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Rural issues

The following resources examine particular issues and challenges for carers in rural areas.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

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Caring for Children Diagnosed with Autism Spectrum Disorder: Caregivers' Experiences

Although awareness about autism has increased in developed countries, more so than in developing countries, autism spectrum disorder (ASD) remains poorly understood by most South Africans, especially those in remote areas and in areas where research is limited. Furthermore, intervention services are often scarce or not available due to lack of knowledge amongst healthcare professionals. The current study aimed to explore caregivers' experiences of children with ASD in the Ehlanzeni District, Mpumalanga, South Africa. The study adopted a qualitative approach, and data was collected using semi-structured interviews, in which an interview guide was used. Twelve participants were selected purposively from the three different schools in the Ehlanzeni District and interviewed for the study. The data was analysed using thematic content analysis. The study adhered to ethical considerations. The findings of the study indicated that caregivers of children diagnosed with ASD experienced psychological stress; social stress; financial burden; lack of family support; and reported unavailability and accessibility of services. Therefore, information regarding a range of inexpensive interventions and educational programmes should be available for caregivers in order to reduce their psychological and social stress. Medicines should be available and accessible within the district to avoid caregivers having to travel long hours to access them, and to reduce their financial burden. Caregivers' support groups should also be established.

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Overcoming the challenges of caring for a child with foetal alcohol spectrum disorder: a Pilbara community perspective

Introduction: Foetal alcohol spectrum disorder (FASD) is a neurodevelopmental impairment that may result in individuals experiencing poor development, cognitive issues and disruptive behaviours. In Australia, the prevalence of FASD is unknown; however, two studies have revealed the prevalence of FASD in high risk populations in Western Australia. Individuals with FASD may experience higher rates of negative outcomes including poor school performance, involvement with the justice system and incarceration, substance use and are at risk of being placed in out-of-home care. Caregivers of children with FASD can experience challenges and high levels of stress due to the disruptive behaviours displayed by many children diagnosed with FASD. Whilst experiences of caregivers raising children with FASD have been documented globally, little is known about the experiences of caregivers in a remote Australian context, particularly from an Australian Aboriginal perspective. This study aimed to investigate the experiences of caregivers in a remote Australian context. The findings will be valuable to inform programs at the family, community and broader policy levels that can help enhance children's development and wellbeing.

Methods: Participants (n=7) in this qualitative study were recruited through a FASD diagnostic clinic and family support organisation in the Port Hedland region of Western Australia. Eligible participants were previous or current caregivers of children with a FASD diagnosis or risk of FASD and provided informed consent before participating in semi-structured interviews using a phenomenological approach. The interviews were 30-60 minutes in duration and were audio-recorded and transcribed verbatim using NVivo 11 computer software, with all identifying information removed.

Results: The caregivers provided rich, descriptive narratives revealing the challenges and stress they experienced when they first started caring for their child with FASD. Caregivers articulated how they developed and adapted strategies through trial and error that enabled them to better manage disruptive behaviours and maintain a stable, calm environment. A thematic analysis revealed four major themes: the importance of routine and structure for the child and family, the importance of family support, the benefits of peer support groups and various social issues impacting children's development. Maintaining routine and structure had helped many caregivers mitigate stress and reduce disruptive behaviours, and family support allowed caregivers some respite whilst ensuring children remained connected to their biological families and culture. The caregivers also shared that peer support groups would be beneficial to share stories and strategies with others experiencing similar circumstances. Broader societal issues requiring attention at the community level were discussed, in addition to caregivers having awareness of the complexities impacting the children's biological families.

Conclusion: The caregivers in this study have gained valuable knowledge and wisdom through caring for a child with FASD that can benefit health professionals and the broader community. Whilst the caregivers in this study have overcome challenges through developing and adapting their own strategies, support services providing tailored programs for caregivers when they first start caring for a child with FASD would be beneficial. Furthermore, formal respite was not utilised by the caregivers in this study due to safety issues, inconsistent parenting and interrupted routines, therefore investigation into training respite caregivers in the area of FASD would be beneficial. Furthermore, respite services should consider provisions to include extended families and kinship relationships in a formal context to enable ongoing cultural and family connection, consistent parenting strategies and routines.

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Discordant retention of HIV-infected mothers and children: Evidence for a family-based approach from Southern Mozambique

It is often assumed that children and their caregivers either stay in care together or discontinue together, but data is lacking on caregiver-child retention concordance. We sought to describe the pattern of care among a cohort of human immunodeficiency virus (HIV) infected children and mothers enrolled in care at the Manhiça District Hospital (MDH).This was a retrospective review of routine HIV clinical data collected under a larger prospective HIV cohort study at MDH. Children enrolling HIV care from January 2013 to November 2016 were identified and matched to their mother's HIV clinical data. Retention in care for mothers and children was assessed at 24 months after the child's enrolment. Multinomial logistic regression was performed to evaluate variables associated with retention discordance.For the 351 mother-child pairs included in the study, only 39% of mothers had concordant care status at baseline (23% already active in care, 16% initiated care concurrently with their children). At 24-months follow up, a total of 108 (31%) mother-child pairs were concordantly retained in care, 88 (26%) pairs were concordantly lost to follow up (LTFU), and 149 (43%) had discordant retention. Pairs with concurrent registration had a higher probability of being concordantly retained in care. Children who presented with advanced clinical or immunological stage had increased probability of being concordantly LTFU.High rates of LTFU as well as high proportions of discordant retention among mother-child pairs were found. Prioritization of a family-based care model that has the potential to improve retention for children and caregivers is recommended.

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Caregivers' Self-Reported Absence of Social Support Networks is Related to Treatment Abandonment in Children With Cancer

Background: Treatment abandonment (TxA) is a primary cause of therapy failure in children with cancer in low-/middle-income countries. We explored the absence of social support network (SSN), among other predictive factors, and TxA in children with cancer in Cali, Colombia.

Procedure: In this prospective cohort study, we included children diagnosed with cancer at a public university hospital. A social worker and a psychologist administered semistructured questionnaires to patients' caregivers. We extracted information from the questionnaires about social, economic, and psychological conditions of the patients' families. Outcomes were death, relapse, and TxA. Failure either to start or to continue the planned course of curative treatment for 4 weeks or more was defined as TxA. We identified events with Cali's childhood cancer outcomes surveillance system (VIGICANCER). We adjusted the hazard ratios (HRs) for potential confounders using multivariate Cox regression analyses.

Results: Among 188 patients diagnosed from January 2011 to June 2013, 99 interviews were conducted. Median age was 5 years old (range: 0.3, 14.9), 53% were male, 17% were of Colombian-Indian ethnicity, and 68% lived in rural areas. The 2-year cumulative incidence of TxA was 21% (95% confidence interval [CI]: 13, 35) and the annual proportion was 14%. The adjusted HR for the absence of SSN was 4.9 (95% CI: 1.6, 15.3).

Conclusions: We found a strong association between the absence of SSN and TxA that was independent of other covariates, including surrogate measures of wealth. Our findings highlight the imperative understanding of social ties and support surrounding children's families for planning strategies to prevent TxA. 

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Family coping: Living with the child affected by chronic disease

Objective: to identify the main difficulties of families/caregivers of coping with children's chronic condition.

Method: descriptive and exploratory study with qualitative approach, conducted with 22 caregivers of children affected by chronic diseases living in municipalities of the rural arid zone of Pernambuco State. Data were produced through semi-structured individual interviews and analyzed with the content analysis technique.

Results: the main difficulties faced by caregivers were related to changes in routine imposed by the disease and include increased attention to the child and the caregiver burden. To help in coping with the situation and keeping the hope for the future, caregivers rely on social support, especially from the family.

Conclusion: it is essential to know the difficulties experienced by caregivers in order to create strategies that help in coping with the chronic condition in childhood.

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Barriers and Facilitators to Caring for a Child with Cerebral Palsy in Rural Communities of the Western Cape, South Africa

Family members of children with disabilities have become more involved in their children's care and have adopted the role of primary caregiver. Due to the varying degrees of the condition, children with cerebral palsy (CP) often require greater involvement from their caregivers. Fifteen caregivers for children with CP residing in rural communities of the Western Cape, South Africa, were interviewed to explore the barriers and facilitators that they encountered. Thematic analysis revealed that some progress has been made in terms of service provision to caregivers from previously disadvantaged communities. However, a lot more needs to be done to help caregivers with children with CP. Social support, increased public awareness of the causes of disability, financial support by the government and access to disability friendly services, such as respite care, special education and transport-related services, have been identified as essential. It is important to take this into consideration when designing future interventions in order to provide caregivers with support and services necessary to make an impact. 

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Caring for children with an intellectual disability: An exploratory qualitative study

This study explored family caregiver experiences of children with an intellectual disability in a rural South African day-care centre. The family caregivers (N = 15; mothers = 60%; age range = 35 to 68 years) completed in-depth interviews regarding their experiences providing care to children with intellectual disability. Data collection and analysis was done using phenomenological methods. The following themes emerged to characterise the family caregiver experiences: deeper understanding of intellectual disability; disability disclosure conditions; and social and economic support needs. Family support emerged as an important factor in the relationship between caregivers' psychological stress and well-being.

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The power of siblings and caregivers: under-explored types of social support among children affected by HIV and AIDS

Children affected by HIV and AIDS have significantly higher rates of mental health problems than unaffected children. There is a need for research to examine how social support functions as a source of resiliency for children in high HIV-prevalence settings such as South Africa. The purpose of this research was to explore how family social support relates to depression, anxiety, and post-traumatic stress (PTS). Using the ecological model as a frame, data were drawn from a 2011 cross-sectional study of 1380 children classified as either orphaned by AIDS and/or living with an AIDS sick family member. The children were from high-poverty, high HIV-prevalent rural and urban communities in South Africa. Social support was analyzed in depth by examining the source (e.g. caregiver, sibling) and the type (e.g. emotional, instrumental, quality). These variables were entered into multiple regression analyses to estimate the most parsimonious regression models to show the relationships between social support and depression, anxiety, and PTS symptoms among the children. Siblings emerged as the most consistent source of social support on mental health. Overall caregiver and sibling support explained 13% variance in depression, 12% in anxiety, and 11% in PTS. Emotional support was the most frequent type of social support associated with mental health in all regression models, with higher levels of quality and instrumental support having the strongest relation to positive mental health outcomes. Although instrumental and quality support from siblings were related to positive mental health, unexpectedly, the higher the level of emotional support received from a sibling resulted in the child reporting more symptoms of depression, anxiety, and PTS. The opposite was true for emotional support provided via caregivers, higher levels of this support was related to lower levels of all mental health symptoms. Sex was significant in all regressions, indicating the presence of moderation.

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Early Feeding Experiences of Families Whose Children Were Born with Cleft Lip andor Palate: A Rural Perspective

An initial problem frequently found in children born with cleft palate is difficulty feeding. This problem can be magnified in rural areas where healthcare resources are limited. A 29-item questionnaire was developed and administered to 24 families whose children were born with a cleft palate. Many parents experienced difficulties in both instruction and in feeding their children. It was necessary for them to seek information and assistance from different sources. As a result of the findings, an informational pamphlet was developed and distributed to various rural hospitals located in West Virginia, so that information and sources of instruction for feeding were more readily available.

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Perceptions and experiences of stigma among parents of children with developmental disorders in Ethiopia: A qualitative study

Although stigma related to developmental disorders (DD) has been associated with poor mental health among caregivers, an in-depth understanding of factors that influence internalisation of stigma by caregivers is missing. The aim of our study was to explore perceptions and experiences of stigma among parents of children with DD in Ethiopia and examine the contributing and protective factors for internalised stigma based on the perspectives of the parents themselves. We conducted in-depth interviews with eighteen parents (fourteen mothers, four fathers) in Addis Ababa (between December 25, 2017 and January 8, 2018) and the rural town of Butajira (between August 08, 2018 and August 16, 2018). We analysed the data using thematic analysis. Parents perceived and experienced different forms of stigma that were directed towards their child (public stigma) and themselves (courtesy stigma). Some parents also described how they isolated themselves and their child from social life (affiliate stigma). Parents perceived the negative consequence of stigma on the lives of their child with DD, siblings and themselves. Most parents also described examples of positive reactions and support from their own family and the community. Participants' accounts suggested supportive contributions and positive responses from the general public came primarily from those who had better awareness of DD. Not all parents in our study internalised the stigma that was directed at them. Whilst perceived family support and acceptance and increased awareness about DD appeared to help some parents not to internalise stigma, the perceived lack of social support and acceptance made some parents vulnerable to internalised stigma. These findings can inform anti-stigma intervention priorities. Awareness-raising activities targeting the community as a whole as well as interventions targeting parents themselves are likely to be beneficial. Interventions should consider the wellbeing of the whole family unit rather than focus on individuals alone.

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Stigma and discrimination: barriers to the utilisation of a nutritional program in HIV care services in the Tigray region, Ethiopia

Background: In Ethiopia, stigmatising attitudes towards people living with HIV have reduced over time. This is mainly due to improved HIV knowledge and the expansion of access to HIV care and support services. However, HIV stigma and discrimination remain a key challenge and have negative impacts on access to and utilisation of HIV services including nutritional programs in the HIV care setting. A small number of studies have examined the experience of stigma related to nutritional programs, but this is limited. This study explored HIV status disclosure and experience of stigma related to a nutritional program in HIV care settings in Ethiopia and impacts on nutritional program utilisation.

Methods: As part of a larger study, qualitative in-depth interviews were conducted with 20 adults living with HIV, 15 caregivers of children living with HIV and 13 program staff working in the nutritional program in three hospitals in the Tigray region of Northern Ethiopia. Framework thematic analysis was employed to analyse the data and NVivo 11 was used to analyse the qualitative interview data. This study is presented based on the consolidated criteria for reporting of qualitative research

Results: The study found varying levels of positive HIV status disclosure, depending on who the target of disclosure was. Disclosing to family members was reported to be less problematic by most participants. Despite reported benefits of the nutritional program in terms of improving weight and overall health status, adults and caregivers of children living with HIV revealed experiences of stigma and discrimination that were amplified by enrolment to the nutritional program and concerns about unwanted disclosure of positive HIV status. This was due to: a) transporting, consuming and disposing of the nutritional support (Plumpynut/sup) itself, which is associated with HIV in the broader community; b) required increased frequency of visits to HIV services for those enrolled in the nutritional program and associated greater likelihood of being seen there.

Conclusion: There was evidence of concerns about HIV-related stigma and discrimination among individuals enrolled in this program and their family members, which in turn negatively affected the utilisation of the nutritional program and the HIV service more broadly. Stigma and discrimination are a source of health inequity and undermine access to the nutritional program and other HIV services. Nutritional programs in HIV care should include strategies to take these concerns into account by mainstreaming stigma prevention and mitigation activities. Further research should be done to identify innovative ways of facilitating social inclusion to mitigate stigma and improve utilisation. 

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Stigma, explanatory models and unmet needs of caregivers of children with developmental disorders in a low-income African country: a cross-sectional facility-based survey

Background: Understanding the perspectives of caregivers of children with developmental disorders living in low-income countries is important to inform intervention programmes. The purpose of this study was to examine the stigma experiences, explanatory models, unmet needs, preferred interventions and coping mechanisms of caregivers of children with developmental disorders in Ethiopia.

Methods: Participants comprised caregivers (n = 102) of children with developmental disorders attending two child mental health clinics in Addis Ababa. The majority (66.7%; n = 68) had a diagnosis of intellectual disability (ID); 34 children (33.3%) had autism spectrum disorder (ASD) as their primary diagnosis. All caregivers were administered a structured questionnaire via a face-to-face interview, which included an adaptation of the Family Interview Schedule, closed questions about socio-demographic characteristics, explanatory models of illness, type of interventions used or desired and coping strategies, and an open ended question regarding the family's unmet needs.

Results: Most caregivers reported experience of stigma: 43.1% worried about being treated differently, 45.1% felt ashamed about their child's condition and 26.7% made an effort to keep their child's condition secret. Stigma did not depend on the type of developmental disorder, the child's age or gender, or on the age or level of education of the caregiver (all p > 0.05). Reported stigma was significantly higher in caregivers who had sought traditional help (p < 0.01), provided supernatural explanations for their child's condition (p = .02) and in caregivers of Orthodox Christian faith (p = .03). Caregivers gave a mixture of biomedical explanations (e.g. head injury (30.4%) or birth complications (25.5%)) and supernatural explanations (e.g. spirit possession (40.2%) or sinful act (27.5%)) for their child's condition. The biggest reported unmet need was educational provision for their child (74.5%), followed by treatment by a health professional (47.1%), financial support (30.4%) and expert help to support their child's development (27.5%). Most caregivers reported that talking to health professionals (86.3%) and family (85.3%) helped them to cope. Many caregivers also used support from friends (76.5%) and prayer (57.8%) as coping mechanisms.

Conclusions: This study highlights the stigma experienced by families caring for a child with a developmental disorder. Designing interventions appropriate for low-income settings that improve awareness about developmental disorders, decrease stigma, improve access to appropriate education and strengthen caregivers' support are needed.

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Effectiveness and acceptability of parent training via telehealth among families around the world

Teaching parents to conduct functional analyses and to implement functional communication training is an efficacious approach for treating socially maintained problem behavior (Derby et al., 1997). Research has found that delivering this assessment and intervention package via telehealth technologies is efficient and acceptable to caregivers in the United States (Wacker et al., 2013b). We replicated this work with families residing in rural and urban areas of eight countries. Two behavior therapists located in the United States conducted appointments in the participants' native languages, using interpreters as needed. Parent‐implemented functional analyses and treatment with functional communication training were highly effective in reducing problem behavior in children diagnosed with autism. Furthermore, parents rated the procedures as acceptable and indicated that the treatment would be effective with their children. These findings indicate that telehealth technologies are a viable option for clinicians to provide behavior analysis services to families around the world.

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Burden of caregivers of children with cerebral palsy: an intersectional analysis of gender, poverty, stigma, and public policy

Background: Caregivers of children with cerebral palsy suffer from a substantial psychosocial burden. However, there is a scarcity of documentation of the various sources of burden in low- and middle-income settings. 

Methods: We conducted qualitative in-depth interviews among mothers of children with cerebral palsy attending a physiotherapy facility. We purposively sampled mothers from rural and peri-urban areas in Tamil Nadu, India, till the point of data saturation. We analysed the transcripts using the socio-ecological model to identify the major dimensions of psychosocial burden among these mothers.

Results: At the individual level the mothers perceived aches and pains due to the heavy physical activity of caregiving. They also suffered from a feeling of guilt about the child's condition. Due to the difficulty in balancing family and work, they had significant financial burdens. They also perceived a lack of knowledge and awareness about possible options for the treatment of their child. At the interpersonal level, the mothers lacked support from their husband and family in the process of caregiving. They also had to suffer the ill effects of alcoholism and domestic violence from their husbands. They had to compromise on the care they provided to the other family members and their children without cerebral palsy. At the community level, the mothers had no support from the community members and felt isolated from others. The mothers also reported discrimination and lack of participation in social events. Environmental stressors like lack of inclusive public spaces, lack of options for public transport and unfriendly work timings and environment were major sources of burden. The mothers felt that the disability welfare support offered by the government was grossly insufficient and there was no platform for interactions with other peers and mothers suffering from a similar burden.

Conclusion: Caregivers of children with cerebral palsy have unique burdens in a typical low- and middle-income setting including an intersection of gender norms, poverty, stigmatization and non-inclusive public policy, which need to be addressed to improve the quality of life of caregivers.

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Clinical trials in low-resource settings: the perspectives of caregivers of paediatric participants from Uganda, Tanzania and Kenya

Objectives: Vaccine clinical trials in low-resource settings have unique challenges due to structural and financial inequities. Specifically, protecting participant and caregiver autonomy to participate in the research study can be a major challenge, so understanding the setting and contextual factors which influence the decision process is necessary. This study investigates the experience of caregivers consenting on behalf of paediatric participants in a malaria vaccine clinical trial where participation enables access to free, high-quality medical care.;

Methods: We interviewed a total of 78 caregivers of paediatric participants previously enrolled in a phase II or III malaria vaccine clinical trial in Uganda, Tanzania and Kenya. Interviews were qualitative and analysed using a thematic framework analysis focusing on the embodied caregiver in the political, economic and social reality.

Results: Caregivers of participants in this study made the decision to enrol their child based on economic, social and political factors that extended beyond the trial into the community and the home. The provision of health care was the dominant reason for participation. Respondents reported how social networks, rumours, hierarchal structures, financial constraints and family dynamics affected their experience with research.

Conclusions: The provision of medical care was a powerful motivator for participation. Caregiver choice was limited by structural constraints and scarce financial resources. The decision to participate in research extended beyond individual consent and was embedded in community and domestic hierarchies. Future research should assess other contexts to determine how the choice to participate in research is affected when free medical care is offered.

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Telehealth Acceptability for Children, Family, and Adult Hospice Nurses When Integrating the Pediatric Palliative Inpatient Provider during Sequential Rural Home Hospice Visits

Background: Children in rural geographies are not universally able to access pediatric-trained palliative or hospice providers.

Objective: Determine whether telehealth inclusion of a familiar pediatric palliative care provider during the first two home-based hospice visits was acceptable to children, families, and adult-trained home hospice nurses in rural settings. Design: Case series. Setting: Home hospice in rural Midwest. Participants: Patients <18 years of age enrolling in home hospice for end-of-life care.

Measurements: The acceptability of telehealth inclusion of a hospital-based pediatric palliative care provider in home hospice visits to the family caregiver and home hospice nurse was measured using the Technology Acceptance Model Questionnaires with the inclusion of the child perspective when possible.

Results: Fifteen patients mean age of seven years enrolled. Family caregiver included 11 mothers (73%), 2 grandmothers (13%), and 2 fathers (13%). Fifteen nurses from nine hospice agencies participated. Twelve families (80%) included additional relatives by telehealth modality. Home distance averaged 172 miles with mean eight hours saved by accessing telehealth encounter. Visit content was primarily caregiver support, quality of life, goals of care, symptom management, and medication review. Telehealth acceptability improved between time points and was higher in family caregivers (4.3-4.9 on 5-point scale; p  = 0.001) than hospice nurses (3.2-3.8 on 5-point scale; p  = 0.05). All children able to self-report stated a "like" for telehealth, citing six reasons such as "being remembered" and "medical knowledge and care planning."

Conclusions: Pediatric palliative telehealth visits partnered with in-person hospice nurse offer acceptable access to services, while extending support.

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Vulnerability and agency across treatment-seeking journeys for acutely ill children: how family members navigate complex healthcare before, during and after hospitalisation in a rural Kenyan setting

Background: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations and ability to make choices and act (their agency). We examined vulnerability and agency across treatment-seeking journeys for acutely ill children and considered the implications for policy and practice.

Method: A qualitative sub-study was embedded within the prospective CHAIN Network cohort study, which is investigating mechanisms of inpatient and post-hospital discharge mortality among acutely ill young children across a spectrum of nutritional status. Primary data were collected from household members of 20 purposively selected cohort children over 18 months through formal interviews (total n = 74), complemented by informal discussions and observations. Data were analysed using narrative and thematic approaches.

Results: Treatment-seeking pathways were often long and complex, particularly for children diagnosed as severely malnourished. Family members' stories reveal that children's carers, usually mothers, navigate diverse challenges related to intersecting vulnerabilities at individual, household and facility levels. Specific challenges include the costs of treatment-seeking, confusing and conflicting messaging on appropriate care and nutrition, and poor continuity of care. Strong power inequities were observed between family members and health staff, with many mothers feeling blamed for their child's condition. Caregivers' agency, as demonstrated in decision-making and actions, often drew on the social support of others but was significantly constrained by their situation and broader structural drivers.

Conclusion: To support children's care and recovery, health systems must be more responsive to the needs of families facing multiple and interacting vulnerabilities. Reducing incurred treatment costs, improving interpersonal quality of care, and strengthening continuity of care across facilities is essential. Promising interventions need to be co-designed with community representatives and health providers and carefully tested for unintended negative consequences and potential for sustainable scale-up.

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How to prevent and avoid barriers in co-production with family carers living in rural and remote area: an Italian case study

Background: Co-production has been widely recognised as a potential means to reduce the dissatisfaction of citizens, the inefficacy of service providers, and conflicts in relations between the former and the latter. However, the benefits of co-production has begun to be questioned: co-production has often been taken for granted, and its effects may not be effective. To understand and prevent unsuccessful citizen and provider collaboration, the recent literature has begun to focus on the causes of co-destruction. Objective: This paper investigates how the barriers that may arise during the co-production of a new social service with family carers can be identified and interpreted. Methods: To investigate this topic, we undertook a single case study - a longitudinal project (Place4Carers (Graffigna et al., BMJ Open 10:e037570, 2020)) intended to co-produce a new social care service with and for the family carers of elderly patients living in rural and remote areas. We organised collaborative co-assessment workshops and semi-structured interviews to collect the views of family carers and service providers on the co-production process. A reflexive approach was used in the analysis for collecting the opinions of the research team that participated in the co-production process. Results: The analysis revealed four main co-production barriers: lack of trust, lack of effectiveness of engagement, participants’ inability (or impossibility) to change and the lack of a cohesive partnership among partners. Despite these findings, the project increases carers’ satisfaction, competence and trust in service providers by demonstrating the positive effects of co-production. Conclusions: Our article confirms that co-creation and co-destruction processes may coexist. The role of researchers and service providers is to prevent or remedy co-destruction effects. To this end, we suggest that in co-production projects, more time should be spent co-assessing the project before, during and after the co-production process. This approach would facilitate the adoption of adjustment actions such as creating mutual trust through conviviality among participants and fostering collaborative research between academia and organisations that are not used to working together. 

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Subjective burdens among informal caregivers of critically ill patients: a cross-sectional study in rural Shandong, China

Background: Informal caregivers are the main source of care for the critically ill, especially after discharge or during the terminal stages at home. However, the concern for informal caregivers is often overshadowed by critically ill patients. Objectives: The purpose of this study is to determine the influencing factors of the subjective burden of informal caregivers and to seek solutions accordingly. Methods: Between July and August 2019, a cross-sectional study was conducted in Shandong, China, focusing on family caregivers and critically ill patients. Subjective caregiver burden was measured by the Chinese version of Zarit Burden Interview (ZBI). The stress process model was used to identify conditions relevant to the caregiving burden and to assess their impact on family caregivers. Results: 554 samples were selected for analysis. The average scores of Zarit Caregiver Burden Interview (ZBI) scores in this study was 30.37±19.04 (n=554). ZBI scores of older, less educated, and spouse caregivers were significantly lower (4.12; 95%CI, 0.42 to 7.81; P =0.029). Objective and subjective burdens increased proportionally. Secondary role stress factors included the higher out-of-pocket (OOP) costs of critical diseases and lower household income, both of which increased caregivers’ subjective burdens (1.28; 95%CI, -0.06 to 2.63; p=0.062). Formal medical aid systems played a positive role in reducing subjective caregiving burdens (-7.31; 95%CI, -13.23 to -1.40; p=0.016). Conclusions: Health policies should address both the direct medical burdens and the intangible psychological burdens of critical diseases. 

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Perceptions and experiences of dementia and its care in rural Kenya

Objectives: We aimed to explore the perceptions towards dementia and related care across three stakeholder groups in rural Kenya. Methods: A total of 38 key stakeholders (carers of persons with dementia, health care providers and the general public) participated in focus group discussions. Additional five individual interviews were held with carers. Thematic analysis was used to analyse the data. Findings: Across the three participant groups, a total of four themes were identified: (i) negative stereotypes of dementia, (ii) limited knowledge about dementia, (iii) diagnostic pathway and (iv) neglect and abuse. Conclusions: We found a general lack of knowledge of dementia amongst family carers, healthcare professionals and the general public. The combination of poor awareness and ill-equipped healthcare systems leads to stigma manifested in the form of patchy diagnostic pathways, neglect and abuse. Local governments could take advantage of the existing family- and community-based systems to improve understanding of dementia nationally. 

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Caring for a relative with dementia: Determinants and gender differences of caregiver burden in the rural setting

Background: Dementia is a progressive disease that puts substantial strain on caregivers. Many persons with dementia (PwDs) receive care from a relative. Since male and female caregivers experience different issues related to stress, it is important to meet their different needs to prevent the early nursing home placement of PwDs. Objectives: This study investigated the multifactorial aspects of caregiver burden and explored gender differences in caregiver burden in a rural setting. Methods: This was a cross sectional study that administered anonymous questionnaires to family caregivers of PwDs. Caregiver burden was assessed using the Burden Scale for Family Caregivers—short version. A path model was used to determine the multivariate associations between the variables. To reflect the multifaceted aspects of caregiver burden, we used Pearlin’s model with its four dimensions. Results: A total of 113 family caregivers responded to our survey. The overall burden of caregivers was moderate. According to the path model, gender differences were predictors of caregiver burden. The behaviour of the person with dementia and cohabitation had direct effects on caregiver burden. Conclusions: Our results suggest that the experiences of men and women caring for a PwD are different and highlight the need for tailored support in dementia care. 

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An individualized telephone-based care support program for rural family caregivers of people with dementia: study protocol for a cluster randomized controlled trial

Background: There are about 9.5 million people with dementia in China. Up to 99% of them are cared for by their family caregivers. Family caregivers are confronted with considerable difficulties and challenges while providing care. They often experience high levels of emotional, physical, financial, and social burdens. Caregivers in rural areas experience an even higher level of burden compared to their counterparts in urban areas due to fewer health resources for dementia care. However, so far, no intervention study has been conducted to support family caregivers in rural areas of China. Objectives: The aim of this proposed study is to adapt and evaluate an evidence-based and culturally-tailored individualized telephone-based care support (ITBCS) program for family caregivers of people with dementia in rural China. Methods: A cluster randomized controlled trial (RCT) will be conducted to evaluate the effectiveness of the ITBCS compared with usual care for Chinese rural family caregivers of people with dementia. A total sample of 168 rural family caregivers will be recruited. The intervention components consist of a 3-month intensive telephone-based care support intervention followed by telephone-based follow-up consultations for 6 months. The control group will receive usual care services available for them. Outcome measures include carers’ subjective burden, depressive symptoms, health-related quality of life, social support, caregiving self-efficacy, and care recipients’ difficult behaviours and competence in activities of daily living at 3, 9 and 15 months after baseline. The potential cost-effectiveness of the ITBCS compared with usual care will be assessed as well. Discussion: If effective, the ITBCS program can be adapted and used in rural areas of China as a blueprint to improve the quality of home-based care for people with dementia. Findings from the present study are significant for developing evidence-based dementia care policy in rural China. Trial registration: Chinese Clinical Trial Registry, ChiCTR2000038821, Registered 4 April 2020, 

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Beyond nostalgia: Older people's perspectives on informal care in rural Flanders

Background: Flanders (Belgium) is aging at high speed. In 2060, almost one in three (32 percent) will be older than 60. The number of people aged 80 and over will increase from more than 400,000 today to nearly 800,000 in 2060. This demographic change can be witnessed throughout the entire region, yet older people are overrepresented in rural areas. A large majority of older people is ‘aging in place’. This often occurs in places that witness a severe decline in basic facilities and that suffer from a loss of its young(er) population. Nevertheless, policies in Flanders strongly support aging in place, while emphasizing the role of informal caregivers. Objective: This paper explores older people's perceptions of and experiences with informal care in rural Flanders. Methods: Based on qualitative in-depth interviews, we focus on the role of family members and neighbors in providing informal care for older people living at home in two different rural areas in Flanders (‘Westhoek’ and ‘Kempen’). Findings: The analysis shows how, in both regions, receiving care from children and neighbors is simply not always perceived as a valid and realistic option by our respondents, and this for different reasons. It concludes that the current focus of elderly policy in Flanders on aging in place and the strong emphasis on the role of informal caregivers work only for those older people whose informal caregivers (in practice mostly children) live nearby. This depends strongly, of course, on spatial and economic factors. Also, neighbors are not the cohesive group they are presumed to be. Conclusions: We thus have to move beyond the nostalgic idea that neighbors and close family members can or will actively engage in informal care. 

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Stress and Depression in Family Members of Patients with Dementia in Urban and Rural Communities: Cross-Sectional Surveys in Korea

Background: Re compared the associations of socioeconomic factors with stress and depression among family members living with a dementia patient in urban and rural areas of South Korea. Methods: Data were collected from 9,730 (4,560 urban and 5,170 rural) participants in the Korean Community Health Survey from 2014-17. The variable of interest was the presence of a cohabitating dementia patient, and the dependent variables were stress and depression. Results: Family members living with a dementia patient in rural areas had a significantly lower socioeconomic status (education, household income, marital status, and employment) than those living in urban areas (p<0.001). In addition, family members living with a dementia patient in rural areas reported statistically significantly less stress and depression than did those in urban areas after adjusting for related factors(rural stress OR=0.87, 95% CI=0.80-0.95; rural depression OR=0.75, 95% CI=0.66-0.85). Female gender and a low family income were associated with stress and depression in both rural and urban areas. Age, educational attainment, number of family members, marital status, and employment status differed slightly between urban and rural areas. Conclusion: The socioeconomic factors associated with stress and depression differ slightly in the rural and urban areas of South Korea.

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Utilization of telemedicine to support caregivers of young children with ASD and their Part C service providers: a comparison of intervention outcomes across three models of service delivery

Background: Families of young children with autism spectrum disorder (ASD) frequently experience barriers to accessing evidence-based early intervention services. Telemedicine presents an opportunity to increase access to these services, particularly for families in rural and under-resourced areas. The present article describes a brief behavioral intervention and support model for families of young children with concerns for ASD. In the context of the COVID-19 pandemic, this service model shifted to telemedicine-only service delivery, resulting in an opportunity to analyze intervention outcomes from services delivered either via traditional in-person visits, telemedicine-only sessions, or a hybrid model including both in-person and telemedicine sessions. Methods: Data are presented for 115 families with toddlers 16-33 months of age who participated in a six-session behavioral intervention and support service model either in-person, through telemedicine, or through a hybrid service model. This intervention was available for families referred for ASD evaluation through the state Part C early intervention program. Intervention feasibility, fidelity of implementation, child outcomes, and stakeholder satisfaction are compared across service delivery models. Results: Caregivers, behavioral consultants, and Part C early intervention providers reported satisfaction with services, regardless of service delivery model. Caregivers and consultants also reported positive child outcomes. Statistically significant differences emerged for caregiver- and consultant-reported child outcomes in some domains, with stakeholders in the telemedicine-only group reporting slightly less improvement, compared to stakeholders in the in-person-only group. Caregivers and consultants in the telemedicine-only group also provided qualitative feedback on benefits and challenges related to telemedicine services. Conclusions: Both caregivers and behavioral consultants reported positive outcomes following a brief behavioral intervention and support model targeted at families of young children with concern for ASD. Stakeholders reported improvement in child behavior and satisfaction with services across in-person, telemedicine-only, and hybrid models of service delivery. These results suggest that telemedicine presents a promising opportunity for increasing service access. Additional research is needed to continue optimizing the experience of telemedicine-based service delivery for both families and intervention providers.

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Strong Carers, Strong Communities: a cluster randomised controlled trial to improve wellbeing of family carers of older people in remote Aboriginal communities

Introduction: Unpaid carers have a crucial role in supporting older people with cognitive impairment and disability, but their own health and wellbeing are often impacted. There are limited data on how carer strain, depression and empowerment may be improved for carers. Methods: This was a cluster randomised controlled trial to compare the effect of a carer support program developed with a community-based participatory action research (PAR) approach to the delivery of information sessions to 100 carers of people aged 45 years or more living in four remote Aboriginal communities in Western Australia. Results: The mean age of carers was 38.3±14.9 years, 76% were female and 77% were children or grandchildren of the care recipient. Carer strain and empowerment measures did not change significantly between baseline and follow-up. A statistically significant decrease in depression scores was observed in the PAR group. However, decreases were observed in both the PAR and control groups, and the change in scores did not differ significantly between groups. Depression scores decreased most in those who had not attended high school. Overall, the proportion of participants meeting criteria for depression decreased from 18.8% at baseline to 8.3% at follow-up. Conclusion: A carer support program was of equivocal benefit, although this research demonstrates that the wellbeing of carers in remote Aboriginal communities can potentially be markedly improved by outreach strategies. 

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Social support and quality of life among rural family caregivers of persons with severe mental illness in Sichuan Province, China: mediating roles of care burden and loneliness

Objective: To explore the relationship between social support and quality of life (QoL) among family caregivers of persons with severe mental illness (SMI) and examine the mediating roles of care burden and loneliness. Methods: A cross-sectional study was carried out between December 2017 and May 2018. A random sample of 256 family caregivers of persons with SMI in rural areas of Sichuan Province, China was recruited for participation. Survey data on socio-demographics, social support, care burden, loneliness, and QoL were collected via in-person interviews. Multiple linear regression analysis and structural equation modeling (SEM) were used to test the hypothesized relationships. Results: The majority (72.7%) of family caregivers of persons with SMI in this study reported having low QoL. Social support was positively associated with QoL and negatively associated with care burden and loneliness. The findings suggested the mediating roles of care burden and loneliness on the association between social support and QoL. Conclusion: The hypothesized model was found to be a suitable model for predicting QoL among family caregivers of persons with SMI. The findings can help inform the design of future interventions aimed at enhancing social support, reducing care burden and loneliness, which may be helpful to improve caregivers' QoL. Future study is required to find a causal path to promote QoL among family caregivers of persons with SMI. 


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Rural-Urban Differences in Caregiver Burden Due to the COVID-19 Pandemic among a National Sample of Informal Caregivers

Objectives: The objective of this exploratory study was to explore potential associations between changes to caregiver burden (CB) due to the COVID-19 pandemic and rural-urban status using a nationally representative sample of 761 informal caregivers. Methods: Tertiles of two measures of rural-urban status were used: Rural-Urban Commuting Areas (RUCAs) and population density. Bivariate and multivariable binary and ordinal logistic regression were used to asses study objectives. Results: Using RUCAs, rural informal caregivers were more than twice as likely as urban informal caregivers to report a substantial increase in CB due to COVID-19 (OR 2.27, 95% CI [1.28–4.02]). Similar results were observed for population density tertiles (OR 2.20, 95% CI [1.22–3.96]). Having a COVID-19 diagnosis was also significantly associated with increased CB. Conclusions: Understanding and addressing the root causes of rural-urban disparities in CB among informal caregivers is critical to improving caregiver health and maintaining this critical component of the healthcare system. 

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A qualitative study of bereaved family caregivers: feeling of security, facilitators and barriers for rural home care and death for persons with advanced cancer

Background: For cancer patients and their family, an important factor that determines the choice to die at home is the caregivers' feeling of security when caring for the patient at home. Support to caregivers from healthcare professionals is important for the feeling of security. In rural areas, long distances and variable infrastructure may influence on access to healthcare services. This study explored factors that determined the security of caregivers of patients with advanced cancer who cared for the patients at home at the end of life in the rural region of Sogn og Fjordane in Norway, and what factors that facilitated home death. Methods: A qualitative study using semi-structured in-depth interviews with bereaved with experience from caring for cancer patients at home at the end of life was performed. Meaning units were extracted from the transcribed interviews and divided into categories and subcategories using Kvale and Brinkmann's qualitative method for analysis. Results: Ten bereaved caregivers from nine families where recruited. Five had lived together with the deceased. Three main categories of factors contributing to security emerged from the analysis: "Personal factors", "Healthcare professionals" and "Organization" of healthcare. Healthcare professionals and the organization of healthcare services contributed most to the feeling of security. Conclusion: Good competence in palliative care among healthcare professionals caring for patients with advanced cancer at home and well- organized palliative care services with defined responsibilities provided security to caregivers caring for advanced cancer patients at home in Sogn og Fjordane.

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Psychosocial predictors of adverse outcomes in rural heart failure caregivers

Introduction: Depressive symptoms, negative life changes, poor self-care, and higher caregiver burden are common in caregivers who assist individuals with heart failure (HF) in managing daily activities and disease-related symptoms. Previous research findings suggest social support, problem solving, and family function may influence these outcomes. However, the influence of these factors on outcomes in rural HF caregivers is unknown. The purpose of this study is twofold: (1) to examine whether social support, problem solving, and family function predicted depressive symptoms, caregiving-related life changes, self-care, and caregiver burden in rural HF caregivers; and (2) to compare differences in these variables between rural and urban caregivers. Methods: Rural caregivers (n=114) completed an online researcher-developed sociodemographic and clinical survey and standardized (Likert-type) self-report instruments. Participants were recruited locally from south-eastern USA (using face-to-face and telephone contacts, posted flyers, newspaper advertisements, and social media), nationally (newspaper advertisements and social media sites) and internationally (using social media). Potential participants were directed to the study website to complete the online surveys. These methods recruited participants who lived in 24 states within the USA, as well as from Canada, England, Ireland, Scotland, and Wales. Demographic statistics and Mann--Whitney U-test, as well as bivariate correlations, multivariate linear modelling, and Roy's largest root, were used to analyse data, controlling for covariates. Results: Rural (n=114) caregivers were primarily Caucasian (84.2%), women (58.8%), and 41.45 (±9.013) years old. Social support had significant effects on depressive symptoms (ηp² =0.384, p<0.001), self-care (ηp² =0.108, p=0.001), and life changes (ηp² =0.055, p=0.016), while problem solving showed significant effects on depressive symptoms (ηp² = 0.078, p=0.004) and caregiver burden (ηp² =0.23, p<0.001). Family function had significant effects on life changes (ηp² =0.104, p=0.001), self-care (ηp² =0.088, p=0.002), and caregiver burden (ηp² =0.116, p<0.001). Compared to urban (n=412) participants, rural caregivers experienced significantly less social support (p=0.001), worse problem-solving skills (p=0.003) and family functioning (p=0.009), and greater depressive symptoms (p≤0.01) and subjective burden (p=0.001). There were no significant differences in caregiver self-care (p=0.416) and perceived life changes (p=0.346) among rural and urban caregivers. Conclusion: Both social support and problem solving have significant effects on depressive symptoms in rural HF caregivers, while social support and family function influences self-care. Problem solving and family function also affect caregiver burden, while social support and family functioning influences caregiver life changes. Rural caregivers are often separated by long distances, and have transportation issues and limited access to healthcare providers and support services; therefore, innovative strategies are needed to explore the usefulness of these variables in improving caregiver outcomes.

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Place4Carers: a multi-method participatory study to co-design, piloting, and transferring a novel psycho-social service for engaging family caregivers in remote rural settings

Background: Family caregivers are key actors in the ageing society. They are mediators between practitioners and patients and usually provide also essential daily services for the elders. However, till now, few services have been deployed to help caregivers in their care tasks as in improving their mental health which can experience sever burden due to caregiving duties. Objectives: The purpose of the study is to implement a community-based participatory research project to co-design an innovative organizational model of social services for family caregivers of elderly health consumers living in remote rural areas in Italy. Methods: This is a community-based participatory research project in the remote area of Vallecamonica involving four main phases. These included a quantitative analysis of caregiver needs, a scoping review on existing services for caregivers, co-design workshops with local stakeholders and caregivers to create a novel service the piloting and a first implementation of the service and the assessment of project transferability to other contexts. Results: As the hours dedicated to elder care increases, both objective and developmental caregiver's burden significantly increases. Conversely, higher levels of engagement were associated with lower physical and emotional burden, and caregiver engagement was positively correlated with their perceived self-efficacy in managing disruptive patient behaviours. Based on these preliminary results, four co-design workshops with caregivers were conducted and led to the definition of the SOS caregivers service, built on four pillars structured upon the previous need analysis: a citizens' management board, training courses, peer-to-peer meetings, and project and service information. We found that co-design is an effective means of creating new services for family caregivers, whose experiential knowledge proved to be a key resource for the project team in delivering and managing services. Less positively, the transferability analysis indicated that local municipalities remain reluctant to acknowledge caregivers' pivotal role. Conclusions: A dedicated support service for caregivers can ameliorate caregiving conditions and engagement levels. The service has resulted a successful co-productive initiative for a psycho-social intervention for family caregivers. For the future, we suggest that family caregiver should be considered an active partner in the process of designing novel psycho-social services and not just as recipients to enhance a better aging-in-place process. 


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Gendered caregiving and structural constraints: An empirical ethical study

Background: The pressing issue of aged care has made gendered caregiving a growing subject of feminist bioethical enquiry. However, the impact of feminism on empirical studies in the area of gendered care in Chinese sociocultural contexts has been less influential. Objectives: To examine female members’ lived experiences of gendered care in rural China and offer proper normative evaluation based on their experiences. Research design: This article adopted an empirical ethical approach that integrates ethnographical investigation and feminist ethical inquiry. This article focused on three cases of gendered caregiving for sick older members collected from a 6-month fieldwork conducted in a primary hospital in rural China.  Approval was obtained from the university ethics committee. Findings: The empirical work highlights caregivers’ voices of weiqu (a sense of unfairness) resulting from their constrained choice when being pressured to engage in caregiving, which is associated with a disadvantageous socio-institutional and structural backdrop in current rural China. Informed by the conception of structural injustice, the normative analysis of this article traced various forms of social norms, structural deficiencies and ageing welfare institutions, as they intertwine and transmit into additional care deficiencies against rural families and their female caregivers. Conclusion: This article identified the constraint of gender hierarchy and its intersection with external social structure that exacerbate gendered oppression and exploitation of female labour in rural China. Normatively, this article argues that the current configuration of rural family care, featured by structural impediments and exploration of female labour, is unjust. Some policy recommendations are proposed to empower caregivers and advance care for rural older people.

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Caring ability of urban and rural family caregivers: association with overburden, stress and coping

Objective: To correlate caring ability with overburden, stress and coping of urban and rural family caregivers of patients undergoing cancer treatment. Method: Crosssectional study, carried out in a referral hospital for cancer treatment, with urban and rural caregivers who responded the following instruments: questionnaire of sociodemographic characterization of the caregiver and the care provided, Perceived Stress scale, Burden Interview scale and Brief COPE. Pearson’s correlation test was used for statistical analysis, with a significance level ≤5%. Results: A total of 163 urban caregivers and 59 rural caregivers participated in the study. Between the caring ability and stress, a negative and moderate correlation was found in rural caregivers. In the relationship between the caring ability and the overburden, there was a statistically significant correlation in urban caregivers in the interpersonal relationship and perception of self-efficacy factor. Between coping and the caring ability, a positive and moderate correlation was identified in coping focused on the problem in the knowledge dimension in urban caregivers. Conclusion: Urban caregivers had greater intensity of overburden and coping focused on the problem in relation to the caring ability. 

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Care of stroke survivors in community: a case study of rural Thai community

Purpose: This study aims to describe survivors of stroke circumstances, issues with providing care for survivors of stroke and services expected by caregivers and survivors of stroke. Design/methodology/approach: A qualitative research design was conducted in Singburi Province. Data collection methods included in-depth interviews, focus groups and participatory observations. Semi-structured in-depth interview guides, quality-of-life scale and depression scale were used to collect data from survivors of stroke, their caregivers, health personnel, local governors and village health volunteers. Naturalistic research tradition was used for qualitative data analysis and descriptive statistics for quantitative data analysis. Findings: The majority of survivors of stroke had hemiplegic limb and severe deficits in their activities of daily living. Caregivers were family members, and they often developed depression. Issues with providing care to stroke survivors included lack of knowledge about stroke and home care, inadequacy and discontinuity of care and the shortage of stroke care personnel in the community. A stakeholder's expected stroke services included the provision of effective continuing care, community participation in care and enhancing the village health volunteer's capacity. Originality/value: This study illustrated the stroke service systems in rural Thai communities. The study's findings could be applied when planning future research using community participation to test a model of care for stroke survivors to promote better outcomes and be responsive to the needs of stroke survivors, especially those who are disabled.

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Association between primary caregiver type and mortality among Chinese older adults with disability: a prospective cohort study

Background: Socio-demographic transitions have dramatically changed the traditional family care settings in China, caused unmet care needs among older adults. However, whether different primary caregiver types have different influences on disabled older adults’ health outcomes remain poorly understood. We aimed to examine the association between the type of primary caregiver (e.g., spouse and children) and death among community-dwelling Chinese older adults disabled in activities of daily living. Methods: We used data from Chinese Longitudinal Healthy Longevity Survey. The analytic sample comprised 4278 eligible adults aged ≥ 80 years. We classified primary caregiver type into five categories: spouse, son/daughter-in-law, daughter/son-in-law, grandchildren, and domestic helper. We used Cox regression model to examine the association between primary caregiver type and all-cause mortality. Covariates included age, sex, residence, years of education, co-residence status, financial independence, whether living with children, number of ADL disability, number of chronic conditions, and self-reported health, cognitive impairment, and caregiving quality. Results: Married older adults whose primary caregivers were son/daughter-in-law had a 38% higher hazard of death than those who had spouse as the primary caregiver. Married men who received care primarily from son/daughter-in-law or daughter/son-in-law had a 64 and 68% higher hazard of death, respectively, than those whose primary caregiver was spouse. The association between primary caregiver type and mortality among widowed older adults differed between urban and rural areas. Urban residents who had domestic helpers as the primary caregiver had an 16% lower hazard of death, while those living in rural areas had a 50% higher hazard of death, than those having son/daughter-in-law as the primary caregiver. Conclusions: The quality of care of the primary caregiver may be a risk factor for mortality of disabled older adults in China. Interventions are necessary for reducing unmet needs and managing care burden.

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Self-Directed Female Migration in Ghana: Health and Wellness of Elderly Family Caregivers Left Behind. An Ethnographic Study

Driven by the global economic crisis, families are developing strategies for survival, including self-directed female migration. Female migration has negative and positive impacts on families in rural areas. The purpose of the project was to explore the health and wellness experiences of elderly family caregivers who have female family members who have migrated to improve the status of their families. In this focused ethnographic study, we interviewed elderly family members who had a female family member who migrated outside their community for employment. Participants were enrolled from northern Ghanaian communities known to be economically disadvantaged in comparison to their southern counterparts. All interviews were audio-recorded, transcribed verbatim, and translated into English. Data were analyzed based on thematic content. Majors themes that emerged were reasons for children leaving their families; physical, emotional, and spiritual health; and social and economic struggles. Challenges of family care work undertaken by the elderly in families with emigrated female kin strongly also emerged as a theme. New contextual knowledge was developed about the impact of self-directed female migration on the health and wellness of elderly family caregivers. The information is valuable for the development of culturally appropriate social support and health practices for female migrants and their families.

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Weiqu, structural injustice and caring for sick older people in rural Chinese families: An empirical ethical study

This paper examines caregiving for sick older family members in the context of socio‐economic transformations in rural China, combining empirical investigation with normative inquiry. The empirical part of this paper is based on a case study, taken from fieldwork in a rural Chinese hospital, of a son who took care of his hospitalized mother. This empirical study highlighted family members' weiqu (sense of unfairness)—a mental status from experiencing mistreatment and oppression in family care, yet with constrained power to explicitly protest or make care‐related choices. Underpinning people's weiqu and constrained choice, as informed by the conception of structural injustice, is the impact of unjust social structures, organized by unfavourable norms, discriminatory social policies and institutions targeting rural populations. By restraining individual choices and capacities in supporting health care for aging populations, these unjust structures create additional difficulties for and discriminations against rural families and their older members. Some policy recommendations are proposed to mitigate structural injustice so as to empower families and promote care for older people in rural settings.

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A technology-enhanced model of care for transitional palliative care versus attention control for adult family caregivers in rural or medically underserved areas: study protocol for a randomized controlled trial

Background: Transitioning care from hospital to home is associated with risks of adverse events and poor continuity of care. These transitions are even more challenging when new approaches to care, such as palliative care, are introduced before discharge. Family caregivers (FCGs) are expected to navigate these transitions while also managing care. In addition to extensive caregiving responsibilities, FCGs often have their own health needs that can inhibit their ability to provide care. Those living in rural areas have even fewer resources to meet their self-care and caregiving needs. The purpose of this study is to test the efficacy and cost-effectiveness of an intervention to improve FCGs' health and well-being. The intervention uses video visits to teach, guide, and counsel FCGs in rural areas during hospital-to-home transitions. The intervention is based on evidence of transitional and palliative care principles, which are individualized to improve continuity of care, provide caregiver support, enhance knowledge and skills, and attend to caregivers' health needs. It aims to test whether usual care practices are similar to this technology-enhanced intervention in (1) caregiving skills (e.g., caregiving preparedness, communication with clinicians, and satisfaction with care), (2) FCG health outcomes (e.g., quality of life, burden, coping skills, depression), and (3) cost. We describe the rationale for targeting rural caregivers, the methods for the study and intervention, and the analysis plan to test the intervention's effect. Methods: The study uses a randomized controlled trial design, with FCGs assigned to the control condition or the caregiver intervention by computer-generated lists. The intervention period continues for 8 weeks after care recipients are discharged from the hospital. Data are collected at baseline, 2 weeks, 8 weeks, and 6 months. Time and monetary costs from a societal perspective are captured monthly. Discussion: This study addresses 2 independent yet interrelated health care foci-transitional care and palliative care-by testing an intervention to extend palliative care practice and improve transition management for caregivers of seriously ill patients in rural areas. The comprehensive cost assessment will quantify the commitment and financial burden of FCGs. Trial Registration: NCT03339271 . Registered on 13 November 2017. Protocol version: 11. 

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Schizophrenia, social support, caregiving burden and household poverty in rural China

Purpose: Household poverty associated with schizophrenia has been long described. However, the mechanisms by which schizophrenia may have influenced the economic status of a household in rural communities are still unclear. This study aimed to test an integrated model of schizophrenia, social support and caregiving burden on household poverty in a rural community in China. Methods: A mental health survey using identical methods and ICD-10 was conducted in six townships of Xinjin County (population ≥ 15 years old, n = 152,776), Chengdu, China in 2015. Identified persons with schizophrenia (n = 661) and their caregivers completed a joint questionnaire of sociodemographic information, illness conditions, social support and caregiving burden. Descriptive analysis was applied first to give an overview of the dataset. Then, multivariable regression analyses were conducted to examine the associative factors of social support, caregiving burden and household income. Then, structural equation modeling (SEM) was used to estimate the integrated model of schizophrenia, social support, caregiving burden and household income. Results: Households with patient being female, married, able to work and having better social function were better off. Larger household size, higher social support and lower caregiving burden also had salient association with higher household income. The relationship between schizophrenia and household poverty appeared to be mediated by the impacts of schizophrenia on social support and caregiving burden. Conclusion: There was a strong association between schizophrenia and household poverty, in which social support and caregiving burden may had played significant roles on mediating it. More precise poverty alleviation policies and interventions should focus on supporting recovery for persons with schizophrenia, as well as on increasing social support and on reducing family caregiving burden.

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Rural/Urban Differences in Clinical Care Task Learning (RP416)

Objectives Describe preferred learning modalities for clinical care task assistance among general adults and family caregivers. Report differences by rural/urban residence in learning modalities for clinical care task assistance among general adults and family caregivers. Importance. Rural family caregivers for patients with serious illness receive minimal formal training but often perform clinical care tasks far from clinical settings. Evidence-based strategies to prepare caregivers for these tasks are needed. Objective(s). We examined acceptability of clinical care task learning modalities among the general population and family caregivers. Method(s). Data from the population-based National Cancer Institute's 2018 Health Information National Trends were analyzed. Caregivers were those currently providing unpaid care/ making healthcare decisions for someone with a health condition. Main outcomes were learning modalities for clinical care tasks: in-person instruction, phone number/hotline, reading materials, online video instruction, or virtual (live instruction over the internet). Rural/urban residence was defined by Rural/Urban Commuting Area Codes: urban¼1-3, rural¼4-9. Multivariable logistic regression models predicting endorsement (yes/no) of learning modalities were regressed on rural/urban status for the general adult and caregiver populations. Models used sampling weights and adjusted for sociodemographics, and for the caregiver models included duration and hours/week caregiving and caregiver-patient relationship. Results. Analyses included 2847 adults (51% female, 64% White, 15% rural) and 378 caregivers (66% female, 66% White, 16% rural). In both the general and caregiver population, the most preferred modality for training was in-person (73%, 69% respectively) and the least endorsed were hotlines (13%, 18%). Rural general adult respondents reported 45% lower odds of preferring online/video instruction than urban respondents (adjusted OR: 0.55, 95% CI 0.39- 0.78). No other associations were significant in the general adult population and none were significant among caregivers. Conclusion(s). No differences in training preferences for clinical care task instruction between rural and urban family caregivers were found. However, among the general population, rural individuals were less likely to prefer online/video instruction. Impact. Future research to replicate these findings should be conducted to determine whether telehealth supportive care modalities are acceptable for rural populations.

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Place4Carers: a mixed-method study protocol for engaging family caregivers in meaningful actions for successful ageing in place

Introduction: Engaging family caregivers could be a critical asset to make the 'ageing-in-place' imperative a reality. This is particularly evident in rural and remote areas, where caregivers can fill the gaps that exist due to the fragmentation of the welfare system. However, there is little knowledge about the expectations that family caregivers have from healthcare services in rural and remote areas.Place4Carers (P4C) project aims to co-produce an innovative organisational model of social and healthcare services for family caregivers of older citizens living in Vallecamonica (Italy). The project is expected to facilitate ageing-in-place for older citizens, thus helping caregivers in their daily care activities.; Methods and Analysis: P4C is a community-based participatory research project featuring five work packages (WPs). WP1 consists of a survey of unmet needs of caregivers and older people receiving services in Vallecamonica. WP2 consists of a scoping literature review to map services that provide interventions of support to caregivers living in remote areas and promote engagement. WP3 organises co-creation workshops with caregivers to co-design, co-manage, and co-assess ideas and proposals for shaping caregiver-oriented services and organisational models. WP3 enriches the results of WP1 (survey) and WP2 (scoping literature review), and aims to co-create new ideas for intervention support with and for caregivers in relation to the objectives, features and characteristics of a new service able to address the caregivers' needs and expectations. WP4 tests the service ideas co-created in WP3 through piloting an intervention based on ideas co-created with caregivers. Finally, WP5 assesses the transferability of the intervention to other similar contexts.; Ethics and Dissemination: The study has been approved by the Ethics Committees of the Department of Psychology of Università Cattolica del Sacro Cuore and Politecnico of Milan. Results will be disseminated through peer-reviewed journals, scientific meetings and meetings with the general population.

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The impact of caregiving on the health status of regional carers in Australia: Findings from a mixed‐method study

While it is known that informal carers provide the majority of caregiving in Australia, there remains limited understanding of the challenges that regional carers face in their caring role and the impact of the caregiving role on carer well‐being. Objective: The aim of this study was to better understand the health status of caregivers as the person they care for was entering the National Disability Support Scheme. Design: This is a mixed‐methods study. Setting: The study was undertaken in regional New South Wales, Australia. Participants: Seventy‐five carers were enrolled into the study. All lived in regional New South Wales. Main outcome measure: The World Health Organization Well‐being Index was used for quantitative data collection, and semi‐structured interviews were undertaken for the collection of qualitative data. Result: Quantitative data indicated that carers from Aboriginal or Torres Strait Islander backgrounds and those from low socio‐economic status had significantly lower scores on the well‐being index. Two key qualitative categories were evident describing carer's journey to resilience by (a) adjusting to reality predominantly through cognitive reframing strategies and (b) carers accessing external supports. Conclusion: The health status of regional carers who are predominantly women is experiencing low levels of well‐being. While many of these carers have initiated successful coping responses to the challenges of caring, there is an urgent need to increase the supports available to this population. As the recent National Disability Support Scheme is embedded, it is of importance to monitor if there are improvements in the health status of carers over time. 

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Figuring it out by yourself: Perceptions of home-based care of stroke survivors, family caregivers and community health workers in a low-resourced setting, South Africa

Background: In less resourced settings, formal rehabilitation services for stroke survivors were often absent. Stroke survivors were referred to community health workers (CHWs) who were untrained in rehabilitation.; Aim: To describe the experience and perceived needs of stroke survivors, their caregivers and CHWs in a context with limited access to and support from formal rehabilitation services.; Setting: The Breede Valley subdistrict, Western Cape, South Africa, a rural, less resourced setting.; Methods: A descriptive exploratory qualitative study. Four focus group interviews were held with purposively selected stroke survivors and caregivers and four with CHWs. A thematic approach and the framework method were used to analyse the transcripts.; Findings: A total of 41 CHWs, 21 caregivers and 26 stroke survivors participated. Four main themes and 11 sub-themes were identified. Because of the lack of knowledge, training and rehabilitation services, the main theme for all groups was having to 'figure things out' independently, with incontinence management being particularly challenging. Secondly was the need for emotional support for stroke survivors and caregivers. Thirdly, contextual factors such as architectural barriers and lack of assistive products negatively impacted care and function. Lastly, the organisation of health and rehabilitation services negatively impacted home-based services and professional support.; Conclusions: With appropriate training, the CHWs can be pivotal in the training and support of family caregivers and stroke survivors. Care pathways and the role and scope of both CHWs and therapists in home-based stroke rehabilitation should be defined and restructured, including the links with formal services.

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Family Burden in Caregivers of Elderly with Cognitive Impairment residing in Rural and Tribal Population of a District in Western India -- A Baseline Study

Study Objectives: The objective was to assess cognitive impairment (CI) in adults older than 59 years, residing in rural and tribal population and to assess family burden of those who had significant CI. Materials and Methods: This cross-sectional study was conducted among adults residing in the rural population of a block in a district located in Western India in 2015. A total of 240 households from 12 villages of the block were selected by multistage and random sampling method. Mini-mental state examination and Zarit Burden Interview tools were used to assess CI and burden. Data were entered in MS Excel 2007 and analyzed with descriptive statistics and Chi-squared test. Results: A total of 212 adults aged over 59 years were studied. The overall prevalence of CI was 42.92%. There was a statistically significant difference seen in CI among females as compared to males. Interview of primary care taker showed that 32 (35.16%) caregivers had little or no burden, 53 (58.24%) had mild-to-moderate burden, and 6 (6.59%) had moderate-to-severe burden, while none had a severe burden. Conclusions: Enabling caregivers to provide at home care for longer periods before hospitalization would decrease the burden of CI.

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End‐of‐life care in rural and regional Australia: Patients', carers' and general practitioners' expectations of the role of general practice, and the degree to which they were met

The study objective was to explore the characteristics of rural general practice which exemplify optimal end‐of‐life (EOL) care from the perspective of people diagnosed with cancer, their informal carers and general practitioners (GPs); and the extent to which consumers perceived that actual EOL care addressed these characteristics. Semi‐structured telephone interviews were conducted with six people diagnosed with cancer, three informal carers and four GPs in rural and regional Australia. Using a social constructionist approach, thematic analysis was undertaken. Seven characteristics were perceived to be essential for optimal EOL care: (1) commitment and availability, (2) building of therapeutic relationships, (3) effective communication, (4) psychosocial support, (5) proficient symptom management, (6) care coordination and (7) recognition of the needs of carers. Most GPs consistently addressed these characteristics. Comprehensive EOL care that meets the needs of people dying with cancer is not beyond the resources of rural and regional GPs and communities. 

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Determinants of caregiver burden of persons with disabilities in a rural district in Egypt

Background: Family caregivers are critical partners in the plan of care of people with disabilities. The study aims to demonstrate the factor structure and internal consistency of the Caregiver Burden Inventory (CBI) among the studied caregivers of disabled persons and to determine the effects of patients' and caregivers' characteristics on the burden and its dimensions. Methods: A cross-sectional study among 260 family caregivers of disabled patients was carried out in a randomly chosen rural area, Minia, Egypt, 2019. Exploratory factor analysis (EFA) was conducted to determine the factorial validity of the CBI. Multiple linear regression was used to identify the significant factors affecting the burden. Results: Factor analysis resulted in a five-factor solution using 20 items (four for each dimension) accounting for 72.7% of the total variance. The CBI and its dimensions showed high internal consistency (Cronbach's alpha value > 0.70). Education of caregiver, family income, mental impairments, and mixed disabilities were significant predictors of total CBI burden. Conclusions: CBI is an effective multidimensional measure of the caregiver burden of disabled subjects. Caregivers experienced a distinct level of burden that is determined by caregiver and care recipient characteristics. Therefore, support and individualized counseling services should be optimized.

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Challenges of Using Secondary Data to Study Rural Caregiving within the United States

When health fails, rural residents often turn to informal caregivers for assistance and are more likely to do so than those living in urban areas. Scholarship is clear in demonstrating the many burdens that accrue to those providing informal care. Furthermore, caregivers in rural areas face amplified health disparities and stressors, and limited access to resources and formalized supports. Yet, the study of informal caregiving within geographic context is made difficult by the limitations inherent in existing secondary data sources. In this report, we discuss three available data sources that provide information about US caregivers: the National Family Alliance Caregiving in the US Survey; Health and Retirement Survey; and National Survey of Midlife Development in the United States. These datasets illustrate common challenges of studying rural caregiving, including how to define rural residence, issues with data access, and difficulties attaining an adequate sample size. After reviewing these methodological issues, we identify two additional data sources that while promising, suffer from challenges of their own. We conclude by offering suggestions about how to capture the unique experiences of rural caregivers beyond the use of secondary data. 

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Informal support for people with Alzheimer's disease and related dementias in rural Uganda: a qualitative study

Background The generation of people getting older has become a public health concern worldwide. People aged 65 and above are the most at risk for Alzheimer's disease which is associated with physical and behavioral changes. This nurtures informal support needs for people living with dementia where their families together with other community members are the core providers of day to day care for them in the rural setting. Despite global concern around this issue, information is still lacking on informal support delivered to these people with dementia. Objective Our study aimed at establishing the nature of informal support provided for people with dementia (PWDs) and its perceived usefulness in rural communities in South Western Uganda. Methods This was a qualitative study that adopted a descriptive design and conducted among 22 caregivers and 8 opinion leaders in rural communities of Kabale, Mbarara and Ibanda districts in South Western Uganda. The study included dementia caregivers who had been in that role for a period of at least 6 months and opinion leaders in the community. We excluded trained health workers. Results The study highlights important forms of informal support offered to PWDs such as support in activities of daily living, enabling access to medical attention, recovering misplaced items, provision of herbal remedy, informal counseling, and sourcing carers from other families to offer presence and support in the hope to impact positively on behavioral outbursts and the frustration of living with dementia. Conclusion The study revealed various forms of informal support that are available for PWDs in South Western Uganda and stressed the role of caregivers and the perceived usefulness of the care provided.

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Comparing perspectives of family caregivers and healthcare professionals regarding caregiver burden in dementia care: results of a mixed methods study in a rural setting

BACKGROUND: Persons with dementia (PwD) need support to remain in their own homes as long as possible. Family caregivers, homecare nurses and general practitioners (GPs) play an important role in providing this support, particularly in rural settings. Assessing caregiver burden is important to prevent adverse health effects among this population. This study analysed perceived burden and needs of family caregivers of PwD in rural areas from the perspectives of healthcare professionals and family caregivers. METHODS: This was a sequential explanatory mixed methods study that used both questionnaires and semi-structured interviews. Questionnaires measuring caregiver burden, quality of life and nursing needs were distributed to the caregivers; health professionals received questionnaires with adjusted items for each group. Additionally, in-depth qualitative interviews were carried out with eight family caregivers. RESULTS: The cross-sectional survey population included GPs (n = 50), homecare nurses (n = 140) and family caregivers (n = 113). Healthcare professionals similarly assessed the psychosocial burden and stress caused by behavioural disturbances as most relevant. Psychological stress, social burden and disruptive behaviour (in that order) were regarded as the most important factors from the caregivers' perspective. It was found that 31% of caregivers reported permanent or frequent caregiver overload. Eight themes related to caregiver burden emerged from the subsequent interviews with caregivers. CONCLUSIONS: Professional support at home on an hourly basis was found to be highly relevant to prevent social isolation and compensate for lack of leisure among caregivers of PwD. Improvement of interprofessional dementia-related education is needed to ensure high-quality primary care. 

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Exploring Information and Referral Needs of Individuals with Dementias and Informal Caregivers in Rural and Remote Areas

Objectives: The provision of information and referral (I&R) and connection to support services is crucial for individuals with Alzheimer's disease and related dementias (ADRD) and their informal caregivers, especially in rural and remote regions where care and support resources may be limited. The purpose of this study was to develop a deeper understanding of needs for I&R from community stakeholders across a rural and remote state. Methods: A series of town hall meetings were conducted across ten communities in a frontier state. Results: Participants were 175 adults with a mean age of approximately 60 years (SD = 15 years); a majority were non-Hispanic white, female, and self-identified as informal caregivers. Three themes emerged as primary areas of need: (1) to address stigma related to ADRD; (2) to improve the availability of dementia-related I&R; and (3) to efficiently disseminate dementia-related I&R. Conclusions: Findings suggest the importance of a single point of access for I&R with presence in local communities as well as initial and ongoing assessment and provision of appropriate I&R throughout the course of ADRDs. Clinical Implications: Existing community resources and funding support should be leveraged for multiple points and means of access to reliable I&R.

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Barriers and facilitators to cancer treatment adherence for older Rural African Americans: Understanding the experience from the view of patients and their caregivers

The purpose of the present study was to understand the barriers that a particularly vulnerable sub-population of older adults experience in adhering to cancer treatments in rural eastern North Carolina. Qualitative descriptive interviews were completed with 16 individuals (8 cancer patients and their caregivers) about the challenges they face in adhering to cancer treatments. Three themes emerged based on the analysis which included transportation and financial barriers, and assistance that facilitated patients to adhere to treatment protocols. Transportation barriers were those associated with both the formal and informal systems. Financial barriers were related to costs associated with treatment. Participants also reported on ways in which adherence was facilitated via both formal and informal means. Our findings support those of previous research on treatment adherence and add information on the actions patients take in response to barriers that can negatively impact their disease trajectory. The knowledge gained can inform service providers about the issues in treatment adherence and help identify interventions that could support caregivers and patients to circumvent such challenges. 

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Supporting family caregiver engagement in the care of old persons living in hard to reach communities: A scoping review

Today, 8.5% of the world's population is 65 and over, and this statistic will reach 17% by 2050 (He et al., U.S. Census Bureau, international population reports, P95/16‐1, An ageing world: 2015, U.S., 2016). They are the people who, with increasing age, will find themselves more closely interfacing with the national health system, which in many countries shows strong imbalances between rural and urban areas. In this context, a fundamental role is played by the relatives who find themselves becoming informal caregivers to compensate for lack of services. To date, however, little has been done to help these people. In this article, we want to identify the nature and extent of research evidence that had its objective to help informal caregivers in rural, hard to reach areas (Grant & Booth, Health Information & Libraries Journal, 2009, 26, 91). Following the approach set out by Arksey and O'Malley (International Journal of Social Research Methodology, 2005, 8, 19), we conducted a scoping review in May 2018 and closed the review with an update in September 2018. We identified 14 studies published from 2012, the European Year of Active Ageing, promoted by the European Commission, which had three domains of implementation: emotional support to decrease the emotional burden of caregivers, educational support to increase their skills, and organisational support to improve the mobility of caregivers and carereceivers. Although informal caregivers play a fundamental role in many countries, the studies that have been involved in alleviating their caring burden are few; nevertheless, they provide interesting indications. This lack of attention confirms how this portion of the population is still neglected by scientific research and risks having unequal access to health and social care. Future research is needed, not only to create and improve services to caregivers in rural, hard to reach areas, but also to evaluate and focus on the participation and the engagement of caregivers in the co‐design of these services. 

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Contextual factors influencing medication management by rural informal caregivers of older adults

Background: Managing medications is an important part of the rural informal caregiver's role in the community setting, and the context within which care is provided plays an important role in shaping the work they perform. However, little is known about the intra- and interpersonal factors that impact the rural caregiver's involvement in and performance of medication management. Objectives: To identify contextual factors influencing medication management by rural informal caregivers of older adults. Methods: Four separate focus groups with rural caregivers of older adults were conducted with 5-9 caregivers per group. Participants were asked to describe the medication management activities performed and problems they encountered while providing assistance. Focus groups were recorded, transcribed verbatim, and analyzed for themes using an inductive approach. Results: Care recipient independence, or their ability and preference to perform medication-related activities without supervision, was a key factor driving the caregiver's involvement in medication management and how it was performed. Many caregivers used a team-based approach to medication management that supported the care recipient's independence. Care recipient health and function was a driver behind the need for caregiving, and declines in physical and mental health led to changes in how medication management was carried out over time. Caregiver location also impacted the ways in which medication management was performed by caregivers. Conclusions: Interventions and pharmacy services to support medication management by rural informal caregivers should be designed in a way that preserves and promotes the care recipient's independence, and should be tailored to the context within which caregiving is performed.

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The project ENABLE Cornerstone randomized pilot trial: Protocol for lay navigator-led early palliative care for African-American and rural advanced cancer family caregivers

Background: Patients newly-diagnosed with advanced cancer often rely on family caregivers to provide daily support to manage healthcare needs and maintain quality of life. Early telehealth palliative care has been shown to effectively provide an extra layer of support to family caregivers, however there has been little work with underserved populations, especially African-Americans and rural-dwellers. This is concerning given the lack of palliative care access for these underserved groups. Study design: Single-site, small-scale pilot randomized controlled trial (RCT) of Project ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone, a lay navigator-led, early palliative care coaching intervention for family caregivers of African-American and rural-dwelling patients with newly-diagnosed advanced cancer. Family caregivers are paired with a trained lay navigator overseen by specialist palliative care clinicians and receive a series of brief in-person and telehealth sessions focusing on stress management and coping, caregiving skills and organization, getting help, self-care, and preparing for the future/advance care planning. This pilot trial is assessing acceptability of the intervention, feasibility of recruitment and data collection procedures, and preliminary efficacy compared to usual care on caregiver and patient quality of life and mood over 24 weeks. Conclusion: Once acceptability and feasibility are determined and issues addressed, the ENABLE Cornerstone intervention for underserved family caregivers of persons with advanced cancer will be primed for a fully powered efficacy RCT. Given its use of lay navigators and telehealth delivery, the intervention is potentially highly scalable and capable of overcoming many of the geographic, human resource, and cultural obstacles to accessing early palliative care support.

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Understanding rural caregivers’ experiences of cancer care when accessing metropolitan cancer services: a qualitative study

Objective To explore the experiences of cancer caregivers who live in rural Australia and travel to a metropolitan cancer health service to access cancer treatment. Design A qualitative study using semistructured, audio-recorded interviews conducted between December 2017 and July 2018 with caregivers and social workers. Thematic analysis using interpretative descriptive techniques performed on textual interview data within a critical realist paradigm to develop understanding of rural caregivers’ lived experiences. Setting Participants were from rural areas attending a metropolitan cancer centre in Australia and social workers. Participants 21 caregivers (16 female) of people with cancer living in rural Australia within a minimum distance of 100 km from the metropolitan cancer centre where they access treatment, and five social workers employed at a metropolitan cancer service with experience of working with rural patients and caregivers. Results Thematic analysis developed two overarching themes: theme 1: caregiving in the rural setting describes the unique circumstance in which caregiving for a person with cancer takes place in the rural setting at considerable distance from the cancer service where the person receives treatment. This is explored in three categories: ‘Rural community and culture’, ‘Life adjustments’ and ‘Available supports’. Theme 2: accessing metropolitan cancer services captures the multiplicity of tasks and challenges involved in organising and coordinating the journey to access cancer treatment in a metropolitan hospital, which is presented in the following categories: ‘Travel’, ‘Accommodation’ and ‘Health system navigation’. Conclusions Caregivers who live in rural areas face significant challenges when confronting geographic isolation between their rural home environment and the metropolitan setting, where the patient accessed cancer treatment. There is a need for healthcare services to identify this group to develop feasible and sustainable ways to provide interventions that have the best chance of assisting rural caregivers in supporting the patient while maintaining their own health and well-being.

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A Comparison of Rural and Urban Hospice Family Caregivers' Cancer Pain Knowledge and Experience

Context: Family caregivers play a vital role in managing the pain of hospice patients with cancer; however, caregivers' knowledge of pain management principles and experiences as pain managers vary widely. Differences in cultural values and access to resources suggest that rural and urban hospice family caregivers may differ with regard to their pain knowledge and experience, but this has not been empirically investigated. Objectives: We sought to determine if rural and urban hospice family caregivers differed in terms of their knowledge of cancer pain management principles and their experiences managing cancer pain. Methods: Our study consisted of a secondary analysis of baseline, cross-sectional data from hospice family caregivers (N = 196) participating in an ongoing cluster randomized crossover pragmatic trial. We performed multivariable regression to model associations between caregivers' demographic characteristics and their scores on the Family Pain Questionnaire (FPQ), which included subscales measuring pain knowledge and experience. Results: When controlling for other demographic variables, rural caregivers' scores on the FPQ knowledge subscale were worse (P = 0.01) than their urban counterparts. FPQ experience subscale scores and FPQ total scores were not statistically significantly different between the two groups. Conclusion: Rural hospice family caregivers report greater pain knowledge deficits than urban hospice family caregivers, although the two groups report comparable pain management experiences. Additional research is needed to better explain observed differences.

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The Influence of Social Support and Care Burden on Depression among Caregivers of Patients with Severe Mental Illness in Rural Areas of Sichuan, China

Depression is one of the most common psychological consequences of caregiving. Caring for patients with severe mental illness (SMI) adds significant challenges to family caregivers' mental health. The purpose of this study was to describe the prevalence of depression among caregivers of SMI patients in rural areas of Sichuan province of China, to examine the influence of social support and care burden on depression, and to explore the intermediary effect of care burden between social support and depression among caregivers of SMI patients. Data were collected from 256 primary caregivers of SMI patients in rural Sichuan Province in China. We used structural equation modeling (SEM) to test the hypothesized relationship among the variables. We found that a total of 53.5% of caregivers had depression. Both care burden (β = 0.599, 95%CI: 0.392-0.776) and social support (β = -0.307, 95%CI: (-0.494)-(-0.115)) were directly related to depression, while social support had a direct association with care burden (β = -0.506, 95%CI: (-0.672)-(-0.341)). Care burden mediated the relationship between social support and depression. For the socio-demographic variables, gender, education level and per capita annual income of household had significant correlations with depression (p < 0.05). The results strongly demonstrated that social support and care burden were predictors of depression, especially social support. Policymakers should fully recognize the role of primary family caregivers in caring for SMI patients and promote interventions to decrease care burden and reduce caregivers' depression by improving social support and network. More attention should be given to female caregivers and caregivers with lower education and lower household income levels.

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Rural Dementia Caregivers in Southwest Texas: An Exploratory Study of Advance Directives and End-of-Life Proxy Decision Making

For a growing number of persons with dementia (PWDs), advance care planning (ACP) can help families make important end-of-life (EOL) care decisions that reflect PWDs' values and preferences. The current exploratory study aimed to understand advance directive planning and decision making among PWDs and caregivers. A survey was conducted with a convenience sample of 47 ethnically diverse PWD caregivers recruited from rural health care facilities in Southwest Texas. Sixty-eight percent of PWDs and caregivers were Hispanic. The majority of PWDs had completed an advance directive (60%) and preferred equally shared decision making between family (including the PWD) and physicians (57%). Under a hypothetical EOL scenario for PWDs, caregivers chose comfort (40%) and palliative care treatment (55%) more than other goals and treatment options. In this scenario, Hispanic PWDs were less likely than non-Hispanic White counterparts to complete an advance directive (48% vs. 81%, p < 0.05) and to choose only pain and symptom management (46% vs. 81%, p < 0.05). Although the overall ACP rates among rural PWDs may be comparable to those for the general PWD population, ethnic differences exist. More culturally competent education efforts are needed to promote ACP among PWDs in culturally diverse rural communities.

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Providing Care for Persons with Dementia in Rural Communities: Informal Caregivers' Perceptions of Supports and Services

Dementia is one of the costliest and most time-consuming diseases among older persons. Although informal caregivers provide the majority of care for persons with dementia, little is known about the self-perceived need for social services of caregivers of persons with dementia within rural areas. This pilot study examined the knowledge, access and intent of the practice-oriented service model of caregivers of persons with dementia in rural communities in the Midwest U.S. After a systematic training, researchers interviewed 11 rural caregivers of persons with dementia (n = 11). Data were analyzed using thematic analysis. Although similarities with other caregivers of persons with dementia were found, important differences suggesting unique issues among these rural caregivers of persons with dementia. Many participants found strength in their community, which often served as a safety net of support. Consistent with existing literature, participants expressed financial concerns, geographic barriers and lack of dementia-specific services when using formal services. The need for more specialized formal services in rural areas to supplement existing informal care networks is discussed. Policies and services based on rural caregivers' unique concerns and challenges and that build upon their existing care networks are recommended.

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Systematic review of patient and caregivers’ satisfaction with telehealth videoconferencing as a mode of service delivery in managing patients’ health

Telehealth is an alternative method of delivering health care to people required to travel long distances for routine health care. The aim of this systematic review was to examine whether patients and their caregivers living in rural and remote areas are satisfied with telehealth videoconferencing as a mode of service delivery in managing their health. A protocol was registered with PROSPERO international prospective register of systematic reviews (#CRD42017083597) and conducted in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. A systematic search of Ovid Medline, Embase, CINAHL, ProQuest Health Research Premium Collection, Joanna Briggs Institute and the Cochrane Library was conducted. Studies of people living in rural and remote areas who attended outpatient appointments for a health condition via videoconference were included if the studies measured patient and/or caregivers’ satisfaction with telehealth. Data on satisfaction was extracted and descriptively synthesised. Methodological quality of the included studies was assessed using a modified version of the McMaster Critical Review Forms for Quantitative or Qualitative Studies. Thirty-six studies of varying study design and quality met the inclusion criteria. The outcomes of satisfaction with telehealth were categorised into system experience, information sharing, consumer focus and overall satisfaction. There were high levels of satisfaction across all these dimensions. Despite these positive findings, the current evidence base lacks clarity in terms of how satisfaction is defined and measured. People living in rural and remote areas are generally satisfied with telehealth as a mode of service delivery as it may improve access to health care and avoid the inconvenience of travel.

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Physical and mental health of Chinese grandparents caring for grandchildren and great-grandparents

The increasing worldwide prevalence and intensity of grandparenting has attracted an attention to its health implications for caregivers against the backdrop of population aging. Thanks to prolonged life expectancy and reduced infant mortality, extended families that comprise four generations, co-residential or not, are no longer rare in China. The current study examines health consequences when Chinese grandparents provide care to not only grandchildren but also their own elderly parents or parents-in-law (i.e., great-grandparents). Drawing on data from the 2011–2013 China Health and Retirement Longitudinal Study (CHARLS), mental health was captured by levels of life satisfaction and depressive symptoms, and physical health was measured by levels of high sensitivity C-reactive protein (CRP), hypertension, high-risk pulse rate, and diabetes. Overall grandparents who cared for grandchildren only had better mental and physical health, compared with non-caregivers. There was some evidence that the 'sandwich' grandparents who cared for both grandchildren and great-grandparents reported greater life satisfaction, fewer depressive symptoms, and reduced hypertension compared with non-caregivers. The health advantage of caregiving was most pronounced in urban grandfathers whose caregiving conformed to the norm of filial piety and who did so most likely to seek emotional reward instead of an intergenerational time-for-money exchange. In contrast, rural grandmothers were the most vulnerable group and their health disadvantage seemed to arise from caring for great-grandparents. These findings highlight the importance of rural-urban context and gender role in studying the health effects of intergenerational caregiving on Chinese grandparents. • About 30% of the Chinese elderly are grandparents in four-generation families. • The majority of them care for grandchildren, great-grandparents, or both. • Urban grandfathers enjoy health benefits from intergenerational caregiving. • Rural grandmothers suffer health risks from intergenerational caregiving.

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Needs and rights awareness of stroke survivors and caregivers in urban and rural China: a cross-sectional, multiple-centre questionnaire survey

Objectives: Stroke survivors require assistance and support in their daily lives. This survey aims to investigate the needs and rights awareness in Chinese stroke survivors and caregivers in rural and urban settings.; Setting: This survey was adapted from the one created by the World Stroke Organization. The questionnaire included demands for psychological support, treatment and care, social support and information. From January 2015 to January 2016, the survey was pilot tested with urban and rural-dwelling stroke survivors and caregivers from 12 hospitals. Stroke survivors were invited to participate if they were over 18 years old and had experienced a stroke. Exclusion criteria were patients who had disorders of consciousness, significant cognitive impairment, aphasia, communication difficulties or psychiatric disorders. Only caregivers who were family members of the patients were chosen. Paid caregivers were excluded.; Participants: One thousand, one hundred and sixty-seven stroke survivors and 1119 caregivers were enrolled.; Primary Outcome Measures: The needs of stroke survivors and caregivers in rural and urban areas were compared. The correlations between needs of rural and urban stroke survivors and caregivers and potential effect factors were analysed, respectively.; Results: Among the cohort, 93.5% reported the need for psychological support, 88.6% for treatment and care, 84.8% for information and 62.7% for social support. The total needs and each aspect of needs of stroke survivors in urban settings were greater than of those in rural settings (p<0.01). In rural areas, total needs and each aspect of needs were positively correlated with education level (p<0.01).; Conclusions: Needs and rights awareness of stroke survivors should also be recognised in both urban and rural China. According to the different needs of patients and their caregivers, regional and individualised services were needed by stroke survivors and their caregivers.

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Preparedness for caregiving: A phenomenological study of the experiences of rural Australian family palliative carers

The care of people with life-limiting illnesses is increasingly moving away from an acute setting into the community. Thus, the caregiver role is growing in significance and complexity. The importance of preparing and supporting family caregivers is well established; however, less is known about the impact of rurality on preparedness and how preparedness shapes the caregiving continuum including bereavement. The aim of this study, conducted in 2017, was to explore how bereaved rural family palliative carers described their preparedness for caregiving. Interpretative phenomenological analysis was employed following semi-structured interviews with four women and six men (N = 10, aged 55-87 years). Participants were recruited voluntarily through past engagement with a Regional Specialist Palliative Care Consultancy Service in Australia. The experiences of caregivers illustrated a lack of preparedness for the role and were characterised by four major themes: Into the unknown, Into the battle, Into the void and Into the good. The unknown was associated with a lack of knowledge and skills, fear, prognostic communication, exclusion, emotional distress and grief experience. Battles were experienced in a number of ways: intrapsychically (existing within the mind), through role conflict and identity; interpersonally with the patient, clinician and family; and systematically (against health, financial and legal systems). The void was felt during isolation in caregiving, in relinquishing the role, in bereavement and in feeling abandoned by service providers. Positive experiences, such as being valued, included and connected to supports, and the fostering of closer relationships and deeper meaning, occurred less frequently but temporarily buffered against negative aspects. Implications from this study for policy and practice centre on the frequent, purposeful and genuine engagement of caregivers. Services and clinicians are encouraged to enhance communication practices, promote meaningful inclusion, address access issues and enhance support at role relinquishment.

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Dementia in rural settings: examining the experiences of former partners in care

Informal carers, also referred to as partners in care, provide the bulk of care to people living with dementia across a range of community settings; however, the changing experiences and contexts of providing informal care for people with dementia in rural settings are under-studied. Drawing on 27 semi-structured interviews with former partners in care in Southwestern and Northern Ontario, Canada, we examine experiences of providing and accessing care over the course of the condition and across various settings. Our findings illustrate the challenges associated with navigating the system of care, finding people who understand dementia in the surrounding community, negotiating hours of home support, facing resistance to respite from the person with dementia, and feeling pressured into long-term care. We argue that partners' time, bodies and choices are spatially constrained within rural and small-town settings and the current systems of home, community and long-term care.

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Family Caregivers' Perspectives for the Effect of Social Support on their Care Burden and Quality of Life: A Mixed-Method Study in Rural and Sub-Urban Central Japan

Japan has adopted community-based integrated long-term care, which has shifted the burden of care from institutions to the home. However, family caregivers have received less attention compared with care recipients. Many family caregivers are also older adults, and it is important that caregivers receive appropriate support to alleviate the burden of care. In rural and sub-urban area with limited resources compared to urban area, it is necessary to know which support to be prioritized. Therefore, this study aimed to understand family caregivers' perceptions of social support, the type and source of support which were considered important, and how it affected their caregiving burden and quality of life (QOL). We conducted a convergent mixed-method study with 174 primary family caregivers of older adults receiving home care in rural and suburb area of Central Japan. The mixed-method approach enabled qualitative data to complement quantitative results. Strong family support and higher education had positive effects on QOL, while higher caregiving burden and longer duration of care had negative effects on QOL. Provision of tangible support from family and healthcare professionals was central in reducing caregiving burden and improving caregivers' QOL. Support from distant relatives or neighbors, which was deemed inappropriate by caregivers, had a negative effect on caregivers' emotional status. In conclusion, family caregivers perceived support positively, but the effects depended on who provided support. While tangible support from close family and professionals was perceived positively, support from neighbors or distant relatives should consider caregivers' needs and condition to avoid a negative impact.

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We Are Caregivers: Social Identity Is Associated with Lower Perceived Stress among Rural Informal Caregivers

Informal caregivers often experience high stress levels with little support, especially in rural settings. With a mixed-methods approach, this research explored experiences of rural informal caregivers, including how social identification as a caregiver, social interactions, and formal and informal coping support related to perceived stress. Major focus group themes (n = 8) included lacking available services, balancing challenges, unmet practical needs, and strong community identity. Survey data (n = 22) revealed that perceived coping support (e.g., having someone to turn to), social interactions, and caregiver identity (e.g., perceiving the role as important to one's self-concept) were associated with lower life upset stress, but only caregiver identity was associated with managing the personal distress and negative feelings associated with caregiving stress. Results suggest that, although available rural services may fall short, other options might alleviate caregiver stress, including facilitating access to coping support, encouraging social interactions, and enhancing caregiver social identity.

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Identifying support needs to improve rural dementia services for people with dementia and their carers: A consultation study in Victoria, Australia

Objective: The support and service needs of people with dementia and their carers are not always addressed in rural regions, yet family carers play an important role in supporting the person living with dementia to remain living in their own home. This study sought to identify and prioritise service and support needs of people with dementia and carers. Design: A two-phase mixed methods study involving qualitative focus groups and a survey. Setting: A rural region in Victoria, Australia. Participants: People living with dementia, carers and health professionals. Results: Focus groups identified 12 areas of need. A follow-up survey reached consensus on the priority areas for service improvement. These included diagnosis and information access, dementia training, community understanding and carer support. Conclusion: Living in a rural region imposes significant challenges on people with dementia and carers. We need to find ways to address gaps in service provision for carers and people with dementia in rural settings and examine their applicability in other rural regions more broadly.

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Supporting carers in a remote region of Quebec, Canada: how much space for social innovation?

This research moves from the general hypothesis that assistance provided to a person needing support, and the effort needed to articulate work and care may, under certain conditions, become a factor in carers' inequality and vulnerability. The article presents the results of qualitative research conducted in Quebec, Canada, with carers of older people who also have full-time paid employment in the labour market, and on professionals providing these carers with services. It considers how the services offered to carers have been implemented and how they can affect carers' daily lives.

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Social support and self-rated health of African American women informal caregivers: urban and rural differences

In this study, the authors examined how geographic location might differently influence social support and self-rated health for rural and urban African American women caregivers. They used cross-sectional data from 253 urban and 263 rural women primary caregivers. Controlling for key demographic factors, the authors regressed caregivers’ self-rated health on social engagement, structural, and functional aspects of social support for urban and rural caregivers separately. The perception of family functioning was positively associated with urban and rural caregivers’ self-rated health. Urban caregivers reported having significantly more contact with their family and more informal helpers compared to rural caregivers. Furthermore, church attendance, a measure of social engagement, was significant for urban caregivers’ self-rated health, but not rural caregivers. The study findings affirmed the importance of foregrounding context and disaggregating social support, and point to the need for interventions targeting family functioning and paying attention to geographic location.

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Qualitative Analysis of Faith Community Nurse–Led Cognitive-Behavioral and Spiritual Counseling for Dementia Caregivers

This article presents themes emerging from semistructured interviews with dementia family caregivers in rural communities who participated in an integrative, cognitive-behavioral and spiritual counseling intervention, and with faith community nurses (FCNs) who delivered the intervention. The primary objectives of the counseling intervention were to ameliorate dementia caregivers’ depressive affect and the severity of their self-identified caregiving and self-care problems. The qualitative portion of the study was intended to elicit caregivers’ and FCNs’ perceptions of the benefits and drawbacks of the intervention. We conducted interviews with seven FCN/caregiver pairs 4 times during the 6-month counseling process, totaling 56 interviews. Themes emerging from the interviews included caregivers’ perception of burden and care partners’ problem behavior; formation of therapeutic alliance between FCNs and caregivers; problem-solving skills, tools, and resources; caregivers’ use of problem-solving strategies; spirituality in caregiving and counseling processes; FCNs’ prior professional experience; and caregiver and FCN time constraints.

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Caregiving, Employment and Social Isolation: Challenges for Rural Carers in Australia

Australia has one of the world’s highest life expectancy rates, and there is a rapidly growing need for informal caregivers to support individuals who are ageing, have chronic illness or a lifelong disability. These informal carers themselves face numerous physical and psychological stressors in attempting to balance the provision of care with their personal life, their work commitments and family responsibilities. However, little is known about the specific challenges facing rural carers and the barriers that limit their capacity to provide ongoing support. A cross-sectional survey composed of open-ended responses and demographic/socioeconomic measures used routinely by the Australian Bureau of Statistics (ABS) and the Australian Institute of Health & Welfare (AIHW) was used with a cohort of 225 rurally-based carers within New South Wales, Australia. Demographic questions specified the respondents’ age, gender, employment, caregiving status, condition of and relationship to the care recipient, postcode, residency status, and distance and frequency travelled to provide care. Open-ended comments sections were provided to allow participants to describe any issues and problems associated with caregiving including employment, travel, residency, carer support groups and any other general information. The results show that most rural carers were middle-aged women supporting a spouse or a child. Unpredictability associated with providing care exacerbated demands on carers’ time, with many reporting significant employment consequences associated with inflexibility and limited job options in rural locations. Specific issues associated with travel requirements to assist with care were reported, as were the impacts of care provision on the respondents’ own personal health. The majority of carers were aware of the social supports available in their local rural community, but did not access them, leaving the carers vulnerable to marginalisation. Problems associated with employment were noted as resulting in financial pressures and associated personal stress and anxiety for the caregivers. While this issue is not necessarily limited to rural areas, it would appear that the lack of opportunity and flexibility evident in rural areas would exacerbate this problem for non-metropolitan residents. The participants also identified specific barriers to the provision of care in rural areas, including the significant impact of travel. Access to support services, such as carer groups, were rarely accessed due to a mix of factors including inaccessibility, poor timing and a lack of anonymity. Financially, there was considerable evidence of hardship, and there is an urgent need for a comprehensive review of government and community-based support to better meet the needs of rural carers.

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The relationship between geographical and social space and approaches to care among rural and urban caregivers caring for a family member with Dementia: a qualitative study

Knowledge about family caregivers in rural areas remains sparse. No studies to date have addressed the sociocultural aspects in caregiving, thus neglecting potentially significant data. This study aimed to explore and better understand family caregivers' experiences in rural and urban areas and the sociocultural spheres that these two areas represent. How do family caregivers approach their caregiving situation? A hermeneutical approach was chosen to uncover the underlying meanings of experiences. Open-ended in-depth interviews were conducted. The ontological and epistemological roots are based on hermeneutic philosophy, where a human being's existence is viewed as socially constructed. The study followed a purposeful sampling. Semi-structured in-depth interviews were conducted with 12 rural and 11 urban family caregivers to persons with dementia. These were then analyzed in accordance with the hermeneutical process. The findings provide insight into the variations of family caregiver approaches to caregiving in rural and urban areas of Sweden. There seemed to be a prevalence of a more accepting and maintaining approach in the rural areas as compared to the urban areas, where caregiving was more often viewed as an obligation and something that limited one's space. Differences in the construction of family identity seemed to influence the participants approach to family caregiving. Therefore, community-based caregiving for the elderly needs to become aware of how living within a family differs and how this affects their views on being a caregiver. Thus, support systems must be individually adjusted to each family's lifestyles so that this is more in tune with their everyday lives.

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Informal care‐giving and mental ill‐health – differential relationships by workload, gender, age and area‐remoteness in a UK region

Informal care‐giving can be a demanding role which has been shown to impact on physical, psychological and social well‐being. Methodological weaknesses including small sample sizes and subjective measures of mental health have led to inconclusive evidence about the relationship between informal care‐giving and mental ill‐health. This paper reports on a study carried out in a region which investigated the relationship between informal care‐giving and mental ill‐health. The analysis was conducted by linking three data sets, the Northern Ireland Longitudinal Study, the Northern Ireland Enhanced Prescribing Database and the Proximity to Service Index from the Northern Ireland Statistics and Research Agency. Our analysis used both a subjective measure of mental ill‐health, i.e. a question asked in the 2011 Census, and an objective measure, whether the respondents had been prescribed antidepressants by a General Practitioner between 2010 and 2012. We applied binary logistic multilevel modelling to these two responses to test whether, and for what sub‐groups of the population, informal care‐giving was related to mental ill‐health. The results showed that informal care‐giving per se was not related to mental ill‐health, although there was a strong relationship between the intensity of the care‐giving role and mental ill‐health. Females under 50, who provided over 19 hours of care, were not employed or worked part‐time and who provided care in both 2001 and 2011 were at a statistically significantly elevated risk of mental ill‐health. Caregivers in remote areas with limited access to shops and services were also at a significantly increased risk as evidenced by prescription rates for antidepressants. With community care policies aimed at supporting people to remain at home, the paper highlights the need for further research in order to target resources appropriately.

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Informal Care and Labor Market Outcomes: Evidence From Chinese Married Women

Data were used from the 1991–2009 China Health and Nutrition Survey to examine the influence of informal care on labor market outcomes for married women of working aged, with emphasis on caregiving intensity. After accounting for potential endogeneity between caregiving and labor force participation (LFP) through simultaneous equations modeling, caregivers who provided more than 15 or 20 hr of caregiving per week were 4.5–7.7% less likely to be LFPs. Intensive caregivers who remained working had significantly lower (4.97–7.20) weekly hours of work. The significant positive effect of informal care on LFP only existed in the rural sample, and these women also had much lower hours of work than their urban counterparts. Opportunities exist for policy interventions that target intensive caregivers in order to allow them to balance both work and caregiving.

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Discussion Paper 10 Rural Carers in Ireland: Challenges and Opportunities

Traditionally, the majority of the population of Ireland have lived in rural areas outside of large towns and cities. However, this has changed over time, and in 2016 just over 37% of the population lived in an ‘aggregate rural area’ – which is an area of less than 1,500 inhabitants. The percentage of family carers living in these same rural aggregate areas is higher, at almost 42%.

The National Carers Strategy (2012) identifies ‘rural carers’ as a ‘subgroup’ of family carers (along with male carers, young carers and older carers) whose needs must be specifically addressed. Specific challenges face family carers living in rural or sparsely inhabited areas. While there are family carer support organisations across the country, operating and providing supports nationwide, not all of the challenges facing family carers can be addressed by support organisations alone.

This paper outlines some of these key issues, investigates some of the international research and responses to rural family carer challenges, and sets out some additional responses which are necessary in an Irish context.

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Adapting an Early Palliative Care Intervention to Family Caregivers of Persons With Advanced Cancer in the Rural Deep South: A Qualitative Formative Evaluation

Context: There is a scarcity of early palliative care interventions to support family caregivers of persons with advanced cancer living in the rural Southern U.S. Objective: The objective of this study was to adapt the content, format, and delivery of a six session, palliative care, telehealth intervention with monthly follow-up for rural family caregivers to enhance their own self-care and caregiving skills. Methods: Qualitative formative evaluation consisting of one-on-one, semistructured interviews with rural-dwelling persons with metastatic cancer (n = 18), their primary family caregiver (n = 20), and lay patient navigators (n = 26) were conducted to elicit feedback on a family caregiver intervention outline based on published evidence-based interventions. Transcribed interviews were analyzed using a thematic analysis approach. Coinvestigators reviewed and refined preliminary themes. Results: Participants recommended that intervention topical content be flexible and has an adaptable format based on continuous needs assessment. Sessions should be 20 minutes long at minimum, and additional sessions should be offered if requested. Faith and spirituality is essential to address but should not be an overarching intervention theme. Content needs to be communicated in simple language. Intervention delivery via telephone is acceptable, but face-to-face contact is desired to establish relationships. Other Internet-based technologies (e.g., video-conferencing) could be helpful, but many rural dwellers may not be technology savvy or have Internet access. Most lay navigators believed they could lead the intervention with additional training, protocols for professional referral, and supervision by specialty-trained palliative care clinicians. Conclusions: A potentially scalable palliative care intervention is being adapted for family caregivers of rural-dwelling persons with advanced cancer and will undergo piloting in a small-scale randomized controlled trial. 

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Rural end-of-life care from the experiences and perspectives of patients and family caregivers: A systematic literature review

Background: End-of-life care must be relevant to the dying person and their family caregiver regardless of where they live. Rural areas are distinct and need special consideration. Gaining end-of-life care experiences and perspectives of rural patients and their family caregivers is needed to ensure optimal rural care.; Aims: To describe end-of-life care experiences and perspectives of rural patients and their family caregivers, to identify facilitators and barriers to receiving end-of-life care in rural/remote settings and to describe the influence of rural place and culture on end-of-life care experiences.; Design: A systematic literature review utilising the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.; Data Sources: Four databases (PubMed, CINAHL, Scopus and Web of Science) were searched in January 2016, using a date filter of January 2006 through January 2016; handsearching of included article references and six relevant journals; one author contacted; pre-defined search terms and inclusion criteria; and quality assessment by at least two authors.; Results: A total of 27 articles (22 rural/remote studies) from developed and developing countries were included, reporting rural end-of-life care experiences and perspectives of patients and family caregivers. Greatest needs were informational (developed countries) and medications (developing countries). Influence of rural location included distances, inaccessibility to end-of-life care services, strong community support and importance of home and 'country'.; Conclusion: Articulation of the rural voice is increasing; however, there still remain limited published rural studies reporting on patient and family caregivers' experiences and perspectives on rural end-of-life care. Further research is encouraged, especially through national and international collaborative work.

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"I wanted to learn how to heal my heart": family carer experiences of receiving an emotional support service in the Well Ways programme

Family carers of people with mental illness provide an immense contribution to society in caring for mental health consumers. However, carers can experience substantial burdens and poor health outcomes themselves. Recognition of their needs for education and support has led to the development of a range of family education programmes. Throughout Australia, the Mental Illness Fellowship Australia offers the Well Ways programme, a group-based, family-to-family, education programme that provides information and aims to increase carers' capacity to care effectively for themselves, their families, and the mental health consumers. This paper describes a qualitative evaluation of an emotional support service piloted in a Well Ways programme in rural Queensland, Australia. The pilot service comprised individual emotional support offered to family carers attending the weekly Well Ways group education programme. Six of eight family carers who received the emotional support engaged in semistructured interviews exploring their experience of receiving the support. Three themes emerged from their experience: dealing with difficult times, connecting through shared experience, and exploring different options. Family carers found the emotional support beneficial, and reported that it enhanced their capacity to manage their own well-being, as well as their caregiving roles.

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The experience of caring for older people with dementia in a rural area: using services

Reports on findings from the carer component of the Gwynedd Dementia Study. It is based on carer interviews, using quantitative and qualitative data. It describes the carers, their perceptions of their dependents' problems, the common challenges they face, their experiences of formal and informal support and, with reference to the literature, identifies implications for policy and practice. Levels of formal service inputs were low, but most of the carers appeared to receive the services they needed. Problems are primarily associated with crisis support and long-term care is accepted reluctantly. Suggests that community care dementia specialists could play a supporting role for carers.

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Who's there and who cares: age as an indicator of social support networks for caregivers among people living with motor neurone disease

This paper explores the social support networks available to the informal carers of people living with motor neurone disease (MND). An ethnographic case study was undertaken using ecomapping, observation and conversational interviews to collect data from 18 primary carers of people living with MND. Interviews took place in participants’ homes in metropolitan, regional and rural locations. Participants discussed the content of their support network and drew lines between individuals to indicate the type and strength of relationship. Changes to the network were depicted on ecomaps during subsequent interviews. While health policy-makers assume that healthy social capital exists in Australian communities and that social cohesion will ensure active and available support networks in times of illness or disability, data from this exploratory study indicated that this was not consistently the case. Support networks varied in size and composition; however, age was identified as a discriminator of the availability and consistency of support. People in older age groups identified more diverse but consistent support systems while people in younger age groups reported more fluctuations in the strength of relationships and declines in support as caregiving became more demanding. Individual assessment of support networks at regular intervals in the caregiving trajectory is vital for all carers. However carers in younger age groups may need specific support to manage the psychological crises that occur and more access to paid care. Older carers may need consistent support to handle more of the instrumental aspects of care and assistance to mobilise their support networks. Community workers should be alert to the possible need for crisis intervention when tensions in relationships threaten carers’ ability to provide effective care.

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The amount of informal and formal care among non-demented and demented elderly persons - Results from a Swedish population-based study

Background: Developed countries are experiencing a dramatic increase in the proportion of elderly persons, as well as a progressive aging of the elderly population itself. Knowledge regarding the amount of formal and informal care and its interaction at population-based level is limited.

Objectives: To describe the amount of formal and informal care for non-demented and demented persons living at home in a population-based sample.

Methods: The population consisted of all inhabitants, 75 + years, living in a rural community (n = 740). They were clinically examined by physicians and interviewed by nurses. Dementia severity was measured according to Washington University Clinical Dementia Rating Scale (CDR). Informal and formal care was examined with the RUD (Resource Utilization in Dementia) instrument.

Results: The amount of informal care was much greater than formal care and also greater among demented than non-demented. There was a relationship between the severity of the congnitive decline and the amount of informal care while this pattern was weaker regarding formal care. Tobit regression analyses showed a clear association between the number of hours of informal and formal care and cognitive decline although this pattern was much stronger for informal than formal care.

Conclusions: Informal care substitutes rather than compliments formal care and highlights the importance of future studies in order to truly estimate the amount of informal and formal care and the interaction between them. This knowledge will be of importance when planning the use of limited resources, and when supporting informal carers in their effort to care for their intimates. Copyright © 2005 John Wiley & Sons, Ltd.

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Rural carers online: A feasibility study

Objective: To test the feasibility (for a potential randomised controlled trial) of a computer intervention for improving social interaction and promoting the mental health of rural carers.

Design: The study combined pre- and post-intervention measures with interviews to determine the feasibility of the intervention and the acceptability of the study design to participants. The intervention consisted of providing 14 rural carers with computers and a 4-week training program on basic computer skills, using email and the Internet.

Setting: The study was conducted in a rural community setting.

Participants: The carers were 12 women and two men, aged from 50 to 81 years, with an average of 65.5 years.

Main outcome measures: Measures of social isolation (UCLA Loneliness Scale), depression (Geriatric Depression Scale), carer burden (Zarit Burden Interview) and computer confidence were taken at baseline and at a 3-month follow-up. Interviews were completed at follow-up to discuss outcomes of the study. A focus group discussion was conducted with 11 participants to discuss the study and resolve computer issues.

Results: Most carers reported increased confidence in email and Internet use. There was improvement for most participants in depressive symptoms and social isolation, but little change in carer burden. Participants identified many social benefits associated with the computer intervention, such as intergenerational connection, community building, skills and confidence and preparation for the future.

Conclusion: The intervention was found to be practical and acceptable for a group of older carers. It was concluded that it would be feasible to conduct a large randomised controlled trial of the intervention.

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Mental health academics in the university departments of rural health: Roles and contributions

The author comments on the limited access to Australian mental health care particularly in rural and remote settings. He cites an article by Alexander and Fraser which reports that poor access to specialists and mental health services in some rural settings prevents patients from being treated by their general practitioners. Due to this, the large burden of care falls to families and informal carers. Recommendations on how to improve access to mental health services are also discussed.

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Dementia services in remote and rural areas

The authors review current research on provision of services to older people and their carers in remote and rural areas across the UK, with specific reference to Scotland. They consider the policy implications for dementia services in this context.

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Urban-rural comparisons of outcomes for informal carers of elderly people in the community: a systematic review

As the age of the general population increases, the number of elderly people who need care is increasing. It has been suggested that rural carers may be disadvantaged compared to urban carers, but it is not clear what affect geographic location has on carers. This paper presents a systematic review of the literature on urban–rural comparisons on various outcomes for informal carers who provide care for elderly people in the community. Of 150 articles that were reviewed, eight articles were included with three themes in the outcomes for carers: service use, health promotion behaviors and psychological health (such as carer stress, burden or depressive symptoms). Overall, there were few consistent or statistically significant differences between urban and rural carers. Many of the differences observed were explained by other factors, such as carer or care recipient characteristics. The literature search was limited to papers in the English language, involving quantitative methods and published in peer-reviewed journals. There were not enough studies found to examine other outcomes or to pool data across studies. There is too little evidence comparing urban and rural carers to inform clinicians and policy makers. More good-quality research is urgently needed.

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Caregiving patterns in rural Andean Colombia

Are there local cultural ideals of filial caregiving responsibility - a type of repayment of a debt to parents - and do they differ by gender? How are filial caregiving responsibilities allocated among siblings in such instances, and how do they fit cultural ideals? Is caregiving negotiated among siblings; and if so, how? This qualitative study conducted in rural Andean Colombia is based on a sample of thirty-eight interviews differentiated by gender and employment in the (formal and informal) labor market, with individuals who have at least one parent in need of care and at least one living sibling of the opposite gender. The study explores the cultural definition of caregiving, the ideal norms of who should care for parents, and the actual gendered patterns of caregiving. This interdisciplinary study expands existing research in the health and social sciences by exploring the pathways to becoming a caregiver.

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Accessing mental health services for older people in rural South Australia

Mental healthcare for older people is primarily delivered in the community with informal carers, usually family providing much of this. Older people often require input from a range of services across sectors. In Australia, the different funding and governance structures of these services makes for a complex landscape for older people, their families and mental health workers to navigate. As many people now care into later life, the consequences of not getting the required support include the potential for increased carer burden and reduced capacity to fulfil caring tasks. To help address this, partnerships between carers and service providers are recommended. We were interested in exploring rural carers' experiences of accessing care from a range of services for older people with mental health problems with the view to identify what was currently working, as well as what could be changed to improve service access, coordination of care and positive experience of care.

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Linkages between migration and the care of frail older people: observations from Greece, Ghana and the Netherlands

There are at least four ways in which old age and migration cross each other’s paths. First of all, there are people who migrated for economic reasons, usually at a relatively young age, and who have grown old in a foreign country. Secondly, there are older people who migrate when (or because) they are old: in Europe, they are mostly from the affluent northern countries and travel southward. Thirdly, there is increasing employment of, and demand for, immigrant workers in old-age institutions in the northern countries. Finally, there is the out-migration of young people, mainly from rural areas, that results in older people being left behind without children to look after them. In all these cases, migration has a profound effect on the wellbeing and care of older people. The authors of this article explore a fifth linkage between migration and old age, by focusing on the (mainly illegal) immigrants who take on roles as private carers and, in effect, replace the children who have emigrated. Two cases, from Greece and Ghana, are presented and viewed in the two countries’ political, cultural and economic contexts, and are then compared to conditions in The Netherlands. In both cases, involving a ‘ stranger’ in the care of an older parent is regarded as a good and respectable solution to the problem of absent children and grandchildren: it follows rules of reciprocity and normally provides a good quality of care. Ironically, hiring full-time private care for older people is feasible in low-income countries but a rare luxury in high-income societies.

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Service utilisation by carers of people with dementia in rural Victoria

Aim: To explore the use of community and dementia-specific services by informal carers caring for someone with dementia in a rural setting.

Methods: Carers of people with dementia were recruited through a variety of rural community services and invited to complete a survey related to the utilisation of community services.

Results: A total of 39 carers completed surveys. Despite 84% reporting use of the Aged Care Assessment Service and 61% reporting provision of printed information on the services available, less than half of the carers utilised commonly available support services. Only 46% received financial compensation for their carer role.

Conclusions: Rural carers of care recipients with behavioural and psychological symptoms of dementia underutilise community services. Services that may assist with carer stress and depression and services that provide advice on the management of distressing behavioural and psychological symptoms of dementia were utilised by less than half of the carers surveyed.

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Carers' experiences of accessing and navigating mental health care for older people in a rural area in Australia

Objectives: Mental health care for older people is primarily delivered in the community and is largely dependent on informal carers. Mental health policy encourages partnerships between carers and service providers to facilitate service access, coordination and positive experience of care. However, carers often lack information and support from services, with the potential for carer burden, and negative impacts on their own health and capacity to fulfil caring tasks. This paper explores rural carers' experiences of accessing care from a range of services for older people with mental health problems.

Method: The Pathways Interview Schedule was used to facilitate 9 in-depth care journey interviews with 11 carers of older people with a mental health problem. Interviews explored their journeys to and through mental health, aged care, primary care and social care services. Framework analysis was used to explore carers' experiences and perceptions of care with a focus on access enablers and barriers.

Results: Carers had a significant role in navigating services and operationalising care for their relative. Enablers to accessing care included carer knowledge and workers actively involving carers in planning. Barriers included carer mental health literacy, consumer and carer readiness for services, and worker misinterpretation of confidentiality and privacy laws.

Conclusion: Carers should be considered key partners in mental health care planning that crosses service sectors. For this to occur, changes are required at the worker level, including increased communication between mental health workers and carers, and the service level, involving training for staff in interpreting confidentiality and privacy policy.

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Rural dementia carers: formal and informal sources of support

Primary carers provide much of the day-to-day care for community-dwelling people living with dementia (PWD). Maintaining that contribution will require a more in-depth understanding of the primary carer role and the support needs that flow from that role. This study explored patterns of formal and informal support utilisation by people caring for a PWD in a rural-regional context. In-depth semi-structured interviews were conducted with 18 rural primary carers of a PWD and thematically analysed. Participant primary carers' almost total commitment to, and absorption in their role and their assumption of ultimate responsibility for the PWD's wellbeing meant that external social context, such as rurality, became less relevant. Carer networks effectively contracted to those key individuals who were central to supporting them in their caring task. External sources of support were tightly managed with strong boundaries around the provision of direct care to the PWD largely excluding all but professional providers. Primary carers are generally categorised along with other family and friends as informal care. However, in assuming primary responsible for the care and wellbeing for the PWD they effectively become the key care provider, suggesting that it would be productive in both research and practice to treat primary carers as key members of a care partnership alongside professional carers, rather than as adjuncts to formal care and/or another client.

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Supporting rural carers : understanding the role of the voluntary sector

Findings from a small scale evaluation of one local voluntary sector carers' organisation in the north of England are used to discuss the commissioning of carers support services in rural areas. The issues raised match closely those identified in the new national strategy for carers both in terms of analysis of need and suggested responses. Respite in order to facilitate 'time out' and personalisation of services through a dedicated support officer emerge as the most important elements of service delivery from the carers' perspective. However, the evidence suggests that current provision is still too limited and that much remains to be done to support carers in their role more effectively. [Abstract]

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Family care-giving and decisions about entry to care : a rural perspective

The aim of this qualitative study was to explore rural family carers' experiences of the nursing home placement of an older relative. The study was undertaken in a large Health and Social Care Trust in Northern Ireland using a grounded theory approach. Purposive sampling was used to initiate data collection and thereafter theoretical sampling was employed. Semi-structured interviews were conducted with 29 relatives of nursing home residents and the resultant data were recorded, transcribed and analysed using constant comparisons. The software package, QSR NVivo, was used to facilitate data management and retrieval. Older people had deep attachments to their homes and entry to care was a last resort. Rural family carers had close relationships with health- and social-care practitioners and felt supported in the decision-making process. The choice of home was a foregone conclusion for carers who had a strong sense of familiarity with the nursing homes in their area. This familiarity was influenced by the relatively rural communities in which respondents resided and by an efficient ‘grapevine’, which seemed to thrive in these small communities. This familiarity, in turn, influenced the choice of nursing home, timing of the placement and responses of family carers. The findings indicate that issues such as rurality and familiarity warrant a more detailed exploration in future research on entry to care.

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Caring for our future: reforming care and support: equality analysis

This document sets out how the Department of Health has met the Public Sector Equality Duty during policy development, in line with the five chapters of the White Paper. The chapters are: I am supported to maintain my independence for as long as possible; I understand how care and support works, and what my entitlements and responsibilities are; I am happy with the quality of my care and support; I know that the person giving me care and support will treat me with dignity and respect; and I am in control of my care and support. The analysis draws on available evidence, including the findings from the 'Caring for our future'  engagement and consultation with the care and support community. The final chapters summarises the main likely impacts of the reform of the care and support system on key equality groups (age, carers, disability, gender, race, religion, rural communities, sexual orientation and transgender, socio-economic status) and outlines the next steps for reform.

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Listening to the voices of young carers using Interpretative Phenomenological Analysis and a strengths-based perspective

The 2011 census suggested that 244,000 young people in England and Wales under 19 provide unpaid care for someone with an illness or disability (Office for National Statistics, 2013). Young carers are not a homogeneous population; they represent children and young people from a variety of backgrounds with diverse experiences. Young carers are described as a 'hidden population' (H.M Government, 2010) hence the prevalence of young carers may be larger than data sources reveal. Previous research has identified negative aspects of caregiving and the impact on education, social, emotional, physical health and wellbeing. Young carers seem to be a vulnerable group and marginalised population, yet there is little reference to young carers in educational psychology literature. This research sought to listen to the voices of this hidden population from a strengths-based perspective to consider if this adds to our understanding of their resilience. The research adopted an inductive constructionist approach using Interpretative Phenomenological Analysis (IPA). Six participants aged between 11 and 13 years were recruited from a large rural Young Carers Project to attend three separate interviews. Participants were caring for a parent with a mental illness. Findings illustrated these young carers had very individual and complex lives, full of tensions, yet they found ways of managing and adapting to their situations. Implications for raising the profile of individuals with complex lives are discussed and consideration given to a sensitive, individualised and flexible response.

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Giving care to people with symptoms of AIDS in sub-Saharan Africa

In rural sub-Saharan Africa, most care for patients with AIDS is provided at home by relatives. Caring for those with AIDS is assumed to be a substantial burden, but little is known from the perspectives of those who provide the care. In this paper we use interviews with caregivers, supplemented with survey data from a larger study in rural Malawi, to investigate this issue. We focus on the caregivers’ diagnoses of the illness of their patients, the type and duration of the care they provided, the support they received from relatives and other members of the community, and the extent to which caregiving was experienced as an emotional, physical, and financial burden. Although none of the caregivers knew of a formal diagnosis and few explicitly named their relative's disease as AIDS, most appeared to suspect it. They described the illness using the typical symptoms of AIDS as they are locally understood and sometimes related the illness to their patient's sexual history. The care, typically given by close female relatives of the patient, was limited to the care that would be given to anyone who was seriously ill. What was striking, however, was the compassion of the caregivers and the attempts they made to provide the best care possible in their circumstances. For most caregivers, kin and members of the community provided social, moral, and physical support, as well as modest financial assistance. Caregiving was physically and emotionally demanding and confined the caregivers to their home, but most caregivers did not consider caregiving a problem primarily because the patients were close relatives. The financial impact of caregiving was typically modest because the caregivers had very little income and few possessions to sell.

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The challenges associated with providing community care for people with complex heeds in rural areas: a qualitative investigation

The aim of the present study was to explore the experiences of recipients and providers of community care in rural areas in Northern Ireland. Additionally, the authors sought to examine the impact of location, housing and environmental factors on the delivery of community care to older people with complex needs. Individual, semistructured interviews were held with service users (n = 17) and family carers (n = 14). Individual and focus group interviews were conducted with care assistants, health and social care professionals, and senior managers from a large health and social care trust and health and social services board in Northern Ireland. The importance of enabling older people to remain in their own homes and communities was emphasised by all participants. The main challenges associated with care provision in rural areas included: difficulties recruiting care assistants; lack of choice of care assistants; isolation; travel and distance between clients and their care assistants; and poor housing conditions. There was a general consensus among participants that the effectiveness of rural community care was perceived to be reliant upon the goodwill of the community. Additionally, changing demographic trends and the predicted shortfall in the number of formal and informal carers were considered key issues for service planners. A number of creative strategies could be used to address many of the limitations associated with rural isolation. These should involve capitalising on available community networks. However, planners should also acknowledge that additional resources are required to maintain older people in rural communities.

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A lifeline for carers in rural communities

Scottish Highlands: Elizabeth Jones reports on a three-year project providing support to carers of people with dementia in remote, scattered communities in the Highlands of Scotland.

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Informal care in farming families in Northern Ireland: some considerations for social work

This paper is the result of a study of the dynamics of care-giving within farming families in Northern Ireland. It is argued that whilst much is known about informal care, existing knowledge is largely urban based and quantitative, and therefore limited. Following in-depth interviews with 'farm wives' it is concluded that for these women care-giving patterns are dependent on a particular set of cultural expectations and norms. Within farming families there is much resistance to becoming involved with formal social services. Outside help with the care of one's elderly relatives is often seen as an admission of failure, as there is a pride in being able to look after one's family members. Users of social services, which still evoke associations with the Poor Law, are highly stigmatized. It is claimed that for these women the concept of 'carer' has no bearing on their lives and is not something to which they can relate. The paper challenges the depiction of caring as a one-sided difficult relationship where the person being cared for is a passive recipient. It is suggested that caring is not necessarily oppressive but may be rewarding and positive. It concludes that if social workers are to support and facilitate informal care they must be aware of and fully understand the diversity of care provision and the different contexts in which care is undertaken. If intervention is to take place then it must be sensitive to the deeply embedded ideas and perceptions that exist within farming families.

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Carer satisfaction with end-of-life in Powys, Wales: a cross-sectional survey

A cross-sectional postal survey of bereaved carers was conducted in order to examine levels of satisfaction with services provided for people in their last year of life in the rural county of Powys, Wales, UK. A self-complete questionnaire, using a modified version of the Views of Informal Carers – Evaluation of Services instrument was sent to all bereaved carers of all those people dying of cancer in Powys between 1 April 1999 and 30 June 2001. Eight hundred and five (out of a possible of 815 people) were contacted and 407 agreed to receive the questionnaire. Out of these 407 individuals, 301 (74% of those who agreed to receive a questionnaire and 37% of the 815 contacted) returned a completed questionnaire. A single reminder letter was sent to non-responders. It was found that the majority of those who received help from district nurses or practice nurses (90%) said that they were excellent or good. However, nearly 40% of respondents reported needing more nursing help. More help was also needed from social care services. For 103 out of the 301 respondents, it was known that the deceased person wanted to die at home; only 44 did so. Only one-fifth of respondents had the opportunity to talk to someone from health and social services after their bereavement; a large majority (four-fifths) found this helpful. One-tenth of respondents reported untreated pain at home; however, there was evidence for an increasing proportion of those treated having received good pain relief. Although there are high levels of satisfaction with care and services received by Powys residents, deficits exist in relation to: symptom control, nursing help, assistance from social services with transport and bathing, communication, and bereavement support.

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Experiences of rural male caregivers of older adults with their informal support networks

More male caregivers are assuming primary caregiving roles for older adults with chronic health conditions. One of the main sources of support for many caregivers is the assistance that is provided by members of their informal support network. Little is known about the relationship between male caregivers and their informal support networks. This qualitative study examines the experience of male caregivers with their informal support networks, specifically looking at two phenomena: (1) Perceptions of the male caregivers about the willingness of their informal support networks to provide caregiving assistance and (2) Willingness of the male caregivers to ask their informal support networks for assistance. Twenty male caregivers were recruited across a rural Midwestern state. Each male caregiver engaged in two interviews that lasted between 60 and 120 minutes. Seven themes emerged from the data about the male caregivers experience with their informal support networks. Results from this study have implications for geriatric health professionals who work with male caregivers to obtain the necessary amount of caregiving assistance.

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Mobile dementia counselling: An instrument to support informal carers in rural; areas in Germany

Studies show that comprehensive and accessible counselling for people with dementia and their informal carers can improve the informal care setting in many ways. For example, a need-oriented and early use of counselling is fundamental for using professional care services. However, many informal carers do not use counselling due to various reasons such as an information deficit and a lack of (regional) accessibility of counselling. The Rhine-Erft district, a rural area in Germany, improved its network of dementia care services by establishing a mobile gerontopsychiatric counselling with special focus on dementia. A specially equipped “counselling bus” offers free counselling at several public places in towns and villages of the district at least once a month. The main objectives of the counselling service are to give informal carers an individual and neutral overview about local care services and to raise awareness for people suffering from dementia. Using a multi-method approach, the concept “mobile dementia counselling” was evaluated with the aim to determine how mobile dementia counselling has to be designed and implemented to meet the needs of informal carers. The results show first, that mobile dementia counselling is a low-threshold and successful way to reach informal carers and to inform them about different aspects of dementia care. Second, it contributes to the improvement of their caring situation and helps to reduce the burden of care. Third, it also improves the cooperation and communication of local stakeholders regarding dementia care. Based on these and other data from the evaluation, recommendations for an effective and successful implementation of a mobile dementia counselling service will be derived.

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Determinants of unmet needs among Slovenian old population

Background: Population ageing has significant effects on societies. The organization of care for dependent old people is one of the key issues for ageing societies. The majority of care for homebound dependent old people in Slovenia is still performed by informal carers, even though the use of formal services has been increasing over the last 20 years. The proportion and characteristics of people with unmet needs are important for the development of long term care social policy.

Method: The SHARE (Survey of Health, Ageing and Retirement in Europe) survey was used to assess the determinants of care arrangements and of unmet needs of the aging population in Slovenia. Multinomial regression analysis was used to evaluate individual and contextual determinants of care arrangements and unmet needs.

Results: The proportion of older people with unmet needs is 4%. As expected, “needs” (Functional impairment OR=4.89, P=0.000, Depression OR=2.59, P=0.001) were the most important determinant, followed by the predisposing factor “age” (age OR 1.15, P=0.000) and two enabling factors, namely:“community setting and “availability of informal care within household” (Urban areas OR=.47, P=0.021; Household size 3+ OR=2.11, P=0.030).

Conclusion: This study showed that there are a proportion of older people in Slovenia with severe needs for care, which are being unmet. As shown by the importance of enabling factors, social policy should encourage the development of formal services in rural areas and elaborate policy measures for informal carers.

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‘I felt I have grown up as an adult’: caregiving experience of children affected by HIV/AIDS in China

Background  The growing global epidemic of HIV/AIDS has a significant impact on the lives of both people living with HIV/AIDS and their family members including children. Children of parents with HIV/AIDS may experience an increased responsibility of caregiving in family. However, limited data are available regarding the caregiving experience and its impact on psychosocial well-being among these children. This study was designed to address these issues by using qualitative data collected from children affected by HIV/AIDS in China.

Methods  The qualitative data were collected in 2006 in rural central China, where many residents were infected with HIV/AIDS through unhygienic blood collection procedures. In-depth individual interviews were conducted by trained interviewers with 47 children between 8 and 17 years of age who had lost one or both parents to AIDS.

Results  Findings of this study suggest that many children affected by AIDS had experienced increased responsibilities in housework and caregiving for family members. Such caregiving included caring for self and younger siblings, caring for parents with illness and caring for elderly grandparents. Positive impacts from children's participation in family caregiving included personal growth and emotional maturity. Negative consequences included physical fatigue, psychological fear and anxiety and suboptimal schooling (dropping out from school, repeated absence from school and unable to concentrate in class).

Conclusion  While the increased caregiving responsibilities among children reflected some cultural beliefs and had some positive effect on personal growth, the caregiving experience generally negatively effected the children's physical and mental health and schooling. The findings in the current study suggest that community-based caregiving support is necessary in areas with high prevalence of HIV and limited resources, especially for the families lacking adult caregivers. In addition, social and psychological support should be made available for children participating in family caregiving.

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A sense of security for cancer patients at home: the role of community nurses

The present paper reports on a qualitative research project designed to expose the presently unrecognised minutiae of community nurses’ work with cancer patients at home, and to identify the ways in which these, combined to form comprehensive care episodes, contribute to physical and psychosocial well-being. The project was conducted in two locations in New South Wales, Australia, one metropolitan and one rural. The research model focused on particular nurse–patient encounters, and involved pre- and post-encounter interviews with nurses, post-encounter interviews with patients and carers, and observation of the encounters themselves. Participants included generalist community nurses, cancer patients being cared for at home, and their primary carers where appropriate. This research demonstrates that regular contact with generalist community nurses is associated with a strong sense of security about the immediate situation for home-based cancer patients and their primary carers. This sense of security is a significant component of patient and carer physical and psychosocial well-being, and may have implications for health services utilisation. In the present paper, the authors outline the factors underpinning this sense of security, and argue that these findings contribute important new knowledge that is vital for contemporary debates about role responsibilities and continuity of care for cancer patients.

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Care arrangements for community-dwelling people with dementia in Germany as perceived by informal carers - a cross-sectional pilot survey in a provincial-rural setting

The majority of people with dementia live at home, and informal carers assume the role of key care providers, often supported by formal services. The purpose of this pilot study was to assess home-based care arrangements, to illustrate utilisation of formal services over time and to identify factors associated with perceived stability of the care situation from the informal carer's perspective. A self-administered questionnaire (D-IVA ‘Instrument for Assessing Home-Based Care Arrangements for People with Dementia’) was developed and distributed in a provincial–rural setting in Germany as a cross-sectional survey. Data analysis used descriptive statistics, unbiased conditional inference trees and thematic analysis for open-ended questions. In total, 84 care arrangements were assessed. The majority of participants were direct relatives of the care-dependent person [mostly adult children (48.8%) or spouses (27.4%)]. Formal services were already sought in the first year after onset of memory problems. The most frequently used formal services were home care nursing services (53.0%), day care (49.4%) and respite care (29.6%), whereas 15.5% did not use any type of formal support. Companion home visit, home care nursing service and day care were used over the longest periods of time. The recruitment strategy used in this study may have recruited persons who were relatively more dependent on their informal carers. In this small sample, carers' perceived stability of the care situation was high, and this was associated with the country of origin and sex of the person with dementia (P = 0.004 and 0.023 respectively). Most care arrangements consisted of a mix of informal and formal services. However, informal carers assumed prime responsibility. The questionnaire D-IVA proved to be suitable. It remains a challenge to further examine factors associated with perceived stability and to explain the phenomenon in its whole complexity. Further research using the D-IVA should consider applying complementing quantitative measures as well as qualitative methods.

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Social risk factors for falls among rural Nigerian community-dwelling older adults

Aim: Reports on social risk factors for falls are scarce. This study explored the associations of selected sociodemographic and health variables with falls among rural Nigerian community-dwelling older adults.

Methods: The present cross-sectional study involved 131 community-dwelling older adults (84 women and 47 men) recruited at an outreach center. Demographic (age, sex and marital status), social (frequency of visiting relations and friends, and number of consistent informal carers) and health (number of comorbid conditions) variables were recorded.

Results: Having fewer than two informal carers (0.26, 95% CI 0.10–0.68) was independently associated with reduced risk for falls. Visiting relations and friends less than twice per week was independently associated with greater risks for falls (3.85, 95% CI 1.42–10.46) and recurrent falls (4.86, 95% CI 1.25–18.85).

Conclusions: The number of informal carers and frequency of social visits are risk factors for falls in older adults, and need to be taken into consideration in any strategy for fall prevention in older adults. 

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A telehealth behavioral coaching intervention for neurocognitive disorder family carers

Objectives: This study examined the differential impact of two telehealth programs for women caring for an older adult with a neurocognitive disorder. Outcomes examined were depressive symptoms, upset following disruptive behaviors, anxious and angry mood states, and caregiving self-efficacy.

Methods: Women cohabitating with a family member diagnosed with a neurocognitive disorder were assigned via random allocation to either of the following: (1) a 14-week behavioral intervention using video instructional materials, workbook and telephone coaching in behavioral management, pleasant events scheduling, and relaxation or (2) a basic education guide and telephone support comparison condition. Telephone assessments were conducted by interviewers blind to treatment condition at pre-intervention, post-intervention, and 6 months following intervention.

Results: For those providing in-home care at post-treatment, depressive symptoms, upset following disruptive behaviors, and negative mood states were statistically lower in the behavioral coaching condition than in the basic education and support condition. Reliable change index analyses for Beck Depression Inventory II scores favored the behavioral coaching condition. Caregiving self-efficacy scores for obtaining respite and for managing patient behavioral disturbances were significantly higher in the coaching condition. Effect sizes were moderate but not maintained at the 6-month follow-up.

Conclusions: This study provides some initial evidence for the efficacy of a telehealth behavioral coaching intervention compared with basic education and telephone support. Carers' abilities to maintain strategy use during progressive disorders such as Alzheimer's disease likely require longer intervention contact than provided in the current study. Dementia carers, including those living in rural areas, can benefit from accessible and empirically supported interventions that can be easily disseminated across distances at modest cost. © 2015 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons, Ltd.

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Doubly deprived: a post-death qualitative study of primary carers of people who died in Western Australia.(Report)

This paper explores the daily experiences and occupational needs of family carers of people who were dying, with particular reference to their daily routines and ability to undertake other varied activities during the period of care. The impact of the caring experience on these occupations was then examined to determine how, and if, these occupational needs were addressed in the community using potential and available services. An exploratory approach using grounded theory was employed to examine these experiences. Participants were recruited from metropolitan (n = 10) and rural (n = 4) locations across Western Australia between February and June 2009, using a purposive sampling method. A semi-structured interview guide was developed following consultation with the literature, expert opinion and piloting. Interviews were conducted in participants’ homes and questions were asked about their experiences as a carer including routines, engagement in usual activities and the impact of the caring role on their daily life during and after the period of care. Each interview was transcribed verbatim and analysed to determine potential themes. Two important themes were identified: (1) Carers experienced disengagement and deprivation from their usual occupations during and after the period of care; and (2) Participants described significant disempowerment in their role as carer. Carers are ‘doubly disadvantaged’ as a result of their caring role; they are unable to participate in their usual occupations and they are not recognised for their contributions as carers. Carers experienced disengagement and deprivation from their usual occupations, contributing to physical, psychological and emotional difficulties and this may result in long term consequences for health and well-being. In addition, the current services and support available for carers in the community are deemed inadequate; placing further stress on a health care system which needs to cope with increasing demands as a result of the ageing population in Australia.

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The Debenham Project: research into the dementia/memory loss journey for cared-for and carer: 2012-13

This report lays out the findings of research carried out between July 2012 and August 2013 for The Debenham Project in Suffolk, funded by the Norfolk & Suffolk Dementia Alliance. The research sought to obtain information from family carers and cared-for about the memory loss/ dementia journey; a profile of the carers and cared-for; their experiences; and also views from them and others on the positive and negative aspects of early diagnosis and early intervention of/by services.

The research used a methodology devised by the researchers working to an agreed project plan from the Debenham Project Trustees. In essence, this methodology sought to:- a. Devise questionnaires for family carers b. Trial the questionnaire with a limited number of family carers known to the Debenham Project, and then refine and roll it out to the full survey population c. Conduct structured interviews with as many family carers as possible of the survey population d. Devise and launch a questionnaire for volunteers in the Debenham Project e. Interview relevant professionals including GPs and voluntary sector.

The principal survey group was forty-two family carers of people with memory loss/dementia living either presently or in the recent past in the area covered by the Debenham GP practice including its two surgeries in Otley and Grundisburgh. The aim of this research is to inform the funders; local and regional authorities and national government as well as the Debenham Project and partners to enable robust planning of future services and support for people with dementia and their carers.

This report:-  Lays out the responses to the family carer questionnaire, question by question  Examines and computes these responses, categorising where clearly possible & helpful  Incorporates experiences and views from the structured interviews, Debenham Project volunteer questionnaires and relevant professionals in social care and health services, including the voluntary sector  Discusses the findings and draws conclusions The research is felt to be unique in its person-focused methodology and approach, and this is evidenced through the high returns and response rates. The researchers are trained & experienced in ‘non-instructed’ advocacy thus were able to engage empathetically with the client group while maintaining a professional and critical distance. 

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Creating a Supportive Environment for Living with Stroke in Rural Areas: Two Low-Cost Community-Based Interventions

With the growing burden of chronic illness affecting aging populations, rural health systems are faced with unique challenges to support and promote health in their communities. The Yarmouth Stroke Project was a 5-year initiative aimed at improving health care services for stroke survivors in rural Nova Scotia, Canada. A needs assessment indicated a lack of support to self-manage stroke during community re-integration. The needs reported by stroke survivors and their caregivers included informational and emotional support. A logic model approach was used to frame program planning leading to the design of two low-cost interventions. The first, a Community Resource Guide, was developed to address informational needs and enable stroke survivors to access community-specific resources. The second intervention, designed to address the emotional support needs of stroke survivors and their caregivers, involved collection and publication of local narratives. The stories described the experiences of community members affected by stroke, offering practical knowledge and messages of hope. The resource guide and stories represent two low-cost strategies for supporting and promoting the health of people living with stroke in rural settings.

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The dental and oral care needs of adults with a learning disability living in a rural community: Consideration of the issues

A questionnaire survey was undertaken in a rural health locality to examine the delivery of dental/oral health care to service users. Results indicate general satisfaction wth dental services, with attendance rates for treatment similar to the general population. However, the majority of clients not receiving dental checks in the previous year lived in formal care settings, suggesting standards were no higher in professional care contexts. A shortfall in NHS provision, poor facilities and financial disincentives created problems of accessing general dental services (GDSs) and placed an increased demand on the community dental service (CDS). Information-exchange between carers and dental personnel, blurring of care responsibilties and low priority afforded oral care were key issues preventing integrated care. Poor knowledge about client dental needs and high dependency levels between carers and clients indicate that training should be initially targeted at community learning disability nurses (CLDNs). Arguably they are best able to detect problems, facilitate access to services and disseminate health information. Recommendations are made for promoting dental/oral health awareness, routine health checks and production of a teaching pack. Further research concerning carer knowledge and attitudes to oral care is indicated. © 2001 Sage Publications.

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Practitioners’ Perspectives on Choice for Older Spousal Caregivers in Rural Areas

Recent shifts toward individual choice and consumer-directed practices largely conflict with traditional expectations of familial obligation and informal caregiving. The research reported on in this paper aimed to understand how practitioners’ perspectives of spousal caregiving obligations impact on choice in rural communities. Seven focus groups were conducted in rural and outer regional areas of North East Victoria, comprising 42 practitioners who work with older couples who reside in the community. Thematic analysis revealed practitioners’ personal values and constraints of the direct practice environment impact on the experience of choice for older Australians. This discussion considers the problematic nature of choice in policy and practice for older people and their caregivers in light of these findings.

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Improving the interface between informal carers and formal health and social services: A qualitative study

Reports about the impact of caring vary widely, but a consistent finding is that the role is influenced (for better or worse) by how formal services respond to, and work with informal carers and of course the cared for person. We aimed to explore the connection between informal and formal cares and identify how a positive connection or interface might be developed and maintained. We undertook a qualitative descriptive study with focus groups and individual interviews with informal carers, formal care service providers and representatives from carer advocacy groups. Content analysis was used to identify key factors impacting on the interface between informal and formal carers and propose specific recommendations for service development. Community setting including urban and rural areas of New Zealand. Seventy participants (the majority informal carers) took part in 13 focus groups and 22 individual interviews. Four key themes were derived: Quality of care for the care recipient; Knowledge exchange (valuing carer perspectives); One size does not fit all (creating flexible services); and A constant struggle (reducing the burden services add). An optimum interface to address these key areas was proposed. Conclusion: In addition to ensuring quality care for the care recipient, specific structures and processes to support a more positive interface appear warranted if informal carers and services are to work well together. An approach recognising the caring context and carer expertise may decrease the additional burden services contribute, and reduce conflicting information and resultant confusion and/or frustration many carers experience.

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Negative/positive home-based caregiving appraisals by informal carers of the elderly in Japan

This study aimed to determine factors associated with negative/positive home-based caregiving appraisals by informal carers of older people in Japan to consider which family carers’ community health nurses should focus on.

Because of the increasing older population in Japan, those needing a high level of care have become more dependent on informal carers. Carers’ health is an important aspect of caregiving. Community health nurses play an important role in assessing carers’ health, and carer appraisals, that is, how carers perceive their caregiving work, may help them better understand the health state of carers.

This quantitative study examined 192 primary carers of the elderly (care level >3) who used home-visiting nursing services in both rural and urban Japanese communities. The Japanese version of the Zarit scale (22 items) was used for negative appraisal and a positive caregiving appraisal scale (14 items) for positive appraisal. Participants with above-median scores (care burden, 30.0; positive caregiving appraisal, 39.0) were categorized as having a high care burden and high positive appraisal. To determine factors associated with appraisals, multinomial regression analysis was performed. Negative/positive appraisals were separately set as a dependent variable, and 17 items relating to carer characteristics, care-recipient characteristics, and external variables were set as independent variables. This was followed by stepwise regression and backward elimination.

With respect to care burden, positively associated factors were sekentei or social pressure [odds ratio (OR) 4.25, 95% confidence interval (CI) 1.39–13.04], caregiving obligation (OR 3.11, 95% CI 1.43–6.77), spouse carer (OR 2.58, 95% CI 1.05–6.35), daughter-in-law carer (OR 3.68, 95% CI 1.31–10.34), and depression (OR 50.58, 95% CI 13.85–184.67). With respect to positive appraisal, negatively associated factors were caregiving obligation (OR 0.29, 95% CI 0.15–0.53), male carer (OR 0.44, 95% CI 0.21–0.92), and daughter-in-law carer (OR 0.29, 95% CI 0.12–0.74).

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Palliative care in rural Australia: Involving the community in multidisciplinary coordinated care

This paper describes the process and outcomes of a project aimed at promoting community based multidisciplinary coordinated palliative care services in rural Australia. In preliminary health service needs assessment in rural Tasmania, key health workers appealed for additional information, support and education in palliative care. They expressed a preference for this education to be delivered locally to strengthen existing knowledge in communities and to take into account contextual factors. The project aimed to enhance skills available in rural communities by involving key stakeholders including formal and informal carers, volunteers, clergy, pharmacists, community nurses and general practitioners. The project objective was to strengthen existing expertise and commitment in rural communities, enabling service providers to respond to community needs in a sustainable way. This was achieved by facilitating options for sustainable linkages and ongoing support and through outreach programs from urban Palliative Care Units. An important element in this was the Tasmanian Telehealth network, which harnesses video conferencing, digital diagnostic equipment and image transmission technologies to offer access to healthcare services to Tasmania's rural and isolated communities. The process centred on workshops facilitated by a multidisciplinary team, which provided information about the core components of palliative care. The paper reports on the responses of health professionals and community participants to the workshops.

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What causes problems in Alzheimer's disease: attributions by caregivers. a qualitative study

Objective: To gain insight into caregivers' understanding of the causes of behaviours they find problematic in people with Alzheimer's disease in order to inform the development of educational strategies.

Methods: A qualitative, semi-structured interview was used. Participants were 205 caregivers for a person with Alzheimer's disease, all of whom were aware of the diagnosis and who had been recruited as part of a larger longitudinal study. Participants were from inner-city and suburban London/semi-rural Essex. The main outcome measures were caregivers' understanding of: the cause of problematic behaviour; the ability of the person with dementia to control this behaviour; the prognosis of the illness.

Results: Most carers attribute the cognitive, behavioural and psychological symptoms of dementia to causes other than dementia; many believe that the person with dementia has control over their behaviour and substantial numbers believe the person with dementia will return to normal.

Conclusions: This study suggests that providing facts about the illness to caregivers is not enough, as caregivers may not understand that the symptoms they observe are related to the diagnosis. Education by clinicians should focus on the understanding of caregivers and in particular explore the caregivers' attributions of the symptoms which are present in the person for whom they care. Copyright © 2004 John Wiley & Sons, Ltd.

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Hidden caregivers: providing appropriate services

3rd in a series of 5 articles on informal carers in the UK, focusing on carers who may be more isolated. 

Although most caregivers are, by the nature of care giving, hidden, some caregivers are perhaps more noticeable than others. This suggests that some caregivers are less noticeable, more hidden. This third article in this series on caregivers will focus on the ‘more hidden’ of the caregivers: male caregivers, young caregivers, BAME caregivers, LGBT caregivers, rural caregivers and caregivers who are elderly or have a disability themselves. Some suggestions will be offered that may help healthcare assistants (HCAs) and nurses to support these caregiver groups.

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Recognition and support of carers

May carers are isolated and GP surgeries are often their first point of contact for support and resources. This article describes the role of a carer support and development worker, whose aim is to provide the support carers need. Cites 19 references. [Journal abstract]

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Preference for place of death in Germany

Background: Dying in the preferred place is considered a key requirement for a “good death.” The aims of our study were to explore preferred places of death of deceased people and their bereaved relatives in Rhineland-Palatinate (Germany). We further wanted to assess the congruence between preferred and actual place of death.

Methods: The cross-sectional study was based on a random sample of 5000 inhabitants of Rhineland-Palatinate (Germany) who died between May 25 and August 24, 2008. Relatives of these deceased persons were interviewed by a written survey.

Results: After removing duplicates, 4967 questionnaires were sent out, 3832 delivered, and 1378 completed, yielding a response rate of 36.0%. Regarding the deceased, 93.8% wanted to die at home, 0.7% in a hospital, 2.8% in palliative care, 2.4% in a nursing home, and 0.3% elsewhere. The figures for the relatives were 80.7%, 4.3%, 7.5%, 7.1%, and 0.5%, respectively. Of the deceased 58.9% and of the relatives 59.1% had their wish fulfilled. Logistic regression analysis revealed that living in a rural municipality (adjusted odds ratio [aOR]: 1.88; 95% confidence interval [CI]: 1.02–3.43), rural town (aOR: 2.30; 95% CI: 1.17–4.49) or small town (aOR: 1.95; 95% CI: 1.04–3.68), having a nonworking relative (aOR: 1.79; 95% CI: 1.16–2.76), and living together with a relative (aOR: 2.28; 95% CI:1.57–3.32) increases the probability to die in the preferred place.

Discussion: Because the availability of a relative was the most important factor to die in the preferred place, relatives of dying people should be supported in providing informal care. The introduction of palliative home care teams should allow more people to die in their preferred place by easing the burden of informal carers.

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A cuppa in the country

The author, a community mental health nurse, describes the setting up of a dementia cafe in a rural area. Some of the aims and objectives of the cafe were to provide social opportunities for those living with dementia and their carers; provide activities to stimulate memories of those living with dementia; provide an opportunity for carers to share problems. Challenges and future changes are also discussed.

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Helping carers care: an education programme for rural carers of people with a mental illness

OBJECTIVE: To provide descriptive information about a short-term educational programme for rural carers of people with a mental illness, living in the Loddon Campaspe Southern Mallee region.

METHOD: The Carers Education Exchange Programme is a flexible, needs-based model that can be modified to cater for individual groups. It consists of a number of sessions on topics relevant to caring for someone with a mental illness, held over a period of several weeks. The programme is offered at locations throughout the region, making it accessible to carers in isolated, rural areas.

RESULTS: Feedback indicates that the benefits of participating in the programme include the reduction of isolation and stigma, increased understanding of mental illness, development of skills relevant to the caring role and the formation of supportive networks, both professional and personal.

CONCLUSIONS: Educational group programmes for carers are an effective way of providing both education and support. This programme can assist in reducing some of the distress and difficulties inherent in caring for someone with a mental illness. Carer well-being is enhanced by the promotion of self-care and a positive outlook.

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Caregiver distress in dementia in rural Victoria

Aim: The aim of this study was to explore the levels of stress, anxiety and depression of informal carers caring for someone with dementia in a rural setting.

Methods: Carers of people with dementia were recruited to complete a survey that incorporated the Depression Anxiety Stress Scales (DASS) to measure carer emotional well-being. The survey also included the Neuropsychiatric Inventory Questionnaire (NPI-Q), which assesses the presence and severity of behavioural and psychological symptoms of dementia (BPSD) of care recipients and their effects on the carer.

Results: A total of 39 carers completed surveys. Almost half of the respondents reported levels of stress and depression in the moderate to severe range as measured on the DASS. BPSD exhibited by care recipients, such as agitation, anxiety, aggression and nocturnal disturbance, were associated with the level of stress reported by the carer as measured with the NPI-Q.

Conclusion: Caring for care recipients who exhibit BPSD predisposes carers in rural areas to high levels of stress and depression. Regular, periodic screening of carers is required to detect abnormal levels of stress, depression and anxiety in order to enable timely introduction of interventions.

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Dementia care provision in rural Scotland: service users' and carers' experiences

Argues that there has been global neglect of service users' and carers' experiences of dementia care provision in rural areas. The  paper draws on a qualitative study of service provision for people with dementia and their carers in remote and rural Scotland. It draws on interviews with 15 people with dementia and 16 carers to explore their views about health and social dementia care service provision in rural Scotland. A further 14 carers of people with dementia participated in one of three focus groups. The paper discusses perceived gaps in services as well as positive aspects of dementia service provision which service users attribute to living in a rural area. The important issues this raises for the development of dementia care provision in rural areas are briefly discussed.

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“I Can’t Go to School and Leave Her in So Much Pain”: Educational Shortfalls Among Adolescent ‘Young Carers’ in the South African AIDS Epidemic

“I go to the hospital with my mother when she is sick. I can’t go to school and leave her in so much pain. I won’t concentrate.” Millions of adolescents live with AIDS-affected parents or primary caregivers. Little is known about educational impacts of living in an AIDS-affected home, or of acting as a “young carer” in the context of AIDS. This study combined qualitative and quantitative methods to determine educational impacts of household AIDS-sickness and other-sickness. Six hundred and fifty-nine adolescents (aged 10-20) were interviewed in high-poverty areas of urban and rural South Africa. Qualitative findings identified three major themes of missing school, being hungry at school, and concentration problems due to worry about the sick person. In quantitative analyses, living in an AIDS-affected home predicted all these three outcomes (p < .001) compared to homes affected by other sickness and to healthy homes, and independent of sociodemographic cofactors. This study demonstrates that familial AIDS-sickness is associated with negative educational impacts for adolescents. It is important that policies are developed to support young people in these circumstances to continue with their education.

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Supporting family carers through telephone-mediated group programs: opportunities for gerontological social workers

Telephone-mediated group programs are an important but under-utilized medium for reaching frail or disabled older persons' family carers who are in need of support. The primary purpose and style of group programs can range across a broad spectrum–encompassing educational, supportive and therapeutic types. Gerontological social workers are the members of the multidisciplinary care team whose training, experience and supervision makes them most suitable for facilitating this broad range of group types. Drawing on the experience of training a number of group facilitators, this article provides suggestions for social workers contemplating the use of telephone-mediated groups and highlights groupwork skills peculiar to conducting group programs via the telephone.

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Community-based primary health care for older adults: A qualitative study of the perceptions of clients, caregivers and health care providers

Background: Older persons are often poorly served by existing models of community-based primary health care (CBPHC). We sought input from clients, informal caregivers, and health care providers on recommendations for system improvements.

Methods: Focus group interviews were held with clients, informal caregivers, and health care providers in mid-sized urban and rural communities in Ontario. Data were analyzed using a combination of directed and emergent coding. Results were shared with participants during a series of feedback sessions.

Results: An extensive list of barriers, facilitators, and recommended health system improvements was generated. Barriers included poor system integration and limited access to services. Identified facilitators were person and family-focused care, self-management resources, and successful collaborative practice. Recommended system improvements included expanding and integrating care teams, supports for system navigation, and development of standardized information systems and care pathways.

Conclusions: Older adults still experience frustrating obstacles when trying to access CBPHC. Identified barriers and facilitators of improved system integration aligned well with current literature and Wagner’s Chronic Care Model. Additional work is needed to implement the recommended improvements and to discern their impact on patient and system outcomes.

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Examining the trajectories of children providing care for adults in rural Kenya: Implications for service delivery

Research on caregiving children tends to be limited to children's caregiving experiences of parents with a specific disease or disability. This has led to a common perception that children's caregiving is a single, uniform and often long-term experience. Whilst this is most certainly the case for many children in economically more advanced countries, this may not hold true in rural Africa, where poverty and AIDS can have significant knock-on effects on entire families and communities. This paper seeks to develop a more complex understanding of children's caring experiences by asking children whom they have cared for over time and explore the different pathways that lead to their caregiving at different stages of their lives. The study reports on qualitative data collected from 48 caregiving children and 10 adults in the Bondo district of western Kenya in 2007. A multi-method approach was adapted, with historical profiles, Photovoice and draw-and-write essays complementing 34 individual interviews and 2 group discussions. A thematic network analysis revealed that children's caregiving was not confined to a single experience. Children were observed to provide care for a number of different family and community members for varying periods of time and intensities. Although their living arrangements and life circumstances often gave them little choice but to care, a social recognition of children's capacity to provide care for fragile adults, helped the children construct an identity, which both children and adults drew on to rationalise children's continued and multiple caring experiences. The study concludes that agencies and community members looking to support caregiving children need to consider their care trajectories — including whom they care for as well as the order, intensity, location and duration of their past and likely future caring responsibilities.

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Social care and support for elderly men and women in an urban and a rural area of Nepal

This study has aimed to describe the care and support for urban and rural elderly people of Bhaktapur district, Nepal. Efforts were made to identify the feeling of some features of general well-beings associated to mental health, person responsible for care and support, capability to perform daily routine activities, sources of finance and ownership to the property. More than half of the respondents were found having single or multiple features of loneliness, anxiety, depression and insomnia. The rate of point prevalence loneliness was found higher in the above 80 years of age, urban respondents. Almost 9 in 10 respondents were capable themselves to dress, walk and maintain personal hygiene and majority of them were assisted by spouse, son/daughter-in-laws. Family support was common sources of income and ownership to the property was absolutely high.

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Combining work and care: carers' decision-making in the context of competing policy pressures

Issues related to paid work and care are of global importance, reflecting the twin pressures of population ageing and efforts to increase labour market participation. Informal carers of sick, disabled or older people can experience tensions between policies aimed at support for care and support for employment. This article discusses a study of carers’ decision-making around work and care, drawing on evidence from interviews with 80 working-age carers in England. Carers are not homogeneous; their circumstances and needs differ reflecting age, gender, ethnicity, labour market participation, and the condition and/or needs of the person they support. This diversity is illustrated by contrasting rural and urban carers’ decisions and experiences about work and care. Key factors that impact on carers’ decisions are: current and anticipated financial need; the constraints arising from receipt of carers’ and other means-tested income maintenance benefits; personal identity; job opportunities and scope for flexibility; social services provision; carers’ own health. Distance, travel times and transport are unique additional challenges for rural carers who (wish to) work. These difficulties are further intensified when they intersect with other factors such as the Carer's Allowance, the local labour market and social services provision. The findings are evaluated in terms of the adequacy of current government policy measures.

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Surgical and psychosocial outcomes in the rural injured—a follow-up study of the 2001 earthquake victims

Introduction: After a major disaster in a developing country, the graphic media coverage of the dead and injured invariably leads to an influx of volunteering healthcare personnel to the disaster zone. Very few studies document the outcomes of the treatment rendered in this field setting, under compromised conditions. We revisited the rural victims of the 2001 Gujarat earthquake in an attempt to analyse their surgical outcome and the status of their physical/psychosocial rehabilitation, 2 years after the disaster.

Method: We traced displaced victims treated for earthquake-related injuries to their new homes. A community health worker interviewed patients with an oral questionnaire in the local language about injuries, the examining physician and first aid, orthopaedic implants, amputations, wounds, disability, deformity, residual pain, occupational and economic rehabilitation, post traumatic stress disorder (PTSD) and perceptions of healthcare rendered.

Results: We located 133 of the 179 non-urban victims, from 11 villages. There were 10% missed injuries, 19% infection rate, restricted range of motion in 12%, non-union rate in 23% and reoperations in 30.5% patients. Fifty-one percent had resumed their previous occupation, but only 30% had recovered economically. Of 98% who had destroyed homes, 89% had their homes rebuilt. Residual sadness was the only significant PTSD symptom.

Conclusion: This trauma outcome study highlights the shortcomings of surgeons for disaster-related work. One-tenth of the injuries were missed, suggesting that field examination at the site of disaster was more difficult than in the comfort of the hospital emergency room. Further there were inappropriately timed, aggressive implant operations, short time commitments, a lack of follow-up and a high rate of reoperations contributing to subsequent morbidity. These pointed to a need for training in disaster medicine within the curriculum of surgical residency. On the brighter side, despite poor sterility, prolonged transport times and no prehospital care, the postoperative infection rate was lower than expected. This perhaps was due to use of potent antibiotics in a previously unexposed rural population. Good physiotherapy given in the temporary shelters, by the informal carers within the family and by voluntary groups, kept up a good range of motion and reduced the final disability. PTSD was marked 3–6 months after the event, but was minimal 2 years postquake. Sadness about the event was the only residual PTSD symptom. While there were varying perceptions of satisfactory outcome, we found good coping mechanisms in place. The simple village folks were largely happy to be alive and accepted the residual deformities and cosmetic blemishes as a “small price to pay”.

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Should we embed randomized controlled trials within action research: arguing from a case study of telemonitoring

Background: Action research (AR) and randomized controlled trials (RCTs) are usually considered to be theoretically and practically incompatible. However, we argue that their respective strengths and weaknesses can be complementary. We illustrate our argument from a recent study assessing the effect of telemonitoring on health-related quality of life, self-care, hospital use, costs and the experiences of patients, informal carers and health care professionals in two urban hospital services and one remote rural primary care service in New Zealand.

Methods: Data came from authors’ observations and field notes of discussions with three groups: the healthcare providers and healthcare consumers who participated in the research, and a group of 17 researchers and collaborators. The consumers had heart failure (Site A, urban), airways disease (Site B, urban), and diabetes (Site C, rural). The research ran from 2008 (project inception) until 2012 (project close-off). Researchers came from a wide range of disciplines. Both RCT and AR methods were recognised from early in the process but often worked in parallel rather than together. In retrospect, we have mapped our observed research processes to the AR cycle characteristics (creation of communicative space, democracy and participation, iterative learning and improvement, emergence, and accommodation of different ways of knowing).

Results: We describe the context, conduct and outcomes of the telemonitoring trial, framing the overall process in the language of AR. Although not fully articulated at the time, AR processes made the RCT sensitive to important context, e.g. clinical processes. They resulted in substantive changes to the design and conduct of the RCT, and to interpretation and uptake of findings, e.g. a simpler technology procurement process emerged. Creating a communicative space enabled co-design between the researcher group and collaborators from the provider participant group, and a stronger RCT design.

Conclusions:It appears possible to enhance the utility of RCTs by explicitly embedding them in an AR framework to shape stronger RCT design. The AR process and characteristics may enable researchers to evaluate telehealth while enhancing rather than compromising the quality of an RCT, where research results are returned to practice as part of the research process.

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Older people and falls: health status, quality of life, lifestyle, care networks, prevention and views on service use following a recent fall

Aim and objective.  This study has investigated older people’s experiences of a recent fall, its impact on their health, lifestyle, quality of life, care networks, prevention and their views on service use.

Background.  Falls are common in older people and prevalence increases with age. Falls prevention is a major policy and service initiative.

Design.  An exploratory, qualitative design involving two time points.

Method.  A convenience sample of 27 older people from two primary care trusts who had a recent fall. Taped semi structured qualitative interviews were conducted and repeated at follow up to detect change over time and repeat falls. Data were collected on their experience of falls, health, activities of living, lifestyle, quality of life, use of services, prevention of falls, informal care and social networks. Content analysis of transcribed interviews identified key themes.

Results.  The majority of people fell indoors (n = 23), were repeat fallers (n = 22) with more than half alone when they fell (n = 15). For five people it was their first ever fall. Participants in primary care trust 1 had a higher mean age than those in primary care trust 2 and had more injurious falls (n = 12, mean age 87 years vs. n = 15, mean age 81 years). The majority of non-injurious falls went unreported to formal services. Falls can result in a decline in health status, ability to undertake activities of living, lifestyle and quality of life.

Conclusions.  Local informal care and support networks are as important as formal care for older people at risk of falls or who have fallen. Access to falls prevention programmes and services is limited for people living in more rural communities.

Relevance to practice.  Falls prevention initiatives and services should work with local communities, agencies and informal carers to ensure equitable access and provision of information, resources and care to meet the needs of older people at risk or who have fallen.

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