Educational programmes for paediatric healthcare professionals in patient- and family-centred care. A scoping review.

To identify and describe educational programmes in patient- and family-centred care for paediatric healthcare professionals. This scoping review was conducted and reported according to the JBI Manual for Evidence Synthesis and the PRISMA guideline. The databases searched included MEDLINE (PubMed), PsycINFO, CINAHL, Scopus, Cochrane, and Embase. Inclusion criteria were experimental, observational and qualitative studies about educational programmes on patient- and family-centred care for paediatric healthcare professionals. Exclusion criteria were reviews and non-peer-reviewed literature. Two reviewers independently screened and extracted the data using Covidence. Of the 13922 records identified, 49 articles met the inclusion criteria. There was a large variety of educational programmes, half of which were interdisciplinary, that mainly targeted nurses and doctors. The median number of participants was 51 (range 7 to 1411). The predominant target population was children with chronic disabilities and neonatal intensive care units, and only one programme specifically targeted adolescents. The median duration was one day (range 5 min to 3.5 years). Development of competencies was the most common objective. We identified 12 different educational content areas. Content mainly focused on communication and relational competencies, including partnership, which involved shared decision-making, mutual agenda setting, and negotiation of a plan. Many kinds of educational strategies were found but experiential learning through simulation and roleplay was used most.   Conclusion: A large variety of educational programmes in paediatric patient- and family-centred care exist. Educational content mainly focused on communication and relational competencies. Experiential learning including roleplay and simulation was the most used educational strategy. What is Known: • Delivery of patient- and family-centred care improves parental satisfaction of care but requires clinicians have a certain attitude towards involving the child and parents in a healthcare partnership as well as advanced triadic communication skills. Little is known about how this attitude, and more broadly, patient- and family-centred care, can be facilitated through education and training. What is New: • This scoping review found a wide array of programmes.. Workshops with simulation or roleplay was the most frequent educational strategy. The programmes, which typically targeted nurses and doctors, chiefly focused on basic and advanced communication and relational competencies, including partnership, which involved shared decision-making and negotiation of plans.

Exploring critically ill patients' functional recovery through family partnerships: A descriptive qualitative study.

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.

Understanding equitable and affirming communication moments and relationship milestones during the intensive care unit journey: findings from stage 1 of a design thinking project.

PURPOSE: Communication is vital to facilitate patient and family-centred care (PFCC) and to build trusting relationships between intensive care unit (ICU) health care providers, the patient, and their loved ones in the ICU. The focus of this investigation was to identify, define, and refine key moments of communication, connection, and relationship building in the ICU through a lens of Equity, Diversity, Decolonization, and Inclusion (EDDI) to encourage meaningful communication and development of trusting relationships. METHODS: We conducted 13 journey mapping interviews with ICU health care providers, patients, and their loved ones as the first stage in a design thinking project. We used directed content analysis to identify intersections where principles of EDDI directly or indirectly impacted communication, relationships, and trust throughout the ICU journey. To serve diverse patients and their loved ones, accessibility, inclusivity, and cultural safety were foundational pillars of the design thinking project. RESULTS: Thirteen ICU health care providers, patients, and their loved ones participated in journey mapping interviews. We defined and refined 16 communication moments and relationship milestones in the journey of a patient through the ICU (e.g., admission, crises, stabilization, discharge), and intersections where EDDI directly or indirectly impacted communication and connection during the ICU journey. CONCLUSION: Our findings highlight that diverse intersectional identities impact communication moments and relationship milestones during an ICU journey. To fully embrace a paradigm of PFCC, consideration should be given to creating an affirming and safe space for patients and their loved ones in the ICU.

RéSUMé: OBJECTIF : La communication est essentielle pour faciliter les soins axés sur la patientèle et la famille et pour établir des relations de confiance entre les prestataires de soins de santé de l'unité de soins intensifs (USI), la patientèle, et ses proches à l'USI. L'objectif de cette enquête était d'identifier, de définir et de peaufiner les moments clés de communication, de connexion et de création de relation aux soins intensifs sous l'angle de l'équité, de la diversité, de l'inclusion et de la décolonisation (EDID) afin d'encourager une communication profonde et la création de relations de confiance. MéTHODE: Nous avons mené 13 entretiens de cartographie du parcours avec des prestataires de soins et des patient·es de l'USI ainsi qu'avec leurs proches dans le cadre de la première étape d'un projet de réflexion conceptuelle. Nous avons utilisé l'analyse de contenu dirigée pour identifier les intersections où les principes de l'EDID ont eu un impact direct ou indirect sur la communication, les relations et la confiance tout au long du parcours aux soins intensifs. L'accessibilité, l'inclusivité et la sécurité culturelle ont constitué des piliers fondamentaux du projet de réflexion conceptuelle pour desservir une patientèle diverse et ses proches. RéSULTATS: Treize prestataires de soins et patient·es de l'USI et leurs proches ont participé à des entrevues de cartographie du parcours. Nous avons défini et affiné 16 moments de communication et jalons de la relation dans le parcours d'un·e patient·e à l'USI (p. ex. admission, crises, stabilisation, congé) et les intersections où l'EDID a eu une incidence directe ou indirecte sur la communication et la connexion pendant le parcours aux soins intensifs. CONCLUSION: Nos résultats soulignent que les diverses identités intersectionnelles ont un impact sur les moments de communication et les jalons de la relation lors d'une trajectoire aux soins intensifs. Pour adopter pleinement un paradigme de soins axés sur la patientèle et sa famille, il faudrait envisager de créer un espace d'affirmation et de sécurité pour les patient·es et leurs proches à l'unité de soins intensifs.

Exploring the impact of the COVID-19 environment on nursing delivery of family-centred care in a paediatric hospital.

AIMS AND OBJECTIVES: To understand how the pandemic environment impacted the delivery of FCC of children and families from a nursing perspective in a major tertiary paediatric hospital. BACKGROUND: Family-centred care (FCC) is a well-established framework to promote parental involvement in every aspect of a child's hospitalization, however, rules and restrictions in place during the COVID-19 pandemic affected the ways in which Family-centred Care could be delivered in practice. DESIGN: This is a qualitative exploratory descriptive study to elicit the perspective of paediatric nurses delivering care to children in a hospital during the COVID-19 pandemic in Victoria, Australia. METHODS: Nurses from all subspecialties in a tertiary paediatric hospital were invited to participate in virtual focus groups to discuss their experience of delivering FCC during the COVID-19 pandemic. Focus groups were recorded and transcribed, then analysed using Framework Analysis. RESULTS: Nineteen nurses participated across seven focus groups during June and July 2020. The four themes-Advocating with empathy, Enabling communication, Responding with flexibility, and Balancing competing considerations-and the eight subthemes that were generated, outline how nurses deliver FCC, and how these FCC actions were impacted by the COVID-19 environment and the related hospital restrictions. CONCLUSION: This study documents the experiences, resilience and resourcefulness of paediatric nurses in Australia during the COVID-19 pandemic as well as moving Family-centred Care from a theoretical framework into a practical reality. IMPACT: The findings from this study should inform consideration of the impacts of public health policies during infectious disease outbreaks moving forward. In addition by describing the core actions of Family-centred Care, this study has implications for educational interventions on how to translate FCC theory into practice. No public or patient contribution as this study explored nursing perceptions only.

Parents of children with disabilities' perceptions regarding the quality of interaction with Health professionals working in early intervention: A qualitative descriptive study.

AIMS AND OBJECTIVES: The aim of this study is to explore the perceptions of parents of children with physical disabilities concerning the quality of their interaction with health professionals in early intervention programs. BACKGROUND: Despite the consensus on the need for Patient and Family-Centered Care, there are still difficulties when executing such care. The quality of interaction among patients, families, and professionals is essential to facilitate the implementation of the programs. DESIGN: A qualitative descriptive study with thematic analysis using a Modified Grounded Theory approach. METHODS: Data were collected through seven focus groups with 28 parents of children with physical disabilities who were undergoing early intervention programs in three centres. The study followed the COREQ guidelines and checklist. RESULTS: Two themes emerged from the experiences: 'exchange of information and education', which included all the activities, procedures, exercises and skills taught by the professionals to help parents care for their child; and 'interpersonal skills', which focused on the way the professional relates with the child and the parents. Several subthemes emerged within each theme. CONCLUSIONS: This study identified which elements of the professional-parent interaction are considered by parents when evaluating the quality of their interaction with the health care provider of their children. RELEVANCE TO CLINICAL PRACTICE: The results of this study bring to light certain behaviours and interactions that health professionals should consider in order to improve the perceptions of parents of children with disabilities regarding the quality of interaction in the context of early childhood intervention. PATIENT OR PUBLIC CONTRIBUTION: Parents contributed to the data collected. Early intervention professionals were involved in participant checking to ensure the rigour of the study.

Children living with long-term conditions and their experiences of partnership in nursing care: An integrative systematic review.

AIMS AND OBJECTIVE: To describe the experiences of nursing care and partnership nursing as expressed by children living with long-term conditions. BACKGROUND: Children with long-term conditions have higher rates of hospitalisations and adverse events in hospital, yet little is known about their experiences of nursing care. How children perceive partnership in care with their families and nurses is of interest in the achievement of safe and effective care DESIGN: An integrative review following Joanna Briggs Institute protocols for systematic reviews. METHOD: An integrative review was chosen following Joanna Briggs Institute protocols for systematic reviews. A total of 5150 articles were screened, with 251 full-text publications reviewed. A total of 21 studies were included, three mixed-method studies and 18 qualitative studies. This review has been reported as per Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. RESULTS: Four integrated findings were identified: "Children are aware of their surroundings and needs," "Children value positive communication," "Children want to be recognised as an individual in the triadic relationship, and this can be done through nurses using tailored play;" and "Children seek a shared decision-making process." DISCUSSION: Children wanted to be seen as an individual in Children and Young People's nursing as well as a child who craves security, fun and comfort, both from their families and nursing staff. Children described observing partnership between nursing staff and parents but felt uninvolved, with some children craving more knowledge and power to better understand their long-term condition. RELEVANCE TO CLINICAL PRACTICE: Further research is required on how Children and Young People's nursing staff can better support children and empower them to be active members in the shared decision-making process if the child wishes to be involved.

The impact of the intensive care unit family liaison nurse role on communication during the COVID-19 pandemic: A qualitative descriptive study of healthcare professionals' perspectives.

BACKGROUND: The COVID-19 pandemic has deeply impacted patient and family communication and patient- and family-centred care in the intensive care unit (ICU). A new role-the ICU Family Liaison Nurse (FLN)-was introduced in an Australian metropolitan hospital ICU to facilitate communication between patient and family and ICU healthcare professionals, although there is limited knowledge about the impact of this from the ICU healthcare professionals' perspectives. OBJECTIVE: The aim of this study was to explore the impact of the ICU FLN role on communication with patients and their family during the COVID-19 pandemic, from the ICU healthcare professionals' perspectives. METHODS: A qualitative descriptive study was conducted. Seven participants including ICU FLNs, ICU doctors, nurses, and social workers who worked with the ICU FLNs were interviewed. Thematic analysis was used to analyse the data. RESULTS: Two main themes related to the ICU FLN role were identified. First, the COVID-19 pandemic posed challenges to patient and family communication, but it also created opportunities to improve patient and family communication. Second, the ICU FLN role brought beneficial impacts to the ICU healthcare professionals' workflow and work experience, as well as patient and family communication. The ICU FLN role has potential benefits that extend beyond the pandemic. CONCLUSION: We found that during the COVID-19 pandemic, the ICU FLN role was acceptable, beneficial, and appreciated from the ICU healthcare professionals' perspectives. Further research should continue the evaluation of the ICU FLN role during and post the pandemic.

Problematising assumptions about 'centredness' in patient and family centred care research in acute care settings.

Over the last two decades significant efforts have been made to implement patient and family 'centred' care as both a practical and moral imperative for adult acute care delivery. Although many resources have been developed and adopted by institutions, research suggests persistent and diverse barriers to implementing and achieving patient and family 'centred' care in adult acute care practice settings. These issues in implementation suggest re-examining the nature of 'centredness' in care may be useful. A structured problematisation method, as outlined by Alvesson and Sandberg, is utilised to identify and analyse assumptions about the central notions of 'centring' that inform patient and family centred care intervention research. From our analysis, we highlight three predominant areas within 'centring' intervention research that may benefit from rethinking: Vitruvian spatiality, democratising care, and 'centring' positioned as primarily a problem and accomplishment for nursing. As a challenge to these assumptions, we argue for the adoption of theoretical lenses that 'de-centre' individual actors to better account for complex relations among multiple actors, both human and nonhuman, which work to involve patients and families in care practices.

3Cs: the experiences of informal caregivers of patients undergoing thoracic surgery.

The informal caregiver is pivotal to the postoperative experience of patients. The purpose of this study was to explore the informal caregivers' experience while accompanying patients through thoracotomy surgery. Specifically, and exclusively, the informal carers' personal reactions, needs and views regarding their experience in the patients' surgery trajectory were explored. A convenience sample of eight informal caregivers of patients who had undergone thoracotomy were interviewed approximately 2 weeks following discharge from a general hospital in Malta. The findings revealed knowledge regarding participants' experiences of demands and fears associated with the 3Cs: cancer, challenges and coping. The impact of timely information-sharing and support on the informal caregiver's experience was highlighted. These findings suggest that careful consideration of both a patient's and informal caregiver's needs promotes an enhanced hospitalisation experience, and creates opportunity for a better transition back home. Implications for research and practice are discussed.

Exploring family participation in patient care on acute care wards: A mixed-methods study.

BACKGROUND: Patient- and family-centred care practices are a recommended part of contemporary care for the acutely ill hospitalized adult patients. However, how patient- and family-centred care is enacted in an adult hospital setting is not well understood. AIMS AND OBJECTIVES: The aim of this study is to explore the perceptions of patients, family members and nurses regarding family participation and collaboration in patient care within an acute care setting, including the barriers and facilitators. DESIGN: This study used a mixed-methods sequential design. METHODS: Observer-as-participant observations and semistructured interviews were undertaken. Integration of the data was achieved through triangulation. RESULTS: Triangulation revealed two metathemes. The first metatheme, 'continuum of family involvement', explained the central viewpoint of how family participation and collaboration in the care of acutely ill hospitalized adult patients was enacted. The second metatheme, 'nurses value family involvement', helped to explain and understand the barriers and facilitators to enacting family participation in the acute care setting. CONCLUSION: Promoting family participation in the acute care setting requires supporting multiple levels of engagement. Developing a relationship, clear communication and open sharing of information amongst patients, family members and nurses is critical to supporting family involvement.