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BACKGROUND: A growing body of research is addressing the process and science of engaging people with lived experience (PWLE) of mental health challenges and other psychiatric conditions, and family members, in research activities. OBJECTIVE: This scoping review of reviews synthesizes literature reviews on the engagement of PWLE and family members in research across the field of psychiatry. METHOD: Systematic searches were conducted in seven bibliographic databases. Records were independently screened first at the title and abstract level, then at the full-text level. Included were any literature synthesis studies published in English, French, or Spanish in any given year, focusing on the engagement of PWLE and/or family members in research within psychiatry. Twenty records were included. Data were extracted in a spreadsheet and codebook thematic analysis was used across the body of articles to synthesize the findings. RESULTS: Aspects of PWLE engagement have been synthesized in 20 review articles reviewing 376 articles across psychiatry as a whole and several subpopulations, including youth mental health, dementia, neurodevelopmental disorders, people who use drugs, and forensic mental health. Information specific to family engagement is lacking. Barriers, facilitators, and positive impacts of PWLE engagement have been widely reported across domains of research, with a considerable degree of consensus across subpopulations. Some negative impacts and reporting challenges have also been identified. DISCUSSION: This scoping review of reviews provides an overarching understanding of the current state of the science of PWLE and family engagement across psychiatry research. The findings can inform future research practices enriched with a genuine and effective engagement with PWLE and families. PATIENT OR PUBLIC CONTRIBUTION: The authorship team includes members with intersecting lived experience and academic identities. Additional lived experience engagement was not conducted as part of this review.
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Família , Transtornos Mentais , Psiquiatria , Humanos , Família/psicologia , Transtornos Mentais/terapiaRESUMO
INTRODUCTION: Family engagement in care has been advocated to promote recovery for patients with mental health conditions. Attitudes of mental health nurses toward the importance of families influence the way they partner with families in mental healthcare. However, little is known about how mental health nurses engage with families and quality of family-centered care (FCC) perceived by patients and caregivers. The study aimed to examine the mediating effect of family nursing practice on the association between mental health nurses' attitudes toward integrating families into care and quality of FCC perceived by patients with schizophrenia and caregivers. DESIGN: A cross-sectional study was conducted. METHODS: A convenience sample of 143 dyads of patients with schizophrenia and their caregivers and 109 mental health nurses were recruited from inpatient wards at two psychiatric hospitals in Taiwan. Demographic and clinical questionnaires, Families' Importance in Nursing Care-Nurses' Attitudes scale, Family Nursing Practice Scale, and Measure of Process of Care for Adults were used to collect data. Data were analyzed using descriptive statistics, independent-sample t-tests, one-way analysis of variance, Pearson correlation coefficients, paired-sample t-tests, and intraclass correlation coefficient (ICC). Mediation analyses were performed using Hayes' PROCESS macro in SPSS (Model 4) with bootstrapping. RESULTS: Mental health nurses exhibited supportive attitudes toward integrating families into care (Mean = 98.96) and greater perceptions of family nursing practice (Mean = 2.44). The concordances between patients and caregivers on perceived quality of family-centered care were significant (ICC = 0.63-0.77). Attitudes of mental health nurses toward integrating families into care had both the total and direct effects on all domains of quality of FCC perceived by patients and caregivers, respectively. The indirect effects of mental health nurses' attitudes toward integrating families into care on aspects of quality of FCC through family nursing practice were significant for patients (95% bias-corrected bootstrap CI of 0.015-0.053) and caregivers (95% bias-corrected bootstrap CI of 0.004-0.041). The magnitude of the indirect effects was medium to large for patients (ES = 0.209-0.257) and caregivers (ES = 0.148-0.221). CONCLUSION: Family nursing practice partially mediated the association between mental health nurses' attitudes toward integrating families into care and aspects of quality of FCC from perspectives of patients and caregivers. CLINICAL RELEVANCE: Interventions tailoring mental health nurses' practice skills and reciprocity with families have the potential to enhance supportive attitudes of mental health nurses toward working with families and further improve perceived quality of FCC in patient-caregiver dyads in mental healthcare practice.
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Service engagement is critical when working with children and families experiencing chronic adversities because of their socially marginalized status. Further, sociodemographic disparities exist in service engagement within service systems including Community-Based Behavioral Health; likely in part, a result of structural issues driving unresponsive service systems. Despite this knowledge, a large proportion of the family engagement literature continues to be approached through a deficit-based and family-centric lens leaving out important systemic considerations and furthering health inequities. Drawing from a Socio-Ecological Framework (Stokols, 1996), this study focuses on exploring the value of peer support providers (PSPs) to understand how sociocultural responsiveness functions under this service model. Individual interviews and focus group data were collected from both families and PSPs. Thematic analysis (Braun & Clarke in Qualitative Research in Psychology, 3(2), 77-101, 2006) was utilized to code and synthetize the data collected. Findings highlight the importance of capitalizing on meaningful and trusting relationships to foster family engagement in services. These findings solidify the understanding that family engagement is a function of crucial relationships between family, provider, and systems. This work also illustrates how PSPs organic embodiment of sociocultural responsiveness through cultural humility is an avenue through which family engagement can be sustained.
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Grupos Focais , Grupo Associado , Humanos , Feminino , Masculino , Criança , Pesquisa QualitativaRESUMO
Background: Family engagement in care is increasingly recognized as an essential component of optimal critical care delivery. However, family engagement strategies have traditionally involved in-person family participation. Virtual approaches to family engagement may overcome barriers to family participation in care. The objective of this study was to perform a scoping review of virtual family engagement strategies in the intensive care unit (ICU). Methods: Studies were included if they involved a virtual engagement strategy with family members of an ICU patient and reported either (1) outcomes, (2) user perspectives, and/or (3) barriers or facilitators to virtual engagement in the ICU. Study types included primary research studies and review articles. Study selection followed the Joanna Briggs Institute Methodology for Scoping Reviews guidelines without any cultural, ethnic, gender, or specific language restrictions. The source of evidence included Ovid MEDLINE, PubMed, CINAHL, and Cochrane Library databases from inception to November 17, 2023. Google scholar was searched on December 1, 2023. Data were extracted on virtual engagement strategy used, outcomes (patient-centered, family-centered, and clinical), perspectives (patient, family, and health care professional [HCP]), and reported barriers or facilitators to virtual engagement in the ICU. Results were categorized into adult or pediatric/neonatal ICU setting. Results: Virtual engagement strategies identified were virtual visitation, virtual rounding, and virtual meetings. Family and HCPs were generally supportive of virtual visitation and rounding strategies. Overall, virtual strategies were associated with improved patient, family, and HCP outcomes. There were a few randomized interventional studies evaluating the effectiveness of virtual engagement strategies. Family, HCP, technological, and institutional barriers to the implementation and conduct of virtual engagement strategies were reported. Conclusions: Virtual family engagement strategies are associated with improved outcomes for patients, family, and HCPs. Identified barriers to virtual family engagement should be addressed. Future studies are needed to evaluate the effectiveness of virtual family engagement strategies in a more rigorous manner.
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Cuidados Críticos , Família , Unidades de Terapia Intensiva , Humanos , Família/psicologia , Cuidados Críticos/organização & administração , Unidades de Terapia Intensiva/organização & administração , Telemedicina/organização & administração , Participação do Paciente/métodos , Relações Profissional-Família , Feminino , MasculinoRESUMO
BACKGROUND: In healthcare, family engagement has been recognized as critical to improved nursing care and outcomes. However, the practice of family engagement in corrections is unknown, despite the large amount of nursing care delivered there. PURPOSE: The study's aim was to describe correctional nurses' perceptions of family engagement and the extent to which it is practiced. METHOD: A qualitative descriptive study design was used, composed of semistructured interviews. Thematic analysis was conducted, including line-by-line coding. DISCUSSION: The main themes of the study were: (a) Family engagement is rare, and (b) Systems friction which describe the lack of family engagement in correctional nursing practice, and the need to balance advocating for patients while maintaining a collegial relationship with correction staff. CONCLUSION: Despite the lack of family engagement in correctional nurses' practice, most participants felt that family engagement would be beneficial for incarcerated patients but would require changes to institutional policies.
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BACKGROUND: Early mobilisation interventions play a role in preventing intensive care unit-acquired weakness in critically ill patients and may contribute to improved recovery. Patient-and-family-centred care includes collaborative partnerships between healthcare professionals and families and is a potential strategy to promote early mobilisation in critical care; however, we currently do not know family member preferences for partnering and involvement in early mobilisation interventions. OBJECTIVES: The objective of this study was to explore family member perspectives on the acceptability and feasibility of partnering with healthcare professionals in early mobilisation interventions for adult critically ill patients. METHODS: A descriptive qualitative design. Semistructured interviews were conducted with family members of adult critically ill patients admitted to an intensive care unit. Data were collected through individual audio-recorded interviews. Interview data were analysed using the six phases of thematic analysis described by Braun and Clark. This study is reported following the Consolidated Criteria for Reporting Qualitative Research guidelines. RESULTS: Most family members of critically ill patients found the idea of partnering with healthcare professionals in early mobilisation interventions acceptable and feasible, although none had ever considered a partnership before. Participants thought their involvement in early mobilisation would have a positive impact on both the patient's and their own wellbeing. Themes uncovered showed that understanding family-member readiness and their need to feel welcome and included in the unfamiliar critical care environment are required before family member and healthcare professional partnerships in early mobilisation interventions can be enacted. CONCLUSIONS: Family members found partnering with healthcare professionals in early mobilisation interventions acceptable and feasible to enact, but implementation is influenced by their readiness and sense of belonging.
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OBJECTIVE: Despite growing interests in patient-reported outcomes, youth and families are rarely involved in designing quality improvement measures. Few quality indicators exist for the care of children with injuries in the Emergency Department (ED) and extremity fractures are among the most common injuries in children. This study's aim was to identify both parents' and youth's perspectives about ED care in the context of a suspected long-bone fracture. METHODS: Youth (10-18 years old) and their parents were surveyed prospectively during their ED visit. Participants were asked: 1) to identify their main concerns, 2) to identify quality measures that were most important to them, and 3) to evaluate the ED care they received. Descriptive analyses present participants' responses. Continuous data was analyzed using a Student t-test and categorical data using a Chi-square test. RESULTS: Over 15 months, 350 families met eligibility criteria and were approached to participate, of which 300 participants consented and 249 surveys were completed (71% response rate): 148 parents and 101 youth (median age: 12) completed their respective surveys. Participants placed a high importance on several themes: pain management, short length of stay, and quality interactions with ED clinicians. Youth as a group prioritized their overall wellbeing and the ED environment (e.g., waiting room comfort, signage), while parents focused on accurate diagnoses and treatments. The following items were less prioritized: that radiology be close to the ED, to see the radiograph, to have access to a wheelchair, to know the identities of clinicians on the team, and to have access to entertainment. Parents and youth within the same family often did not share the same priorities. Ninety-two percent of parents reported their child's pain was treated, while 81% and 63% of youth reported their pain was treated sufficiently and quickly, respectively. CONCLUSIONS: Parents and youth can identify their priorities for ED care and should be engaged in efforts to improve and report on the quality of care in the ED. Youths' and parents' perspectives are complimentary and may not align, even within families. The priorities identified in this study can help inform quality improvement initiatives and personalized patient care.
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Serviços Médicos de Emergência , Fraturas Ósseas , Criança , Adolescente , Humanos , Pais , Serviço Hospitalar de Emergência , Inquéritos e Questionários , Fraturas Ósseas/terapiaRESUMO
While family engagement at the individual level of health care, such as families partnering with providers in decision-making about health care for an individual child has been well studied, family engagement in systems-level activities (e.g., participation in advisory and other decision-making groups, or creation and revision of policies) that impact the health services families and children receive has not. This note from the field presents a framework that describes the information and supports that help families partner with professionals and contribute to systems-level activities. Without attention to these components of family engagement, family presence and participation may be only token. We engaged an expert Family/Professional Workgroup whose members represented key constituencies and diverse geography, race/ethnicity, and areas of expertise; conducted a review of peer-reviewed publications and grey literature; and conducted a series of key informant interviews to identify best practices for supporting meaningful family engagement at the systems level. Based on an analysis of the findings, the authors identified four action-oriented domains of family engagement and key criteria that support and strengthen meaningful family engagement in systems-level initiatives. Child- and family-serving serving organizations can use this Family Engagement in Systems framework to support meaningful family engagement in the design of policies, practices, services, supports, quality improvement projects, research, and other systems-level activities.
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Atenção à Saúde , Família , HumanosRESUMO
BACKGROUND: The 1997 legislation authorizing the United States Child Health Insurance Program sparked progress to measure and publicly report on children's healthcare services quality and system performance. To meet the moment, the national Child and Adolescent Health Measurement Initiative (CAHMI) public-private collaboration was launched to put families at the center of defining, measuring and using healthcare performance information to drive improved services quality and outcomes. METHODS: Since 1996 the CAHMI followed an intentional path of collaborative action to (1) articulate shared goals for child health and advance a comprehensive, life-course and outcomes-based healthcare performance measurement and reporting framework; (2) collaborate with families, providers, payers and government agencies to specify, validate and support national, state and local use of dozens of framework aligned measures; (3) create novel public-facing digital data query, collection and reporting tools that liberate data findings for use by families, providers, advocates, policymakers, the media and researchers (Data Resource Center, Well Visit Planner); and (4) generate field building research and systems change agendas and frameworks (Prioritizing Possibilities, Engagement In Action) to catalyze prevention, flourishing and healing centered, trauma-informed, whole child and family engaged approaches, integrated systems and supportive financing and policies. CONCLUSIONS: Lessons call for a restored, sustainable family and community engaged measurement infrastructure, public activation campaigns, and undeterred federal, state and systems leadership that implement policies to incentivize, resource, measure and remove barriers to integrated systems of care that scale family engagement to equitably promote whole child, youth and family well-being. Population health requires effective family engagement.
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Engaging family members in care improves person- and family-centered outcomes. Many healthcare professionals have limited awareness of the role and potential benefit of family engagement in care. This review describes the rationale for engaging families in care, and opportunities to engage family in various clinical care settings during training and early career practice.
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Família , Pessoal de Saúde , HumanosRESUMO
AIMS: To explore healthcare professionals' perceptions of the feasibility and acceptability of family engagement in early mobilisation for adult critically ill patients. BACKGROUND: Early mobilisation is beneficial to minimise intensive care unit acquired-weakness in critically ill patients and family engagement can help with meeting early mobilisation goals, but it is not widely practiced. Understanding healthcare professionals' perceptions of feasibility and acceptability of family engagement in early mobilisation of adult critically ill patients is required to inform future implementation strategies to promote early mobilisation. DESIGN: A descriptive qualitative study. METHODS: Face-to-face, individual, semi-structured interviews were conducted between August 2021 and March 2022 with healthcare professionals working in two intensive care units in Australia. The interviews were analysed using the inductive content analysis, and descriptive statistics were used to summarise participant characteristics. The COREQ checklist was followed when reporting this study. RESULTS: Eleven ICU nurses, five physiotherapists and four physicians participated in the interviews. Three main categories were identified: (i) healthcare professionals' readiness, (ii) mediators of engagement and (iii) foundations for successful implementation. Most participants demonstrated a positive attitude towards an implementation of family engagement in early mobilisation for adult critically ill patients; however, capability and capacity of healthcare professionals, family members' willingness, availability and readiness and the care context were considered factors that could influence the successful implementation. CONCLUSION: From the perspectives of healthcare professionals, family engagement in early mobilisation is feasible and acceptable to enact but implementation is influenced by contextual factors including, healthcare professionals' capability and capacity and family members' willingness, availability and readiness. Collaborative teamwork and preparing family members and healthcare professionals are needed to support this practice. RELEVANCE TO CLINICAL PRACTICE: The findings provide important information to further identify potential strategies of family engagement in early mobilisation and to help and mitigate factors that impede implementation.
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Estado Terminal , Deambulação Precoce , Humanos , Adulto , Estudos de Viabilidade , Pesquisa Qualitativa , Atenção à SaúdeRESUMO
AIMS AND OBJECTIVES: The aim of the study was to investigate the effect of supporting family members to partner with health professionals on nutrition intakes and decision-making and to evaluate intervention and study feasibility. BACKGROUND: Family partnerships can improve outcomes for critically ill patients and family members. Interventions that support families to engage with health professionals require evaluation. DESIGN: A multi-centre, randomised, parallel group superiority Phase II randomised controlled trial. METHODS: In nine intensive care units (ICUs) across three countries, critically ill patients ≥60 years, or those 55-59 years with advanced chronic diseases and expected ICU length of stay >72 h and their family member were enrolled between 9 May 2017 and 31 March 2020. Participants were randomised (1:1:1) to either a decision support or nutrition optimisation family-centred intervention, or usual care. Primary outcomes included protein and energy intake during ICU and hospital stay (nutrition intervention) and family satisfaction (decision support). Study feasibility was assessed as a composite of consent rate, intervention adherence, contamination and physician awareness of intervention assignment. RESULTS: We randomised 135 patients/family members (consent rate 51.7%). The average rate of randomisation was 0.5 (0.13-1.53) per month. Unavailability (staff/family) was the major contributor to families not being approached for consent. Declined consent was attributed to families feeling overwhelmed (58/126, 46%). Pandemic visitor restrictions contributed to early study cessation. Intervention adherence for the decision support intervention was 76.9%-100.0% and for the nutrition intervention was 44.8%-100.0%. Nutritional adequacy, decisional conflict, satisfaction with decision-making and overall family satisfaction with ICU were similar for all groups. CONCLUSIONS: Active partnerships between family members and health professionals are important but can be challenging to achieve in critical care contexts. We were unable to demonstrate the efficacy of either intervention. Feasibility outcomes suggest further refinement of interventions and study protocol may be warranted. RELEVANCE TO CLINICAL PRACTICE: Interventions to promote family partnerships in critical illness are needed but require a greater understanding of the extent to which families want and are able to engage and the activities in which they have most impact. REPORTING METHOD: This study has been reported following the Consolidated Standards of Reporting Trials (CONSORT) and the Template for Intervention Description and Replication (TIDieR) guidelines. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers were engaged in and contributed to the development and subsequent iterations of the two family-centred interventions use in this study. CLINICAL TRIAL REGISTRATION NUMBER: Trial registration. CLINICALTRIALS: gov, ID: NCT02920086. Registered on 30 September 2016. First patient enrolled on 9 May 2017 https://clinicaltrials.gov/ct2/results?cond=&term=NCT02920086&cntry=&state=&city=&dist=.
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Estado Terminal , Estado Nutricional , Humanos , Tempo de Internação , Unidades de Terapia Intensiva , Cuidados CríticosRESUMO
Medical assistance in dying (MAiD) was introduced into Canadian federal legislation in 2016. Mental illness as the sole underlying medical condition (MI-SUMC) is currently excluded from eligibility; such exclusion is scheduled to expire on March 17, 2024. Irremediability, capacity, quality of life, autonomy, family involvement, and healthcare system constraints have been debated intensively. Recent studies have not explored the views of family members of persons with mental illness on MAiD MI-SUMC. This study aimed to fill this knowledge gap. Twenty-five Ontario residents who had a loved one with mental illness participated. A persona-scenario exercise was designed to explore participants' views on MAiD MI-SUMC in hypothetical situations. Reflexive thematic analysis was used to analyze the data. A lived experience-advisory panel was engaged throughout the study. Seven themes were developed: Witnessing suffering; A road with barriers and limitations; Societal barriers; The unknowns of mental illness; Individual choices: the life or death that a person wants; MAiD MI-SUMC as an acceptable choice when suffering cannot be relieved with available treatments and supports; and The emotional outcome. Participants constructed their views based on their experience of supporting a loved one with mental illness. MAiD MI-SUMC was perceived as a multifaceted issue, whose acceptability and potential introduction required a concurrent exploration and discussion of the challenges arising due to limitations of the healthcare system, the opportunities and limits to family involvement, and the value of patient autonomy.
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Transtornos Mentais , Suicídio Assistido , Humanos , Canadá , Suicídio Assistido/psicologia , Qualidade de Vida , Transtornos Mentais/terapia , Ontário , Família , Assistência Médica , CaminhadaRESUMO
Introduction: Traditional face-to-face family member visits in the intensive care unit (ICU) are challenged during the coronavirus disease pandemic with time-critical visiting of the ICU patient being impossible. Objective: This study aimed to explore reported experiences and satisfaction surrounding the use of technology for virtual visits and virtual family meetings in the ICU setting. Two groups were surveyed: (1) family members of critically ill patients in the ICU and (2) health care workers caring for these patients. Design: The study, conducted in the 36-bed ICU of a speciality metropolitan acute care facility in Australia, used a pragmatic post-test survey design. Data were analyzed descriptively. Results: Of health care worker subjects, 106 completed the survey and the majority of communication episodes favored virtual visits (79.2%, n = 84). Of family member subjects, 69 completed the survey, with the majority participating in virtual family meetings (40.6%, n = 28). Both groups indicated satisfaction with virtual communication. Conclusions: We found virtual communication was positively received.
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COVID-19 , Humanos , COVID-19/epidemiologia , Inquéritos e Questionários , Unidades de Terapia Intensiva , Cuidados Críticos , FamíliaRESUMO
Accessing mental health treatment in rural locations is a unique challenge for families with youth experiencing adverse mental health conditions. Families often experience a variety of difficulties accessing and negotiating changes within the system of care. This study aimed to understand the experiences of families and their youth in navigating the mental health system in a rural community. Interpretative phenomenological analysis was used to examine how participants interpret their experiences within the local system of care. Qualitative interviews were conducted with eight families. Results included five main themes: youth experience, family experience, access to a system of care, relationships between stakeholders, and larger societal beliefs. Families highlighted their experiences accessing the local care system and their hope for strengthening community access and partnerships. Findings indicate that prioritizing family voices should be encouraged by local systems.
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Transtornos Mentais , Serviços de Saúde Mental , Adolescente , Humanos , Saúde Mental , Transtornos Mentais/terapia , População Rural , Pesquisa QualitativaRESUMO
Probation is a common sanction for youth substance users, and as such, juvenile probation officers (JPOs) shoulder much of the burden for treatment and rehabilitation. To improve youth outcomes and alleviate some of the burden, JPOs may seek parental involvement in the probation and substance use desistance processes. Using focus group data, we analyzed JPO perceptions of the role parents play in contingency management (CM)-an incentive system designed to produce and reward decreased substance use-and whether they perceived any value in CM. We found that most JPOs perceived parental involvement as critical to the success of both substance use treatment and CM for youth. Our findings also suggest JPOs found parental involvement in CM valuable given that CM was employed on nonstudy clients and future clients. This has implications for the practicality and sustainability of CM as a youth probation intervention.
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The impact of an intensive care unit (ICU) admission on family caregivers of patients who have undergone hematopoietic stem cell transplantation (HSCT) has not been well described. Aims of this study were to determine the feasibility of conducting research with family caregivers of HSCT patients during an ICU admission and generate preliminary data about their experiences and engagement in care. Using a mixed-methods, repeated measures design, we collected data from family caregivers after 48 hr in the ICU (T1) and at 48 hr after transferring out of ICU (T2). Enrolling HSCT caregivers in research while in the ICU was feasible (10/13 consented; 9/10 completed data collection at T1); however, data collection at T2 was not possible for most caregivers. Caregiver distress levels were high, and engagement in care was moderate. The three themes that emerged from interviews (n = 5) highlighted that although HSCT family caregivers faced many challenges and received limited support during their ICU experience, they were able to access their own personal resources and demonstrated resilience.
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Cuidadores , Transplante de Células-Tronco Hematopoéticas , Humanos , Estudos de Viabilidade , Unidades de Terapia Intensiva , Projetos de Pesquisa , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Transplante de Células-Tronco Hematopoéticas/métodosRESUMO
BACKGROUND: Patient and family engagement in the intensive care unit increases the quality of care and patient safety. AIM: The aim of our study was to describe current practice and experiences of contemporary patient and family engagement in the intensive care unit at the individual level, the organizational level, and in the research process according to critical care nurses. DESIGN/METHOD: We conducted a national qualitative survey of intensive care units in Denmark from 5th May-5th June 2021. Questionnaires were piloted and sent to intensive care nurse specialists and research nurses at 41 intensive care units, allowing one respondent per unit. All respondents were provided with written information about the study by email, and by activating the survey link, they accepted participation. RESULTS: Thirty-two nurses responded to the invitation, 24 completed and 8 partially completed the survey, yielding a response rate of 78%. At the individual level, 27 respondents stated that they involved patients and 25 said they involved family in daily treatment and care. At the organizational level, 28 intensive care units had an overall strategy or guideline for patient and family engagement, and 4 units had established a PFE panel. And, finally, 11 units engaged patients and families in the research process. CONCLUSIONS: Our survey suggested that patient and family engagement was implemented to some degree at the individual level, organizational level, and in the research process, but only 4 units had established a PFE panel at the organizational level, which is key to engagement. RELEVANCE TO CLINICAL PRACTICE: Patient engagement increases when patients are more awake, and family engagement increases when patients are unable to participate. Engagement increases when patient and family engagement panels are implemented.
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Background: Youth and parent engagement is a key component of clinical research. There are many ways to actively and meaningfully engage youth and parents as integral members of research teams, for example, through ad-hoc committees, advisory councils, or as co-leads on projects. When youth and parents are actively and meaningfully engaged in research projects, they share knowledge from their lived experiences to improve the quality and relevance of research. Methods: We describe a case-based example of engaging youth and parent research partners when co-designing a questionnaire to assess preferences for pediatric headache treatments, from both a researcher and youth/parent perspective. We also summarize best practices in patient and family engagement from the literature and pertinent guidelines to assist researchers with integrating patient and family engagement into their studies. Results: As researchers, we felt that the integration of a youth and parent engagement plan into our study significantly altered and strengthened questionnaire content validity. We encountered challenges throughout the process and detailed these experiences to help educate others about challenge mitigation and best practices in youth and parent engagement. As youth and parent partners, we felt that engaging in the process of questionnaire development was an exciting and empowering opportunity, and that our feedback was valued and integrated. Conclusions: By sharing our experience, we hope to catalyze thought and discussion around the importance of youth and parent engagement in pediatric research, with the goal of stimulating more appropriate, relevant, and high-quality pediatric research and clinical care in the future.
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Scholars have argued against a post-COVID return to normality on the grounds that the pandemic offers an opportunity to break with the past and imagine a different, more just future. In this analysis of pre-kindergarten teachers' reflections on teaching during COVID-19 in the state of Michigan, we take up the notion of the pandemic as a portal to consider how practices that emerged during the pandemic might be carried forward post-pandemic. Through a qualitative interview study with 25 public pre-K teachers in Michigan, we sought to understand how the pandemic altered the nature of family-teacher engagement. Our analysis led us to conceptualize teaching as an improvisational practice that was highly responsive to the circumstances and needs of families. We identified three central themes that animated pre-K teachers' work during the pandemic: supporting families through new types of "offers" (a term from improv theory), making learning accessible, and fostering collectivity by partnering with families. Teachers' practices during the pandemic reveal new avenues for conceptualizing family engagement as an improvisational practice. We draw on the principles of improv theory to outline a framework for this approach.