What supports do autistic adolescents and adults need? Perspectives of self-reporting adults and caregivers.

INTRODUCTION: Increasingly, autistic adolescents and adults are accessing occupational therapy. However, limited evidence exists on the type of supports that are important to them. Examining the patterns of supports valued by autistic adolescents and adults will inform the design of occupational therapy services. Therefore, this study aimed to identify what supports autistic adolescents and adults believed to be the most important. METHODS: This study involved two anonymous online surveys. Survey one involved 54 items and was distributed to caregivers of autistic adolescents and/or adults. Survey two included 41 items and was distributed to self-reporting autistic adults. Surveys sought closed and open-ended responses about the support needs of autistic individuals living in Australia. Quantitative data were analysed as counts and frequencies of responses, whereas short-answer responses were analysed through content analysis. COMMUNITY AND CONSUMER INVOLVEMENT: There was no consumer or community involvement in the completion of this project. RESULTS: A total of 68 caregivers of autistic adolescents or adults and 59 self-reporting adults completed the survey resulting in 127 responses. Quantitative data from both autistic adolescents' and adults' closed-answer responses showed that the highest support needs were for supporting participation in employment and supporting health and wellbeing. Content analysis of open-ended responses, performed separately for each participant group, revealed six categories: employment, promoting independence, supporting positive social and communication experiences, supporting health and wellbeing, caregiver support, and promoting autism acceptance. CONCLUSION: Results highlight that autistic individuals and their caregivers have a diverse range of priorities, all of which align with the scope of occupational therapy practice. Differences between the priorities of autistic individuals and their caregivers highlight the importance of therapists providing person and family-centred approaches tailored towards both the autistic person's and their caregiver's needs. PLAIN LANGUAGE SUMMARY: Increasingly, autistic adolescents and adults are accessing occupational therapy services. However, limited information exists regarding the type of supports that are important to them. Understanding what supports are valued by autistic adolescents and adults will support occupational therapists deliver effective and individualised services. Therefore, this study aimed to identify what supports autistic adolescents and adults believed to be the most important to them. This study involved two anonymous online surveys. Survey one was completed by caregivers of autistic adolescents and/or adults. Survey two was completed by self-reporting autistic adults. Surveys included both open-ended and closed-answer responses to better understand the support needs of autistic individuals living in Australia. A total of 68 caregivers of autistic adolescents or adults and 59 self-reporting adults completed the survey resulting in 127 responses. Closed-answer response questions from both the caregivers and self-reporting autistic adolescents and adults showed that the highest support needs were for supporting participation in employment and supporting health and wellbeing. Open-ended response questions revealed six main priorities including, employment, promoting independence, supporting positive social and communication experiences, supporting health and wellbeing, caregiver support, and promoting autism acceptance. This study found that autistic individuals and their caregivers have a diverse range of priorities, all of which align with the scope of occupational therapy. Further, participant responses highlight the importance of therapists providing person and family-centred approaches tailored towards both the autistic person's and their caregiver's needs.

The needs for digital health and eHeath literacy of cancer patients, caregivers, and healthcare providers: A multicenter, descriptive correlational study.

PURPOSE: Digital health is an indispensable tool, but its use depends on the eHealth literacy (eHL) of end-users. This study aimed to understand the need for digital health and eHL among cancer patients, caregivers, and healthcare providers and to identify differences in digital health needs related to the eHL of cancer patients. METHODS: A multicenter, descriptive correlational study was conducted and included a total of 209 patients, 150 caregivers and 150 healthcare providers. Digital health needs were identified, and eHL was measured using the Korean version of the eHealth Literacy Scale. Differences in digital health needs in relation to the eHL of patients were analyzed. RESULTS: The most necessary digital health functions among cancer patients and caregivers were 'information and education on symptom management after cancer treatment' and 'education on coping methods for each type of cancer' (87.1-94.0%). Healthcare providers reported the need for a digital health function for 'medication information' and assisting in 'medical appointments' (96.7-98.0%). The preferred types of digital health were telemonitoring, mobile services, and telemedicine by telephone (81.3-90.5%). The mean eHL score of the cancer patients was 28.84 ± 6.75. Differences existed in the need for digital health functions and preferences for digital health types between cancer patients with high and low eHL. CONCLUSIONS: Cancer patients and caregivers expressed strong needs for digital health that provide information and education about symptom management and coping with cancer. Digital health interventions for cancer care need to be developed to reflect the identified needs and preferences and eHL of end-users.

Factors that influence presentation to an emergency department during systemic anti-cancer therapy: An exploratory qualitative study.

PURPOSE: To explore factors that influence presentation to an emergency department during ambulatory systemic anti-cancer therapy. METHODS: This study was an exploratory qualitative study using semi-structured interviews. A purposive sample of adult patients with any cancer who had commenced systemic anti-cancer therapy in the ambulatory setting up to six months prior participated in semi-structured interviews between November 2016-December 2017. Interviews were transcribed verbatim, and data analysed thematically using a template analysis approach. RESULTS: Twenty patients and four caregivers took part. Five themes were generated from the interview data: 1) the unknown and unpredictable; 2) a change of lifestyle; 3) social determinants and access; 4) trust in care providers; and 5) the unavailability of care. CONCLUSION: As the number of systemic anti-cancer agents and patients eligible for them continues to grow, identifying, implementing and evaluating initiatives to mitigate emergency department presentations present an important area for health services research. Addressing timely access to trusted care and enhancing patient capacity for self-management present important areas for nurse-led system innovation. Findings from this study offer important insights into where and how nurses can mitigate emergency department presentations for individuals receiving systemic anti-cancer therapy by enabling accessible, coordinated and person-centred cancer care.

What Patients Want: A Qualitative Study of Patients' Perspectives on Optimizing the Hospital Discharge Process.

Background: Poor discharge planning can lead to increases in adverse drug events, hospital readmissions, and costs. Prior research has identified the pharmacist as an integral part of the discharge process. Objectives: To gain patients' perspectives on the discharge process and what they would like pharmacists to do to ensure a successful discharge. Methods: Twenty patients discharged from tertiary care hospitals were interviewed after discharge. A phenomenological approach was used to conduct this qualitative study. Results: Five main themes were identified from the patient interviews: interactions with health care professionals, importance of discharge documentation, importance of seamless care, comprehensive and patient-specific medication counselling, and patients' preference for involvement and communication at all stages of hospital stay. Conclusions: Although participants generally reported positive interactions with health care providers at discharge, several areas for improvement were identified, particularly in terms of communication, discharge documentation, and continuity of care. A list of recommendations aligning with patient preferences is provided for clinicians.

Contexte: Une mauvaise planification du congé hospitalier peut entraîner une augmentation des événements indésirables liés aux médicaments, des réadmissions et des coûts. Des recherches antérieures ont reconnu le pharmacien comme faisant partie intégrante du processus associé au congé de l'hôpital. Objectifs: Recueillir le point de vue des patients sur le processus relatif au congé et sur ce qu'ils aimeraient que les pharmaciens fassent pour assurer la réussite de celui-ci. Méthodologie: Vingt patients d'hôpitaux de soins tertiaires ont été interrogés après leur congé. Cette étude qualitative a été menée en adoptant une approche phénoménologique. Résultats: Cinq thèmes principaux ont émergé à partir des entretiens avec les patients: les interactions avec les professionnels de la santé, l'importance de la documentation au moment du congé, l'importance de soins continus, des conseils complets et spécifiques au patient en matière de médication, et la préférence des patients pour l'implication et la communication à toutes les étapes de leur séjour à l'hôpital. Conclusions: Bien que les participants aient généralement signalé des interactions positives avec les prestataires de soins de santé au moment de leur congé, plusieurs domaines d'amélioration ont été dépistés, notamment sur les plans de la communication, de la documentation au moment du congé et de la continuité des soins. Une liste de recommandations alignées sur les préférences des patients est fournie aux cliniciens.

Early intervention service needs of mothers with a child diagnosed with autism spectrum disorder in Turkey: A qualitative study.

BACKGROUND: Early intervention services play a crucial role in the prevention and management of Autism Spectrum Disorder (ASD). With the increasing prevalence of ASD, understanding the specific needs of mothers and their children is essential for the development of effective interventions and support systems. METHODS: This interview study examines the early intervention service needs of Turkish mothers with children aged 2-6 who have been diagnosed with ASD. Semi-structured in-depth interviews were conducted with nine mothers. Thematic analysis was carried out following the guidance and six steps procedures described by Braun and Clarke. FINDINGS: The study's findings reveal six distinct themes that encompass the needs expressed by the participating mothers: 1) psychological support needs, 2) social support needs, 3) financial support needs, 4) strengthening the family, 5) government-based enhancement, and 6) the need for social awareness. DISCUSSION: The findings underscore the significance of comprehensive early intervention services tailored to address the needs of mothers. The stressors associated with the impact of ASD on families are highlighted, aligning with Guralnick's framework. The findings emphasize the need for holistic intervention programs and stress the importance of collaborative relationships among parents, educators, and service providers. APPLICATION TO PRACTICE: The practical implications of this study benefit healthcare professionals, policymakers, educators, and stakeholders. The emphasis lies in aligning interventions with the ASD needs of both mothers and children, ultimately aiding in the development of effective policies and the enhancement of the quality of care for individuals with ASD in Turkey.

Healthcare Service Needs of Orphans and Vulnerable Children in Orphanages and Barriers Caregivers face in meeting their Healthcare Service Needs: A Mixed Method Research.

Poor health and well-being among orphans and vulnerable children (OVC) in orphanages has been documented in literature, and evidence has shown an association between access to healthcare and well-being among this population. This study assessed the healthcare service needs of OVC and explored the barriers their caregivers face in meeting their healthcare service needs using a mixed method research approach. The study utilized a multi-stage sampling technique in selecting 384 OVC and 14 caregivers that participated in the study. Data were collected using pre-tested questionnaire and interview guide. The quantitative data were analyzed using Statistical Product and Service Solutions (SPSS) version 23, while the qualitative data were analyzed using thematic and content analysis. The result of the study shows that regular health assessment while in the orphanage tops the list of health services needed by OVC; this was followed by health assessment before or during admission into orphanages and facility visits for management of common illness by health professionals while health education for the children and caregivers ranked third. Mental healthcare was the least need reported by the children. From the caregivers' perspectives, financial, structural and psychological barriers emerged as major themes for barriers faced in meeting the healthcare service needs of OVC. The study concluded that OVC are mainly in need of regular health assessment and treatment of common ailments during facility visits by health professionals. The study further shows that caregivers face significant barriers in meeting the healthcare service needs of OVC.

Divergent Experiences Reported by Rural and Frontier Older Adults Aging in Place.

Aging research tends to define rural as any area that is not urban without considering the diversity that exists within rural environments. Using government guidelines defining frontier and rural counties, the purpose was to identify similarities and differences in the aging experience reported by community-dwelling rural and frontier older adults. Individual interviews were completed in Wyoming with 142 older adults from frontier (n = 72) and rural counties (n=70). Summative content analysis was used to evaluate responses within the framework of social influences and nested environmental interactions of a socio-ecological model. Rural older adults reported needing more medical services and care, while frontier adults indicated an absence for many of these services. Similar response patterns were indicated with regard to grocery stores and general shopping. Current interview statements provide foundational information for future policies that recognize frontier aging in place that does not equate to aging in rural specific areas.

The challenges of the Iranian nursing system in addressing community care needs.

BACKGROUND: The nursing system is one of the major and important fields of health and medicine in every country, responsible for providing nursing care and addressing medical and health-related community care needs. The aim of this study was to explain the challenges of the Iranian nursing system in addressing community care needs. MATERIALS AND METHODS: A conventional content analysis method was performed in this exploratory qualitative study, and 27 participants were selected through a purposive sampling method based on the inclusion criteria. In-depth semi-structured interviews were conducted with the subjects, and data saturation was achieved in the 27th interview. The main interviews with the participants were individual, in person, and face-to-face, conducted at different times (morning and evening) in a peaceful environment and at the convenience of the participants. The interviews were recorded by the researcher with the participants' consent. The duration of the interviews ranged from 50 to 70 minutes, given the participants' energy and time. Data analyses were done using Graneheim and Lundman approach. RESULTS: After conducting the interviews and the simultaneous analysis, three themes were extracted, including the challenging structure in the internal environment, the operating environment, and the social environment, with seven main categories and 26 subcategories. An inadequate number of nurses given the real needs of society, the unbalanced proportion of employed clinical nurses to the real needs of society, poor presence of nurses in community-based nursing services, insufficient attention to the optimization of the work environment, the gap between education and clinical practice in the nursing system, poor mutual accountability of the community, and policies in the health system were seven main categories in this study. CONCLUSION: In general, the results showed that the Iranian nursing system faces many micro, meso, and macroscale challenges. It is necessary to plan properly to enhance the accountability of the nursing system to the current community care needs by improving the situation.

Prevalence of unmet supportive care needs reported by individuals ever diagnosed with cancer in Australia: a systematic review to support service prioritisation.

PURPOSE: Improved health outcomes for individuals ever diagnosed with cancer require comprehensive, coordinated care that addresses their supportive care needs. Implementing interventions to address these is confounded by a lack of evidence on population needs and a large pool of potential interventions. This systematic review estimates the point prevalence of different supportive care needs stratified by the tool used to measure needs and cancer type in Australia. METHODS: We searched MEDLINE, Embase, and Scopus from 2010 to April 2023 to identify relevant studies published on the prevalence of supportive care needs in Australia. RESULTS: We identified 35 studies that met the inclusion criteria. The highest prevalent unmet need across all cancers was 'fear of cancer spreading' (20.7%) from the Supportive Care Needs Survey Short-Form 34 (SCNS-SF34), ranging from 9.4% for individuals ever diagnosed with haematological cancer to 36.3% for individuals ever diagnosed with gynaecological cancer, and 'concerns about cancer coming back' (17.9%) from the Cancer Survivors' Unmet Needs (CaSUN), ranging from 9.7% for individuals ever diagnosed with prostate cancer to 37.8% for individuals ever diagnosed with breast cancer. Two studies assessed needs in Aboriginal and Torres Strait Islander populations, reporting the highest needs for financial worries (21.1%). CONCLUSIONS: Point prevalence estimates presented here, combined with estimates of the costs and effects of potential interventions, can be used within economic evaluations to inform evidence-based local service provision to address the supportive care needs of individuals ever diagnosed with cancer. IMPLICATIONS FOR CANCER SURVIVORS: Local health services can use local evidence to prioritise the implementation of interventions targeted at unmet needs.

Comprehensive Health Assessment for Children in Out-of-Home Care: An Exploratory Study of Service Needs and Mental Health in a Norwegian Population.

A comprehensive model for routine multi-disciplinary health assessment for children in out-of-home care was piloted in a Norwegian region. This paper reports on identified service needs and mental disorders among 196 children (0-17 years) receiving the assessment. Cross-sectional data was extracted from assessment reports. Results show needs across a range of services, with a mean of 2.8 recommended services for children aged 0-6 and 3.3 for children aged 7-17. Mental disorders were identified in 50% of younger children, and 70% of older children. For all children, overall service need was associated with mental disorders, in addition to male gender among younger children. Need for specialized mental health services was associated with mental disorders among younger children and increasing age among older children. The high frequency of service needs and mental disorders illustrate the importance of offering comprehensive health assessments routinely to this high-risk child population and necessitates coordinated service delivery.

Prevalence of unmet health care need in older adults in 83 countries: measuring progressing towards universal health coverage in the context of global population ageing.

Current measures for monitoring progress towards universal health coverage (UHC) do not adequately account for populations that do not have the same level of access to quality care services and/or financial protection to cover health expenses for when care is accessed. This gap in accounting for unmet health care needs may contribute to underutilization of needed services or widening inequalities. Asking people whether or not their needs for health care have been met, as part of a household survey, is a pragmatic way of capturing this information. This analysis examined responses to self-reported questions about unmet need asked as part of 17 health, social and economic surveys conducted between 2001 and 2019, representing 83 low-, middle- and high-income countries. Noting the large variation in questions and response categories, the results point to low levels (less than 2%) of unmet need reported in adults aged 60+ years in countries like Andorra, Qatar, Republic of Korea, Slovenia, Thailand and Viet Nam to rates of over 50% in Georgia, Haiti, Morocco, Rwanda, and Zimbabwe. While unique, these estimates are likely underestimates, and do not begin to address issues of poor quality of care as a barrier or contributing to unmet need in those who were able to access care. Monitoring progress towards UHC will need to incorporate estimates of unmet need if we are to reach universality and reduce health inequalities in older populations.

HIV-related risk among justice-involved young African American women in the U.S. South.

Incarceration rates have increased exponentially among women, and racial disparities in justice involvement persist. Coupled with disparities in HIV in the US South that begin early in the life course, it is important to explicate the relationship between justice involvement, HIV-related risk (such as illicit drug use and sexual risk), and service needs for young African American women. This study examined the association of previous arrest, biological and self-reported HIV-related risk, and reported service needs at baseline among 646 African American women aged 18 to 25 who were recruited as part of an HIV-risk reduction trial. Approximately 24% of participants reported previously being arrested. In adjusted analyses, several substance use and sexual risk variables were found to be significant, including increased odds of positive screens for both cocaine (AOR: 3.09; 95% CI [1.49, 6.41]) and marijuana (AOR: 1.82; 95% CI [1.17, 2.83]), trading sex for goods (AOR: 2.23; 95% CI [1.14, 4.38]), and recent sexually transmitted infections (AOR: 1.84; 95% CI [1.03, 3.27]). Previous arrest was associated with greater service needs, including violence-related (AOR: 4.42; 95% CI [2.03, 9.64]), parenting (AOR: 2.92; 95 CI% [1.65, 5.17]), and housing (AOR: 2.38; 95% CI [1.54, 3.67)]). The study findings indicate the increased risk across both HIV-related substance use and sexual risk and the service needs for African American women in emerging adulthood who have been arrested. These disparities suggest the importance of interventions to address the specific needs of this population at a critical period to not only prevent HIV but also address social determinants.

Trends in health service needs, utilization, and non-communicable chronic diseases burden of older adults in China: evidence from the 1993 to 2018 National Health Service Survey.

BACKGROUND: Aging is associated with an increased prevalence of non-communicable chronic diseases (NCDs), functional impairments, and diverse demands for health services. This study analyzed the trends in older adults' needs and utilization of health services from 1993 to 2018 in China, as well as chronic disease-related economic burdens. METHODS: The research data were collected from the six cross-sectional National Health Service Survey (NHSS), implemented every 5 years from 1993 to 2018. A multi-stage stratified random cluster sampling method has been adopted in the NHSS. The data on the older population's socio-economic characteristics, health service needs, and utilization were collected from the 6 waves National Health Service Survey (NHSS) 1993-2018. In the 2013 and 2018 NHSSs, EQ-5D-3L and visual analogue scale were used to evaluate the health condition. And the prevalence of NCDs and related Out-of-pocket (OOP) expenditures were collected. Functional dependency and impairment were collected in 2018. The Katz Activities of Daily Living scale was used to evaluate six functions, including self-feeding, dressing, bathing, transferring, toilet hygiene, and controlling bowel movements. RESULTS: The two-week morbidity rate and prevalence of NCDs showed a rapid upward trend in older adults. With the development of health system reform and universal health insurance coverage, older adults' two-week medical consultation rate increased from 25.6% in 1993 to 40.1% in 2018, and the hospitalization rate rose from 6.1% to 24.9%. The difference in health service needs and utilization between urban and rural areas decreased, and the hospitalization rate in rural areas (26.3%) exceeded that in urban areas (23.6%) for the first time in 2018. Functional independence become more severe as aged. The proportion of severe functional impairment was 6.9% and 2% in the group aged 80 or over and group 70-79 years, respectively. Regarding disability status, 32.5% had hearing problems and 31.4% had visual impairment. The highest prevalence rates of NCDs in older adults were found in hypertension (36.9%), followed by diabetes (10.6%), cerebrovascular disease (5.4%), ischemic heart disease (4.5%), and intervertebral disc disease (4.2%). The average annual OOP expenditures attributed to NCDs increased from ¥2481.8 RMB in 2013 to ¥8255.9 RMB in 2018 for older adults. About 90.7% of older adults prefer to live in the residential community, leading to the demands for preventive healthcare (30.4%), medical treatment (14.1%), and elderly education (8.6%). CONCLUSION: The elevated risks of age-related impairments and chronic morbidities, and increased demands for preventive healthcare are critical public health issues. Policymakers should strengthen primary healthcare and move towards integrated delivery to improve access and quality of care for older adults. The integration of healthcare and social security constitutes an adaptive trend in meeting the multi-level demands of an aging society.

Women's experiences of trauma, the psychosocial impact and health service needs during the perinatal period.

BACKGROUND: Traumatic events are associated with psychological and physical health problems for women in the perinatal period (i.e., pregnancy-12-months after childbirth). Despite the negative impact of trauma on perinatal women, the long-term impact of such diverse trauma and women's experience during the perinatal period remains understudied. METHODS: This study explored two research questions: 1) What are the psychological experiences of perinatal women who have experienced interpersonal traumatic events? And 2) What are the service needs and gaps expressed by women relating to perinatal medical protocols and psychological services? These questions were addressed via in-depth semi-structured qualitative interviews with nine perinatal women (one pregnant and eight postpartum) residing in central Canada who reported experiencing interpersonal traumatic events occurring from adolescence to the perinatal period. Recruitment and data collection occurred from October 2020 to June 2021. Interviews were audio-recorded, transcribed, and analyzed according to constructivist grounded theory. RESULTS: The emergent grounded theory model revealed the central theme of the role of prior trauma in shaping women's perinatal experiences, with four related main themes including perinatal experiences during the COVID-19 pandemic, the role of social support in women's perinatal experiences, the barriers that women experienced while seeking psychological and medical services prior to the perinatal period and during the perinatal period, and the specific needs of perinatal women with a history of interpersonal trauma. CONCLUSIONS: Findings of this research highlight the negative and long-lasting impact of traumatic events experienced on women's psychological health and psychosocial functioning during the perinatal period, as well as perinatal women's unmet psychological and medical service needs. A call to action for perinatal researchers and clinicians is imperative in furthering this important area of research and practicing person-centered and trauma-informed care with this population.

Assessing the Unmet Preconception Care Needs of Men in the United States by Race/Ethnicity and Nativity.

OBJECTIVE: To estimate the percentage of men in the U.S. in need of preconception care and to assess gaps in utilization of services by race/ethnicity and nativity, irrespective of intention for children, via cross-sectional analysis of 2017-2019 National Survey for Family Growth (NSFG). METHODS: The need for preconception care was defined as non-sterile men who had sexual experience and were with female partner(s) who were not sterile. Thirteen preconception care services were assessed across six domains: family planning, blood pressure, HIV, STD, weight management, and smoking cessation. Multivariable weighted analyses were performed to obtain odds ratios to assess differences in preconception care utilization among participants. RESULTS: Approximately 64% of men were estimated to need preconception care. Substantial disparities in need and service use were found across sociodemographic characteristics. Foreign-born men had significantly higher odds of not receiving three of the thirteen preconception care services, including condom use screening (aOR = 1.67; CI = 1.23-2.26), HIV advice (aOR = 1.76; CI = 1.35-2.29), and STD testing (aOR = 1.66; CI = 1.13-2.44), than U.S.-born. Hispanic men had higher odds of not receiving blood pressure (aOR = 1.39; CI = 1.09-1.79) and smoking screenings (aOR = 1.33; CI = 1.02-1.73) than White men. Black men had the highest use in six of the thirteen preconception care services. CONCLUSION: Gaps in preconception care utilization suggest a need to further explore potential drivers of disparities, specifically for Hispanic and foreign-born men. Additional research into the timing and quality of care received by men are needed to assess the scope, severity, and prevalence of unmet needs within medically underserved communities.

Barriers to service and unmet need among autistic adolescents and young adults.

LAY ABSTRACT: Prior studies have described the roadblocks, or barriers, to needed services experienced by families with young autistic children, but less research has focused on those faced by autistic adolescents and young adults. In this study, we wished to understand the barriers to service experienced by autistic adolescents and young adults and their families. We surveyed 174 caregivers of autistic youth between 16 to 30 years old. We found that caregivers who felt more caregiving burden had more difficulty accessing services for their youth. Specifically, caregivers who felt more strongly that their daily lives had been disrupted, felt more financial strain, and worried more about their youth well-being experienced more roadblocks to getting services for the youth. Male caregivers also reported fewer difficulties related to service access. Importantly, the older the youth was when they had been diagnosed with autism, the more service barriers their caregivers reported. We did not see any differences in the level of barriers experienced by youth who lived in urban versus suburban settings, or between white and non-white families. However, when youth lived with their caregivers (rather than, for example, in a group home), fewer quality-related barriers to services were reported. Finally, greater access (but not quality) barriers were linked to youth having more unmet service needs. These findings can help to reduce the barriers to service experienced by autistic adolescents and young adults and their families.

'I wish I had asked for support earlier' - Immigrant family caregivers' experiences of living with a person with dementia.

INTRODUCTION: Immigrant family caregivers are increasing worldwide, likewise the number of older people with dementia. Caring for a person with dementia is demanding, with the carer's own life put on hold. Immigrant family caregivers have been less studied. Therefore, the aim of this study was to explore immigrant family caregivers' experiences of living with an older person with dementia. METHOD: A qualitative approach was chosen, consisting of open-ended interviews analysed using qualitative content analysis. The ethical principles of the Helsinki Declaration were applied in the study, which was duly approved by a regional ethics review board. RESULTS: The content analysis resulted in three main categories: (i) the diverse roles of a family caregiver; (ii) the impact of language and culture on daily life and (iii) wish for support from society. CONCLUSIONS: Living with a person with dementia is demanding and burdensome and the consequences of working without any rest may increase social isolation and impair quality of life. Immigrants and country-born family caregivers living with a person with dementia seem to have similar care experiences, but immigrant family caregivers seem to receive help rather late due to a lack of information about the services available, language barriers and to financial reasons. A wish for support earlier on in the caring process was expressed, likewise for care services in the participants' native language. The various Finnish associations and peer support were important sources of information about support services. Together with culturally adjusted care services, these could contribute to better access to care, to quality and to equal care.

Mental health service needs and mental health of old adults living alone in urban and rural areas in China: The role of coping styles.

This study aimed to explore the level and relationship between the mental health service needs (MHSN), coping styles (CS), and mental health (MH) of old adults living alone in urban and rural, and to explore the moderating effects of coping styles. A cross-sectional study was conducted with 717 older adults living alone. The survey measured MHSN, CS, and MH. Data were analyzed using a structural equation and bootstrapping method. There were significant differences in the MHSN, CS, and MH between urban and rural old adults living alone (P < 0.05). The model of the impact of MHSN on MH in urban and rural old adults living alone showed a good fit. These findings highlighted the importance of high MHSN and positive CS as potential protective factors of mental health in old adults living alone. This provides a theoretical basis for psychological nursing for old adults living alone in the community.

Childhood experiences and needs of offspring living with paternal and maternal severe mental illness: A retrospective study in China.

OBJECTIVE: Parental mental illness is considered one of the strongest risk factors for the development of children. This study aimed to describe the adverse childhood experiences and needs of offspring living with parental severe mental illness (SMI) in China and to compare the differences in needs between offspring living with maternal SMI and those living with paternal SMI. METHOD: Overall, 381 participants, including 76 living with paternal SMI, 104 living with maternal SMI, and 201 living without parental mental illness, were enrolled. Data were collected using questionnaires from five sites in China. Differences among the three groups were compared using analysis of variance and chi-square test. Factors were extracted using exploratory factor analysis, and differences in factor scores between the paternal and maternal SMI groups were compared using the rank sum test. RESULTS: The percentages of poverty, family care, and housework were significantly higher in the paternal SMI group and maternal SMI group, compared with the control group, and those of school dropout and relationship with friends were significantly higher in the maternal SMI group (p < 0.0167). The need for stigma reduction in the maternal SMI group was significantly higher than that in the paternal SMI group (p = 0.015). CONCLUSION: Our findings highlight the importance of considering the impact of maternal and paternal SMI on child development. There is an urgent need to develop a national program to assist families with mentally ill parents to provide services for children living with parental SMI.

Service Needs of Parent Caregivers of Adolescents and Young Adults with Incurable Cancer: A Scoping Review.

Adolescent and Young Adult (AYA) oncology is an internationally recognized established subspecialty in cancer care. Dedicated programs tailored to local environments endeavor to address unique medical, psychological, cognitive, and social needs that historically, health services have been challenged to meet. In recent years there has been a growing appreciation of the challenges facing AYA with incurable cancer and their parent caregivers. While health care professionals recognize the importance of parents' involvement in the care trajectory, there is less understanding of the services needed for support. This scoping review set out to identify and describe evidence available to better understand the services and approaches required from hospital teams to address the needs of parent caregivers and to identify gaps in knowledge to inform areas for further research. The question guiding this review is: What are the service needs of parent carers of AYA with incurable cancer. Using the Arksey and O'Malley scoping review framework, 1009 studies were identified from a broad search of relevant online databases, gray literature, and reference lists of published studies. After removing duplicates and ineligible studies, 492 abstracts were screened. Of these, 421 were ineligible, and 71 articles underwent full-text review. Eight studies were included in the final review. No single study was focused exclusively on parent caregivers of AYA with incurable cancer, demonstrating a paucity of quantitative and qualitative evidence to inform practice and a need for further research in the field.