Randomized Controlled Trial of Telementoring During Resource-Limited Patient Care Simulation Improves Caregiver Performance and Patient Survival.

OBJECTIVES: To determine the impact of telementoring on caregiver performance during a high-fidelity medical simulation model (HFMSM) of a critically ill patient in a resource-limited setting. DESIGN: A two-center, randomized, controlled study using a HFMSM of a patient with community-acquired pneumonia complicated by acute respiratory distress syndrome. SETTING: A notional clinic in a remote location staffed by a single clinician and nonmedical assistant. PARTICIPANTS: Clinicians with limited experience managing critically ill patients. INTERVENTIONS: Telemedicine (TM) support. MEASUREMENTS: The primary outcome was clinical performance as measured by accuracy, reliability, and efficiency of care. Secondary outcomes were patient survival, procedural quality, subjective assessment of the HFMSM, and perceived workload. MAIN RESULTS: TM participants (N = 11) performed better than non-TM (NTM, N = 12) in providing expected care (accuracy), delivering care more consistently (reliability), and without consistent differences in efficiency (timeliness of care). Accuracy: TM completed 91% and NTM 42% of expected tasks and procedures. Efficiency: groups did not differ in the mean (± sd) minutes it took to obtain an advanced airway successfully (TM 15.2 ± 10.5 vs. NTM 22.8 ± 8.4, p = 0.10) or decompress a tension pneumothorax with a needle (TM 0.7 ± 0.5 vs. NTM 0.6 ± 0.9, p = 0.65). TM was slower than NTM in completing thoracostomy (22.3 ± 10.2 vs. 12.3 ± 4.8, p = 0.03). Reliability: TM performed 13 of 17 (76%) tasks with more consistent timing than NTM. TM completed 68% and NTM 29% of procedural quality metrics. Eighty-two percent of the TM participants versus 17% of the NTM participants simulated patients survived (p = 0.003). The groups similarly perceived the HFMSM as realistic, managed their patients with personal ownership, and experienced comparable workload and stress. CONCLUSIONS: Remote expertise provided with TM to caregivers in resource-limited settings improves caregiver performance, quality of care, and potentially real patient survival. HFMSM can be used to study interventions in ways not possible with real patients.

SupporTive Care At Home Research (STAHR) for patients with advanced cancer: Protocol for a cluster non-randomized controlled trial.

Advancements in the treatment and management of patients with cancer have extended their survival period. To honor such patients' desire to live in their own homes, home-based supportive care programs have become an important medical practice. This study aims to investigate the effects of a multidimensional and integrated home-based supportive care program on patients with advanced cancer. SupporTive Care At Home Research is a cluster non-randomized controlled trial for patients with advanced cancer. This study tests the effects of the home-based supportive care program we developed versus standard oncology care. The home-based supportive care program is based on a specialized home-based medical team approach that includes (1) initial assessment and education for patients and their family caregivers, (2) home visits by nurses, (3) biweekly regular check-ups/evaluation and management, (4) telephone communication via a daytime access line, and (5) monthly multidisciplinary team meetings. The primary outcome measure is unplanned hospitalization within 6 months following enrollment. Healthcare service use; quality of life; pain and symptom control; emotional status; satisfaction with services; end-of-life care; advance planning; family caregivers' quality of life, care burden, and preparedness for caregiving; and medical expenses will be surveyed. We plan to recruit a total of 396 patients with advanced cancer from six institutions. Patients recruited from three institutions will constitute the intervention group, whereas those recruited from the other three institutions will comprise the control group.

"I'll take them another day": A qualitative study exploring the socio-behavioral complexities of childhood vaccination in urban poor settlements.

Despite improvement over recent decades, childhood vaccination uptake remains a concern across countries. The World Health Organization observed that over 25 million children missed out on one or more vaccines in 2021, with urban poor and other marginalized groups being the most affected. Given the higher risk of disease transmission and vaccine-preventable diseases (VPD) outbreaks across densely populated urban slums, identifying effective interventions to improve childhood vaccination in this vulnerable population is crucial. This study explored the behavioral and social factors influencing childhood vaccination uptake in urban informal settlements in Nairobi, Kenya. A grounded theory approach was employed to develop a theoretical account of the socio-behavioral determinants of childhood vaccination. Five focus group discussions (FGDs) were conducted with purposively sampled caregivers of children under five years of age residing in informal settlements. The Theory of Planned Behavior guided the structuring of the FGD questions. An iterative process was used to analyze and identify emerging themes. Thirty-nine caregivers (median age 29 years) participated in the FGDs. From the analysis, four main thematic categories were derived. These included attitude factors such as perceived vaccine benefits, cultural beliefs, and emotional factors including parental love. Additionally, subjective norms, like fear of social judgment, and perceived behavioral control factors, such as self-control and gender-based influences, were identified. Furthermore, a number of practical factors, including the cost of vaccines and healthcare providers attitude, also affected the uptake of vaccination. Various social, behavioral, cultural, and contextual factors influence caregiver vaccination decisions in urban poor settings. Community-derived and context-specific approaches that address the complex interaction between socio-behavioral and other contextual factors need to be tested and applied to improve the timely uptake of childhood vaccinations among marginalized populations.

A fluctuating intensity of care: A qualitative study on the experiences of informal caregivers of patients with critical limb-threatening ischemia.

Informal caregivers play a significant role in providing care for older, often vulnerable, patients, and supporting them as they live with chronic diseases. Due to the rising prevalence of older vascular patients and their use of healthcare, the role of their informal caregivers will become more important. However, little is known about the experiences of informal caregivers of patients with critical limb-threatening ischemia and the impact of informal care on different aspects of these caregivers' lives. In addition, literature does not describe the burden this role brings with it, or lack thereof. Therefore a qualitative study using a phenomenological approach, specifically interpretive phenomenological analysis, was used to gain insight into the experiences of the primary informal caregivers of patients with chronic limb-threatening ischemia. Data were collected via semi-structured interviews and focus groups discussions. Fifteen primary informal caregivers of patients with critical limb-threatening ischemia under the care of the vascular surgeon at a tertiary teaching hospital in the Netherlands were included. Data analysis yielded three themes: the perceived identity of this group of caregivers; the varying intensity of informal care; and the collaboration between informal carers, their care recipients and the professional care provider within the vascular surgery department. In contrast to carers of other chronic diseases, the shifting intensity of care that informal caregivers of critical limb-threatening ischemia patients experience seems to prevent long-term overload. Adapting to that fluctuating situation requires flexibility from healthcare providers within the vascular surgery department. In addition, professionals need to involve informal caregivers in the patient's decision-making process and recognize their role in that process.

Loneliness and social isolation among informal carers of individuals with dementia: A systematic review and meta-analysis.

OBJECTIVES: This systematic review and meta-analysis aimed to determine the prevalence of loneliness and social isolation among informal carers of individuals with dementia and to identify potential influencing factors. METHODS: We conducted a comprehensive search across 10 electronic databases, including PubMed, Cochrane, Embase, Web of Science, PsycINFO, CINAHL, Scopus, Chinese Biomedical, China National Knowledge Internet, and WANFANG. Our search strategy covered the inception of the databases up to September 16, 2023, with an updated search conducted on March 8, 2024. Prevalence estimates of loneliness and social isolation, presented with 95% confidence intervals, were synthesized through meta-analysis. Subgroup analyses and meta-regression were employed to explore potential moderating variables and heterogeneity. RESULTS: The study encompassed 27 research papers involving 11,134 informal carers from 17 different countries. The pooled prevalence of loneliness among informal carers of individuals with dementia was 50.8% (95% CI: 41.8%-59.8%), while the pooled prevalence of social isolation was 37.1% (95% CI: 26.7%-47.6%). Subgroup analyses and meta-regression indicated that various factors significantly influenced the prevalence of loneliness and social isolation. These factors included the caregiving setting, study design, the intensity of loneliness, geographical location (continent), data collection time, and the choice of assessment tools. CONCLUSIONS: This study underscores the substantial prevalence of loneliness and social isolation among informal carers of individuals with dementia. It suggests that policymakers and healthcare providers should prioritize the development of targeted interventions and support systems to alleviate loneliness and social isolation within this vulnerable population.

Barriers to diverse clinical trial participation in Duchenne muscular dystrophy: Engaging Hispanic/Latina caregivers and health professionals.

BACKGROUND: Despite the increasing availability of clinical trials in Duchenne muscular dystrophy, racial/ethnic minorities and other populations facing health disparities remain underrepresented in clinical trials evaluating products for Duchenne. We sought to understand the barriers faced by Hispanic/Latino families specifically and underrepresented groups more generally to clinical trial participation in Duchenne. METHODS: We engaged two participant groups: Hispanic/Latino caregivers of children with Duchenne in the US, including Puerto Rico, and health professionals within the broader US Duchenne community. Caregiver interviews explored attitudes towards and experiences with clinical trials, while professional interviews explored barriers to clinical trial participation among socio-demographically underrepresented families (e.g., low income, rural, racial/ethnic minority, etc.). Interviews were analyzed aggregately and using a thematic analysis approach. An advisory group was engaged throughout the course of the study to inform design, conduct, and interpretation of findings generated from interviews. RESULTS: Thirty interviews were conducted, including with 12 Hispanic/Latina caregivers and 18 professionals. We identified barriers to clinical trial participation at various stages of the enrollment process. In the initial identification of patients, barriers included lack of awareness about trials and clinical trial locations at clinics that were less likely to serve diverse patients. In the prescreening process, barriers included ineligibility, anticipated non-compliance in clinical trial protocols, and language discrimination. In screening, barriers included concerns about characteristics of the trial, as well as mistrust/lack of trust. In consent and recruitment, barriers included lack of timely decision support, logistical factors (distance, time, money), and lack of translated study materials. CONCLUSIONS: Numerous barriers hinder participation in Duchenne clinical trials for Hispanic/Latino families and other populations experiencing health disparities. Addressing these barriers necessitates interventions across multiple stages of the clinical trial enrollment process. Recommendations to enhance participation opportunities include developing clinical trial decision support tools, translating prominent clinical trials educational resources such as ClinicalTrials.gov, fostering trusting family-provider relationships, engaging families in clinical trial design, and establishing ethical guidelines for pre-screening potentially non-compliant patients.

Long-term care staffs' experience in facilitating the use of videoconferencing by cognitively impaired long-term care residents during the COVID-19 pandemic: a mixed-methods study.

BACKGROUND: During the COVID-19 pandemic, numerous long-term care (LTC) homes faced restrictions that prevented face-to-face visits. To address this challenge and maintain family connections, many LTC homes facilitated the use of electronic tablets to connect residents with their family caregivers. Our study sought to explore the acceptability of this practice among staff members and managers, focusing on their experiences with facilitating videoconferencing. METHODS: A convergent mixed method research was performed. Qualitative and quantitative data collection through semi-structured interviews to assess the acceptability of videoconferencing in long-term care homes and to explore the characteristics of these settings. Quantitative data on the acceptability of the intervention were collected using a questionnaire developed as part of the project. The study included a convenience sample of 17 staff members and four managers. RESULTS: Managers described LTC homes' characteristics, and the way videoconferencing was implemented within their institutions. Affective attitude, burden, ethicality, opportunity costs, perceived effectiveness, and self-efficacy are reported as per the constructs of the Theoretical Framework of Acceptability. The results suggest a favorable acceptability and a positive attitude of managers and staff members toward the use of videoconferencing in long-term care to preserve and promote contact between residents and their family caregivers. However, participants reported some challenges related to the burden and the costs regarding the invested time and staff shortage. CONCLUSIONS: LTC home staff reported a clear understanding of the acceptability and challenges regarding the facilitation of videoconferencing by residents to preserve their contact with family caregivers.

"They don't care to study it": Trust, race, and health care experiences among patient-caregiver dyads with multiple myeloma.

BACKGROUND: Medical mistrust, rooted in unethical research, is a barrier to cancer-related health care for Black/African American (AA) persons. Understanding trust, mistrust, and health care experiences is crucial, especially in multiple myeloma (MM), which disproportionately burdens Black/AA persons in incidence and survival. STUDY PURPOSE: This study qualitatively examines the experiences of Black/AA and White dyads (patient with MM and adult caregiver) to gain insights into these phenomena. METHODS: From November 2021 to April 2022, we recruited 21 dyads from the UNC Lineberger Comprehensive Cancer Center. Participants completed a sociodemographic survey and a 60-90 min semi-structured interview. We used ATLAS.ti v9 for project management and to facilitate data analysis using the Sort and Sift, Think and Shift approach (ResearchTalk Inc). RESULTS: We interviewed 21 racially concordant dyads (11 Black/AA, 10 White) with mean patient ages of 70 (Black/AA) and 72 (White) at enrollment. Both Black/AA and White caregivers had a mean enrollment age of 68. The mean duration from MM diagnosis to enrollment for all patients was 5.5 years. Four key themes emerged: (1) knowledge and trust, (2) heightened emotions and discomfort, (3) differing mental constructs of health care experiences, and (4) mitigating mistrust, which varied by self-identified race. Black/AA participants had greater knowledge of historical events like the U.S. Public Health Service Untreated Syphilis Study at Tuskegee and carried the emotional burden longer. They also emphasized self-learning and self-guided research about MM for informed medical decision-making. Both Black/AA and White dyads emphasized the pivotal role of patient-provider relationships and effective communication in fostering trust and addressing concerns. CONCLUSION: Our study offers contextual insights into the enduring challenges of medical mistrust, particularly within the Black/AA community, and its implications for patients and caregivers accessing and receiving MM-related care. Future studies should leverage these insights to guide the development of multilevel interventions addressing medical mistrust within the Black/AA community.

Psychological well-being for cognitively impaired people scale: Assessing reliability and validity of Turkish version.

PURPOSE: The aim of the present study was to evaluate the psychometric properties of the Psychological Well-Being of Cognitively Impaired People (PWB-CIP) scale in people with dementia in nursing homes. METHOD: It was conducted with 70 people with dementia and 12 formal caregivers in two nursing homes. This study used translation and back translation for the scale's language equivalence and expert opinion for content validity. The reliability and validity were tested by exploratory and confirmatory factor analysis, test-retest correlation analyses, and internal consistency. RESULTS: The PWB-CIP was clustered under two factors. Cronbach's alpha scores for positive affect (α = 0.624), and negative affect (α = 0.822) factors were satisfactory. Confirmatory factor analysis revealed an acceptable level of fit (GFI = 0.905, p < 0.001, CFI = 0.94, RMSEA = 0.067). The test, retests were positively correlated (r: 0.756, p < 0.001). CONCLUSION: The 9-item PWB-CIP is a valid and reliable instrument for the examined Turkish sample. The PWB-CIP demonstrated robust psychometric properties in the context of nursing homes, indicating its suitability for assessing the well-being of individuals with dementia. NURSING IMPLICATIONS: The validated PWB-CIP can serve as a valuable tool for nurses and caregivers in evaluating the psychological well-being of cognitively impaired individuals in nursing home settings, enabling targeted interventions to enhance their overall quality of life.

Purpose in life moderates the relationship between loneliness and caregiving stress among family caregivers of people with mental health problems.

OBJECTIVE: Providing care to others can exert a profound impact on caregivers' sense of purpose or meaning in life, thereby reciprocally influencing the caregivers' overall health and well-being. This study aims to investigate whether the sense of purpose in life moderates the association between loneliness and caregiving stress among family caregivers of people with mental health problems. METHODS: A sample of family caregivers of people with mental health problems (N = 468, 57.1 % female) drawn from the 2020 survey of the Caregiving in the U.S. was investigated. Descriptive statistics, correlation analysis, and a multiple regression with an interaction term were performed. RESULTS: Higher levels of loneliness were associated with enhanced caregiving stress. Moreover, after demographic and care-related factors were controlled for, the association between loneliness and caregiving stress was moderated by purpose in life; namely, as the sense of purpose in life increased, so did the intensity of the relationship between loneliness and caregiving stress. CONCLUSION: Reducing loneliness or strengthening the sense of purpose helps alleviate caregiving stress, and lonely family caregivers with a strong sense of purpose deserve extra attention.

"When You Look at This Chart, That Is Not My Whole Life": Caregiver Perspectives to Inform Improved Primary Care Practice and Outcomes.

OBJECTIVE: Worsening rates of infant and maternal mortality in the United States serve as an urgent call for multi-modal intervention. Infant Well Child Visits (WCVs) provide an opportunity for prevention, however not all infants receive the recommended schedule of visits, with infants of low-income and Black families missing a higher portion of WCVs. Due to diverse experiences and needs of under-resourced communities throughout the United States, caregiver voice is essential when designing improvement efforts. METHODS: Purposeful sampling and interviewing of 10 caregivers in Cincinnati, OH was performed by community peer researchers. Interview transcripts were evaluated by the research team, with identification of several important themes. RESULTS: Nine out of 10 caregivers self-identified as Black. All young children of the interviewed caregivers had Medicaid as their insurance provider. All interviews highlighted rich perspectives on caregiver hopes for their child, family, and selves. Establishing trust through empathy, shared decision making, and the nurturing of interpersonal patient-practitioner relationships is crucial for fostering a positive healthcare experience. Levels of mistrust was perceptibly high across several interviews, with lack of racial concordance between medical provider and family exacerbating the issue for some caregivers. Caregivers voiced a tendency to rely on family and community members for when to seek out health care for their children, and additionally cited racism and perceptions of being rushed or judged as barriers to seeking further care. CONCLUSION: This study emphasizes the importance of being community-informed when considering interventions. Prior research on the topic of missed WCV's often focused on material resource availability and limitations. While that was commented on by caregivers in this study as well, equal-if not more-attention was directed toward interpersonal relationship formation, the presence or absence of trust between practitioner and caregiver, and the importance of social-emotional support for caregivers. We highlight several opportunities for systemic improvements as well as future directions for research.

A chain mediation model reveals the association between family sense of coherence and quality of life in caregivers of advanced cancer patients.

Caregivers of advanced cancer patients face challenges impacting their quality of life (QoL). While evidence suggests that family sense of coherence (FSOC) can enhance individual psychological well-being and reduce distress symptoms, the precise mechanism through which FSOC improves caregivers' QoL remains unclear. This study aimed to explore the relationships among FSOC, psychological resilience, psychological distress, and QoL in primary caregivers of advanced cancer patients. A cross-sectional observational study was undertaken from June 2020 to March 2021 across five tertiary hospitals in China. Instruments included a general characteristic questionnaire, the Family Sense of Coherence Scale, the Patient Health Questionnaire-4, the 10-item Connor-Davidson Resilience Scale, and the 8-item SF-8 health survey. Pearson's correlation and chain mediation analyses were performed using IBM SPSS (version 21) and PROCESS macro (version 3.4). Out of 290 valid questionnaires, results demonstrated that FSOC directly and positively influences caregivers' QoL. Psychological distress partially mediated the FSOC-QoL association, with paths "FSOC-psychological distress-QoL" and "FSOC-psychological resilience-psychological distress-QoL" contributing 43.08% and 6.72% of the total effect, respectively. Furthermore, this study distinguished physical and mental aspects of QoL, confirming both conform to the chain mediation model. FSOC impacts caregivers' QoL directly and indirectly through the mediation of psychological distress and the chain mediation effect of "psychological resilience-psychological distress". These insights enhance our understanding of the complex interplay between FSOC and QoL, underscoring the potential benefits of bolstering FSOC to strengthen caregiver resilience, alleviate distress, and ultimately elevate their QoL.

Validating interRAI Chinese self-reported carer needs (SCaN) assessment and predicting caregiving distress among informal Chinese caregivers of older adults.

BACKGROUND: This study aims to (1) determine the reliability and validity of the interRAI Chinese Self-reported Carer Needs (SCaN) assessment among informal Chinese caregivers of older adults, (2) identify predictors of caregiving distress in Asian regions with long-standing Confucian values of filial piety and family responsibility. METHODS: This cross-sectional study recruited 531 informal Chinese caregivers of older adults in Hong Kong, Shanghai, Taiwan, and Singapore. The scale reliability was examined using Cronbach's alphas (α) and McDonald's omega coefficient (ω). The concurrent validity and discriminant validity were assessed using Spearman rank correlations (rho). To examine the predictors of caregiving distress among informal caregivers of older adults, we employed hierarchical linear regression analyses informed by the Model of Carer Stress and Burden and categorized the predictors into six domains. RESULTS: Results revealed good internal consistency reliability (α = 0.83-0.96) and concurrent validity (rho = 0.45-0.74) of the interRAI Chinese SCaN assessment. Hierarchical linear regression analysis revealed that entering the background factors, primary stressors, secondary stressors, appraisal, and exacerbating factors all significantly enhanced the model's predictability, indicating that the source of caregiving distress is multidimensional. In the full model, caregivers with longer informal care time, lack of support from family and friends, have unmet needs, experience role overload, have sleep problems, and low IADL functioning are at a higher risk of caregiving distress. CONCLUSIONS: The interRAI Chinese SCaN Assessment was found to be a reliable and valid tool among the Chinese informal caregivers of older adults. It would be useful for determining family caregivers' strengths, needs, and challenges, and tailoring interventions that address the potentially modifiable factors associated with caregiving distress and maximize support. Healthcare providers working in home and community settings should be aware of the early identification of caregiving distress and routine assessment of their needs and empower them to continue taking care of their needs and providing adequate care to the care recipient.

Real experience of caregivers of patients with HIV/AIDS from the perspective of iceberg theory: a qualitative research.

OBJECTIVE: This study aimed to investigate the caregiving behaviours and supportive needs of caregivers of patients with HIV/AIDS and provide a basis for healthcare institutions to carry out caregiver interventions. DESIGN: A purposive sampling method was used to select 11 caregivers of patients with HIV/AIDS in the Infectious Disease Department of a tertiary hospital in Nanjing, China, to conduct semistructured interviews. Colaizzi analysis was used to collate and analyse the interview data. SETTING: All interviews were conducted at a tertiary hospital specialising in infectious diseases in Nanjing, Jiangsu Province. PARTICIPANTS: We purposively sampled 11 caregivers of people with HIV/AIDS, including nine women and two men. RESULTS: Analysing the results from the perspective of iceberg theory, three thematic layers were identified: behavioural, value and belief. The behavioural layer includes a lack of awareness of the disease, physical and mental coping disorders, and an increased sense of stigma; the values layer includes a heightened sense of responsibility, the constraints of traditional gender norms, the influence of strong family values and the oppression of public opinion and morality and the belief layer includes the faith of standing together through storms and stress. CONCLUSION: Healthcare professionals should value the experiences of caregivers of patients with HIV/AIDS and provide professional support to improve their quality of life.

Where does physical activity fit into preschool postpandemic? A qualitative exploration with parents, teachers and administrators.

OBJECTIVES: During the preschool years, children depend on adult caregivers to provide opportunities for physical activity (PA). Research has focused on measuring PA in preschool, as well as barriers and facilitators to children's PA but caregiver perceptions remain largely unknown especially in light of the COVID-19 pandemic. This study aims to understand the value of PA in preschool following the pandemic from three types of adult caregivers, parents of a young child (n=7), preschool teachers (n=7) and preschool administrators (n=7). METHODS: In-depth qualitative interviews were conducted to explore the following research questions: (a) how do caregivers describe the importance of PA in preschool postpandemic? (b) how do caregivers support and prioritise PA in preschool postpandemic and what challenges do they face in doing so? and (c) how do caregivers interact with one another to promote PA? Qualitative answers were coded using a codebook developed to answer the research questions of interest. RESULTS: Parents, teachers and administrators all described valuing PA for preschoolers, but each caregiver type described a different way of promoting it. All the caregivers listed barriers that inhibit their ability to prioritise and promote PA, some heightened postpandemic. Lastly, there were limited caregiver interactions when it came to promoting PA, with the burden largely falling on teachers. CONCLUSION: Our findings indicate that one particularly important area for intervention is supporting parents, teachers and preschool administrators in creating a shared understanding of the importance of PA for young children and ways to collaborate to promote it.

Development of family resource indicators for people with schizophrenic disorder in community by modified Delphi method in Beijing, China.

INTRODUCTION: Most people with schizophrenia in China are supported by their family members in community. The patient's family is confronted with severe care burden and pressure, which directly affects the caregiver's own health and social life, and indirectly affects the patient's rehabilitation. Adequate family resources can reduce the burden and pressure on families. But there is an absence of systematic family resource indicators for people with schizophrenic disorder in China. OBJECTIVES: This study aimed to develop a set of family resource indicators for people with schizophrenic disorder in China. DESIGN: Preliminary family resource indicators were generated and refined by literature review and an expert consultation meeting. Two rounds of email-based Delphi survey were carried out to identify family resource indicators. SETTING: Two rounds of email-based Delphi survey were performed from July to September 2021 in Beijing, China. PARTICIPANTS: There were 15 mental health doctors from community health service centres and four psychiatrists from tertiary hospitals, and two primary care researchers from universities in the first and second rounds Delphi survey. RESULTS: All the 21 experts participated in both rounds of Delphi survey. A total of 46 indicators achieved consensus for inclusion in the final set of indicators after two rounds of Delphi survey. The final set of indicators was grouped into 10 domains: financial support (three indicators), psychological and spiritual support (eight indicators), medical treatment (three indicators), information and education (three indicators), structural support (two indicators), external family resources included social resources (five indicators), cultural resources (two indicators), economic resources (seven indicators), environmental resources (four indicators) and medical resources (nine indicators). CONCLUSIONS: A set of 46 family resource indicators for people with schizophrenic disorder in community was identified by an iterative Delphi process in Beijing, China. However, the indicators still need to be validated by testing in further studies.

Caring for People Living With Dementia in Saudi Arabia: The Perspective of Nurses as Primary Caregivers.

Dementia is a progressive condition and an umbrella term used to describe a set of symptoms that affects many older adults. Older adults living with dementia often experience social stigma, which can impact their quality of life. Most people with dementia need the assistance of a caregiver in order to enhance their health. The present study seeks to explore the perspective of nurses as the primary caregivers of people living with dementia in Saudi Arabia, focusing on the challenges faced by nurses and their reactions to these challenges. A descriptive qualitative approach using semi-structured interviews with 10 nurses with experience caring for people living with dementia from 2 hospitals in Jeddah, Saudi Arabia. Using thematic analysis, 4 main themes were identified: (1) types of support, (2) challenges when caring for people living with dementia, (3) society's views on people living with dementia, and (4) nurses' perceptions of dementia. The nurses stated that people living with dementia do not receive sufficient support from their families. Most participants believed that public awareness about dementia is insufficient. Increased efforts to raise public awareness about dementia could include harnessing social norms around family structure and respect for elders to improve care provided to people living with dementia.

Brief admission by self-referral for individuals with self-harm and suicidal ideation: a qualitative study based on focus groups exploring relatives' experiences.

PURPOSE: Brief Admission by self-referral (BA) is a standardized crisis-management intervention for individuals with self-harm and risk for suicide. This study explored relatives' experiences of BA. Relatives' perspectives may contribute to an increased understanding of the effects of BA given the relatives' role as support and informal caregivers as well as being co-sufferers. METHODS: Fourteen relatives to adults with access to BA within one Swedish region participated in focus groups analysed with reflexive thematic analysis. RESULTS: We generated themes evolving around three meaning-based concepts: access (A low threshold to a safe back-up is crucial and obstacles may easily break faith), independence (Trust in their ability with care and respect), and recovery (The rest and relational recovery we all get are needed and invaluable). CONCLUSIONS: BA brings considerable value to users and relatives, by supporting them to take care of themselves and each other. Communication and involvement of relatives may enhance users' ability to overcome obstacles to accessing BA. Implementation and adherence may be strengthened by supervision of BA staff and education of emergency care staff. Resources are needed to improve access. Mapping hurdles to BA, support through peers and targeted psychoeducation may improve recovery for BA users and their relatives.

Caregiver interactions, perceived control, and meaning in life of elderly: the moderating effect of the elderly-to-social worker ratio.

BACKGROUND: Meaning in life is a widely accepted aim in promoting psychosocial health in institutional care. However, how caregiver interaction and perceived control impact meaning in life among the elderly remains unclear. This study explores the effect of institutional caregiver interaction, family caregiver interaction, and perceived control on meaning in life among elderly residents in China, and the potential moderating effect of elderly-to-social worker ratio in these associations. METHODS: Multistage random sampling was used to recruit a sample of 452 elderly residents from 4 elderly care homes in urban China. A structural equation model was used to test the study hypothesis. RESULTS: Institutional caregiver interaction is positively related to meaning in life, and perceived control among elderly residents has a positive impact on meaning in life. Moreover, the elderly-to-social worker ratio moderated the relationship between institutional caregiver interaction and meaning in life, as well as between family caregiver interaction and meaning in life. CONCLUSIONS: Increase elderly's meaning in life is an important service target for the caring professions in institutional care. Social workers affect the effectiveness of interventions on elderly's meaning in life in institutional care. A higher elderly-to-social worker ratio could improve the effectiveness of interventions on meaning in life for elderly residents.