Post-diagnostic support for persons with young-onset dementia - a retrospective analysis based on data from the Swedish dementia registry SveDem.

BACKGROUND: Approximately 3.9 million persons worldwide have young-onset dementia. Symptoms related to young-onset dementia present distinct challenges related to finances, employment, and family. To provide tailored support, it is important to gain knowledge about the formal support available for persons with young-onset dementia. Therefore, this paper aims to describe formal support for persons with young-onset dementia in Sweden and the factors influencing this support. METHODS: This retrospective study used data on persons under 65 years of age (n = 284) from The Swedish Registry for Cognitive/Dementia Disorders (SveDem) between 2021 and 2022. SveDem was established to monitor the quality of dementia care in Sweden. Characteristics of participants were obtained, including age, sex, dementia diagnosis, MMSE, medications, accommodation, and care setting. Descriptive statistics and logistic regression were used to test for associations between participant characteristics and post-diagnostic support. RESULTS: Information and educational support were usually offered to the person with young-onset dementia (90.1%) and their family (78.9%). Approximately half of the sample were offered contact with a dementia nurse (49.3%), counsellor (51.4%), or needs assessor (47.9%). A minority (28.5%) were offered cognitive aids. Six regression models were conducted based on participant characteristics to predict the likelihood that persons were offered support. Support was not predicted by age, sex, children at home, accommodation, or medications. Lower MMSE scores (p < .05) and home help (p < .05) were significantly associated with offer of a needs assessor. Living together was a significant predictor (p < .01) for information and educational support offered to the family. Care setting significantly predicted (p < .01) an offer of information and educational support for the person and family members, as well as contact with a counsellor. CONCLUSION: This study indicates potential formal support shortages for persons with young-onset dementia in some areas of dementia care. Despite equal support across most characteristics, disparities based on care setting highlight the importance of specialised dementia care. Pre-diagnostic support is minimal, indicating challenges for persons with young-onset dementia to access these services before diagnosis. While our study has identified areas in need of improvement, we recommend further research to understand the changing support needs of those with young-onset dementia.

Exploration of clinical ethics consultation in Uganda: a case study of Uganda Cancer Institute.

INTRODUCTION: Globally, healthcare providers (HCPs), hospital administrators, patients and their caretakers are increasingly confronted with complex moral, social, cultural, ethical, and legal dilemmas during clinical care. In high-income countries (HICs), formal and informal clinical ethics support services (CESSs) have been used to resolve bioethical conflicts among HCPs, patients, and their families. There is limited evidence about mechanisms used to resolve these issues as well as experiences and perspectives of the stakeholders that utilize them in most African countries including Uganda. METHODS: This phenomenological qualitative study utilized in-depth interviews (IDIs) and focus group discussions (FGDs) to collect data from Uganda Cancer Institute (UCI) staff, patients, and caretakers who were purposively selected. Data was analyzed deductively and inductively yielding themes and sub-themes that were used to develop a codebook. RESULTS: The study revealed there was no formal committee or mechanism dedicated to resolving ethical dilemmas at the UCI. Instead, ethical dilemmas were addressed in six forums: individual consultations, tumor board meetings, morbidity and mortality meetings (MMMs), core management meetings, rewards and sanctions committee meetings, and clinical departmental meetings. Participants expressed apprehension regarding the efficacy of these fora due to their non-ethics related agendas as well as members lacking training in medical ethics and the necessary experience to effectively resolve ethical dilemmas. CONCLUSION: The fora employed at the UCI to address ethical dilemmas were implicit, involving decisions made through various structures without the guidance of personnel well-versed in medical or clinical ethics. There was a strong recommendation from participants to establish a multidisciplinary clinical ethics committee comprising members who are trained, skilled, and experienced in medical and clinical ethics.

"My support groups have saved my life.": facilitators of positive or satisfactory experiences in behavioral healthcare for transgender and gender nonconforming older adults.

OBJECTIVES: Transgender and gender nonconforming (TGNC) older adults experience significant behavioral health and healthcare disparities. Facilitators that contribute to positive behavioral healthcare experiences among this population, however, remain uncertain. In this study, we investigate facilitators contributing to positive or satisfactory behavioral healthcare experiences among a sample of TGNC older adults in the United States (US). METHOD: Between September 2021 and January 2022, the first author conducted 47 semi-structured, individual interviews with TGNC adults aged 65 years or over in the US. Using an inductive grounded theory approach, we examined respondents' positive or satisfactory experiences with accessing and utilizing behavioral health services, support, and resources. Analyses were conducted using NVivo (Release 1.6) software. RESULTS: Findings underscore the importance of addressing the specific or unique needs of TGNC older patients to promote positive or satisfactory experiences in behavioral healthcare. Three themes emerged: (1) engaging with behavioral healthcare practitioners who offer compassionate, patient-centered care; (2) accessing and utilizing culturally tailored peer-support groups; and (3) receiving equitable access to gender-affirming care and social services. CONCLUSION: These findings highlight opportunities for expanding and incorporating these identified facilitators into behavioral healthcare research and practice, especially when promoting gender affirmation in care for TGNC older patients.

Searching for choice and control: Western Australian service provider experiences of health, housing and migration.

This research aimed to inform approaches to increase access to secure housing and improve mental health outcomes for migrants from culturally and linguistically diverse backgrounds (hereafter migrants) who are generally invisible in health and social policy and service provision in Western Australia. We used semi-structured, in-depth interviews (n = 11) and interpretative phenomenological analysis to explore service provider experiences and perspectives of issues impacting service provision and the needs of migrants in this context. Five superordinate themes reveal complex experiences for both service providers and the migrants with whom they work. Findings reflect tensions between contemporary notions of choice and control and a social service system that is difficult to navigate, reflects systemic racism and appears to rely heavily on the non-government sector. Insights have important and practical implications for health promotion policy, practice and research. Recommendations include improvements to housing access, provision, funding and policies; addressing service barriers via staff training and more accessible community resources; and co-design and community outreach approaches.

Is peer support a tipping point for the opioid use disorder crisis in Appalachia? Research holds the answer.

BACKGROUND: The present commentary highlights the pressing need for systematic research to assess the implementation and effectiveness of medications for opioid use disorder, used in conjunction with peer recovery support services, to improve treatment outcomes for individuals with opioid use disorder in Central Appalachia. This region, encompassing West Virginia, Eastern Kentucky, Southwest Virginia, East Tennessee, and Western North Carolina, has long grappled with a disproportionate burden of the opioid crisis. Due to a complex interplay of cultural, socioeconomic, medical, and geographic factors, individuals in Central Appalachia face challenges in maintaining treatment and recovery efforts, leading to lower success rates. APPROACH: To address the issue, we apply an exploratory approach, looking at the intersection of unique regional factors with the utilization of medications for opioid use disorder, in conjunction with peer recovery support services. This combined treatment strategy shows promise in addressing crucial needs in opioid use disorder treatment and enhancing the recovery journey. However, there are significant evidence gaps that need to be addressed to validate the expected value of incorporating peer support into this treatment strategy. CONCLUSION: We identify nine obstacles and offer recommendations to address the gaps and advance peer recovery support services research. These recommendations include the establishment of specific partnerships and infrastructure for community-engaged, peer recovery support research; improved allocation of funding and resources to implement evidence-based practices such as peer support and medication-assisted treatment; developing a more precise definition of peer roles and their integration across the treatment and recovery spectrum; and proactive efforts to combat stigma through outreach and education.

Exploring access to support services for medical students: recommendations for enhancing wellbeing support.

BACKGROUND: Medical students have reported facing unique challenges in their academic journey that can have a significant impact on their mental health and wellbeing; therefore, their access to support services and wellbeing resources has been deemed crucial for dealing effectively with the various challenges they tend to face. While previous research has highlighted certain barriers affecting medical students' help-seeking and access to wellbeing support more generally, there is a pressing need for more in-depth research into the factors that may hinder or facilitate medical students' acceptability and uptake of the wellbeing resources available to them within institutional contexts. The current study aims to explore students' perceptions and utilization of wellbeing interventions and welfare resources within a medical school setting, as well as the factors influencing their help-seeking attitudes or behaviours. Additionally, it seeks to instigate medical students' deeper reflections on potential enhancements that could be applied to wellbeing resources so that they are better suited to address their needs. METHODS: This study employed a qualitative design, involving semi-structured interviews and a series of focus groups with medical students at the University of Nottingham (UK). Post-interview, focus groups were deemed necessary to gain deeper insights into emerging findings from the interviews regarding students' views on wellbeing support services. Qualitative data from the interviews was subjected to thematic analysis while a hybrid thematic analytic approach was applied for the focus group data in order to allow for both pre-defined themes from the interviews and newly emerging patterns to be identified and analysed in a combined manner. RESULTS: Twenty-five participants took part in the semi-structured interviews and twenty-two participants were recruited in a total of seven focus groups. Thematic analysis findings identified several key barriers to medical students' accessing wellbeing resources, including difficulties in finding relevant information, lengthy processes and difficulties receiving prompt help in urgent situations, learning environment issues, confidentiality concerns, and stigma around mental health. Student suggestions for the enhancement of wellbeing provision were centered around proposed improvements in the format that the relevant information was presented and in the structure underlying the delivery of support services. CONCLUSION: The study findings shed light on multi-faceted factors contributing to medical students' challenges in accessing support services; and provided a deeper understanding of medical students' wellbeing needs through a consolidation of their recommendations for the implementation of practical steps to address these needs. These steps can potentially inform key medical education stakeholders so that they can actively and proactively foster more supportive environments that may help improve medical students' help-seeking, as well as their acceptability and uptake of wellbeing services.

Challenges facing international students at Iranian universities: a cross-sectional survey.

BACKGROUND: This study examines the challenges faced by international students at Tehran University of Medical Sciences (TUMS) and provides insights into their experiences and needs. METHODOLOGY: A self-developed structured questionnaire was administered to international students who completed their first year at TUMS. Data were collected from 165 participants (76% response rate) and analyzed using SPSS 22.0. RESULTS: The study reveals that international students encounter various challenges, including difficulties accessing information, language barriers, ineffective communication, administrative inefficiencies, cultural issues, financial constraints, and limited scholarship opportunities. Analysis of students' characteristics indicates that the length of study at TUMS is significantly associated with the challenges experienced. The findings highlight the importance of enhancing support services and resources for international students, such as language classes, academic counseling, scholarships, and cultural exchange programs. CONCLUSION: Addressing these challenges can foster a more supportive environment, contributing to the academic success and well-being of international students at TUMS and similar universities.

Characteristics, correlates of burden and support service use of a help-seeking carers of loved ones with an eating disorder.

OBJECTIVE: Carers, vital in the care of individuals with an eating disorder (ED), experience substantial caregiving burden and unmet needs. This study aims to identify factors which contribute to the burden experienced by carers of a loved one with an ED and their support service usage. METHOD: Carers (N = 245) completed an online questionnaire assessing demographic, carer-specific, individual and ED factors. Multivariate relationships with caregiving burden were examined using forwards elimination to produce a parsimonious model of carer burden. RESULTS: The final model, consisting of caregiving factors (e.g., relationship type, skills), carer mental health) and loved one wellbeing (i.e., purging symptoms, depression/self-harm/suicidality) explained a large proportion (62%) of the variance in carers' burden. Carer mental health, caregiving skills and relationship type (e.g., parent, spouse, sibling) were key predictors of carers' burden. Nearly a third of carers had not used any carer support services, yet most carers expressed an interest in such services. CONCLUSION: Caregiving burden is determined by experiences and skills of the carer as well as the person they are caring for. Carer support services should continue to address the general wellbeing of carers and caregiver skills. Research into the barriers to carer support uptake is needed.

Valuing and sustaining older peoples' day care services.

BACKGROUND: Unprecedented ageing and growth of the global population of older people is predicted. Between independent and residential care, day care is an essential part of a population-based strategy to support ageing well in place. AIMS: To describe experiences of older people attending day care services. METHOD: Using the qualitative method, two focus groups were completed in 2018 in a region of Ireland with 12 participants. Interviews were audio-recorded and transcribed; grounded theory guided the subsequent analysis. FINDINGS: Older people valued their participation in day care, describing the 'home from home' experience positively. Community nurses from the local public health nursing service played a key role in fostering and sustaining participation. CONCLUSIONS: National commitment to population-based age friendly environments is required to facilitate the wellbeing of a growing older demographic.

[Use of support and relief services for parents of children in need of care: Results of the FamBer observational study]. / Inanspruchnahme von Unterstützungs- und Entlastungsdiensten für Eltern pflegebedürftiger Kinder.

Use of support and relief services for parents of children in need of care: Results of the FamBer observational study Abstract: Background: Parents of children in need of care in Germany can fall back on a variety of relief and support services. So far, however, there has been a lack of systematic studies and quantitative data on the use of such offers at the individual level of parents and other legal guardians. Aim: The study on the compatibility of care and work for parents with a child in need of care (FamBer; funding: Federal Ministry for Family Affairs, Senior Citizens, Women and Youth, Germany) examines the knowledge of relief and support services, their use and the perceived benefits of these offers. Methods: 1070 parents answered a multidimensional online questionnaire in the cross-sectional study that was developed based on the Kindernetzwerk Study 2 from 2013 and the German socio-economic panel (SOEP). In addition to descriptive analyses, group comparisons were carried out using Chi2, Mann-Whitney U or Kruskal-Wallis H tests. Results: 43 to 58% of parents are aware of the respective legal options for taking time off work, but only very few families make use of them. The other support offers differ significantly in terms of the level of knowledge and utilization; these vary primarily with the education of the parents and the care needs of the child. They assessed the used services for consultation and advice as only little helpful. Conclusions: Due to the study design, we cannot rule out that the findings are also based on personal characteristics of the parents and their living conditions. Nevertheless, a large number of problems (e.g. a lack of information, low using, ineffectiveness of support services) can be identified that need to be overcome.

"You start feeling comfortable, you just start sharing:" A qualitative study of patient distress screening in Black and White patients with endometrial cancer.

OBJECTIVES: Black patients with endometrial cancer are less likely to express distress and receive referrals for support services compared to White patients. We aim to characterize patient perceptions of the National Comprehensive Cancer Network Distress Thermometer and Problem List (NCCN DT & PL), a common distress screening tool, among Black and White patients with endometrial cancer and determine strategies to improve equity in referral to appropriate support services. METHODS: We conducted semi-structured interviews with 15 Black and 15 White patients with endometrial cancer who reported varying levels of distress on the NCCN DT & PL. Interviews were audio-recorded, transcribed, evaluated through staged content analysis, and salient themes were compared by patient race. RESULTS: The NCCN DT & PL was generally considered understandable, however the word "distress" could be alienating to participants who considered their stress to be less "drastic." Black participants mentioned fewer negative emotions such as worry and sadness in describing distress and spoke more often of a positive outlook. Additionally, Black participants emphasized the importance of relationship-building with clinicians for open communication on the NCCN DT & PL and clinical encounter. Finally, participants were divided on whether they would alter the way they completed the NCCN DT & PL given more information on cut off scores for referrals, but generally expressed a desire for more direct offers of support services. CONCLUSIONS: Relationship-building, open communication around emotion, and longitudinal direct offers of support emerged as avenues to reduce inequities in referral to supportive services for patients with endometrial cancer.

Barriers, opportunities, and potential costs of expanding HIV support services.

Experiencing housing instability, food insecurity, and financial stress can negatively impact retention in care and treatment adherence for people living with HIV. Expanding services that support socioeconomic needs could help improve HIV outcomes. Our objective was to investigate barriers, opportunities, and costs of expanding socioeconomic support programs. Semi-structured interviews were conducted with organizations serving U.S. Ryan White HIV/AIDS Program clients. Costs were estimated from interviews, organization documents, and city-specific wages. Organizations reported complex patient, organization, program, and system challenges as well as several opportunities for expansion. The average one-year per-person cost for engaging new clients was $196 for transportation, $612 for financial aid, $650 for food aid, and $2498 for short-term housing (2020 USD). Understanding potential expansion costs is important for funders and local stakeholders. This study provides a sense of magnitude for costs to scale-up programs to better meet socioeconomic needs of low-income patients living with HIV.

Variation in local Ryan White HIV/AIDS program service use and impacts on viral suppression: informing quality improvement efforts.

The U.S. Ryan White HIV/AIDS Program (RWHAP) funds comprehensive services for people living with HIV to support viral suppression (VS). We analyzed five years of RWHAP data from the Minneapolis-St. Paul region to (1) assess variation and (2) evaluate the causal effect of each RWHAP service on sustained VS by race/ethnicity. Sixteen medical and support services were included. Descriptive analyses assessed service use and trends over time. Causal analyses used generalized estimating equations and propensity scores to adjust for the probability of service use. Receipt of AIDS Drug Assistance Program and financial aid consistently showed higher probabilities of sustained VS, while food aid and transportation aid had positive impacts on VS at higher levels of service encounters; however, the impact of services could vary by race/ethnicity. For example, financial aid increased the probability of sustained VS by at least 3 percentage points for white, Hispanic and Black/African American clients, but only 1.6 points for Black/African-born clients. This study found that services addressing socioeconomic needs typically had positive impacts on viral suppression, yet service use and impact of services often varied by race/ethnicity. This highlights a need to ensure these services are designed and delivered in ways that equitably serve all clients.

Exploring the experiences and priorities of women with a diagnosis of ovarian cancer.

PURPOSE: Ovarian cancer is the third most common gynaecological cancer among women, yet remains under-researched. Past studies suggest that women who present with ovarian cancer have more supportive care needs compared to women experiencing other gynaecological cancers. This study explores the experiences and priorities of women with a diagnosis of ovarian cancer and whether age may influence these needs and experiences. METHODS: Participants were recruited by a community organization, Ovarian Cancer Australia (OCA), via a social media campaign promoted on Facebook. Participants were asked to rank priorities around living with ovarian cancer, and to endorse which supports and resources they had used to address those priorities. Distributions of priority rankings and resource use were compared by age (19-49 vs. 50+ years). RESULTS: Two hundred and eighty-eight people completed the consumer survey and most respondents were 60-69 years (33.7%). Priorities did not vary by age. Fear of cancer recurrence was identified by 51% respondents as the most challenging aspect of having ovarian cancer. Compared with older respondents, a higher proportion of young participants were more inclined to use a mobile app version of the OCA resilience kit (25.8% vs 45.1%, p=0.002) and expressed interest in using a fertility preservation decision aid (2.4% vs 25%, p<0.001). CONCLUSION: Fear of recurrence was participants' primary concern, presenting an opportunity to develop interventions. Information delivery needs to consider age-specific preferences to better reach the target audience. Fertility is more important to younger women and a fertility preservation decision aid may address this need.

Formal support services and (dis)empowerment of domestic violence victims: perspectives from women survivors in Ghana.

BACKGROUND: As part of efforts to prevent violence against women, several countries have institutionalized formal support services including legislations to prevent, protect victims, and deter perpetrators of domestic violence (DV). Prior research on formal support service utilization shows that DV survivors do not get the necessary services they deserve. However, much remains to be known about the experiences of women survivors of DV who accessed a range of formal support services and how their experiences (dis)empowered them. Here, we assessed the experiences of Ghanaian women survivors of DV with formal support services vis-à-vis the provisions of the Ghana DV Act and insights of subject experts. METHODS: From May to August 2018, we recruited a total of 28 participants: 21 women survivors of DV in Weija-Gbawe Municipality of Ghana, and 7 experts from the police, human rights, and health professions. We used two sets of in-depth interview guides: one to collect data on survivors' experiences, and the second for the insights of experts. We performed summary descriptive statistics on survivors' sociodemographic characteristics and used thematic analysis to assess their experiences of DV; and access to, patronage, and response of formal support services. RESULTS: Of 21 DV survivors, 19 (90.1%) were aware of the existence of the DV law, however none was well informed of their entitlements. DV survivors have low formal education and are not economically empowered. Some DV survivors are revictimized in the process of accessing formal services. DV survivors expect the government to provide them with shelter, upkeep, medical, and legal aid. All the 21 survivors had at least one contact with a women's rights organization and were knowledgeable of their supporting services namely legal services, temporary shelter, and psychosocial support. CONCLUSIONS: The experiences of DV survivors do not reflect the legal provisions of Ghana's DV Act. Government under funding of formal services and negative gender norms are disempowering to survivors. NGOs are popular among women survivors of DV in Ghana for the education, legal, and material support they provide. A close collaboration between the government and NGOs could better mitigate DV in Ghana.

Social support services for dementia during the COVID-19 pandemic: A longitudinal survey exploring service adaptations in the United Kingdom.

OBJECTIVES: To understand how the delivery of dementia-related social support services across the UK adapted during the pandemic. METHODS: We devised a two-part online and telephone longitudinal survey. Providers participated between March and June 2021, and again 3 months later. Information relating to services delivered and delivery methods employed was collected before and during the pandemic at two timepoints (T1 and T2). RESULTS: A total of 75 participants completed the survey at T1, with 58 participants completing the survey at both timepoints. Thirty-six participants had complete data at T1. Day care centres and support groups were the most delivered primary services. During the pandemic, services shifted from in-person to remote or hybrid. While in-person services started to resume at T2, most services remained hybrid. At T2, the frequency of service delivery increased, however, a decreasing trend in usage was observed across survey timepoints. The telephone was the most employed format to deliver remote and hybrid services, however, reliance on videoconferencing software significantly increased at T1. Videoconferencing software was often used alongside the telephone and emails to remotely deliver services. CONCLUSIONS: Services were able to adapt and provide support to some service recipients. Complementing novel approaches to service delivery with more traditional formats may facilitate access to service recipients with limited digital literacy. Following the easing of public health measures, many service recipients may be reluctant to engage with in-person services. Thus, the provision of in-person and remote services needs to be carefully balanced amidst the current hybrid landscape. PATIENT OR PUBLIC CONTRIBUTION: Two public advisors (a former unpaid carer and a person living with dementia) were involved in designing and piloting the tool, interpreting the results and disseminating the findings. Both public advisors have experience in delivering dementia-related social support services before and or during the pandemic in the United Kingdom.

"Entre Nosotras:" a qualitative study of a peer-led PrEP project for transgender latinas.

BACKGROUND: Uptake of HIV pre-exposure prophylaxis (PrEP) remains low among transgender people as compared to other subgroups, despite high rates of HIV acquisition. In California, Latinx people comprise 40% of the population and Latina transgender women experience some of the highest burden of HIV of any subgroup, indicating a critical need for appropriate services. With funding from the California HIV/AIDS Research Programs, this academic-community partnership developed, implemented, and evaluated a PrEP project that co-located HIV services with gender affirming care in a Federally Qualified Heath Center (FQHC). Trans and Latinx staff led intervention adaptation and activities. METHODS: This paper engages qualitative methods to describe how a PrEP demonstration project- Triunfo- successfully engaged Spanish-speaking transgender Latinas in services. We conducted 13 in-depth interviews with project participants and five interviews with providers and clinic staff. Interviews were conducted in Spanish or English. We conducted six months of ethnographic observation of intervention activities and recorded field notes. We conducted thematic analysis. RESULTS: Beneficial elements of the intervention centered around three intertwined themes: creating trusted space, providing comprehensive patient navigation, and offering social support "entre nosotras" ("between us women/girls"). The combination of these factors contributed to the intervention's success supporting participants to initiate and persist on PrEP, many of whom had previously never received healthcare. Participants shared past experiences with transphobia and concerns around discrimination in a healthcare setting. Developing trust proved foundational to making participants feel welcome and "en casa/ at home" in the healthcare setting, which began from the moment participants entered the clinic and continued throughout their interactions with staff and providers. A gender affirming, bilingual clinician and peer health educators (PHE) played a critical part in intervention development, participant recruitment, and patient navigation. CONCLUSIONS: Our research adds nuance to the existing literature on peer support services and navigation by profiling the multifaced roles that PHE served for participants. PHE proved instrumental to empowering participants to overcome structural and other barriers to healthcare, successfully engaging a group who previously avoided healthcare in clinical settings.

Moral distress and positive experiences of ICU staff during the COVID-19 pandemic: lessons learned.

BACKGROUND: The COVID-19 pandemic causes moral challenges and moral distress for healthcare professionals and, due to an increased work load, reduces time and opportunities for clinical ethics support services. Nevertheless, healthcare professionals could also identify essential elements to maintain or change in the future, as moral distress and moral challenges can indicate opportunities to strengthen moral resilience of healthcare professionals and organisations. This study describes 1) the experienced moral distress, challenges and ethical climate concerning end-of-life care of Intensive Care Unit staff during the first wave of the COVID-19 pandemic and 2) their positive experiences and lessons learned, which function as directions for future forms of ethics support. METHODS: A cross-sectional survey combining quantitative and qualitative elements was sent to all healthcare professionals who worked at the Intensive Care Unit of the Amsterdam UMC - Location AMC during the first wave of the COVID-19 pandemic. The survey consisted of 36 items about moral distress (concerning quality of care and emotional stress), team cooperation, ethical climate and (ways of dealing with) end-of-life decisions, and two open questions about positive experiences and suggestions for work improvement. RESULTS: All 178 respondents (response rate: 25-32%) showed signs of moral distress, and experienced moral dilemmas in end-of-life decisions, whereas they experienced a relatively positive ethical climate. Nurses scored significantly higher than physicians on most items. Positive experiences were mostly related to 'team cooperation', 'team solidarity' and 'work ethic'. Lessons learned were mostly related to 'quality of care' and 'professional qualities'. CONCLUSIONS: Despite the crisis, positive experiences related to ethical climate, team members and overall work ethic were reported by Intensive Care Unit staff and quality and organisation of care lessons were learned. Ethics support services can be tailored to reflect on morally challenging situations, restore moral resilience, create space for self-care and strengthen team spirit. This can improve healthcare professionals' dealing of inherent moral challenges and moral distress in order to strengthen both individual and organisational moral resilience. TRIAL REGISTRATION: The trial was registered on The Netherlands Trial Register, number NL9177.

Development and initial findings from the Peer Recovery Coach (PRC) checklist: a new tool to assess the nature of peer recovery coaching service delivery.

Background: Peer recovery coaching is recovery support service for Substance Use Disorder (SUD) that emphasizes shared lived experience and social support. Though a promising intervention for SUD, differences in the roles, responsibilities, and operationalization of peer recovery coaching across studies make objective implementation and evaluation of this service a challenge.Objective: This study sought to develop a tool to better guide and operationalize peer recovery coaching service delivery. This study describes the initial development, acceptability, feasibility, and validity of this tool: The PRC Checklist.Methods: The PRC Checklist was conceptualized and operationalized by drawing from social support theory and recovery capital research. The PRC Checklist was utilized by PRCs in a pilot randomized controlled trial to demonstrate feasibility and acceptability. To further validate the PRC Checklist, recovery coaches (N = 16; 56% female) were recruited to complete a survey about their responsibilities and their perspectives on the content and potential utility of the PRC Checklist.Results: The PRC checklist used in the pilot study delineates personalized from generalized support and tracks 25 specific activities across three domains of support (i.e. socioemotional, informational, and instrumental). PRCs in the pilot study were able to use the PRC Checklist in all in-person initial baseline encounters and 96.4% of follow-up encounters. Qualitative information collected during project meetings was generally positive but also identified potential limitations to its use. All PRCs surveyed reported that they agreed that the PRC Checklist was helpful, encompassed the services they provided, represented a good idea, provided meaningful information, and would be easy to use. All five of the most common activities PRCs engaged in were reflected in the PRC Checklist.Conclusion: Capturing both personal and generalized support provided by PRCs, this work suggests that the PRC Checklist captures key activities engaged in and is a helpful tool for use in healthcare settings.

Developing a Support Program for Adult Children of Parents with Mental Illness: A Delphi Study.

Parental mental illness can have long-lasting impacts on a child's life. Although programs exist in supporting the needs of young children, there remains a paucity in programs that address the needs of adult children. A two-round Delphi study with adult children, academics and clinicians who have experience with parental mental illness was employed. A total of 45 and 24 participants participated in rounds one and two respectively. Open-ended questions in round one around program design and content were thematically analysed, and subsequently rated in round two. Adult children specifically identified four topics of need: (i) managing multiple roles, (ii) emotional regulation, (iii) setting relational boundaries and (iv) transition to parenthood. Current results provide the foundation for the development of modular programs that could be pilot tested with adult children who grew up with parents with mental illness.