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.

Information concerning ICU patients' families in the handover-The clinicians' «game of whispers¼: A qualitative study.

AIMS AND OBJECTIVES: To explore how information concerning ICU patients´ families is included in the ICU clinicians' daily handover. BACKGROUND: Handover refers to the transfer of information and care responsibility between clinicians. An effective and precise handover are of great importance to ensure quality of care. Although improvements in handovers have received increasing attention in recent decades, little is known about how information about ICU patients' family members is included in handovers. DESIGN: A qualitative study using Charmaz' constructivist grounded theory approach. METHODS: Data were gathered through participant observation, focus groups, dyadic and individual interviews of physicians and nurses from four ICUs in different Norwegian hospitals. The data consist of 270 observation hours, seven focus groups, three dyadic interviews and two individual interviews. Field notes and transcribed interview data were analysed using constructivist grounded theory approach. COREQ checklist was applied as reporting guideline for this study. FINDINGS: "A game of whispers" emerged as the core category, representing missing information about the patient's family during the handover. Together with three subcategories: "documentation dilemmas," "being updated" and "talking together," the core category explains how transfer of family-related information between clinicians is continually processed and resolved. CONCLUSIONS: This study indicates challenges related to appropriate and high-quality handover concerning ICU patients´ families. Oral handovers are essential in terms of clinicians' need to elaborate on written information and update each other. However, oral transmission involves a high risk of information loss during the handover. Written documentation about the family seems to be inadequate and poorly structured. RELEVANCE TO CLINICAL PRACTICE: The study findings suggest a need for increased awareness in practice and research of the importance of transferring appropriate and reliable information about patients' families between ICU clinicians. User-friendly handover tools and patient records that include information on patients' family members should be developed.

The experiences and needs of relatives of intensive care unit patients during the transition from the intensive care unit to a general ward: A qualitative study.

BACKGROUND: Relatives of intensive care unit (ICU) patients play an important role as caregivers and can experience emotional distress, also referred to as post-intensive care syndrome-family. A deeper understanding of what relatives go through and what they need may provide input on how to strengthen family-centred care and, in the end, contribute to the reduction of symptoms of post-intensive care syndrome-family. METHOD: This is a qualitative descriptive study with semistructured face-to-face interviews after ICU transfers. FINDINGS: A total of 13 relatives of ICU patients participated. Relatives of ICU patients expressed five types of experiences after transfer from the ICU to the general ward: (1) relief, (2) uncertainty, (3) need to be acknowledged in becoming a caregiver, (4) sharing expectations, and (5) need for continuity in care. Relatives experience major uncertainties and prefer to be more actively involved in care and care decisions. CONCLUSION: Relatives of ICU patients experience gaps in care during the transition from the ICU to a general ward. Nurses can play a crucial role in the need for continuity of care by proactively involving relatives during the care pathway of ICU patients.

Families' perspectives of participation in patient care in an adult intensive care unit: A qualitative study.

BACKGROUND: When a relative is admitted to the intensive care unit (ICU), stress, anxiety, and failure to cope may place families, and the patient, at risk for adverse psychological outcomes. Family participation in patient care may improve patient and family outcomes. However, to date, little is known about how families perceive and participate in patient care in ICU, and there is limited research to guide clinicians about supporting family participation in this context. OBJECTIVE: To describe family perspectives of participation in patient care in adult ICU. METHODS: Using a qualitative design, observation and interview data were collected from a convenience sample of 30 family members in the ICU at two metropolitan hospitals in Melbourne, Australia. An independent third party was used to recruit potential participants. Naturalistic observations and semi-structured interviews explored families' actions and perceptions of participation. Data were integrated and subject to thematic analyses. FINDINGS: The major theme Families as part of the healthcare team reflected family perspectives of their own significant contribution to supporting their relative's recovery while they were in ICU. Families' perception of their participation in patient care was characterised by three sub-themes: 1) Motivators for family participation; 2) Family roles during recovery; and 3) Influences on family participation. Families' perceived reassurance and companionship as important contributions to patient care. CONCLUSION: Families perceived their contribution to the patient's psychosocial and emotional well-being to be one of the most important aspects of participation. Nevertheless, their role in the healthcare team was influenced by several motivational factors. Results of this study can inform further research to test the effectiveness of clinical practice and educational interventions aligned with family preferences to promote participation and enhance patient and family-centered care in ICU.

Searching for meaning: A grounded theory of family resilience in adult ICU.

AIM: To explore families' experiences of their interactions in an Australian adult intensive care unit (ICU) to develop a grounded theory that can be used by critical care nurses to improve patient- and family-centred care (PFCC). BACKGROUND: Families in ICU play an important role in the patient's recovery and outcomes. However, families are at risk of significant psychological morbidity due to their experiences in ICU. Although many ICU patients can make their own decisions, a large proportion are unconscious or chemically sedated and unable to contribute to decisions about their care, leaving the decision-making role to the family. Therefore, the families' psychosocial and emotional well-being must be supported by implementing evidence-based interventions that align with a PFCC approach. This study describes the findings of a grounded theory of family resilience in ICU, of which the core category is Regaining control. The focus of this paper is on the major category: Searching for meaning. METHODS: We adopted a constructivist grounded theory method. Twenty-five adult family members (n = 25) of 21 patients admitted unexpectedly to an ICU in metropolitan Australia were recruited. In-depth interviews were used to collect the data, and the analytical processes of constructivist grounded theory underpinned the development of a core category and related subcategories. RESULTS: When adult family members experience the unexpected admission of a relative to ICU, they move towards a state of being beyond emotional adversity and regaining control when facilitated to search for meaning in their situation. When families were able to make sense of their situation and find a purpose by contributing to their relative's recovery, it encouraged them to cope and be resilient. CONCLUSIONS: Our findings can be used to promote PFCC in ICU, which considers a collaborative approach to meet the patient's needs while providing emotional and psychosocial support to their families.

Patient and family members' perceptions of family participation in care on acute care wards.

BACKGROUND: Hospital leaders, policymakers and healthcare professionals are realising the benefits of delivering care that promotes family participation because it is known to enhance the quality of care, and improve patient satisfaction. AIM: The aim of this study was to explore, from the perspective of patients and family members within an adult acute care ward: (a) their beliefs and attitudes towards family participation in patient care and (b) staff behaviours that support or hinder family participation in patient care. DESIGN AND METHODS: A naturalistic approach with an exploratory sequential design was used in a medical assessment and planning unit of a regional referral hospital in Australia. Purposeful maximum variation sampling was used to recruit patients and family members who differed in age, ethnicity, relationship to patient and gender. Observer-as-participant observation data and semi-structured interviews were undertaken. Following separate inductive content analysis, data were triangulated. RESULTS: Thirty-two patients and 26 family members were recruited. Thirty hours of observational data were gathered. Eighteen patients and 15 family members were interviewed. Analysis uncovered two contrasting categories: (a) disconnected communication and (b) family influence quality. CONCLUSION: The findings of our study demonstrated that most patients and families perceived staff communication as disconnected and inadequate, which constrained them from engaging in care processes or decision-making. However, when family felt empowered and participated in patient care, the quality of health care was enhanced. Healthcare professionals can use these findings to make informed evidence-based changes to the way they practice and communicate to ensure family participation in patient care is optimised in the acute care setting.

Family functioning in the context of an adult family member with illness: A concept analysis.

AIM: To describe and explain how the concept of family functioning has been used in the targeted sample of health literature on adult family members with illness. BACKGROUND: Understanding the influence of illness on family functioning is central to the provision of patient- and family-centred care. There is lack of consistency in utilising family functioning which creates confusion about the concept and can interfere with theory development in nursing science. A clear conceptual definition of attributes of family functioning based on concept analysis could act as a guide in the development of instruments to assess family functioning, the design of family-based interventions and their application in clinical practice. DESIGN: Concept analysis. DATA SOURCES: Academic Search Premier, ProQuest Research Library, Family & Society Studies Worldwide, PsycINFO, SocINDEX, PubMed and CINAHL databases were searched within the last 20 years (1997-Dec. 2016) using the terms "family function*" and "patient." Studies of paediatric patients and non-English articles were excluded. METHOD: Rodgers' evolutionary perspective. RESULTS: The findings suggest that family functioning in the context of illness is defined as family members' ability to maintain cohesive relationships with one another, fulfil family roles, cope with family problems, adjust to new family routines and procedures and effectively communicate with each other. CONCLUSION: Further research is needed to inform nurses' practice when assessing families or providing patient- and family-centred interventions to support family functioning across different sociocultural and political contexts, and further identification and evaluation of antecedents and consequences regarding family functioning from a nursing perspective. RELEVANCE TO CLINICAL PRACTICE: Having a comprehensive understanding of the attributes, antecedents and consequences of ineffective family functioning can facilitate healthcare providers' ability to identify strengths and potential targets to improve family functioning among their clients.

Patient- and family-centred care in the intensive care unit: a challenge in the daily practice of healthcare professionals.

AIMS AND OBJECTIVES: To evaluate the impact of supportive interventions perceived by both the intensive care unit patients' relatives and the healthcare providers, such as deferred intake interviews for providing information and discussing the emotional impacts, encouragement to keep a diary, and the introduction of weekly psychosocial rounds, on the perceptions of relatives of patients in the intensive care unit. BACKGROUND: Patient- and family-centred care is gaining interest, with a shift from provider-centric norms to care arranged around patients' and relatives individual beliefs and needs. This is expected to have a positive influence on the quality of care. Communication is one of the most important factors impacting the perceived quality of care in the intensive care unit from the perspective of patients' relatives. New interventions have been introduced to help the patients' relatives to meet their communication needs. DESIGN: A time-trend quantitative design. METHODS: Two convenience samples of relatives were included (in 2012 and 2013) in four different intensive care units from a large university medical centre in the Netherlands. RESULTS: Survey data from 211 relatives (75% net response rate in 2012) and 123 relatives (66% net response rate in 2013) were used for the analysis. The second measurement showed significant improvements regarding informational aspects of care, clarification of roles in participatory caretaking and shared decision-making. CONCLUSION: The results suggest that the additional support offered to patients' relatives increased perceived quality of care, particularly with respect to informational needs. However, patient- and family-centred care still requires a change in the mindset of healthcare professionals. This new point of view should overcome perceived barriers and foster a culture of partnership with patients' relatives in the intensive care unit. RELEVANCE TO CLINICAL PRACTICE: Training in providing psychosocial support for the needs of relatives leads to a stronger perception of patient-centredness.

The rhetoric of patient and family centred care: an institutional ethnography into what actually happens.

AIMS: This paper uses Dorothy Smith's institutional ethnography to examine technological advances designed to improve nurses' work. The analysis interrogates how nurses' work is coordinated, in disquieting ways, in an apparent commitment to 'patient and family centred care'. BACKGROUND: The discussion is part of a larger programme of research that focuses ethnographic attention on nurses' activating technological managerial improvement strategies. DESIGN: This discussion paper describes suboptimal hospital experiences to show how they were organized. The institutional ethnographic analysis addresses discrepancies that arise between the different organizational standpoints. Overall the discussion focuses on how institutional ethnographers enquire into people's everyday activities to discover and make understandable, in the material world, what actually happens that shapes them. DATA SOURCES: Data include observations and interviews with nurses, nurse managers, patients and families. It also includes screenshots of computer fields and other documents being used by nurses. IMPLICATIONS FOR NURSING: Nursing work is methodically being oriented to interests that undermine nurses' capacity to contribute their knowledgeable activity to intervene in people's health and well-being. CONCLUSION: Nurses' work is overwhelmed with the imperative to discharge patients. This happens with an ideological construction of patient centred care that obscures what is actually happening.

Impact of adult cochlear implantation on the partner relationship: a conceptual framework informed by cochlear implant recipient and partner perceptions.

PURPOSE: (1) To understand the impact of adult cochlear implantation on the partner relationship, as perceived by adult cochlear implant (CI) recipients and their intimate partners. (2) To generate a conceptual framework for guiding future research and clinical adult cochlear implantation interventions. METHOD: Concept mapping, a participatory, mixed-method approach, was used for data collection, analysis and interpretation. Participants attended sessions to generate, sort and rate statements describing the changes in their relationship due to cochlear implantation. Participants included 15 CI recipients (mean age: 51.6 years; SD: 8.2) and 12 partners (mean age: 50.9 years; SD: 8.2). RESULTS: Five concepts emerged from the data, describing changes in the partner relationship following cochlear implantation: (1) Social Interactions, (2) Partner Involvement, (3) Communication, (4) Emotional Adjustment, and (5) Relationship Intimacy. The concept Relationship Intimacy was rated the highest in positivity and importance. Findings also underscored improved social interactions, communication dynamics, and emotional adjustment. CONCLUSIONS: The Relationship Intimacy cluster emerged as pivotal, highlighting its essential role in improving post-implantation relationships. CI recipients experienced enhanced autonomy, while partners' roles evolved regarding assistance and support. The diverse effects of implantation on partner relationships highlight the importance of adopting a patient- and family-centered approach to audiological intervention.

These insights on partner relationships and cochlear implantation can inform tailored pre- and ongoing post-operative counselling to support cochlear implant recipients and their partners in navigating relationship changes, emotional adjustments, and addressing communication challenges.Cochlear implantation reduces partner burden, emphasising the need for hearing healthcare professionals to facilitate partner engagement in rehabilitation approaches.Relationship intimacy, deemed the foremost positive outcome, underscores the importance of incorporating these aspects into pre- and post-operative counselling.