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Background: The burden of severe mental illness is high in low-resource settings like Uganda. But most affected people are not treated due to inadequacy of sectoral funding and trained mental health professionals. Medication has hitherto been the main method of treatment for severe mental illness worldwide. However, there is a growing realization that the use of community-based resource-oriented interventions like the family involvement are more effective and suitable for under-resourced settings. But there is a paucity of information about its applicability in Uganda. Methods: We based the intervention at the mental health unit of Masaka Regional Referral Hospital, involving 30 patients with SMI, 60 family members and friends, and 6 mental health clinicians. It was delivered through regular monthly meetings of 5 patients, 10 caretakers, and 2 clinicians each, for six months. A purposive sample of 15 patients, 15 caretakers, and 6 clinicians participated in this qualitative evaluation study after 6 months. Data was collected using in-depth interviews. Atlas.Ti (version 7.0.82) computer software was used in data analysis. Both priori and grounded codes were used to code data. Results: We evaluated perceived feasibility, acceptability and impact of the intervention in the Ugandan context. The findings were largely positive. Feasibility was mainly driven by: the training of group facilitators, field support and supervision, prior relationship between participants, and scheduling and timing of meetings. Acceptability was supported by: anticipation of knowledge about mental illness, process and content of meetings, safety of meeting environment, and choice of participants and venue. Impact was majorly in domains of: knowledge about mental illness, psychosocial aspects of mental illness, networking and bonding, and patients' quality of life. The success of the intervention would further be enhanced by its decentralization and homogenized composition of groups. Conclusions: The intervention promises to spur improvement in the following main aspects of mental health services: accessibility since the meeting environment is more neutral and friendlier than the clinical setup; knowledge of mental illness; recognition of the important role of the family in management of mental illness; adoption of holistic approaches to mental illness; and quality of life of patients. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Eating disorders are associated with significant personal and family costs. Clinical guidelines recommend family members be involved and supported during care, but little has been reported regarding the preferences of adults around carer involvement in treatment. The necessary intensity of family work with adults is also unknown. A trial of a standardised brief family involvement method was conducted in an adult eating disorder service offering treatment-as-usual. Uptake and feasibility of implementing the approach as part of standard outpatient care and the preliminary impact on issues identified by adult patients and carers were evaluated. Methods: Eligible referrals at an adult eating disorders outpatient clinic were offered as needed family consultation to address presenting interpersonal problems identified by patients and their family members, and outcomes were evaluated 4 weeks later. Pre and post intervention surveys identified participant self-reported change in (i) problem frequency, (ii) distress and disruption caused, and (iii) confidence regarding presenting problems. Open text responses provided an overview of patient and carer goals for family involvement and revealed how the novel method impacted these areas as well as overall experience of, and feedback regarding, the brief family intervention. Results: Twenty-four female participants aged 18–53, and 22 carers participated in 31 consultations. Common concerns raised were eating disorder related interpersonal and communication issues. The focused sessions, offered on a one-at-a-time basis, showed preliminary effectiveness for reducing both patients and carer concerns. For example, adult patients reported that life interference from interpersonal problems was lower and confidence to deal with them was higher following family consultation. Carers also reported that frequency, level of worry, and life interference around presenting problems were lower after the structured family intervention. Conclusions: Brief family consultation, with a single focus on issues identified by family members and adult patients, was a safe and feasible procedure with adults affected by eating disorders. Effective at meeting the needs of participants, the framework investigated in the current study may also be a useful direction for adult services to consider when looking to support families and meet recommendations for their routine involvement in the outpatient care. Trial registration: Australian Clinical Trials Register number: ACTRN12621000047897 (www.anzctr.org.au). Plain English Summary: Eating disorders are serious problems that can have negative consequences for both the person affected and their family members. Research shows that family involvement can support treatment, but little is known about whether adults with eating disorders want their families involved or how much. This study asked if adding a brief family intervention to normal treatment would be safe, viable and effective. The uptake of, and impact from, a one-off family consultation was measured in 24 adult patients and 22 carers who identified the problems they were facing as a result of the eating disorder, how often these were happening, how worried they felt about them, and how much the issues were interfering in their life before and after the family session. Both the patients and carers reported change in these areas. Issues regarding the eating disorder and communication were the most common concerns of adult patients and carers. Feedback about the sessions was positive and one session was enough to address the immediate concerns for many families. Single session family consultation may be a promising option for services working with the families of adults affected by eating disorders to consider in the future. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: An open, non-controlled trial was conducted to explore the feasibility, experiences and outcomes of multi-family groups in community mental health care of patients with depression and anxiety. Methods: The study was conducted in community settings within the catchment area of a free of cost primary care center in Karachi, Pakistan. 30 patients with symptoms of depression and anxiety, their caregivers and 3 lay counsellors were recruited enrolled in the study between May–September 2019. Patients were enrolled for monthly multi-family group meetings conducted over 6 months in groups of 5–6 patients and 1–2 nominated caregivers each. Meetings were facilitated by the non-specialist trained counsellors. The primary outcome was quality of life (assessed using Manchester Short Assessment of Quality of Life) and secondary outcomes were symptoms of depression and anxiety (assessed on Aga Khan University Depression and Anxiety Scale), social outcomes (Social Outcome Index), and caregiver burden (Burden Assessment Scale). Change in all measures was assessed pre and 6-month post intervention using t-test. In-depth interviews were conducted with 7 patients, 7 caregivers and the 3 lay counsellors. Results: A total of 36 family intervention meetings were conducted with six groups with a total of 30 patients, 34 caregivers and 3 counsellors. Between baseline and the end of the intervention, subjective quality of life increased significantly from 3.34 to 4.58 (p < 0.001, 95% CI 0.93–1.54). Self-reported depression and anxiety scores reduced from 34.7 to 19.5 (p < 0.001, 95% CI 10.8–19.8) and the Social Outcome Index improved from 3.63 to 4.52 (p < 0.001, 95% CI 0.39–1.39). There was no change in family burden. Participants reported that the group meetings were seen as a safe space for shared learning, and that the experience helped improve self-regulation of emotions and behaviors and instilled a sense of belonging. Conclusion: Multi-family groups in community treatment of common mental health disorders facilitated by non-specialist mental health service providers is feasible, experienced positively and has the potential for large and positive effects on subjective quality of life, self-reported depression and anxiety, and objective social outcomes. Trial Registration: ISRCTN, ISRCTN12299326. Registered 05 June 2019. Retrospectively registered, https://doi.org/10.1186/ISRCTN12299326. [ABSTRACT FROM AUTHOR]

Background: Parents are integral in the treatment of pediatric eating disorders. The current study was conducted to further understand the barriers and facilitators that parents experience in accessing specialized, tertiary level eating disorder treatment for children and adolescents. The goals of the study were to understand the processes leading to diagnosis and treatment, perceived barriers and facilitators to accessing care, and parents' experiences over the course of their child's eating disorder treatment. Methods: Ten parents whose children were admitted to a Canadian tertiary level specialized pediatric eating disorders program took part in an exit interview upon their child's completion of treatment in the program. In-depth semi-structured interviews were combined with a visual timeline. Interpretive induction was performed to generate high-level concepts that emerged from the interviews. Results: Five high-level concepts were identified: (1) delays in identifying eating disorder symptoms, (2) challenges in accessing eating disorder services, (3) the right treatment at the right time, (4) emotional impact on parents, and (5) parental expertise and involvement. Conclusions: Several barriers were identified by parents that interfered with treatment, including system-related challenges when accessing specialized eating disorder treatment, concerns about a lack of appropriate mental health support for their child, and difficulties with transitioning between community and tertiary level care. Negative emotions, including guilt and self-blame, were common early in the treatment journey. Themes of parental involvement throughout treatment, and parents taking charge of their child's recovery, emerged across interviews. The results of this study suggest the importance of early identification of eating disorder symptoms, facilitating smoother transitions between levels of care (e.g., community services and hospital-based eating disorder care), and improving clinical decision-making to ensure children and adolescents with eating disorders receive the most appropriate treatment based on their clinical presentation. Plain English summary: Parents play a central role in pediatric eating disorder treatment. To further understand parents' experiences over the course of their child's eating disorder treatment, interviews were conducted with ten parents whose children were admitted to a specialized pediatric eating disorders program. Five major themes emerged across the interviews with parents: delays in identifying eating disorder symptoms, challenges with accessing eating disorders care, the right treatment at the right time, emotional impact on parents, and parental expertise and involvement. Parents shared several barriers that interfered with their child's treatment, including challenges with transitions between their home community and specialized eating disorder treatment. Parents also commonly spoke about guilt and self-blame when their child was first diagnosed with an eating disorder, though many parents felt relief and improved confidence after being connected with specialized eating disorder treatment. Research is needed to understand how to provide the right treatment at the right time for each child and adolescent with an eating disorder, to ultimately improve clinical care and reduce the barriers experienced by families. [ABSTRACT FROM AUTHOR]

Background: Family involvement for persons with psychotic disorders is supported by scientific evidence, as well as legal and ethical considerations, and recommended in clinical practice guidelines. This article reports a cross-sectional measurement of the level of implementation of such guidelines in fifteen community mental health centre units in Norway, and presents a novel fidelity scale to measure basic family involvement and support. The aim was to investigate current family involvement practices comprehensively, as a basis for targeted quality improvement. Methods: We employed three fidelity scales, with 12–14 items, to measure family involvement practices. Items were scored from 1 to 5, where 1 equals no implementation and 5 equals full implementation. Data was analysed using descriptive statistics, a non-parametric test, and calculation of interrater reliability for the scales. Results: The mean score was 2.33 on the fidelity scale measuring basic family involvement and support. Among patients with psychotic disorders, only 4% had received family psychoeducation. On the family psychoeducation fidelity assessment scale, measuring practice and content, the mean score was 2.78. Among the eight units who offered family psychoeducation, it was 4.34. On the general organizational index scale, measuring the organisation and implementation of family psychoeducation, the mean score was 1.78. Among the units who offered family psychoeducation, it was 2.46. As a measure of interrater reliability, the intra-class correlation coefficient was 0.99 for the basic family involvement and support scale, 0.93 for the family psychoeducation fidelity assessment scale and 0.96 for the general organizational index scale. Conclusions: The implementation level of the national guidelines on family involvement for persons with psychotic disorders was generally poor. The quality of family psychoeducation was high, but few patients had received this evidence-based treatment. Our novel fidelity scale shows promising psychometric properties and may prove a useful tool to improve the quality of health services. There is a need to increase the implementation of family involvement practices in Norway, to reach a larger percentage of patients and relatives. Trial registration: ClinicalTrials.gov Identifier NCT03869177. Registered 11.03.19. [ABSTRACT FROM AUTHOR]

Background: Family involvement for persons with psychotic disorders is under-implemented in mental health care, despite its firm scientific, economic, legal and moral basis. This appears to be the case in Norway, despite the presence of national guidelines providing both general recommendations on family involvement and support in the health- and care services, and specific guidance on family interventions for patients with psychotic disorders. The aim of this project is to improve mental health services and the psychosocial health of persons with psychotic disorders and their relatives, by implementing selected recommendations from the national guidelines in community mental health centres, and to evaluate this process.Methods: The trial is cluster randomised, where 14 outpatient clusters from community mental health centres undergo stratified randomisation with an allocation ratio of 1:1. The seven intervention clusters will receive implementation support for 18 months, whereas the control clusters will receive the same support after this implementation period. The intervention consists of: 1. A basic level of family involvement and support. 2. Family psychoeducation in single-family groups. 3. Training and guidance of health care personnel. 4. A family coordinator and 5. Other implementation measures. Fidelity to the intervention will be measured four times in the intervention arm and two times in the control arm, and the differences in fidelity changes between the arms constitute the primary outcomes. In each arm, we aim to include 161 patients with psychotic disorders and their closest relative to fill in questionnaires at inclusion, 6 months and 12 months, measuring psychosocial health and satisfaction with services. Clinicians will contribute clinical data about patients at inclusion and 12 months. Use of health and welfare services and work participation, for both patients and relatives, will be retrieved from national registries. We will also perform qualitative interviews with patients, relatives, health care personnel and leaders. Finally, we will conduct a cost-effectiveness analysis and a political economy analysis.Discussion: This project, with its multilevel and mixed methods approach, may contribute valuable knowledge to the fields of family involvement, mental health service research and implementation science.Trial Registration: ClinicalTrials.gov Identifier NCT03869177 . Registered 11.03.19. [ABSTRACT FROM AUTHOR]

Background: As older patients' health care needs become more complex, they often experience challenges with managing medications across transitions of care. Families play a major role in older patients' lives. To date, there has been no review of the role of families in older people's medication management at transitions of care. This systematic review aimed to examine family involvement in managing older patients' medications across transitions of care.Methods: Five databases were searched for quantitative, qualitative and mixed methods empirical studies involving families of patients aged 65 years and older: Cumulative Index to Nursing and Allied Health Literature Complete, Medline, the Cochrane Central Register of Controlled Trials, PsycINFO, and EMBASE. All authors participated independently in conducting data selection, extraction and quality assessment using the Mixed Methods Appraisal Tool. A descriptive synthesis and thematic analysis were undertaken of included papers.Results: Twenty-three papers were included, comprising 17 qualitative studies, 5 quantitative studies and one mixed methods study. Families participated in information giving and receiving, decision making, managing medication complexity, and supportive interventions in regard to managing medications for older patients across transitions of care. However, health professionals tended not to acknowledge the medication activities performed by families. While families actively engaged with older patients in strategies to ensure safe medication management, communication about medication plans of care across transitions tended to be haphazard and disorganised, and there was a lack of shared decision making between families and health professionals. In managing medication complexity across transitions of care, family members perceived a lack of tailoring of medication plans for patients' needs, and believed they had to display perseverance to have their views heard by health professionals.Conclusions: Greater efforts are needed by health professionals in strengthening involvement of families in medication management at transitions of care, through designated family meetings, clinical bedside handovers, ward rounds, and admission and discharge consultations. Future work is needed on evaluating targeted strategies relating to family members' contribution to managing medications at transitions of care, with outcomes directed on family understanding of medication changes and their input in preventing and identifying medication-related problems. [ABSTRACT FROM AUTHOR]

Background: Shared-housing arrangements (SHA) are a German type of small-scale living arrangements for people with dementia (PwD). The involvement of family members is one core domain of SHA. But it has not been investigated yet, what are factors associated with family visits and if family involvement within SHA contributes to better residents' quality of life (QoL). Method: A cross-sectional study including all SHA in Berlin/Germany was performed. Main parameters of interest were residents' QoL (QUALIDEM) and frequencies of family visits within the SHA. Besides descriptive analyses we used logistic regression and ANCOVA to analyze the data. Results: 58 SHA with 396 residents (78.4 years, 69.4% female) participated in the study. Older (OR: 1.034; 95% CI: 1.005; 1.064) and female residents (OR: 2.006; 95% CI: 1.018; 3.950) got more often visited by family members. An active participation of family members in SHA contributes on average to a better QoL in terms of social relationship and social isolation (all ANCOVA p < 0.005). A decreased QoL was found for people without family visits compared to those without family members. Conclusions: The involvement of family members in SHA is common but on a similar level compared to other care arrangements. Staff should convince available family members to visit PwD, in order to improve residents QoL. However, the response rate in the present study was about 13%, which may limit the results. [ABSTRACT FROM AUTHOR]

Background: This qualitative study addresses adolescents' perception of treatment for eating disorders. The importance of involving parents in treatment of young people with eating disorders, especially young people with Anorexia Nervosa, is emphasized in a number of studies. Even so, this form of treatment does not work for everybody, not even within a limited diagnostic group. Previous research has revealed that many young people are not entirely satisfied with their treatment. However, there is a lack of knowledge concerning the perspectives of adolescents in outpatient treatment, whose treatment often involves family. The aim of the present study was to investigate how young people with experience from adolescent outpatient treatment for eating disorders, involving family-based and individual based interventions, perceive their time in treatment., Methods: This study was conducted using a hermeneutic phenomenological approach. Fifteen participants were recruited in collaboration with four specialized eating disorder units and interviewed with the purpose to gather narratives., Results: The analysis revealed that the adolescents sometimes felt more or less forced into treatment, and strong ambivalent feelings about if and how to participate in treatment permeated the adolescents' narratives. The common factors which emerged in the narratives were assembled under the two major themes: Having to involve family in treatment - in one way or another and Making progress in treatment - a matter of trust., Conclusions: It is of great importance to involve family in treatment in order to understand the problems of the adolescents in their context and be able to take advantage of the resource that parents constitute. However, in certain situations, it is necessary to prioritise individual treatment interventions so that instead of sorting out difficult family situations the therapist focuses on enhancing the young people's resilience, thus enabling them to tackle problematic situations in life.