Family Engagement Research Articles

Voices from the ground: Qualitative perspectives on Ugandan national mental health system strengths, challenges, and recommendations

Mental health capacity building is a growing priority in Ugandan healthcare systems. Despite increased governmental attention to community mental health and mental healthcare needs, no empirical assessments document qualitative perspectives from stakeholders in the Ugandan mental health system. The goal of the current needs assessment study was to systematically explore stakeholders’ perceptions of strengths, challenges, and recommendations for enhancing capacity in the national mental health system in Uganda. Using ethnographic research methods, data were collected from 15 key informant interviews and four community focus groups with a total of 44 stakeholders involved in mental healthcare in Uganda. Thematic analyses of data yielded several themes in each domain, including 1) system strengths reflected in the existing policy and action plan, free medications, growing private sector, and partnerships and collaborations; 2) system challenges including socioeconomic constraints, stigma, and limited family engagement; and 3) recommendations surrounding enhanced education and training, integrating systemic approaches, and policy advocacy. We describe clinical, research, and policy implications that can inform systemic mental health efforts in Uganda and comparable global settings.

Community Leaders’ Perceptions of the Unique Service Barriers and Facilitators Among Immigrant Families With Young Children in the Rural U.S.–Mexico Border Region

The present descriptive phenomenological study examines the unique service access barriers and facilitators of immigrant families along the rural U.S.–Mexico border from the perspectives of agency and government representatives. Twenty-three semi-structured interviews were conducted with nine local/state government officials and 14 community agency leaders using purposive and snowball sampling. A phenomenological thematic analysis approach was utilized to analyze data from individual interviews. Findings reveal that unique barriers experienced by immigrant families in the U.S.–Mexico border region include rurality, border checkpoints, and U.S. Customs and Border Patrol presence, which have placed mobility limitations on immigrant families, cutting them off from central service providers. Programs and policies aimed at engagement of mixed-status families in areas along the U.S.–Mexico border need to create mechanisms to better reach these families.

Building Engagement-Capable Environments for Health System Transformation: Development and Early Implementation of a Capability Framework for Patient, Family and Caregiver Engagement in Ontario Health Teams.

Despite widespread calls to involve patients, families and caregivers (PFCs) as partners at all levels of health system planning and design, there is unevenness in how engagement efforts are supported across these settings. The concept of 'engagement-capable environments' offers a way forward to uncover the key requirements for sustainable, high-quality engagement, but more work is needed to identify the specific competencies required to create these environments. We addressed this gap by developing a capability framework for Ontario Health Teams (OHTs), a newly established structure for planning, designing, organizing and delivering care in Ontario, Canada. The framework was co-developed by a Working Group of OHT staff and leaders, PFC partners, researchers and government personnel. Project activities occurred over four phases: (1) planning, (2) evidence review and surveying of intended users to identify key competencies, (3) framework design and (4) implementation. An evidence review identified more than 90 potential competencies for this work. These results were contextualized and expanded through a survey of OHT stakeholders to brainstorm potential competencies, supports and enablers for engagement. Surveys were completed by 69 individuals; 689 knowledge and skill competency statements, 462 attitude and behaviour competency statements and 250 supports and enablers were brainstormed. The statements were analysed and organized into initial competency categories, which were reviewed, discussed and iteratively refined by Working Group members and through broader consultations with the OHT community. The final framework includes six competency domains and four support and enabler domains, each with sub-domain elements, mapped across a three-stage maturity model. The framework has been disseminated across OHTs, and its adoption and implementation are now requirements within OHT agreements. The framework combines a strong conceptual foundation with actionable elements informed by the literature and consultations with the intended users of the framework. Although developed for OHTs, the framework should be broadly applicable to other health system organizations seeking similar health system transformation goals. Patient, family and caregiver partners were involved at all stages and in all aspects of the work. As end users of the framework, their perspectives, knowledge and opinions were critical.

PP061 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: ENTERING PLACES OF SUFFERING - NURSES’ PERSPECTIVES ON ENACTING COMPASSION IN THE PICU

PP061 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: ENTERING PLACES OF SUFFERING - NURSES’ PERSPECTIVES ON ENACTING COMPASSION IN THE PICU

Pediatric Learning Health Networks in Solid Organ Transplantation-Engaging all Stakeholders to Achieve Health for Children Who Require Transplantation.

Learning Health Networks (LHN) have evolved within medicine over the past two decades, but their integration into transplantation has been more recent. In this paper, we describe three LHNs in end-stage organ disease/transplantation, their common and unique features, and how their "actor-oriented" architecture allowed for rapid adaptation to meet the needs of their patients and practitioners during the recent COVID-19 pandemic. The structure and focus of the Improving Renal Outcomes Collaborative (IROC), Starzl Network for Excellence in Pediatric Transplantation (SNEPT), and the Advanced Cardiac Therapies Improving Outcomes Network (ACTION) are reviewed. We discuss the critical role of patient and family engagement, focusing on collaboration with Transplant Families. Finally, we review challenges common to the LHN concept and potential common areas of alignment to achieve the goal of more rapid and sustained progress to improve health in pediatric transplantation. LHN in transplantation are essential to accelerate knowledge dissemination and improve outcomes.

PP060 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: MOVING FROM PARTICIPATION TOWARDS PARTNERSHIP IN THE PERIOPERATIVE PHASE

PP060 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: MOVING FROM PARTICIPATION TOWARDS PARTNERSHIP IN THE PERIOPERATIVE PHASE

PP319 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: PICU HEALS: HEALING-CENTERED CARE, EQUITY, ACES AWARE, DIVERSITY AND INCLUSION, AND SOCIAL INFLUENCERS OF HEALTH

PP319 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: PICU HEALS: HEALING-CENTERED CARE, EQUITY, ACES AWARE, DIVERSITY AND INCLUSION, AND SOCIAL INFLUENCERS OF HEALTH

PP316 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: EXPERIENCES OF SIBLINGS WHEN A CHILD IS CRITICALLY ILL: A QUALITATIVE SYSTEMATIC REVIEW.

PP316 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: EXPERIENCES OF SIBLINGS WHEN A CHILD IS CRITICALLY ILL: A QUALITATIVE SYSTEMATIC REVIEW.

PP322 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: HOW TO ENCOURAGE PARENTAL PARTICIPATION IN PICU DECISION-MAKING?

PP322 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: HOW TO ENCOURAGE PARENTAL PARTICIPATION IN PICU DECISION-MAKING?

PP062 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: FAMILY-INITIATED INTERPRETATION: A NOVEL APPROACH TO COMMUNICATION IN THE PEDIATRIC INTENSIVE CARE UNIT

PP062 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: FAMILY-INITIATED INTERPRETATION: A NOVEL APPROACH TO COMMUNICATION IN THE PEDIATRIC INTENSIVE CARE UNIT

PP317 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: FAMILY PARTICIPATION DURING THE FAMILY-CENTERED ROUNDS IN THE PEDIATRIC INTENSIVE CARE UNIT: PERCEPTIONS OF PARENTS AND HEALTH CARE PROVIDRES

PP317 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: FAMILY PARTICIPATION DURING THE FAMILY-CENTERED ROUNDS IN THE PEDIATRIC INTENSIVE CARE UNIT: PERCEPTIONS OF PARENTS AND HEALTH CARE PROVIDRES

PP059 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: MEASURING FAMILY-CENTRED CARE IN SHEFFIELD CHILDREN’S HOSPITAL’S CRITICAL CARE UNIT

PP059 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: MEASURING FAMILY-CENTRED CARE IN SHEFFIELD CHILDREN’S HOSPITAL’S CRITICAL CARE UNIT

PP057 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: GAPS IN THE CDH JOURNEY: RESEARCH PRIORITIES FOR CONGENITAL DIAPHRAGMATIC HERNIA

PP057 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: GAPS IN THE CDH JOURNEY: RESEARCH PRIORITIES FOR CONGENITAL DIAPHRAGMATIC HERNIA

PP324 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: THE IMPACT OF A CONTINUITY OF CARE MODEL BASED ON INFORMATION PLATFORMS ON THE GROWTH AND DEVELOPMENT OF PREMATURE INFANTS AND MATERNAL ANXIETY

PP324 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: THE IMPACT OF A CONTINUITY OF CARE MODEL BASED ON INFORMATION PLATFORMS ON THE GROWTH AND DEVELOPMENT OF PREMATURE INFANTS AND MATERNAL ANXIETY

PP099 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: EXPERIENCE OF CARE FOR CAREGIVERS AND CHILDREN PROVIDED BY HEALTH PERSONNEL DURING HOSPITALIZATION IN THE PICU IN THE SECOND HALF OF 2023.

PP099 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: EXPERIENCE OF CARE FOR CAREGIVERS AND CHILDREN PROVIDED BY HEALTH PERSONNEL DURING HOSPITALIZATION IN THE PICU IN THE SECOND HALF OF 2023.

PP320 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: EXPERIENCES WITH COMMUNICATION FOR LOW-INCOME FAMILIES WITH CHILDREN IN THE PEDIATRIC ICU: A QUALITATIVE STUDY

PP320 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: EXPERIENCES WITH COMMUNICATION FOR LOW-INCOME FAMILIES WITH CHILDREN IN THE PEDIATRIC ICU: A QUALITATIVE STUDY

PP323 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: UN-SEEN PATIENTS: CARING FOR SIBLINGS DURING PEDIATRIC CRITICAL HOSPITALIZATION

PP323 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: UN-SEEN PATIENTS: CARING FOR SIBLINGS DURING PEDIATRIC CRITICAL HOSPITALIZATION

OP053 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: UNPLANNED INPATIENT TRANSFERS TO THE PEDIATRIC INTENSIVE CARE UNIT: A QUALITATIVE DESCRIPTIVE STUDY OF PARENTAL EXPERIENCES

OP053 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: UNPLANNED INPATIENT TRANSFERS TO THE PEDIATRIC INTENSIVE CARE UNIT: A QUALITATIVE DESCRIPTIVE STUDY OF PARENTAL EXPERIENCES

PP056 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: PICTURE THIS: USING PHOTOVOICE TO UNDERSTAND FAMILY HEALTH AND COMMUNICATION IN CHILDHOOD MEDICAL COMPLEXITY

PP056 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: PICTURE THIS: USING PHOTOVOICE TO UNDERSTAND FAMILY HEALTH AND COMMUNICATION IN CHILDHOOD MEDICAL COMPLEXITY

PP537 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: FAMILY PARTICIPATION DURING THE FAMILY-CENTERED ROUNDS IN THE PEDIATRIC INTENSIVE CARE UNIT: PERCEPTIONS OF PARENTS AND HEALTH CARE PROVIDRES

PP537 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: FAMILY PARTICIPATION DURING THE FAMILY-CENTERED ROUNDS IN THE PEDIATRIC INTENSIVE CARE UNIT: PERCEPTIONS OF PARENTS AND HEALTH CARE PROVIDRES