Continuous Quality Improvement: Utilizing a Novel Education Platform to Enhance Care for the Caregiver in the Neurosciences Intensive Care Unit.

Background: Timely patient and family communication is fundamental to the delivery of patient and family-centered care in the intensive care unit (ICU). However, repetitive, non-urgent communication with patients and designated patient contacts (DPCs) may lead to workflow disruptions, patient safety concerns and burnout. Implementing media-rich, educational content via a web-app could promote a more communication-friendly environment and reduce redundant communication. This may lower workflow disruptions and save time for more meaningful interactions with providers. The goal of this study was to deliver relevant, high-quality content via a web-app, assess time savings, and patient satisfaction with the web-app. Methods: A pre-implementation survey was distributed to Neurosciences intensive care unit (NSICU) staff to assess the burden of repetitive non-urgent communication and perceived duration of disruptions. Patients admitted to the NSICU from September 2022 to February 2023, n = 221 were included in the study. Patients were enrolled in the web-app. Patients and their DPC were granted access. Demographics including patient diagnosis, age, gender, and race were collected, along with data on weekly patient enrollment, number of DPCs granted access, total, frequency, and average view times of each piece of web-app content, and expected time saved due to review of web-app-based content by patient and/or DPCs to reduce repetitive communication by NSICU caregivers. The time saved for each piece of web-app content was calculated after getting feedback from providers (attendings, fellows, advanced practice providers, nurses) for how long it generally took them to convey each piece of information to patients and families. Results: Based on web-app content reviewed by patients and/or DPCs, the estimated average amount of NSICU caregiver time saved over the study period, based on application content views, was 82 min per week, and the cumulative total provider time saved for all content views was 26 h and 53 min. Twenty-one of 59 applications were rated by patients or their DPC and received five-star reviews (out of 5). Conclusion: The implementation of a web-app to facilitate and increase efficiency in communication leads to time savings for NSICU providers and patient/DPC satisfaction with the media-rich educational content.

Fostering a Trusting Relationship With Family in Dementia Special Care Units: A Participatory Action Research Project.

AIM: To explore experiences of nursing home staff in implementing self-designed interventions to foster trusting relationships with family in practice. DESIGN: This qualitative study used a Participatory Action Research approach. METHODS: Data collection included focus groups (n = 15), interviews (n = 28) and observations (n = 5). A holistic narrative approach was used for data analysis, resulting in co-constructed narratives representing experiences of nursing home staff in implementing four different interventions in five Dutch dementia special care units in nursing homes. The data collection period began in August 2021 and ended in April 2022. RESULTS: Nursing home staff implemented self-designed interventions to foster trusting relationships with family, including initiating informal conversations, sharing residents' 'happy' moments, discussing mutual expectations, and being more aware of families' emotional burdens. Identified facilitators emphasise the importance of reciprocity, familiarity, transparency, realistic goal setting and empathy. Identified barriers are related to moral uncertainty in balancing competing demands, conflicting social norms, prioritising hands-on care tasks over family contact and lack of courage to act. CONCLUSION: Nursing home staff conclude that their interventions contribute positively to building and maintaining a trusting relationship with families. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Sharing the narratives of nursing home staff with peers would support them in implementing interventions to foster trust. Regular Moral Case Deliberations can be used to address moral uncertainty. Collective dialogue among nursing home staff can be useful in establishing new social norms that prioritise family involvement. Conversation skills training can empower nursing home staff. IMPACT: Trust between nursing home staff and families can be improved by implementing the conducted interventions. REPORTING METHOD: This report adheres to the standards for reporting qualitative research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Family involvement in dementia special care units in nursing homes: A qualitative care ethical study into family experiences.

AIM: To explore the moral dimension of family experiences with being involved in the care of their loved one with dementia in the nursing home, using the care ethical framework of Tronto. DESIGN: This qualitative study used a care ethical approach in which empirical data and care ethical theory were dialectically related and mutually informing. METHODS: Fifteen close family members of nursing home residents with dementia were interviewed between February 2020 and October 2020. Forty-two interviews were conducted, based on a semi-structured open-ended design. A thematic narrative approach combined with the five phases of care as defined by Tronto was used to analyse the empirical data. Subsequently, Tronto's identified ethical qualities were used to identify the moral dimension of these empirical findings. RESULTS: We found that in the care process (1) family can find it difficult to recognize their loved one's care needs; (2) both family and staff are reluctant to discuss the allocation of responsibilities with each other; (3) family sometimes feels insecure when it comes to connecting with their loved one; (4) family is often reluctant to provide feedback to staff when they are critical about the care that has been given; and (5) family is generally mild in judging staff, due to staff shortages. The care ethical interpretation of these findings showed that the moral qualities of attentiveness, responsibility, competence, responsiveness, and solidarity are under pressure to a certain extent. CONCLUSION: Family experiences moral distress during the care process, which hinders family involvement in nursing homes for people with dementia. IMPACT: Nursing home staff can look for and pilot strategies focused on supporting families to act more in accordance with the moral qualities that are under pressure. This can improve family involvement in practice. PATIENT OR PUBLIC CONTRIBUTION: No Patient/Public Contribution. IMPLICATIONS FOR PRACTICE/POLICY: Nursing home staff paying more attention to families' emotional struggles related to the decline of their loved one, could help families to be more attentive to noticing true care needs of the resident. Both family and nursing home staff should take more often initiatives to evaluate the division of care responsibilities with each other. Nursing home staff should help family connect with their loved one during their visits if they experience difficulties in doing so. Nursing home staff taking more often initiatives to contact family and ask them how they perceive the care for their loved one, can positively affect the responsiveness of both family and staff. It would be helpful if nursing home management could ensure the presence of sufficient and qualified staff so that the first four phases of the care process are not hindered by the lack of staff.

Factors affecting family-centered care practice by nurses: A systematic review.

PURPOSE: This study presents a systematic review of the obstacles to and enablers of family-centered care (FCC) implementation by nurses. FCC, which has demonstrated beneficial outcomes, is regarded as a crucial quality measure in certain pediatric units. However, not all nurses incorporate FCC into their practice. DESIGN AND METHODS: A systematic review was conducted from January to June 2023, adhering to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Various medical subject heading keywords and terms were used to search electronic databases, with the aim of synthesizing and evaluating the results. RESULTS: Twenty-three articles were identified for review. Most of these studies were carried out in Western countries. They revealed several facilitators and obstacles to FCC implementation by nurses when caring for sick children. Some of these factors are linked to the personal attributes of the nurses, while others are associated with the characteristics of the families and the healthcare system itself. CONCLUSION: Nurses face multi-level barriers that hinder their ability to implement FCC practice. This systematic review identifies the need to leverage nurses' attributes, foster effective nurse-client relationships, and promote organizational changes. PRACTICE IMPLICATIONS: Nurses need to comprehend and work toward altering the factors that influence the delivery of FCC. The findings of this review can be used by healthcare organization leaders and policymakers to customize interventions and allocate resources to promote FCC practice. Further research in diverse cultural contexts is needed to examine the cause-and-effect relationship concerning the influence of the identified barriers and facilitators on FCC practice. In addition, experimental studies are required to evaluate the effectiveness of evidence-based interventions on FCC practice by nurses.

Frontline nurses' experiences of managing visitor restrictions during the COVID-19 pandemic in a Danish university hospital - Lessons learned.

BACKGROUND: Worldwide visitor restrictions forced nurses to separate patients from their relatives. However, the experience of implementing shifting restrictions from the frontline nurses' perspectives in a Danish context has yet to be assessed. AIM: The aim of this descriptive qualitative study was to explore frontline nurses' experiences of managing shifting visitor restrictions in a Danish somatic university hospital during the COVID-19 pandemic. METHODS: An online questionnaire, including open-ended questions, was developed. Data were analysed using descriptive statistics and content analysis. FINDINGS: 116 nurses from 29 departments participated; they were informed about restrictions primarily by their charge nurses and hospital intranet. Shifting visitor restrictions compelled the nurses to constantly adjust and negotiate their practices. When deciding to suggest deviating from the restrictions, they shared their decision-making with colleagues. Visitor restrictions left the hospital environment quieter, but they also created a lack of overview and predictability, an emotional burden, and a negative impact on the quality of care. CONCLUSION: Restricting relatives' access challenged the nurses' professional values, and it seems to have affirmed their appreciation of relatives' role as important partners in contemporary hospital-based health care.

Influence of performance feedback and academic performance on parent-family involvement and parent satisfaction in US schools.

Parental and family involvement in schools has been a concern for educators and administrators. The authors set out to assess the path directions and significance of the interrelationships between Performance Feedback (PF), Academic Performance (AP) on Parent-Family Involvement (PFI), and Parent Satisfaction (PS) in schools. This study utilizes data from the PFI in Education Survey 2019 under the National Household Education Surveys program done by the US Department of Education. The sample for this research is 954 parents. Structural equation modeling was employed using AMOS. Results establish the three research propositions: influence of PFI on PS with the mediation of AP and PF, influence of AP on PS is moderated by PF, influence of AP on PFI is moderated by PF. The findings are important for school administrators and all stakeholders for ensuring greater PFI, improved PF and AP of students, and higher PS. This study is unique in assessing the interactional effects of the variables considered. The study also establishes mediating and moderating influences and offers new insights in understanding the influences on PFI and PS and some bidirectional effects.

Complexity and function of family involvement in advance care planning: A qualitative study of perspectives from people living with advanced cancer, family members and healthcare professionals.

BACKGROUND: Family members can support advance care planning conversations. However, how family involvement in advance care planning operates to achieve goal-concordant care remains unclear. AIM: To explore how family involvement impacts the process of advance care planning for advanced cancer patients and their family members to achieve goal-concordant care in Japan. DESIGN: Qualitative study incorporating semi-structured in-depth interviews with thematic analysis informed by Family Systems Theory. SETTING/PARTICIPANTS: Medical oncology departments at two tertiary hospitals in Japan. A purposive sample of 13 advanced cancer patients, 10 family members and 9 healthcare professionals who cared for them. RESULTS: Twenty-five interviews were conducted, comprising 7 dyads of patients and their family members and 18 individual interviews. Four themes were identified: characteristics of patients and family members and their views on illness and advance care planning; family context and communication; interactions with healthcare professionals and societal and cultural influences; and family members' acceptance, preparation and confidence. Family involvement was observed as being variable at an individual level and also across generations. Family members provided patients with the instrumental and emotional support that facilitated the advance care planning process. Family involvement enabled family members to better prepare for realising patients' wishes. It increased family members' confidence in surrogate decision-making. CONCLUSIONS: Two mechanisms of how family involvement may enable goal-concordant care were identified: family members' support provision and their preparation for realising patients' wishes. Healthcare professionals should assess family's readiness to engage in advance care planning, and the time required to prepare them for the process.

Depression in nursing home residents and its correlation with meaning of family involvement and depression of family.

OBJECTIVES: This study aimed to investigate the relationship between depression in older nursing home residents and family caregivers' (FCGs) depressive status and reasons for involvement with residents. DESIGN: This study employed a cross-sectional design. SETTING: Eight nursing homes in northern Taiwan. PARTICIPANTS: A total of 139 older resident-FCG pairs were recruited. MEASUREMENTS: Depression was measured with the Geriatric Depression Scale-Short Form for nursing home residents and the Center for Epidemiologic Studies Depression Scale-Short Form for family members. Depression and demographic data were collected with face-to-face interviews. The meaning ascribed to caregivers' nursing home visits was calibrated using the Family Meaning of Nursing-Home Visits scale. Multiple logistic regression was used to understand the factors related to residents' depressive symptoms. RESULTS: Depressive symptoms were present in 58.3% of the nursing home residents (n = 81). Depressive status of family members (Chi-square = 1.46, p = 0.23) or family's visiting frequency (Chi-square = 1.64, p = 0.44) did not differ between residents with or without depressive symptoms. Factors associated with an increased risk of residents having depressive symptoms were age, self-perceived health status, and having a caregiver motivated to visit to assuage their guilt. CONCLUSIONS: Visiting a family member to assuage their guilt was the only caregiver variable associated with depressive symptoms for nursing home residents. This finding suggests that developing interventions to improve personal relationships between nursing home residents and family members might facilitate the emotional support of caregivers and psychological support for older nursing home residents in Taiwan.

Strengthening open disclosure after incidents in maternity care: a realist synthesis of international research evidence.

BACKGROUND: Open Disclosure (OD) is open and timely communication about harmful events arising from health care with those affected. It is an entitlement of service-users and an aspect of their recovery, as well as an important dimension of service safety improvement. Recently, OD in maternity care in the English National Health Service has become a pressing public issue, with policymakers promoting multiple interventions to manage the financial and reputational costs of communication failures. There is limited research to understand how OD works and its effects in different contexts. METHODS: Realist literature screening, data extraction, and retroductive theorisation involving two advisory stakeholder groups. Data relevant to families, clinicians, and services were mapped to theorise the relationships between contexts, mechanisms, and outcomes. From these maps, key aspects for successful OD were identified. RESULTS: After realist quality appraisal, 38 documents were included in the synthesis (22 academic, 2 training guidance, and 14 policy report). 135 explanatory accounts were identified from the included documents (with n = 41 relevant to families; n = 37 relevant to staff; and n = 37 relevant to services). These were theorised as five key mechanism sets: (a) meaningful acknowledgement of harm, (b) opportunity for family involvement in reviews and investigations, (c) possibilities for families and staff to make sense of what happened, (d) specialist skills and psychological safety of clinicians, and (e) families and staff knowing that improvements are happening. Three key contextual factors were identified: (a) the configuration of the incident (how and when identified and classified as more or less severe); (b) national or state drivers, such as polices, regulations, and schemes, designed to promote OD; and (c) the organisational context within which these these drivers are recieived and negotiated. CONCLUSIONS: This is the first review to theorise how OD works, for whom, in what circumstances, and why. We identify and examine from the secondary data the five key mechanisms for successful OD and the three contextual factors that influence this. The next study stage will use interview and ethnographic data to test, deepen, or overturn our five hypothesised programme theories to explain what is required to strengthen OD in maternity services.

Implementation of Guidelines on Family Involvement for Persons with Psychotic Disorders (IFIP): A Cluster Randomised Controlled Trial.

Family involvement is part of the evidence-based treatment for persons with psychotic disorders, yet is under-implemented despite guideline recommendations. This study assessed whether an implementation support programme increased the adherence to guidelines on family involvement, compared to guideline/manual only. In a cluster randomised design, community mental health centre units in South-East Norway went through stratified allocation to the experimental (n = 7) or control (n = 7) arm. Experimental clusters received an implementation support programme including clinical training and supervision, appointing a family coordinator and an implementation team, a toolkit, and fidelity measurements at baseline, 12, 18, and 24 months with on-site feedback and supervision. Control clusters received no such support and had fidelity measurements at baseline and 24 months without feedback. During fidelity measurements, adherence to the guidelines was measured with the basic family involvement and support scale, the general organizational index, and the family psychoeducation fidelity scale, the latter being the primary outcome. The scales consist of 12-14 items rated from 1 to 5. Data was analysed with an independent samples t-test, linear mixed models, and a tobit regression model. At 24 months, the mean scores were 4.00 or higher on all scales in the experimental arm, and the increase in adherence to the guidelines was significantly greater than in the control arm with p-values < 0.001. Large-scale implementation of guidelines on family involvement for persons with psychotic disorders in community mental health centres may be accomplished, with substantial implementation support.Trial Registration: ClinicalTrials.gov Identifier NCT03869177. Registered 11.03.19.

Mental health service users' experiences and perspectives of family involvement in their care: a systematic literature review.

BACKGROUND: The importance of engaging families in mental health care is recognised and endorsed by governments worldwide, however service users' perspectives of family involvement are not well understood. AIMS: This study sought to summarise the literature regarding how service users view the involvement of family in their engagement with services and care. METHODS: A search was conducted within the following databases for manuscripts published in the last 10 years: PsycINFO, CINAHLPlus, PubMed and Scopus. Of the 4251 eligible papers 17 met the inclusion criteria for review and were subjected to quality appraisal using the RATS (relevance, appropriateness, transparency, soundness) qualitative research review guidelines. RESULTS: Thematic analysis identified four primary themes: family involvement can be positive and negative; barriers to family involvement; family involvement is variable; and communication and collaboration among stakeholders. CONCLUSIONS: Identifying the barriers to family involvement and heterogeneity among service users' views were key findings of this review. Despite the widely reported benefits of including families in mental health care it does not always occur. A clearer and more nuanced understanding of service users' needs and preferences for family involvement is required.

Systemic safety inequities for people with learning disabilities: a qualitative integrative analysis of the experiences of English health and social care for people with learning disabilities, their families and carers.

BACKGROUND: Failures in care for people with learning disabilities have been repeatedly highlighted and remain an international issue, exemplified by a disparity in premature death due to poor quality and unsafe care. This needs urgent attention. Therefore, the aim of the study was to understand the care experiences of people with learning disabilities, and explore the potential patient safety issues they, their carers and families raised. METHODS: Two data sources exploring the lived experience of care for people with learning disabilities were synthesised using an integrative approach, and explored using reflexive thematic analysis. This comprised two focus groups with a total of 13 people with learning disabilities and supportive staff, and 377 narratives posted publicly via the feedback platform Care Opinion. RESULTS: The qualitative exploration highlighted three key themes. Firstly, health and social care systems operated with varying levels of rigidity. This contributed to an inability to effectively cater to; complex and individualised care needs, written and verbal communication needs and needs for adequate time and space. Secondly, there were various gaps and traps within systems for this population. This highlighted the importance of care continuity, interoperability and attending to the variation in support provision from professionals. Finally, essential 'dependency work' was reliant upon social capital and fulfilled by paid and unpaid caring roles to divergent extents, however, advocacy provided an additional supportive safety net. CONCLUSIONS: A series of safety inequities have been identified for people with learning disabilities, alongside potential protective buffers. These include; access to social support and advocacy, a malleable system able to accommodate for individualised care and communication needs, adequate staffing levels, sufficient learning disabilities expertise within and between care settings, and the interoperability of safety initiatives. In order to attend to the safety inequities for this population, these factors need to be considered at a policy and organisational level, spanning across health and social care systems. Findings have wide ranging implications for those with learning disabilities, their carers and families and health and social care providers, with the potential for international learning more widely.

Involvement of adult children in treatment decision-making for older patients with cancer - a qualitative study of perceptions and experiences of oncology surgeons and nurses.

BACKGROUND: Many older patients with cancer have their family members, often their adult children, involved in a process of treatment decision-making. Despite the growing awareness that family members can facilitate a process of shared decision-making, strategies for involving family members are scarce. Furthermore, literature about shared decision-making pays little attention to family involvement or to the impact that family relations have on the decision process. The purpose of this study was to explore how surgeons and nurses perceive the involvement of adult children of older patients with cancer in treatment decision-making. Subsequently, it identified strategies to ensure family involvement in the decision-making process, used in clinical practice. METHODS: Qualitative open in-depth interviews were conducted with 13 surgeons and 13 nurses working in a university or general hospital. Qualitative content analysis was conducted according to the steps of thematic analysis. RESULTS: Both nurses and surgeons indicated that adult children's involvement in decision-making about treatment increases when patients become frail. They mentioned several characteristics of adult children's behaviour during the decision-making process. Most of these characteristics are beneficial, but they also can be challenging. The distinct nature of adult children's involvement can help older patients with cancer reach better-informed treatment decisions. Health professionals reported six strategies to support positive family involvement in decision-making about treatment. CONCLUSION: Adult children may facilitate a process of shared decision-making and help patients reach well-informed treatment decisions. Health professionals' strategies deliberately support positive family involvement.

The duty of confidentiality during family involvement: ethical challenges and possible solutions in the treatment of persons with psychotic disorders.

BACKGROUND: Family involvement during severe mental illness is still poorly implemented, contrary to evidence-based recommendations. Confidentiality issues are among the most prominent barriers, with mental health professionals facing complex ethical, legal, and practical challenges. However, research focusing on this barrier is very sparse. Nested within a cluster-randomised trial to implement guidelines on family involvement for persons with psychotic disorders in community mental health centres, the aim of this sub-study was to explore ethical challenges related to the duty of confidentiality as experienced by mental health professionals, and to explore key measures that might contribute to improving the handling of such challenges. METHODS: In total 75 participants participated in 21 semi-structured focus groups, including implementation team members at the initial and late phase of the intervention period and clinicians who were not on the implementation teams, at late phase of implementation. We used purposive sampling and manifest content analysis to explore participants' experiences and change processes. RESULTS: Ethical challenges related to the duty of confidentiality included 1) Uncertainty in how to apply the legislation, 2) Patient autonomy versus a less strict interpretation of the duty of confidentiality, 3) Patient alliance and beneficence versus a less strict interpretation of the duty of confidentiality, 4) How to deal with uncertainty regarding what relatives know about the patients' illness, and 5) Relatives' interests versus the duty of confidentiality. Measures to facilitate better handling of the duty of confidentiality included 1) Training and practice in family involvement, and 2) Standardisation of family involvement practices. CONCLUSION: When health professionals gained competence in and positive experiences with family involvement, this led to vital changes in how they interpreted and practiced the duty of confidentiality in their ethical reasoning and in clinical practice. Especially, the need to provide sufficient information to the patients about family involvement became evident during the study. To improve the handling of confidentiality issues, professionals should receive training in family involvement and confidentiality statutes followed by practice. Furthermore, family involvement should be standardised, and confidentiality guidelines should be implemented in the mental health services. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT03869177. Registered 11.03.19.

Common patient experiences across three resource-oriented interventions for severe mental illness: a qualitative study in low-resource settings.

INTRODUCTION: Resource-oriented interventions can be a low-cost option to improve care for patients with severe mental illnesses in low-resource settings. From 2018 to 2021 we conducted three randomized controlled trials testing resource-oriented interventions in Bosnia and Herzegovina (B&H), i.e. befriending through volunteers, multi-family groups, and improving patient-clinician meetings using the DIALOG+ intervention. All interventions were applied over 6 months and showed significant benefits for patients' quality of life, social functioning, and symptom levels. In this study, we explore whether patient experiences point to common processes in these interventions. METHODS: In-depth semi-structured interviews were conducted with 15 patients from each intervention, resulting in a total sample of 45 patients. Patients were purposively selected at the end of the interventions including patients with different levels of engagement and different outcomes. Interviews explored the experiences of patients and were audio-recorded, transcribed, and analysed using the thematic analysis framework proposed by Braun and Clark. RESULTS: Three broad themes captured the overall experiences of patients receiving resource-oriented interventions: An increased confidence and agency in the treatment process; A new and unexpected experience in treatment; Concerns about the sustainability of the interventions. CONCLUSIONS: The findings suggest that the three interventions - although focusing on different relationships of the patients - lead to similar beneficial experiences. In addition to being novel in the context of the mental health care system in B&H, they empower patients to take a more active and confident role in treatment. Whilst strengthening patients' agency in their treatment may be seen as a value in itself, it may also help to achieve significantly improved treatment outcomes. This shows promise for the implementation of these interventions in other low-resource countries with similar settings.

Attitudes of European students towards family decision-making and the harmonisation of consent systems in deceased organ donation: a cross-national survey.

BACKGROUND: European countries are increasingly harmonising their organ donation and transplantation policies. Although a growing number of nations are moving to presumed consent to deceased organ donation, no attempts have been made to harmonise policies on individual consent and the role of the family in the decision-making process. Little is known about public awareness of and attitudes towards the role of the family in their own country and European harmonisation on these health policy dimensions. To improve understanding of these issues, we examined what university students think about the role of the family in decision-making in deceased organ donation and about harmonising consent policies within Europe. METHODS: Using LimeSurvey© software, we conducted a comparative cross-sectional international survey of 2193 university students of health sciences and humanities/social sciences from Austria (339), Belgium (439), Denmark (230), Germany (424), Greece (159), Romania (190), Slovenia (190), and Spain (222). RESULTS: Participants from opt-in countries may have a better awareness of the family's legal role than those from opt-out countries. Most respondents opposed the family veto, but they were more ambivalent towards the role of the family as a surrogate decision-maker. The majority of participants were satisfied with the family's legal role. However, those who were unsatisfied preferred to limit family involvement. Overall, participants were opposed to the idea of national sovereignty over consent policies. They favoured an opt-out policy harmonisation and were divided over opt-in. Their views on harmonisation of family involvement were consistent with their personal preferences. CONCLUSIONS: There is overall division on whether families should have a surrogate role, and substantial opposition to granting them sole authority over decision-making. If European countries were to harmonise their policies on consent for organ donation, an opt-out system that grants families a surrogate decision-making role may enjoy the widest public support.

The influence of emotion regulation and family involvement on diabetes distress among adults with type 2 diabetes.

Adults with diabetes frequently experience diabetes related distress, which is associated with negative health outcomes. Family members are commonly involved in patients' diabetes self-management. However, family involvement can have helpful and/or harmful effects on patients' diabetes outcomes. Use of interpersonal strategies to regulate negative emotions may play a role in patients' interactions with family members and experience of diabetes distress. This study examined the influences of interpersonal emotion regulation and family and friend involvement on diabetes distress among 373 adults with type 2 diabetes. Two separate three-step sequential linear regression models were used to test the main and interactive effects of harmful and helpful family involvement and interpersonal emotion regulation on diabetes distress. Greater use of interpersonal strategies to regulate negative emotions (p = .006) and greater harmful family involvement (p < .001) were significantly associated with greater diabetes distress. Interpersonal emotion regulation moderated the relationship of helpful (p = .007), but not harmful (p = .171) family involvement on diabetes distress. Specifically, greater helpful family involvement was associated with lower diabetes distress among adults with low (p = .017) but not high (p = .419) use of interpersonal strategies to regulate negative emotions. Helpful family involvement appears to be associated with lower diabetes distress, but only among patients with low levels of interpersonal emotion regulation.

Barriers and facilitators when implementing family involvement for persons with psychotic disorders in community mental health centres - a nested qualitative study.

BACKGROUND: The uptake of family involvement in health care services for patients with psychotic disorders is poor, despite a clear evidence base, socio-economic and moral justifications, policy, and guideline recommendations. To respond to this knowledge-practice gap, we established the cluster randomised controlled trial: Implementation of guidelines on Family Involvement for persons with Psychotic disorders in community mental health centres (IFIP). Nested in the IFIP trial, this sub-study aims to explore what organisational and clinical barriers and facilitators local implementation teams and clinicians experience when implementing family involvement in mental health care for persons with psychotic disorders. METHODS: We performed 21 semi-structured focus groups, including 75 participants in total. Implementation team members were interviewed at the initial and middle phases of the intervention period, while clinicians who were not in the implementation team were interviewed in the late phase. A purposive sampling approach was used to recruit participants with various engagement in the implementation process. Data were analysed using manifest content analysis. RESULTS: Organisational barriers to involvement included: 1) Lack of shared knowledge, perceptions, and practice 2) Lack of routines 3) Lack of resources and logistics. Clinical barriers included: 4) Patient-related factors 5) Relative-related factors 6) Provider-related factors. Organisational facilitators for involvement included: 1) Whole-ward approach 2) Appointed and dedicated roles 3) Standardisation and routines. Clinical facilitators included: 4) External implementation support 5) Understanding, skills, and self-efficacy among mental health professionals 6) Awareness and attitudes among mental health professionals. CONCLUSIONS: Implementing family involvement in health care services for persons with psychotic disorders is possible through a whole-ward and multi-level approach, ensured by organisational- and leadership commitment. Providing training in family psychoeducation to all staff, establishing routines to offer a basic level of family involvement to all patients, and ensuring that clinicians get experience with family involvement, reduce or dissolve core barriers. Having access to external implementation support appears decisive to initiate, promote and evaluate implementation. Our findings also point to future policy, practice and implementation developments to offer adequate treatment and support to all patients with severe mental illness and their families. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT03869177. Registered 11.03.19.

What older people and their relatives say is important during acute hospitalisation: a qualitative study.

BACKGROUND: Due to the growing population of older people across the world, providing safe and effective care is an increasing concern. Older persons in need for hospitalisation often have, or are susceptible to develop, cognitive impairment. Hospitals need to adapt to ensure high-quality care for this vulnerable patient group. Several age-friendly frameworks and models aiming at reducing risks and complications have been promoted. However, care for older people must be based on the persons' reported needs, and relatives are often an important part of older persons' social support. The primary aim of this study was to explore older peoples' and their relatives' experiences of acute hospitalisation and determine what is important for them to experience a good hospital stay. The study was not limited to patients with cognitive impairment; but included a wider group of older individuals vulnerable to developing delirium, with or without an underlying chronic cognitive impairment. METHODS: This study had a qualitative research design in which people aged 75 years or older and their relatives were interviewed during an acute hospitalisation. The study was conducted at two medical wards at a large university hospital in Norway, and included a total of 60 participants. All interviews were informed by a semi-structured interview guide and were thematically analysed. RESULTS: Four major themes were identified in the older people's and the relatives' descriptions of how they experienced the hospital stay and what was important for them during the hospital stay: being seen and valued as a person, individualised care, patient-adapted communication and information, and collaboration with relatives. The themes span both positive and negative experiences, reflecting great variability in the experiences described. The presence of these four characteristics promoted positive experiences among patients and relatives, whereas the absence or negative valuation of them promoted negative experiences. CONCLUSIONS: The findings underscore the interrelatedness of older people and their relatives and that patients and relatives are quite consistent in their experiences and opinions. This suggests that listening to the concerns of relatives is important, as they can voice the older patient's needs and concerns in situations where older people might find it difficult to do so. Furthermore, the results underscore how 'small things' matter in relation to how health professionals capture the patient's individual values, need for care, information and involvement of relatives and that these are essential to ensure predictability and security and a good stay for older people and their relatives.

What does family involvement in care provision look like across hospital settings in Bangladesh, Indonesia, and South Korea?

BACKGROUND: Family members provide care whilst staying in the patient's room across a range of cultural settings, irrespective of resource availability in many Asian countries. This has been reported as a contributing factor to the spread of several outbreaks, including COVID-19. Despite these reports, very little is known about the risk of healthcare-associated infection (HAI) transmission related to the involvement of family and private carers in the clinical setting. As a starting point to understanding this issue, this study aimed to provide insights regarding the patient care activities undertaken by family and private carers and the guidance provided to these carers around infection control measures in hospitals located in Bangladesh, Indonesia, and South Korea. METHOD: A qualitative study involving 57 semi-structured interviews was undertaken in five tertiary level hospitals across the selected countries. Two groups of individuals were interviewed: (1) patients and their family carers and private carers; and (2) healthcare workers, including doctors, nurses, hospital managers and staff members. Drawing upon the principles of grounded theory, an inductive approach to data analysis using thematic analysis was adopted. RESULTS: Five main themes were generated from the analysis of the data: (1) expectation of family carers staying with a patient; (2) residing in the patient's environment: (3) caring activities undertaken by family carers; (4) supporting and educating family carers and (5) communication around healthcare-associated infection and infection prevention and control. CONCLUSION: Based on the types of activities being undertaken, coupled with the length of time family and private carers are residing within the clinical setting, coupled with an apparent lack of guidance being given around IPC, more needs to be done to ensure that these carers are not being inadvertently exposed to HAI's or other occupational risks.