Social capital for carers of patients with advanced organ failure: a qualitative exploration of stakeholders' perspectives.

BACKGROUND: Carers of patients with advanced organ failure (AOF) experience a tremendous caregiving burden. Social capital utilizes the internal strength of a community to support its members and may provide carers with comprehensive support. This study aimed to identify the different sources of social capital that can support carers of patients with AOF from the perspectives of stakeholders. METHOD: A descriptive qualitative study was conducted in community settings from April 2021 to May 2022. Stakeholders from medical social work departments, self-help groups, and non-governmental organizations were recruited, while some community members were invited through online media platforms. Individual semi-structured interviews were conducted using an interview guide. Interview transcripts were analyzed using a qualitative description approach. In total, 98 stakeholders, including 25 carers, 25 patients, 24 professionals, and 24 community members, were recruited using purposive and snowball sampling. RESULTS: Six categories about social capital for carers emerged, namely, carer attributes, the community, social care services, healthcare services, information, and policies. While the attributes of carers and their relationships with care recipients had a significant influence on caregiving, support from different groups in the community, such as neighbors and employers, was valued. Good communication of information about caregiving and social services was emphasized as being helpful by carers and other stakeholders. While carers presented a need for various healthcare and social care services, several features of these services, including their person-centeredness and proactive reach, were deemed useful. At the societal level, policies and research on comprehensive supportive services are warranted. The different sources of social capital constitute a multi-layer support system in the community. CONCLUSION: Carers can utilize personal attributes, interpersonal relationships, community resources, and societal contexts to enhance their caregiving. While this system can serve as a framework for building carer-friendly communities, interventions may be required to strengthen some aspects of social capital.

Spousal support, parent-nurse partnership and caregiver burden among parents of children with chronic diseases: A cross-sectional study.

AIM: To examine the effects of spousal support and parent-nurse partnership on caregiver burden of parents of children with chronic disease. BACKGROUND: With the trend of increasing the global number of children with chronic diseases, the parental caregiver burden has become increasingly prevalent. DESIGN: Cross-sectional study. METHODS: The study participants included 115 parents of children diagnosed with chronic disease at a general hospital in South Korea. The study duration was 4 June 2021-30 April 2022. Self-reported measures included the parent-nurse partnership scale, the Korean version of the Parenting Alliance Inventory and the family caregiver burden scale. T-tests, ANOVA, Pearson's correlation coefficients and hierarchical linear multiple regression were conducted using IBM SPSS version 26.0. This study followed STROBE guideline. RESULTS: Parental caregiver burden was significantly negatively associated with spousal support and parent-nurse partnership. Factors significantly influencing caregiver burden were parental alcohol consumption; child's inherited metabolic disease, cardiovascular disease, disease relating to haematological tumours or kidney disease diagnosis; child's health perceived as poor by parents; child's dependency perceived as high by parents; hospitalization recency; and low spousal support. These factors accounted for 65% of caregiver burden. CONCLUSION: Parental caregiver burden was related to spousal support and parent-nurse partnership, but the primary factor affecting caregiver burden was spousal support. RELEVANCE TO CLINICAL PRACTICE: The results highlighted the role of healthcare professionals in educating parents of children with chronic diseases to facilitate spousal support and have implications for nursing and community-based interventions to reduce parental caregiver burden. Furthermore, they underlined that policymakers and other stakeholders should pay attention to the parental caregiver burden through government-based, family-centered strategies. PATIENT OR PUBLIC CONTRIBUTION: Parents of children with chronic disease were recruited to perform the self-administered survey in the phase of data collection.

"Now You Get to See Me": Black Women Healthcare Professionals' Experiences in Sister Circles During the Double Pandemic.

In 2020, the COVID-19 pandemic impacted the world through the necessity of mask mandates and stay-at-home orders, while marginalized communities continued to grapple with disproportionate outcomes of the pandemic due to systemic racism. Hence, some had to live in a double pandemic, such as minoritized healthcare professionals on the frontlines addressing the uncertainties of the health crisis. Importantly, Black women healthcare professionals relied upon sister circles as a mental health mechanism. Sister circles are support groups for and by Black women and are often informally formed within contexts such as education, work, and recreation. This qualitative study deepens the understanding of how during the double pandemic sister circles in the United States created a space for Black women healthcare professionals to support each other in managing stress, navigating workspaces, and sustaining their personal lives. Fifteen participants across different health professions, including nursing, social work, and therapy, participated in one-time interviews and focus groups to share their experiences as members of a sister circle. Four salient themes were: (1) mental health support, (2) mutual understanding, (3) guidance on how to engage in salary negotiations, and (4) professional knowledge. Additionally, the findings indicate that sister circles provided them a space for mental health support, rooted in mutual understanding, along with offering advice on salary negotiations and advancing their overall professional knowledge.

Association between occupational burnout and psychological symptoms among Chinese medical staff: moderating role of social support.

This study aimed to examine the association between occupational burnout and psychological symptoms among Chinese medical staff, assuming social support to play a moderating role in the aforementioned relationship. The survey was conducted online from May 1 to June 28, 2022, and the questionnaires were distributed and retrieved through a web-based platform. The final sample was comprised of 1461 Chinese medical staff in this cross-sectional study. Several multiple linear regressions were performed to analyze the data. After controlling for potential confounding factors, all three dimensions of occupational burnout were associated with poorer psychological symptoms. Emotional exhaustion (ß = 0.33; 95% confidence interval [CI], 1.018, 1.479) had the strongest association with psychological symptoms, followed by depersonalization and diminished personal accomplishment. Moreover, medical staff with higher levels of friend support (ß = -0.11; 95% CI, -4.063, -0.573) and significant other support (ß = -0.10; 95% CI, -3.965, -0.168) were less likely to suffer from psychological symptoms when faced with occupational burnout. The results suggested that interventions aimed at lessening occupational burnout and boosting social support can be an effective way to promote the psychological health of medical staff.

Relative's suggestions for improvements in support from health professionals before and after a patient's death in general palliative care at home: A qualitative register study.

INTRODUCTION: The efforts of relatives in providing palliative care (PC) at home are important. Relatives take great responsibility, face many challenges and are at increased risk of poor physical and mental health. Support for these relatives is important, but they often do not receive the support they need. When PC is provided at home, the support for relatives before and after a patient's death must be improved. This study aimed to describe relatives' suggestions to improve the support from health professionals (HPs) before and after a patient's death in general PC at home. METHODS: This study had a qualitative descriptive design based on the data from open-ended questions in a survey collected from the Swedish Register of Palliative Care. The respondents were adult relatives involved in general PC at home across Sweden. The textual data were analysed using thematic analysis. RESULTS: The analysis identified four themes: (1) seeking increased access to HPs, (2) needing enhanced information, (3) desiring improved communication and (4) requesting individual support. CONCLUSIONS: It is important to understand and address how the support to relatives may be improved to reduce the unmet needs of relatives. The findings of this study offer some concrete suggestions for improvement on ways to support relatives. Further research should focus on tailored support interventions so that HPs can provide optimal support for relatives before and after a patient's death when PC is provided at home.

Help-Seeking Preferences and Influencing Factors Among Chinese Nurses Exposed to COVID-19: A Person-Centered Approach.

PURPOSE: This study aimed to explore help-seeking preference categories and crucial influencing factors among community nurses exposed to COVID-19 in China using a new person-centered approach. DESIGN: A cross-sectional design including an online self-reported questionnaire survey was used. METHODS: A total of 667 nurses who participated in COVID-19 prevention and control work were recruited. Latent class analysis and logistic regression were used to analyze the data using Mplus and SPSS. FINDINGS: Two latent classes of help-seeking preferences were identified: high help-seeking preferences (33.58%) and low help-seeking preferences (66.42%). Most sampled nurses had relatively low help-seeking preferences when facing psychological threats during COVID-19. Logistic regression showed that career duration, perceived social support, online help-seeking intention, and social media exposure negatively affected low help-seeking preferences. CONCLUSIONS: Career duration, perceived social support, online help-seeking intention, and social media exposure could be key factors influencing help-seeking preferences among Chinese nurses exposed to public emergencies. It is necessary to implement relevant intervention measures, such as focusing on nurses whose career durations are shorter, improving nurses' perceived social support, strengthening positive media publicity, and developing comprehensive online mental health services that promote nurses' help-seeking preferences and behaviors to reduce mental illness during public health emergencies. CLINICAL EVIDENCE: Help-seeking preferences are relatively low among Chinese nurses during public emergencies. Based on the major influencing factors of help-seeking preferences, including social support and social media exposure, more interventions must be developed for prompting psychological help-seeking intentions among Chinese nurses.

Nurses' organizational climate of perceived organizational support and its relationships with psychosocial working conditions and psychological contracts: A longitudinal questionnaire study.

OBJECTIVE: The aim of the present study was to investigate the longitudinal relationships between nurses' organizational climate of perceived organizational support (POS-climate) and their psychosocial working conditions and psychological contracts. METHODS: A two-wave longitudinal cohort questionnaire study was carried out among registered nurses employed within six hospitals in two regions in Sweden (n = 711). Two cross-lagged panel models were tested after ensuring scalar factorial invariance of the measurement models. The first model investigated longitudinal relationships between psychosocial working conditions and the POS-climate, while the second model investigated such relationships between the psychological contracts and the POS-climate. RESULTS: The results indicated that influence at work and an ideology-infused psychological contract had positive effects on the nurses' POS-climate. CONCLUSIONS: These results highlight the importance of providing nurses with such influence, and of a shared ideology within the entire health-care organization, centered on the ethical values of the health-care professions.

Caregivers' concerns through health professionals' eyes.

OBJECTIVES: Advancements in medicine and science have enabled more and more people to live longer with a chronic medical condition, namely cancer. Nevertheless, the palliative care (PC) approach continues to be introduced and incorporated later in the lives of patients and families dealing with such conditions. Thus, the need for individuals to care for this population in our society is increasing, giving rise to the so-called "informal caregivers." The present study intends to examine the main obstacles faced by informal caregivers taking care of a cancer patient receiving PC based on what health professionals working in these settings perceive and write down. To achieve this goal, the written files of 2 Portuguese palliative care institutions were analyzed. METHODS: An inductive thematic analysis was conducted, focusing on the contact between health professionals and family caregivers and based on the notes taken by health professionals. RESULTS: Three main overarching themes were identified: (1) burden, (2) intra-family impact of the illness, and (3) network vulnerabilities. Included in this are the emphasis on the role of the family and social support, the high levels of psychological morbidity and caregiver burden present over this period, and a great need for information about the illness. SIGNIFICANCE OF RESULTS: This study provided a broader awareness regarding the daily struggle experienced by family caregivers, particularly those who juggle between "roles." It is vital to understand the scope of the obstacles experienced by caregivers during the terminal phase of their loved one's illness, given how important it is to address the family's needs. Future studies and practitioners should consider these observations and topics when considering new approaches for this population, as they ought to be quite focused and short in time in order to meet people's needs.

[Sociotechnical innovations for caring communities : Conditions for success in participatory and integrative technology development]. / Soziotechnische Innovationen für Sorgegemeinschaften : Gelingensbedingungen für partizipative und integrative Technikentwicklung.

The increasing need for nursing support in the home environment is accompanied by a decline in the willingness and possibilities for family care (among other things, due to social fragmentation and individualization). New forms of social support networks (caring communities) are therefore needed in which professional players collaborate together with informal caregivers and volunteer helpers. In this context, digitalization can be an instrument that can support the design and coordination of care arrangements for older people at the sociospatial level; however, a fundamental prerequisite is that the corresponding technologies are developed in a participatory manner and integrated into existing structures. This means not only that the needs and requirements of future users are comprehensively included in the developmental process but also that they become active co-decision makers. Furthermore, the developed technology should be oriented to established care structures and sociospatial conditions. This conceptual contribution addresses these two requirements and uses a concrete case study from a participatory technology development project to show how sociotechnical innovations for and with caring communities can be developed, implemented and made usable in such a way that they become sustainably effective.

[Thadeo, a listening service for caregivers]. / Thadeo, un service d'écoute pour les soignants.

Caregivers, like all working people, can encounter difficulties in the course of their professional activities. These difficulties, compounded by the particularities of caregiving practice, can lead to situations of isolation, overwork, exhaustion, disagreement and even ethical dilemmas in complex situations. Thadeo's free listening service offers support to caregivers who need it.

Health economic evaluations of interventions for supporting adult carers in the UK: a systematic review from the NICE Guideline.

BACKGROUND: Policy making increasingly needs cost-effectiveness evidence to inform resource allocation. The objective of this review is to identify and to investigate evidence evaluating the cost-effectiveness of interventions aimed to support adult carers, drawing on the National Institute for Health and Care guideline on Supporting Adult Carers. METHODS: The protocol of the review was aimed to identify the economic studies published from 2003 onwards on all types of interventions for supporting adult carers. The applicability to the review and methodological quality of included economic evaluations were assessed using pre-established checklists specified in the National Institute for Health and Care (NICE) manual for developing guidelines. RESULTS: Our search yielded 10 economic evaluations. The main types of strategies evaluated were psychological and emotional support, training, and education support interventions. We found that the interventions more likely to be cost-effective were usually tailored to the specific carers' circumstances and delivered face-to-face and were multi-component in nature, including elements of psycho-education, training, psychological and practical support. The narrative synthesis of results indicated a wide variation in cost-effectiveness findings and methodological quality. CONCLUSIONS: This article indicates that systematic reviews of economic evaluations can be considered as an appropriate means to support decision makers in allocating health and social care resources. Given the high economic and social impact of unpaid caring, and based on the research gaps identified, we recommend that future economics research should be targeted on interventions for identifying carers; and programs for providing carers with support and advice to help them to enter, remain in or return to paid work.

Caregiving stress among family caregivers of older adults living with disabilities in China.

OBJECTIVES: This study aimed to describe caregiving stress among family caregivers of Chinese older adults living with disabilities, and explore how care intensity, financial expenses, and care difficulties are associated with caregiving stress. METHODS: Data of 220 older adult-caregiver dyads were collected from 6 urban districts and 6 rural counties from Shandong province, China. Descriptive analyses and multivariate ordinal logistic regression analyses were performed. RESULTS: Family caregivers providing nine or more hours of care per day reported higher caregiving stress than those who provided fewer than nine hours. Caregivers who experienced insufficient care abilities, economic hardships, or time conflicts were more likely to report caregiving stress. Financial support provided to older adults was not associated with caregiving stress. CONCLUSIONS: Family caregivers of Chinese older adults with disabilities are experiencing excessive caregiving stress. Social support groups and China's long-term care insurance system should be promoted to better assist family caregivers.

An integrated mixed methods approach to clarifying delivery, receipt and potential benefits of CHW-facilitated social support in a health promotion intervention.

BACKGROUND: Social support plays a critical role in physical and emotional health, making it an important component of community health worker (CHW) health promotion interventions. Different types of support operate in different ways, however, and the relationship between the nature of CHW support and the subsequent health benefit for their clients is not well understood. METHODS: This paper describes an integrated mixed methods study of the emotional, informational, appraisal and tangible support CHWs provided to Latinx community members residing in three US-Mexico border communities. Using a cohort (n = 159) from a CHW community-based intervention, we identify and describe four clusters of social support in which participants are characterized by life situations that informed the types of social support provided by the CHW. We examine the association between each cluster and client perceptions of social support over the 6-month intervention. RESULTS: CHWs provided emotional, appraisal, informational and tangible support depending on the needs of participants. Participants who received higher levels of emotional support from the CHW experienced the greatest post intervention increase in perceived social support. CONCLUSIONS: Study findings suggest that CHWs may be adept at providing non-directive social support based on their interaction with a client rather than a health outcome objective. Health promotion interventions should allow CHWs the flexibility to tailor provision of social support based on their assessment of client needs.

A Community Health Worker-Led Community-Clinical Linkage Model to Address Emotional Well-Being Outcomes Among Latino/a People on the US-Mexico Border.

INTRODUCTION: Compared with their non-Hispanic White counterparts, Latino/a people have limited access to health resources that might improve their emotional well-being. Interventions that prioritize the Latino/a population, address social determinants of health, and decrease health disparities are needed. The objective of this study was to describe a community-clinical linkage intervention led by community health workers (CHWs) in 3 Latino/a populations along the US-Mexico border. METHODS: Researchers at the Arizona Prevention Research Center conducted the Linking Individual Needs to Community and Clinical Services (LINKS) study during 2017-2018. Clinic-based CHWs referred participants to community-based CHWs who met with participants monthly for 6 months to assess participant needs, provide support for emotional well-being, and link them to resources. Two community-based CHWs collaborated to maximize participant care; they also administered an emotional well-being questionnaire at baseline and at 3-month and 6-month follow-up. We estimated changes in emotional well-being outcomes. RESULTS: Scores for social support, perceived hopefulness, and quality-of-life measures among 189 LINKS participants increased significantly during the study period, especially among men and participants with low baseline scores. For each of the 3 outcomes, the standardized change was approximately 0.28 per 3 months of intervention, a decrease of more than half an SD (0.56) during 6 months of follow-up. CONCLUSION: A CHW-led community-clinical linkage intervention can result in positive emotional well-being outcomes. We encourage policy makers, funders, and public health practitioners to further investigate such interventions as a solution to reduce disparities in emotional well-being.

Determinants of overburdening among informal carers: a systematic review.

BACKGROUND: The world's population is ageing, resulting in rising care demands and healthcare costs, which in turn lead to a shift from formal to informal care. However, not only is the number of potential informal carers fast decreasing, but also informal caregivers are experiencing a higher caregiver burden. This literature review aims to synthesize the literature on the common determinants of caregiver burden in Western countries, to help ensure future continuation of informal care in the home context, and to improve or sustain the quality of life of caregivers and patients alike. METHOD: A systematic review of peer-reviewed articles included in PubMed, Scopus, and/or PsychInfo was conducted. RESULTS: Seventeen articles were included. The most important predictors were the duration of caregiving and the patient's dependency level, in terms of both physical and mental dependency stemming from decreased cognitive capacity or behavioural problems. Some specific illnesses and role conflicts or captivity also increased caregiver burden, whereas social support lowered it. Being a female caregiver or having an adult-child relationship led to a higher burden. CONCLUSIONS: The most important predictors of caregiver burden are the duration of caregiving and the patient's dependency level. In addition, the patient's behavioural problems and cognitive capacity determine dependency level, and thus care burden. Interventions to relieve burden need to be adapted to the illness trajectory of specific diseases and corresponding needs for social support for both the recipient and the caregiver. Changing role expectations, leading to men being more involved, could reduce the disproportionately high burden for women.

The patient at the centre: evidence from 17 European integrated care programmes for persons with complex needs.

BACKGROUND: As the prevalence of multi-morbidity increases in ageing societies, health and social care systems face the challenge of providing adequate care to persons with complex needs. Approaches that integrate care across sectors and disciplines have been increasingly developed and implemented in European countries in order to tackle this challenge. The aim of the article is to identify success factors and crucial elements in the process of integrated care delivery for persons with complex needs as seen from the practical perspective of the involved stakeholders (patients, professionals, informal caregivers, managers, initiators, payers). METHODS: Seventeen integrated care programmes for persons with complex needs in 8 European countries were investigated using a qualitative approach, namely thick description, based on semi-structured interviews and document analysis. In total, 233 face-to-face interviews were conducted with stakeholders of the programmes between March and September 2016. Meta-analysis of the individual thick description reports was performed with a focus on the process of care delivery. RESULTS: Four categories that emerged from the overarching analysis are discussed in the article: (1) a holistic view of the patient, considering both mental health and the social situation in addition to physical health, (2) continuity of care in the form of single contact points, alignment of services and good relationships between patients and professionals, (3) relationships between professionals built on trust and facilitated by continuous communication, and (4) patient involvement in goal-setting and decision-making, allowing patients to adapt to reorganised service delivery. CONCLUSIONS: We were able to identify several key aspects for a well-functioning integrated care process for complex patients and how these are put into actual practice. The article sets itself apart from the existing literature by specifically focussing on the growing share of the population with complex care needs and by providing an analysis of actual processes and interpersonal relationships that shape integrated care in practice, incorporating evidence from a variety of programmes in several countries.

Rural-Urban Differences in Roles and Support for Community Health Workers in the Midwest.

The Patient Protection and Affordable Care Act supports the integration of community health workers (CHWs) into the health care workforce, but little is known about integration and current roles of CHWs among employers in community settings. This analysis of 97 employers described the roles of CHWs in Nebraska and found significant differences between CHWs practicing in rural and urban areas in organization types employing CHWs, funding sources, and minority populations served. The findings suggest that the utility of CHWs is widely recognized among employers, but deliberate support will be needed to better define the roles of CHWs to meet the needs of the increasingly diverse demographic.

Health worker text messaging for blended learning, peer support, and mentoring in pediatric and adolescent HIV/AIDS care: a case study in Zimbabwe.

BACKGROUND: In sub-Saharan Africa, shortages of trained healthcare workers and limited resources necessitate innovative and cost-effective approaches for training, supervising, and mentoring. This qualitative case study describes participants' and trainers' perspectives and experiences with a text messaging component of a blended training course in HIV counseling and testing in Zimbabwe, using minimal resources in terms of staff time and equipment requirements. This component included a whole-group discussion forum as well as two-person partner discussions designed to promote reflection and analysis, teamwork, and active learning. CASE PRESENTATION: The Ministry of Health and Child Care (MoHCC) of Zimbabwe collaborated with the International Training and Education Center for Health (I-TECH) on adaptation of a 5-day in-service training in HIV Testing Services for Children and Adolescents. The new 7-week blended format included in-person sessions, tablet-based self-study, and discussions using the text messaging application, WhatsApp. Between August 2016 and January 2017, 11 cohorts (293 participants in total) were trained with this new curriculum, incorporating text messaging to support peer-to-peer and work-based education. Data collected included training participants' feedback, key informant interviews with the training team, and thematic analysis of WhatsApp messages from full-cohort discussions and a sampling of one-to-one partner discussions. A total of 293 healthcare workers from 233 health facilities across all provinces in Zimbabwe completed the blended learning course. Participants strongly endorsed using WhatsApp groups as part of the training. In the whole-group discussions, the combined cohorts generated over 6300 text messages. Several categories of communication emerged in analysis of group discussions: (1) participants' case experiences and questions; (2) feedback and recommendations for work issues raised; (3) inquiries, comments, and responses about course assignments and specific course content; (4) encouragement; and (5) technical challenges encountered using the blended learning methodology. Case discussions were complex, including patient history, symptoms, medications, and psychosocial issues-child abuse, adherence, and disclosure. CONCLUSIONS: Using text messaging in a communication platform that is an ongoing part of healthcare workers' daily lives can be an effective adjunct to in-service training, minimizing isolation and providing interactivity, supporting students' ability to fully integrate content into new skill attainment.

Career development among undocumented immigrant young adults: A psychology of working perspective.

Undocumented immigrants are among the most vulnerable of workers in the U.S. and face a unique set of barriers to obtaining adequate education and decent work. In the current study, we conducted a qualitative examination of the career development of undocumented young adults. Drawing from the Psychology of Working Theory (PWT; Duffy, Blustein, Diemer, & Autin, 2016), we examined barriers (e.g., economic constraints, marginalization) and resources (e.g., social support, critical consciousness, proactive personality) to participants' career development and sense of work volition. As a secondary aim, we explored general work attitudes. Using Consensual Qualitative Research methods, we interviewed 12 undocumented young adults between the ages of 18 and 26. All participants were DACA recipients. Barriers that most impacted work volition were economic strain and limited mobility; resources that were most supportive for work volition were social support, institutional support, and public policy changes. Regarding work attitudes, participants endorsed a high value of a strong work ethic, a variety of motivations to work, and a high degree of resilience. Implications for counseling psychologists, career development specialists, educators, and policymakers are discussed. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

Help in times of trouble: supporting nurses facing hardship.

Paul Steiner, Communications Manager, Cavell Nurses' Trust ( PaulS@cavellnursestrust.org ), reflects on the vital work of the charity, which provides support to nurses facing financial difficulties.