Family Care Research Articles

Family's Perceived Needs and Satisfaction with Intensive Care Services: A Questionnaire-based Prospective Observational Study.

Holistic intensive care management involves the treatment of critically ill patients in the intensive care unit (ICU) as well as catering to family psychosocial needs helping in bettering satisfaction/perception of care. There is scarce data in the Indian intensive care setting regarding the same, especially in times of increasing end-of-life practices. Our study aimed to determine the factors impacting family perception/satisfaction with intensive care. A total of 336 family bystanders of patients in ICU with more than 72 hours of stay were surveyed using family satisfaction in the ICU 24 revised (FS-ICU 24R) questionnaire. Multivariable logistic regression analysis showed that the significant factors associated with the satisfaction among bystanders of ICU patients were the treatment of patient's physical symptoms like pain/breathlessness (Adjusted OR 3.73, p = 0.003), ICU staff's approach to family's need consideration (Adjusted OR 4.44, p < 0.001), concern and care towards patients' family (Adjusted OR 2.67, p = 0.023). Participation in patient care, ICU waiting room atmosphere, and emotional support are the other factors independently associated with satisfaction with ICU care. Family satisfaction was not associated with the patient's survival (p = 0.331, Chi-square test) or the length of ICU (p = 0.328, Chi-square test) and hospital stay (p = 0.865, Chi-square test). Treatment of a patient's physical symptoms like pain, approach to family's needs consideration, and concern/care towards the patient's family are independent factors associated with optimal satisfaction among family members of ICU patients, which even takes precedence over the survival outcomes or length of ICU stay. Atri V, Bhatt MT, Chaudhuri S, Mitra A, Maddani SS, Ravindranath S. Family's Perceived Needs and Satisfaction with Intensive Care Services: A Questionnaire-based Prospective Observational Study. Indian J Crit Care Med 2024;28(5):483-494.

Midwives' and registered nurses' role and scope of practice in acute early pregnancy care services: a scoping review.

The objective of this scoping review was to investigate and describe what is reported on the role and scope of practice of midwives and registered nurses providing care for women with pregnancy complications under 20 weeks' gestation in acute clinical settings in Australia. In many high-income countries, women experiencing unexpected complications in early pregnancy attend an acute care service, such as an emergency department, rather than a maternity or obstetric unit. This service structure can impact the care women receive, and determine who provides it. Women and their partners, who are often experiencing emotional distress, have reported difficult experiences when accessing acute services, particularly emergency departments, which are not traditionally staffed by midwives. The role and scope of practice of both midwives and registered nurses providing acute early pregnancy care in most high-income countries, including Australia, is poorly reported. Documenting this area of practice is an important first step in facilitating ongoing research in this important aspect of pregnancy care. Published and gray literature that described the role and scope of practice of midwives and/or registered nurses providing care in acute early pregnancy settings in Australia were considered for this review. A scoping review of the literature was conducted following JBI methodological guidance and reported using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR) checklist. A 3-step search strategy was conducted to explore evidence from databases and search engines, gray literature sources, and selected reference lists. After screening, data were extracted from records selected for the final review, mapped, and analyzed using content analysis. The evidence reviewed (n=23) included primary research studies, conference abstracts, and gray literature, such as clinical guidance documents, academic theses, and websites from January 2008 to October 2023. The most common setting for care provision was the emergency department. Midwives' and registered nurses' roles and scope of practice in acute early pregnancy care in Australia can be summarized into 4 areas: physical care, psychosocial support, care co-ordination, and communication. Women's access to midwifery care at this time in pregnancy appears to be limited. Registered nurses, usually employed in emergency departments, have the most prominent role and scope in the provision of care for women with acute early pregnancy complications. Descriptions of midwives' practice focuses more on psychosocial support and follow-up care, particularly in early pregnancy assessment service models. This review highlights the inconsistency in midwives' and registered nurses' roles and scope in acute early pregnancy in Australia, a finding which is relevant to other international settings. Both professions could further fulfill role and scope capacity in the provision of supportive, individualized, and timely care for women and families accessing a range of acute early pregnancy services. Emergency departments are the usual practice domain of registered nurses who may be limited in terms of the scope of care they can provide to women with early pregnancy complications. Leaders of the midwifery profession should conduct further research into innovative service models that embed a role for midwives in all settings that provide care for pregnant women, regardless of gestation. Open Science Framework osf.io/7zchu.

Changes in Resources and Volunteering: A Longitudinal Study of Active Engagement Among Older Europeans.

Volunteering is an important dimension of successful aging. Although prior studies have found that personal resources such as health and financial situations are associated with volunteering, there is a lack of research exploring the relationship between resource changes and volunteering. Here, we investigated whether changes in individuals' resources were associated with volunteer engagement among older Europeans. Using data from the Survey of Health, Aging, and Retirement in Europe, collected in five waves between 2011 and 2020 across 19 countries (57,410 observations from 17,498 individuals aged 50 and above), we employed asymmetric fixed-effect ordinal regression models to investigate whether positive or negative resource changes were associated with the frequency of volunteering over time. We used three resource indicators: health, financial condition, and time availability (measured by engagement in paid work, grandparenting, and family care). Health deterioration and worsening financial condition were associated with a decreased frequency of volunteering. A transition out of weekly paid work and beginning to provide weekly grandchild care were both associated with an increased frequency of volunteering. We did not detect any further significant effects of resource changes on volunteering. Our study revealed asymmetrical associations between changes in resources and volunteering, providing new insights into their interplay. The results deepen our understanding of successful aging by emphasizing the need to consider the dynamics of all resources that either facilitate or hinder active engagements among older adults.

Burden and preparedness of care partners of people living with amyotrophic lateral sclerosis at home in Korea: A care partner survey.

The care burden of people living with amyotrophic lateral sclerosis (pALS) increases with disease progression. This study aimed to investigate the home care status and preparedness of care partners of pALS (cALS) in Korea. An online survey was conducted with family care partners of patients diagnosed with ALS for over 1 year in 2022. The data collected included care time, depression evaluated using the patient health questionnaire-9 (PHQ-9), preparedness for caregiving scale (PCS), and caregiver competence scale (CCS). Results were compared based on whether the pALS underwent a tracheostomy or not. Ninety-eight cALS of 98 pALS participated in the study, of whom 59 pALS had undergone tracheostomy. Among the cALS, 60.2% were spouses, and 34.7% were children. The cALS took care of the patients for 13 (8-20) hours/day (median, interquartile range [IQR]) on weekdays and 15 (10-24) h/day on weekends. Among the cALS, 91.8% were depressed, and 28.6% had severe depression. The median (IQR) PCS and CCS scores were low (11/32 (8-15) and 8/20 (8-11), respectively), and both were lower in those caring for patients without than with tracheostomy (p < .001 and p < .02, respectively). Most cALS (77.6%) wished to continue caring for their pALS at home. Family care partners of pALS spend more than half of each day caring for patients and are often depressed. Most cALS preferred providing care at home, but felt ill-prepared. Designing home-based medical care is necessary for pALS to thrive at home.

Perceptions of vision care following neurological impairment: a qualitative study

BackgroundVisual impairment is a common consequence of neurological impairments, and can impact a person’s ability to undertake everyday tasks, affecting their confidence and mental health. Previous qualitative research in the UK has shown inequalities to exist where patients are accessing vision care after stroke, but little is known around the experiences of accessing vision care following other neurological impairments, and a lack of national guidelines prevent standardised care planning. The aim of this qualitative study is to explore the perceptions of vision care after neurological impairment, and to identify possible inequalities and support mechanisms, where it has been possible to access vision care.MethodsUniversity ethical approval was obtained, and adults with a visual impairment as a result of a neurological impairment were offered an in-depth interview to explore their vision care experiences. Data were collected between April and November 2021 and analysed using iterative, thematic analysis (TA), informed by a social constructionist ideology.ResultsSeventeen participants were recruited. Three overarching themes were conceptualised in relation to the participants’ perception of vision care: Making sense of the visual impairment; The responsibility of vision care; and Influential factors in care quality perception.ConclusionInequalities were noted by participants, with most reporting a lack of suitable vision care offered as part of their neurological rehabilitation. Participants were thus burdened with the task of seeking their own support online, and encountered inaccurate and worrying information in the process. Participants noted changes in their identity, and the identity of their family carers, as they adjusted to their vision loss. The findings from this research highlight a need for clinicians to consider the long-term impact of vision loss after neurological impairment, and ensure patients are provided with adequate support and information, and appropriate referral pathways, alleviating this patient burden.

Evaluation of lived experience Peer Support intervention for mental health service consumers in Primary Care (PS-PC): study protocol for a stepped-wedge cluster randomised controlled trial

BackgroundThe demand for mental health services in Australia is substantial and has grown beyond the capacity of the current workforce. As a result, it is currently difficult for many to access secondary healthcare providers. Within the secondary healthcare sector, however, peer workers who have lived experience of managing mental health conditions have been increasingly employed to intentionally use their journey of recovery in supporting others living with mental health conditions and their communities. Currently, the presence of peer workers in primary care has been limited, despite the potential benefits of providing supports in conjunction with GPs and secondary healthcare providers.MethodsThis stepped-wedge cluster randomised controlled trial (RCT) aims to evaluate a lived experience peer support intervention for accessing mental health care in primary care (PS-PC). Four medical practices across Australia will be randomly allocated to switch from control to intervention, until all practices are delivering the PS-PC intervention. The study will enrol 66 patients at each practice (total sample size of 264). Over a period of 3–4 months, 12 h of practical and emotional support provided by lived experience peer workers will be available to participants. Scale-based questionnaires will inform intervention efficacy in terms of mental health outcomes (e.g., self-efficacy) and other health outcomes (e.g., healthcare-related costs) over four time points. Other perspectives will be explored through scales completed by approximately 150 family members or carers (carer burden) and 16 peer workers (self-efficacy) pre- and post-intervention, and 20 medical practice staff members (attitudes toward peer workers) at the end of each study site’s involvement in the intervention. Interviews (n = 60) and six focus groups held toward the end of each study site’s involvement will further explore the views of participants, family members or carers, peer workers, and practice staff to better understand the efficacy and acceptability of the intervention.DiscussionThis mixed-methods, multi-centre, stepped-wedge controlled study will be the first to evaluate the implementation of peer workers in the primary care mental health care sector.Trial registrationAustralian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12623001189617. Registered on 17 November 2023, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=386715

Developing a survey to measure nursing students’ knowledge, attitudes and beliefs, influences, and willingness to be involved in Medical Assistance in Dying (MAiD): a mixed method modified e-Delphi study

BackgroundMedical Assistance in Dying (MAiD) was legalized in Canada in 2016. Canada’s legislation is the first to permit Nurse Practitioners (NP) to serve as independent MAiD assessors and providers. Registered Nurses’ (RN) also have important roles in MAiD that include MAiD care coordination; client and family teaching and support, MAiD procedural quality; healthcare provider and public education; and bereavement care for family. Nurses have a right under the law to conscientious objection to participating in MAiD. Therefore, it is essential to prepare nurses in their entry-level education for the practice implications and moral complexities inherent in this practice. Knowing what nursing students think about MAiD is a critical first step. Therefore, the purpose of this study was to develop a survey to measure nursing students’ knowledge, attitudes and beliefs, influences, and willingness to be involved in MAiD in the Canadian context.MethodsThe design was a mixed-method, modified e-Delphi method that entailed item generation from the literature, item refinement through a 2 round survey of an expert faculty panel, and item validation through a cognitive focus group interview with nursing students. The settings were a University located in an urban area and a College located in a rural area in Western Canada.ResultsDuring phase 1, a 56-item survey was developed from existing literature that included demographic items and items designed to measure experience with death and dying (including MAiD), education and preparation, attitudes and beliefs, influences on those beliefs, and anticipated future involvement. During phase 2, an expert faculty panel reviewed, modified, and prioritized the items yielding 51 items. During phase 3, a sample of nursing students further evaluated and modified the language in the survey to aid readability and comprehension. The final survey consists of 45 items including 4 case studies.DiscussionSystematic evaluation of knowledge-to-date coupled with stakeholder perspectives supports robust survey design. This study yielded a survey to assess nursing students’ attitudes toward MAiD in a Canadian context.ConclusionThe survey is appropriate for use in education and research to measure knowledge and attitudes about MAiD among nurse trainees and can be a helpful step in preparing nursing students for entry-level practice.

Crowding in or Out？National Public Pension, Inter-Generational Contract, and Family Support to Empty-Nest Older Parents in Rural China

ABSTRACT Evidence to date has been inconclusive on the effects of public pension on family support to older adults, and the underlying mechanism behind such effects remains unclear. This study examines the effects of the New Rural Social Pension Scheme on family support to empty-nest older parents in rural China, where family care is traditionally favored for older adults. Using data from the China Longitudinal Aging Social Survey, the findings reveal that pension receipt promotes bidirectional financial transfers and intimate relationships between generations, thus increasing (or crowding in) children’s financial and care support to their empty-nest parents. On the other hand, receiving pensions may discourage parental care support to children and partially decrease (or crowd out) children’s financial and care support. This crowding-out effect, however, is limited and thus insufficient for counteracting the crowding-in effects from other pathways. Overall, these findings indicate that national welfare, such as pensions, can encourage family support through inter-generational contracts and intimacy, strengthening familial bonds and facilitating mutual assistance within families. For policy implications, government should prioritize improving benefit levels of public pensions to harness the caregiving potential of families and providing essential services that assist families in addressing care burdens.

Study protocol for a randomized controlled trial of supportive parents – coping kids (SPARCK)—a transdiagnostic and personalized parent training intervention to prevent childhood mental health problems

BackgroundTo meet the scientific and political call for effective prevention of child and youth mental health problems and associated long-term consequences, we have co-created, tested, and optimized a transdiagnostic preventive parent-training intervention, Supportive parents – coping kids (SPARCK), together with and for the municipal preventive frontline services. The target group of SPARCK is parents of children between 4 and 12 years who display symptoms of anxiety, depression, and/or behavioral problems, that is, indicated prevention. The intervention consists of components from various empirically supported interventions representing different theorical models on parent–child interactions and child behavior and psychopathology (i.e., behavioral management interventions, attachment theory, emotion socialization theory, cognitive-behavioral therapy, and family accommodation intervention). The content and target strategies of SPARCK are tailored to the needs of the families and children, and the manual suggests how the target strategies may be personalized and combined throughout the maximum 12 sessions of the intervention. The aim of this project is to investigate the effectiveness of SPARCK on child symptoms, parenting practices, and parent and child stress hormone levels, in addition to later use of specialized services compared with usual care (UC; eg. active comparison group).MethodsWe describe a randomized controlled effectiveness trial in the frontline services of child welfare, health, school health and school psychological counselling services in 24 Norwegian municipalities. It is a two-armed parallel group randomized controlled effectiveness and superiority trial with 252 families randomly allocated to SPARCK or UC. Assessment of key variables will be conducted at pre-, post-, and six-month follow-up.DiscussionThe current study will contribute with knowledge on potential effects of a preventive transdiagnostic parent-training intervention when compared with UC. Our primary objective is to innovate frontline services with a usable, flexible, and effective intervention for prevention of childhood mental health problems to promote equity in access to care for families and children across a heterogeneous service landscape characterized by variations in available resources, personnel, and end user symptomatology.Trial registrationClinicalTrials.gov ID: NTCT05800522

Effects of teleworking on wellbeing from a gender perspective: a systematic review

Telework has been seen as a crucial tool for enhancing work-home balance, and potentially boosting employee wellbeing. However, contradictory findings highlight the necessity of integrating a gender perspective. This study aims to find out the psychosocial effects of teleworking on wellbeing from a gender perspective through a systematic review since 2010 till 2022. We used PRISMA, SPICE and PICOS models to finally select 37 studies, considering both quantitative and qualitative design perspectives. More than half of the reviewed articles (22) found that telework has negative effects on work-family interaction and work-family balance; and, as expected, these negative effects were greater for women, such as increasing dissatisfaction with work, life and free time. Studies reviewed show that women teleworkers report increased work-family conflict and traditional gender roles relating to household and family care responsibilities. We have found also that 10 studies observed positive effects of telework for both men and women, whilst five papers report both positive and negative effects on wellbeing. Lastly, we discuss the advantages and disadvantages of teleworking from a gender perspective considering the results we have found.

Health Problems Faced by Elderly and Services Offered by Old Age Home/Aafiat, Lahore, Social Welfare Department, Punjab

The demand for increased physical as well as psychological healthcare facilities is driving up concerns about an ageing population, especially in resource-constrained countries. Older adults in Pakistan experience insecurity due to a number of social and economic causes. In such situations, when conventional family care is unavailable or the elderly lack resources like housing, old age homes offer services to the elderly. The present quantitative study aimed to ascertain the demographic profile of the elderly population residing in an old age home or Aafiat, investigate the factors that contribute to their residence in an old age home, examine the physical and mental health challenges experienced by those receiving residential care, and find out the elderly population's satisfaction level with the services provided by the old age home. However, this article merely addressed the issues with older people's physical and mental health and how satisfied they were with the services and facilities the old age home offered. It was a cross-sectional study, and in order to gather data, interviews were conducted with each of the 25 inmates who were present at the Lahore old age home/Aafiat. According to the findings, the majority of respondents expressed high satisfaction with the level of services received; however, the data revealed that the elderly in the old age home experienced several challenges linked to their physical and mental health.

Availability of family care resources, bathing assistance and toileting assistance among older adults with functional limitations: an evidence-based study from China

BackgroundAn aging population has contributed to an increasing prevalence of functional limitations among older adults. Family support plays a crucial role in toileting and bathing assistance. Yet, the relationship between availability of family care resources and such actual assistance remains insufficiently explored. Our study aims to describe availability of family care resources and identify the association between availability of family care resources and toileting assistance or bathing assistance.MethodsThis study employed a cross-sectional analysis of data from the 2018 National Survey of the China Health and Retirement Longitudinal Study (CHARLS). The availability of family care resources was assessed using measurements of spouse availability, adult child availability, and living arrangement. Bathing assistance and toileting assistance were measured based on self-reported receipt of such assistance. Descriptive statistics were used to depict the overall and subgroup situation of availability of family care resources. Multivariable logistic models were employed to investigate the relationship between availability of family care resources and the receipt of toileting assistance or bathing assistance.ResultsAmong the sample of older adults with functional limitations, 69% had a spouse, 63% had at least one adult child, and 80% resided with family members. Among those with bathing disability, 13% reported lacking bathing assistance, and among those with toileting disability, 54% reported lacking toileting assistance.Participants with 1-2 adult children had lower odds of receiving toileting assistance (OR: 0.28, 95% CI: 0.09, 0.91, p= 0.034) compared to those with three or more adult children. Spouse availability and living arrangement did not exhibit statistically significant associations with toileting assistance. Participants without a spouse had lower odds of receiving bathing assistance (OR: 0.27, 95% CI: 0.09-0.78, p= 0.016) in comparison to those with a spouse; however, adult child availability and living arrangement did not display statistically significant associations with bathing assistance.ConclusionThe present findings suggest a gap in family commitment when it comes to assisting older adults with functional limitations in bathing/toileting. To address this, policymakers are encouraged to prioritize the implementation of proactive mechanisms for identifying family caregivers, alongside incentives to enhance their engagement in practical caregiving activities. Furthermore, it is crucial to emphasize the prioritization of affordable and easily accessible formal toileting/bathing assistance options for older adults who lack sufficient family care resources.

The lived experience of mental disorders in adolescents: a bottom-up review co-designed, co-conducted and co-written by experts by experience and academics.

We provide here the first bottom-up review of the lived experience of mental disorders in adolescents co-designed, co-conducted and co-written by experts by experience and academics. We screened first-person accounts within and outside the medical field, and discussed them in collaborative workshops involvingnumerous experts by experience - representing different genders, ethnic and cultural backgrounds, and continents - and their family members and carers. Subsequently, the material was enriched by phenomenologically informed perspectives and shared with all collaborators. The inner subjective experience of adolescents is described for mood disorders, psychotic disorders, attention-deficit/hyperactivity disorder, autism spectrum disorders, anxiety disorders, eating disorders, externalizing disorders, and self-harm behaviors. The recollection of individuals' past histories also indexes the prodromal (often transdiagnostic) features predating the psychiatric diagnosis. The experience of adolescents with mental disorders in the wider society is described with respect to their family, their school and peers, and the social and cultural context. Furthermore, their lived experience of mental health care is described with respect to receiving a diagnosis of mental disorder, accessing mental health support, receiving psychopharmacological treatment, receiving psychotherapy, experiencing peer support and mental health activism, and achieving recovery. These findings can impact clinical practice, research, and the whole society. We hope that this co-designed, co-conducted and co-written journey can help us maintain our commitment to protecting adolescents' fragile mental health, and can help them develop into a healthy, fulfilling and contributing adult life.

Australian Indigenous people and treatment decision-making at end-of-life

This article analyses Australian law and literature to identify the key cultural and legal considerations that can arise in medical treatment decision-making with Aboriginal and Torres Strait Islander peoples at the end-of-life. The authors explore how First Nation peoples’ cultural values, connection to Country, family, and community, history, and health care experiences, intersect with end-of-life medical treatment laws, providing valuable insights for lawyers, policymakers and health practitioners.

"I am adhering to HIV treatment so that I can live to support her": A qualitative study of upward intergenerational support in South Africa.

Intergenerational family care, which was upended by the HIV epidemic in sub-Saharan Africa (SSA), may return to a pre-HIV era arrangement as access to antiretroviral therapy (ART) expands and treated adults can once again provide support for older household members. Empirical research has demonstrated positive 'spillover effects' of ART uptake from treated adults to younger generations, yet much less is known about the nature and breadth of such effects to older generations. This study explores the role and lived experiences among adults who take up ART and those of an older generation with whom they live. We conducted a qualitative study consisting of semi-structured interviews (n = 46) embedded in the Agincourt Health and Demographic Surveillance System (HDSS) in rural South Africa, between July and September 2022. We purposefully sampled two respondent categories: (i) young or middle-aged adults on ART (aged 18-59 years old); and (ii) older adults (aged ≥60 years old) who were affiliated with a young or middle-aged adult on ART. We used thematic content analysis to extract, code, and categorise relevant text by types of upward spillover effects from ART in younger adults to older adults. Quantitative data was extracted from the existing Agincourt HDSS database and matched to qualitative interview data based on Clinic link unique identifiers of study participants. Mean age was 41 years among young or middle-aged adults (n = 29) and 72 years among older adults (n = 17). Among younger adults, time on ART ranged from five months to more than 21 years. Both young or middle-aged adults on ART and older adults reported positive spillover effects for older adults across five main tiers: caregiving, financial support, physical and mental health, living arrangements and household relationships, and stigma and reputation. Spillover challenges included financial costs and caregiving responsibilities following ART initiation of young or middle-aged adults, although these additional caregiving responsibilities were generally not perceived as particularly burdensome. ART is likely to benefit older adults in South Africa whose families are affected by HIV. This study identified a wide range of perceived spillover effects from ART in younger adults to older adults, including improvements to upward intergenerational support. These qualitative findings offer a guide to researchers, policymakers, and donors to capitalise on the broader societal effects of a large-scale health intervention to further support family structures and meet the needs of a growing older population.

Lived experiences of end-of-life care at home in the UK: a scoping review of qualitative research

&lt;b&gt;Background&lt;/b&gt; Home is the preferred place of care and death for most people with advanced illness. &lt;b&gt;Aim&lt;/b&gt; To examine and describe the published qualitative literature on the lived experiences of dying at home, to characterise the participants and their contexts and to identify key gaps, with a view to informing future research. &lt;b&gt;Design and Setting&lt;/b&gt; A scoping literature review in accordance with the PRISMA-ScR guideline. &lt;b&gt;Method&lt;/b&gt; The online databases CINAHL and MEDLINE were searched with relevant MeSH terms and keywords to identify primary qualitative research published between 2010 and 2022, exploring the lived experience of patients, families and/or unpaid carers in the United Kingdom. &lt;b&gt;Results&lt;/b&gt; In total, 462 papers were screened, 58 underwent full text review and 13 studies were retained in the final set. All studies explored the experience of bereaved family and/or unpaid carers and only one study interviewed a dying person. Where specified, the majority of experiences related to deaths from cancer, many with specialist palliative care team involvement. Included papers yielded a breadth of diverse findings, with the most common subject themes relating to the availability and quality of care and support for families and carers. &lt;b&gt;Conclusion&lt;/b&gt; There is limited published evidence exploring lived experiences of end-of-life care at home and this constrains the extent to which community services can be evidence-informed in their design and delivery. More research is needed to examine the first-hand experiences of people who are dying at home, particularly for those with non-cancer conditions and where specialist services are not involved.

Safeguarding carers: literature review on what is known about carers who are abused by the people they provide care for

Safeguarding carers: literature review on what is known about carers who are abused by the people they provide care for

Using a co-design methodological approach to optimize perioperative nursing care for older adult patients from ethnically diverse backgrounds: a study protocol

ABSTRACT This article outlines the use of a co-design methodological approach aimed at optimizing perioperative care experiences for ethnically diverse older adults and their family carers. The research involved three phases. In Phase 1, the foundation was established with the formation of a Core Advisory Group comprising key informants, including health consumers. This initial phase focused on forming relationships and conducting a literature review to inform subsequent stages of the research. Phase 2 progressed to data collection, where a qualitative survey on perioperative experiences was conducted. Semi-structured interviews were held with patients, their family carers, and perioperative staff. Phase 3 advanced the co-design process through a workshop involving patients, family carers, perioperative staff, and key stakeholders. Workshop participants collaborated on potential practice changes, proposing strategies for future clinical implementation. While data analysis and reporting for Phases 2 and 3 are forthcoming, the continued involvement of the Core Advisory Group ensures ongoing consensus-building on health consumer needs. This methodology article adopts a prospective stance, with findings to be presented in subsequent scholarly works. Use of this methodology will help to determine how the use of a co-design approach may impact the development of culturally responsive perioperative nursing care for those from ethnically diverse communities.

Relational solidarity and conflicting ethics in dementia care in urban India.

Using the concept of relational solidarity, we examine how autonomy, equality, dignity, and personhood are practiced in the care of people living with dementia at home in urban India. Video interviews with 19 family carers and 25 health providers conducted in English, Hindi, and Kannada in Bengaluru between March to July 2022. Data were translated into English and thematically analyzed. Family carers and providers unanimously agreed that people with dementia should be respected and cared for. Concurrently, they perceived people with dementia as being 'like a kid' and used the analogy of a parent-child relationship to understand their care responsibilities. This analogy informed how ethical principles such as personhood and equality were reframed in the relationships between family carers and people with dementia, as well as how carers and providers maintained the safety but undermined the autonomy of people with dementia through restricting their movements inside and outside the home. There can be relational solidarity in dementia care at home in urban India but also contradictions in the interpretations and applications of the ethical principles of autonomy, equality, dignity, and personhood. As such, a more organic, grassroots model of ethical practice is needed to frame care and provide material support to families in India.

Patterns of Social Needs Predict Quality-of-Life and Healthcare Utilization Outcomes in Patients from a Large Hospital System.

Unmet social needs (SNs) often coexist in distinct patterns within specific population subgroups, yet these patterns are understudied. To identify patterns of social needs (PSNs) and characterize their associations with health-related quality-of-life (HRQoL) and healthcare utilization (HCU). Observational study using data on SNs screening, HRQoL (i.e., low mental and physical health), and 90-day HCU (i.e., emergency visits and hospital admission). Among patients with any SNs, latent class analysis was conducted to identify unique PSNs. For all patients and by race and age subgroups, compared with no SNs, we calculated the risks of poor HRQoL and time to first HCU following SNs screening for each PSN. Adult patients undergoing SNs screening at the Mass General Brigham healthcare system in Massachusetts, United States, between March 2018 and January 2023. SNs included: education, employment, family care, food, housing, medication, transportation, and ability to pay for household utilities. HRQoL was assessed using the Patient-Reported Outcomes Measurement Information System Global-10. Six unique PSNs were identified: "high number of social needs," "food and utility access," "employment needs," "interested in education," "housing instability," and "transportation barriers." In 14,230 patients with HRQoL data, PSNs increased the risks of poor mental health, with risk ratios ranging from 1.07(95%CI:1.01-1.13) to 1.80(95%CI:1.74-1.86). Analysis of poor physical health yielded similar findings, except that the "interested in education" showed a mild protective effect (0.97[95%CI:0.94-1.00]). In 105,110 patients, PSNs increased the risk of 90-day HCU, with hazard ratios ranging from 1.09(95%CI:0.99-1.21) to 1.70(95%CI:1.52-1.90). Findings were generally consistent in subgroup analyses by race and age. Certain SNs coexist in distinct patterns and result in poorer HRQoL and more HCU. Understanding PSNs allows policymakers, public health practitioners, and social workers to identify at-risk patients and implement integrated, system-wide, and community-based interventions.