municipalities. The data were analyzed by applying Braun and Clarke’s reflexive thematic analysis. Findings: The themes show that to develop primary healthcare services with patient participation, facilitators must establish a network of PRs with relevant skills, promote involvement within their organization, engage HCPs favorable toward patient participation, and demonstrate to supervisors and senior managers its usefulness to win their support. Implementing patient participation must be a shared, collective responsibility of facilitators, supervisors, and senior management. However, supervisors and senior management appear not to fully understand the potential of involvement or how to support the facilitators. The facilitator role requires continuous and systematic work on multiple organizational levels to enable the development of health services with patient participation. It entails maintaining a network of persons with experiential knowledge, engaging HCPs, and having senior management’s understanding and support.publishedVersio

How can we describe impact of adult patient participation in health-service development? A scoping review

This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).Objective: Patient participation represents a worldwide policy, but its impact lacks research. This study investigates impact of patient participation in health-service development by providing a comprehensive overview of how the literature describes it. Method: A scoping review with a broad search strategy was conducted. The literature was examined for study characteristics, purpose for, approaches to and impact of patient participation. The data were analyzed using a thematic analysis. Results: The 34 included primary studies reported impacts of patient participation that were interpreted to constitute two categories: 1. The participatory process impact on involved patient representatives and health professionals, and the organization s patient participation practice itself. 2. The participatory service development s impact on the design and delivery of services regarding patients and health professionals, and the organization. Conclusion: The literature describes a broad variation of impacts from health-service development, relevant for health professionals and patient representatives when initiating or participating in such processes. Our review provides an overview and discussion of these types of impact. Practice implications: The findings can be of practical relevance to those aiming to develop services, quality indicators regarding effects of patient participation, or to further investigate aspects of participatory service development.publishedVersio

How can we support children, adolescents and young adults in managing chronic health challenges? A scoping review on the effects of patient education interventions

Objectives This scoping review aims to give a comprehensive and systematic overview of published evaluations and the potential impact of patient education interventions for children, adolescents and young adults who are living with chronic illness and/or impairment loss. Methods Relevant literature published between 2008 and 2018 has been comprehensively reviewed, with attention paid to variations in study, intervention and patient characteristics. Arksey and O'Malley's framework for scoping studies guided the review process, and thematic analysis was undertaken to synthesize extracted data. Results Of the 7214 titles identified, 69 studies were included in this scoping review. Participant‐reported benefits of the interventions included less distress from symptoms, improved medical adherence and/or less use of medication, and improved knowledge. The majority of studies measuring physical activity and/or physiologic outcomes found beneficial effects. Interventions were also beneficial in terms of decreased use of urgent health care, hospitalization, visits to general practitioner and absence from school. By sharing experiences, participants had learned from each other and attained new insight on how they could manage illness‐related challenges. Discussion Study results corroborate previous research suggesting that different types of patient education interventions have a positive impact on children, adolescents and young adults, but research on this field is still in a starting phase. The results summed up in the current review supports the utility of patient education interventions that employ behavioural strategies tailored to the developmental needs of children, adolescents and young adults with different cultural backgrounds.publishedVersionsubmittedVersio

‘Struggling to participate in everyday life’: emerging adults’ experiences of living with long-term health challenges

Abstract Aim To gain a deeper understanding of the experiences of participation in the everyday life of emerging adults living with long-term health challenges and how this influences their own quality of life. Methods Using an explorative study design, data were collected through in-depth interviews with a sample of 12 young people aged 18–29 years living with long-term health challenges in Norway. Findings The analysis identified one overarching theme of struggling to participate in everyday life, and four subthemes: the notion of being independent but also dependent, experiencing mismatch between needs and support, experiencing deprivation of spontaneity and feeling uncertain about the future. The emerging adults experienced difficulties with participation in key areas of life such as education, employment and leisure activities. Associated symptoms of their diagnosis, limited physical abilities and lack of sufficient support made it hard to participate in everyday life the way they aspired to. Conclusion The challenges of living with a long-term health challenge as an emerging adult contributed to limitations in participation in different areas of life that was perceived as important for their quality of life

Primary healthcare professionals' experience with patient participation in healthcare service development: A qualitative study

Objective: How healthcare professionals experience patient participation in health service development impacts its use. This participatory study explores primary healthcare professionals' perceptions of developing health services with patient representatives. Methods: Four focus group interviews with primary healthcare professionals (n = 26) were conducted. We analyzed data by applying Braun and Clarke's reflexive thematic analysis. Results: The healthcare professionals perceived having a complementary interprofessional relationship with the patient representatives and regarded them as colleagues. However, the professionals navigated between a position of authority and collaboration, reconciling the need for participation with its challenges, e.g., to identify the representatives' collective representation among their personal experience, to ensure a more evidence-informed result that they and their colleagues would endorse. Conclusions: Regarding patient representatives as colleagues can blur the line between professionals and representatives' positions and functions and further complicate health service development. Our results indicate a need for skilled facilitators to lead the process. Innovation: This study identifies issues that professionals are uncertain about when collaborating with representatives to develop primary healthcare services; difficulties that professionals must overcome to collaborate constructively with representatives. Our findings can inform healthcare professionals' education about patient participation on all levels. We have suggested topics to address

Additional file 1 of ‘Struggling to participate in everyday life’: emerging adults’ experiences of living with long-term health challenges

Appendix: Table 1 Overview of the main finding

Service user involvement enhanced the research quality in a study using interpretative phenomenological analysis - the power of multiple perspectives

Aim: To examine how service user involvement can contribute to the development of interpretative phenomenological analysis methodology and enhance research quality. Background: Interpretative phenomenological analysis is a qualitative methodology used in nursing research internationally to understand human experiences that are essential to the participants. Service user involvement is requested in nursing research. Design: We share experiences from four years of collaboration (2012 – 2015) on a mental health promotion project, which involved an advisory team. Methods: Five research advisors either with a diagnosis or related to a person with severe mental illness constituted the team. They collaborated with the research fellow throughout the entire research process and have co-authored this article. We examined the joint process of analyzing the empirical data from interviews. Our analytical discussions were audiotaped, transcribed and subsequently interpreted following the guidelines for good qualitative analysis in interpretative phenomenological analysis studies. Results: The advisory team became ‘the researcher's helping hand’. Multiple perspectives influenced the qualitative analysis, which gave more insightful interpretations of nuances, complexity, richness or ambiguity in the interviewed participants’ accounts. The outcome of the service user involvement was increased breadth and depth in findings. Conclusion: Service user involvement improved the research quality in a nursing research project on mental health promotion. The interpretative element of interpretative phenomenological analysis was enhanced by the emergence of multiple perspectives in the qualitative analysis of the empirical data. We argue that service user involvement and interpretative phenomenological analysis methodology can mutually reinforce each other and strengthen qualitative methodology

Patients'needs and requirements for ehealth pain management interventions: Qualitative study

Background: A growing body of evidence supports the potential effectiveness of electronic health (eHealth) interventions in managing chronic pain. However, research on the needs and preferences of patients with chronic pain in relation to eHealth interventions is scarce. Eliciting user input in the development of eHealth interventions may be a crucial step toward developing meaningful interventions for patients for potentially improving treatment outcomes. Objective: This study aimed to explore the experiences of patients with chronic pain with regard to information and communication technology, understand how an eHealth intervention can support the everyday needs and challenges of patients with chronic pain, and identify possible facilitators and barriers for patients’ use of an eHealth pain management intervention. Methods: Twenty patients living with chronic pain and five spouses participated in individual interviews. Semistructured interview guides were used to explore participants’ needs, experiences, and challenges in daily life as well as their information and communication technology experiences and preferences for eHealth support interventions. Spouses were recruited and interviewed to gain additional insight into the patients’ needs. The study used qualitative thematic analysis. Results: The participants were generally experienced technology users and reported using apps regularly. They were mainly in favor of using an eHealth self-management intervention for chronic pain and considered it a potentially acceptable way of gathering knowledge and support for pain management. The participants expressed the need for obtaining more information and knowledge, establishing a better balance in everyday life, and receiving support for improving communication and social participation. They provided suggestions for the eHealth intervention content and functionality to address these needs. Accessibility, personalization, and usability were emphasized as important elements for an eHealth support tool. The participants described an ideal eHealth intervention as one that could be used for support and distraction from pain, at any time or in any situation, regardless of varying pain intensity and concentration capacity. Conclusions: This study provides insight into user preferences for eHealth interventions aiming to address self-management for chronic pain. Participants highlighted important factors to be considered when designing and developing eHealth interventions for self-management of chronic pain, illustrating the importance and benefit of including users in the development of eHealth interventions

Patients' Needs and Requirements for eHealth Pain Management Interventions: Qualitative Study

BACKGROUND: A growing body of evidence supports the potential effectiveness of electronic health (eHealth) interventions in managing chronic pain. However, research on the needs and preferences of patients with chronic pain in relation to eHealth interventions is scarce. Eliciting user input in the development of eHealth interventions may be a crucial step toward developing meaningful interventions for patients for potentially improving treatment outcomes. OBJECTIVE: This study aimed to explore the experiences of patients with chronic pain with regard to information and communication technology, understand how an eHealth intervention can support the everyday needs and challenges of patients with chronic pain, and identify possible facilitators and barriers for patients' use of an eHealth pain management intervention. METHODS: Twenty patients living with chronic pain and five spouses participated in individual interviews. Semistructured interview guides were used to explore participants' needs, experiences, and challenges in daily life as well as their information and communication technology experiences and preferences for eHealth support interventions. Spouses were recruited and interviewed to gain additional insight into the patients' needs. The study used qualitative thematic analysis. RESULTS: The participants were generally experienced technology users and reported using apps regularly. They were mainly in favor of using an eHealth self-management intervention for chronic pain and considered it a potentially acceptable way of gathering knowledge and support for pain management. The participants expressed the need for obtaining more information and knowledge, establishing a better balance in everyday life, and receiving support for improving communication and social participation. They provided suggestions for the eHealth intervention content and functionality to address these needs. Accessibility, personalization, and usability were emphasized as important elements for an eHealth support tool. The participants described an ideal eHealth intervention as one that could be used for support and distraction from pain, at any time or in any situation, regardless of varying pain intensity and concentration capacity. CONCLUSIONS: This study provides insight into user preferences for eHealth interventions aiming to address self-management for chronic pain. Participants highlighted important factors to be considered when designing and developing eHealth interventions for self-management of chronic pain, illustrating the importance and benefit of including users in the development of eHealth interventions. TRIAL REGISTRATION: ClinicalTrials.gov NCT03705104; https://clinicaltrials.gov/ct2/show/NCT03705104