Showing papers in "Health & Social Care in The Community in 2015"

Barriers to access and minority ethnic carers' satisfaction with social care services in the community: a systematic review of qualitative and quantitative literature

Abstract: As populations age, the numbers of carers overall and numbers of carers from minority ethnic groups in particular are rising. Evidence suggests that carers from all sections of the community and particularly carers from minority groups often fail to access care services. This may relate to barriers in accessing services and service dissatisfaction. The aim of this systematic review was to identify and summarise minority ethnic carers' perceptions of barriers to accessing community social care services and their satisfaction with these services if accessed. The following databases were searched from their start until July 2013: Social Care Online, Social Policy and Research, Scopus, PsychINFO, HMIC, ASSIA, MEDLINE, Embase, CINAHL Plus and AMED. Thirteen studies met the inclusion criteria. Most investigated either barriers to access or satisfaction levels, although three explored both. Only 4 studies investigated minority ethnic carers' satisfaction with social care, although 12 studies reported perceived barriers to accessing services. Few studies compared minority ethnic carers' perceptions with majority ethnic groups, making it difficult to identify issues specific to minority groups. Most barriers described were potentially relevant to all carers, irrespective of ethnic group. They included attitudinal barriers such as not wanting to involve outsiders or not seeing the need for services and practical barriers such as low awareness of services and service availability. Issues specific to minority ethnic groups included language barriers and concerns about services' cultural or religious appropriateness. Studies investigating satisfaction with services reported a mixture of satisfaction and dissatisfaction. Barriers common to all groups should not be underestimated and a better understanding of the relationship between perceived barriers to accessing services and dissatisfaction with services is needed before the experiences of all carers can be improved.

Literature review: use of respite by carers of people with dementia

Abstract: Respite care is a cornerstone service for the home management of people with dementia. It is used by carers to mitigate the stress related to the demands of caring by allowing time for them to rest and do things for themselves, thus maintaining the caring relationship at home and perhaps forestalling long-term placement in a residential aged care facility. Despite numerous anecdotal reports in support of respite care, its uptake by carers of people with dementia remains relatively low. The aim of this paper was to examine the factors that constitute the use of respite by carers of people with dementia by reviewing quantitative and qualitative research predominantly from the years 1990 to 2012. Seventy-six international studies of different types of respite care were included for this review and their methods were critically appraised. The key topics identified were in relation to information access, the barriers to carers realising need for and seeking respite, satisfaction with respite services including the outcomes for carers and people with dementia, the characteristics of an effective respite service and the role of health workers in providing appropriate respite care. Finally, limitations with considering the literature as a whole were highlighted and recommendations made for future research.

A scoping review to understand the effectiveness of linking schemes from healthcare providers to community resources to improve the health and well-being of people with long-term conditions.

Abstract: The prevalence of people living with long-term conditions is increasing, accompanied by an increased expectation that patients will become more involved in self-management. Long-term conditions are associated with increased social isolation and poor physical and mental health. But there remains a gap in health provision between providing medical treatment and effectively addressing psychosocial well-being. One potential way of addressing this gap is by utilising social interventions which link patients from health services to community-based sources of support. However, the mechanisms involved in the delivery of interventions providing that link and their effectiveness remain unclear. This review adopted the methodological framework for conducting scoping studies, searching for both academic and grey literature on social interventions which link people from healthcare settings to a range of community and voluntary sector organisations. A literature search between May and June 2013, involving five electronic databases, hand searching of two journals and the use of Google search engine, identified seven studies relevant to the review question. In terms of key characteristics and mechanisms of the interventions, mental health conditions and social isolation were the most common reasons for referral to the interventions, and referrals were usually made through general practices. Almost all the interventions were facilitator-led, whereby the facilitator worked to identify and link participants to appropriate community-based resources. In regard to health and social outcomes and their cost-effectiveness, studies reported improvement to participants' psychological and social well-being as well as their decreased use of health services, although there were limited measures of participants' physical health outcomes. Interventions for linking patients from healthcare setting to community-based resources target and address psychosocial needs of participants. The review identified involvement of health professionals in aiding the referral of patients to the intervention and the role of the intervention facilitators as key components of the interventions.

Social connectedness and mobile phone use among refugee women in Australia

Abstract: The aim of this research was to inform the development of mobile phone-assisted health promotion programmes that support social connectedness among refuge women to enhance their mental, physical and social health. For refugees, relationship development during the early stages of resettlement is often difficult. Enhancing personal skills, and resources, can enhance relationships that provide social support. It can also contribute to the development of social relationships in communities and thence acculturation. Communication technologies can assist refugees, if their particular needs and capacities are taken into account. This paper reports a study of refugee women's experience of an intervention based on principles of empowerment and using peer support training and the provision of free mobile phones, and free calls, for at least 1 year. Potential participants were invited by the Afghan, Burmese and Sudanese community leaders to an information session, where the study was explained and invitations to participate extended. A snowball sampling technique was also used, where the first group of participants invited people they had relationships with to join the programme. One hundred and eleven participants were recruited from the three groups. All were from refugee backgrounds. Data collection consisted of: a pre- and post-intervention questionnaire; a log of outgoing phone calls; and in-depth interviews with a subgroup of the study population. The call logs described the patterns of interpersonal relationships facilitated by the mobile phones. In the interviews, characteristics of interpersonal social support, and relationships with heritage and host communities, were described. The quantitative data were analysed using descriptive statistics and the qualitative data using thematic analysis. By describing the conditions under which mobile phone technology can enhance interpersonal and community connectedness, we strengthen the evidence base for the use of mobile phone technology in health promotion programmes with refugee groups.

Trained or professional doulas in the support and care of pregnant and birthing women: a critical integrative review

Abstract: The professionalisation of doula care and research interest in this area of maternity care/support have both grown internationally in recent years highlighting important broader issues around the access, continuity and delivery of maternity care services. However, no work to date has provided a critical appraisal of the international literature on this topic. In response, this paper presents the first critical review of international empirical literature examining professional doula care for pregnant and birthing women. A database search of AMED, CINAHL, Maternity and Infant Care, and MEDLINE using the search term, "doula" was undertaken. A total of 48 papers published between 1980 and March 2013 involving trained or professional doulas were extracted. Four descriptive categories were identified from the review: 'workforce and professional issues in doula care'; 'trained or professional doula's role and skill'; 'physical outcomes of trained or professional doula care'; and 'social outcomes of trained or professional doula care'. Of the studies evaluating outcomes of doula care, there were a number with design and methodology weaknesses. The review highlights a number of gaps in the research literature including a lack of research examining doula workforce issues; focus upon the experience and perspective of significant stakeholders such as expectant fathers with regard to trained or professional doula care; clinical trials measuring both subjective experiences and physical outcomes of trained or professional doula support; synergy between the design of clinical trials research examining trained or professional doula care and the clinical reality of professional doula practice. It is imperative that key aspects of trained doula care be subject to further rigorous, empirical investigation to help establish an evidence base to guide policy and practice relating to this area of support and care for pregnant and birthing women.

Providing effective and preferred care closer to home: a realist review of intermediate care.

Abstract: Intermediate care is one of the number of service delivery models intended to integrate care and provide enhanced health and social care services closer to home, especially to reduce reliance on acute care hospital beds. In order for health and social care practitioners, service managers and commissioners to make informed decisions, it is vital to understand how to implement the admission avoidance and early supported discharge components of intermediate care within the context of local care systems. This paper reports the findings of a theory-driven (realist) review conducted in 2011-2012. A broad range of evidence contained in 193 sources was used to construct a conceptual framework for intermediate care. This framework forms the basis for exploring factors at service user, professional and organisational levels that should be considered when designing and delivering intermediate care services within a particular local context. Our synthesis found that involving service users and their carers in collaborative decision-making about the objectives of care and the place of care is central to achieving the aims of intermediate care. This pivotal involvement of the service user relies on practitioners, service managers and commissioners being aware of the impact that organisational structures at the local level can have on enabling or inhibiting collaborative decision-making and care co-ordination. Through all interactions with service users and their care networks, health and social care professionals should establish the meaning which alternative care environments have for different service users. Doing so means decisions about the best place of care will be better informed and gives service users choice. This in turn is likely to support psychological and social stability, and the attainment of functional goals. At an organisational level, integrated working can facilitate the delivery of intermediate care, but there is not a straightforward relationship between integrated organisational processes and integrated professional practice.

Effects of a 4-week transitional care programme for discharged stroke survivors in Hong Kong: a randomised controlled trial.

Abstract: Stroke rehabilitation involves care issues concerning the physical, psychosocial and spiritual aspects. Hospital-based rehabilitation has its limitations because many of the care issues only emerge when patients return home. Transitional care models supporting patients after discharge from the hospital have proved to be effective among chronically ill patients, but limited studies were conducted among stroke survivors. This study was a randomised controlled trial conducted to test the effectiveness of a transitional care programme (TCP) which was a nurse-led 4-week programme designed based on the assessment-intervention-evaluation Omaha System framework. Between August 2010 and October 2011, 108 stroke patients who were discharged home, able to communicate, and had slight to moderate neurological deficits and disability were randomised into control (n = 54) and intervention groups (n = 54). Data on the patient-related and clinical outcomes were collected at baseline, 4 weeks when the TCP was completed and 8 weeks after discharge from hospital. Repeated measures analysis of variance with intention-to-treat strategy was used to examine the outcomes. There were significant between-group differences in quality of life, the primary outcome measure of this study, in both physical (F(1, 104) = 10.15, P = 0.002) and mental (F(1, 104) = 8.41, P = 0.005) domains, but only the physical domain achieved a significant time × intervention interaction effect (F(1, 103) = 7.73, P = 0.006). The intervention group had better spiritual-religion-personal measures, higher satisfaction, higher Modified Barthel Index scores and lower depression scores when compared with the control group. They also had lower hospital readmission and use of emergency room rates, but only the use of emergency room had significant difference when compared to control. This study is original in testing a transitional model among stroke patients discharged from hospital. The TCP shares common features that have been proved to be effective when applied to chronically ill patients, and the duration of 4 weeks seems to be adequate to bring about immediate effects.

Implementing a national approach to universal child and family health services in Australia: professionals' views of the challenges and opportunities.

Abstract: Australia has a well-accepted system of universal child and family health (CFH) services. However, government reports and research indicate that these services vary across states and territories, and many children and families do not receive these services. The aim of this paper was to explore professionals' perceptions of the challenges and opportunities in implementing a national approach to universal CFH services across Australia. Qualitative data were collected between July 2010 and April 2011 in the first phase of a three-phase study designed to investigate the feasibility of implementing a national approach to CFH services in Australia. In total, 161 professionals participated in phase 1 consultations conducted either as discussion groups, teleconferences or through email conversation. Participants came from all Australian states and territories and included 60 CFH nurses, 45 midwives, 15 general practitioners (GPs), 12 practice nurses, 14 allied health professionals, 7 early childhood education specialists, 6 staff from non-government organisations and 2 Australian government policy advisors. Data were analysed thematically. Participants supported the concept of a universal CFH service, but identified implementation barriers. Key challenges included the absence of a minimum data set and lack of aggregated national data to assist planning and determine outcomes; an inconsistent approach to transfer of information about mothers and newborns from maternity services to CFH nursing services or GPs; poor communication across disciplines and services; issues of access and equity of service delivery; workforce limitations and tensions around role boundaries. Directions for change were identified, including improved electronic data collection and communication systems, reporting of service delivery and outcomes between states and territories, professional collaboration, service co-location and interprofessional learning and development.

Balancing needs as a family caregiver in Huntington's disease: a qualitative interview study.

Abstract: Family members in families with severe chronic disease play important roles in care-giving. In families affected by Huntington's disease (HD), caregivers encounter practical and emotional challenges and distress. Enduring caregiver burdens may lead to problems and caregivers are in need of social support and health services to deal with challenges. We wanted to explore coping strategies and behaviour patterns used by family caregivers to care for themselves, while caring for a family member with HD. Participants were recruited from hospitals and community-based healthcare. The sample represents experiences from care-giving in all stages of the disease. We conducted semi-structured interviews with 15 family caregivers in Norway. The transcribed material was analysed by use of systematic text condensation, a method for cross-case thematic analysis of qualitative data. We found that family members used various coping strategies, adjusted to the stage and progression of HD. They tried to regulate information about the disease, balancing considerations for protection and disclosure, within and outside the family. The participants made efforts to maintain a balance between their own needs in everyday life and the need for care for affected family member(s). As the disease progressed, the balance was skewed, and the family caregivers' participation in social activities gradually decreased, resulting in experiences of isolation and frustration. In later stages of the disease, the need for care gradually overshadowed the caregivers' own activities, and they put their own life on hold. Health professionals and social workers should acknowledge that family caregivers balance their needs and considerations in coping with HD. They should, therefore, tailor healthcare services and social support to family caregivers' needs during the different stages of HD to improve caregivers' abilities to maintain some of their own activities, in balance with care-giving.

Societal costs of home and hospital end-of-life care for palliative care patients in Ontario, Canada

Abstract: In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00 CDN = $1.00 USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of costs borne by different stakeholders.

New mothers and postpartum depression: a narrative review of peer support intervention studies

Abstract: Postpartum depression (PPD) is a serious maternal mental health issue that negatively impacts new mothers and their infants. Various interventions have been studied and one that has shown promise is social support delivered by peers. Understanding what previous studies on peer support interventions have found will contribute to the development and implementation of future peer support interventions for women with PPD. To this end, a systematic search and narrative review of studies that investigated peer support interventions for PPD was conducted. Relevant studies were identified using CINAHL, Medline, PsychINFO and the Cochrane Library published between 2000 and 2010. Six studies matching inclusion criteria were reviewed. Each of the studies had specific selection criteria and some used screening tools for recruitment. There were differences regarding the criteria for volunteers. All volunteers participated in some form of training and had support from a co-ordinator. Interventions varied in terms of length and nature of support offered, frequency and mode of delivery. Volunteers reported positively on their experience, although there were some challenges in providing support. Overall findings suggest that interventions should be targeted and take into consideration the age of the mother, any cultural and linguistic differences, the mother's circumstances and her needs. All volunteers should receive training before providing support and be screened for their ability to commit their time. Although the results were mixed, they provide insights into how peer support volunteers can be an innovative part of a team approach to PPD intervention.

Factors that contribute to adult children caregivers' well-being: a scoping review

Abstract: The ageing of the population will increasingly result in reliance on the family for care in the community. Existing reviews have provided insights into the needs and health outcomes of family caregivers, but are disproportionately skewed towards spousal caregivers. Presently, a large majority of family caregivers are adult children. Adult children are distinct from spousal caregivers in terms of the combination of roles they occupy and the relationship they have with the care recipient. These unique considerations can have important implications for their well-being. A growing body of literature has investigated the factors that contribute to adult children caregivers' (ACCs) well-being; however, no reviews to date have synthesised this body of literature or appraised its methodological quality. Our objective was to identify the range and types of factors that contribute to ACC well-being across studies. A scoping review was conducted. Medline, Psycinfo, EMBASE and CINAHL databases (January 1996–August, 2012) were systematically searched for studies investigating ACC well-being. Inclusion/exclusion criteria were applied, methodological quality was appraised, the data were charted and a narrative synthesis was conducted. Fifty-five studies met our inclusion criteria. Factors that contribute to ACC well-being were found to be either: (i) care recipient-related (e.g. nature of limitations, amount of care required); (ii) caregiver-related (e.g. psychological dispositions of the ACC); or (iii) socially embedded (e.g. parent–child relationship, multiple role involvement, social support available to the ACC). Socially embedded factors that contribute to ACC well-being have received the most attention in the literature. Among these factors, ACC well-being is uniquely impacted by the quality of the parent–child relationship and combination of roles occupied. The majority of studies were cross-sectional. Future studies should therefore employ a longitudinal design to inform our understanding of the changes that take place in the parent–child relationship and multiple role involvement across the care-giving trajectory.

Teachers' perspectives of supporting pupils with long‐term health conditions in mainstream schools: a narrative review of the literature

Abstract: Teachers are supporting an increasing number of pupils with long-term health conditions in mainstream schools. The aim of this literature review was to critically appraise and synthesise research that has examined teachers' perceptions of the key barriers and facilitators to supporting pupils with long-term conditions, teachers' training needs and interventions that aim to improve teachers' knowledge of long-term conditions, and teachers' confidence in supporting children and young people. A narrative literature review was conducted using a systematic search of computerised databases and manual searches of key journals and reference lists to retrieve studies published between 2003 and 2013. Studies were critically appraised and key themes across studies identified. In total, 61 papers from 58 studies were included in the review. The findings suggest that teachers receive little formal training relevant to long-term condition management and are fearful of the risks involved in teaching children and young people with long-term conditions. Communication between families, school and health and social care services appears to be poor. Educational programmes developed in conjunction with and/or delivered by healthcare professionals seem to have the potential to increase teachers' knowledge and confidence. This review suggests that healthcare professionals have an important role to play in supporting teachers in identifying and meeting the needs of pupils with long-term conditions. It is vital that pupils with long-term conditions receive appropriate care and support in schools to ensure their safety and help them to integrate with their peers and achieve their academic potential. Limitations in the current evidence are highlighted and implications for future research are identified.

Formal home-care utilisation by older adults in Ireland: evidence from the Irish Longitudinal Study on Ageing (TILDA)

Abstract: The aim of this study was to provide a population-based estimate of the utilisation of publicly financed formal home care by older adults in Ireland and to identify the principal characteristics of those utilising formal home care. Data were collected through computer-aided personal interviews from a representative sample of community living older adults in Ireland. The interviews were conducted between 2009 and 2011 as part of the first wave of the Irish Longitudinal Study on Ageing (TILDA). The study is cross-sectional in design and limited to participants aged 65 years and older (n = 3507). Results reveal that 8.2% (95% CI 7.1%-9.3%) of participants utilised publicly financed formal home care in the form of home help and/or personal care. Key determinants of formal home-care utilisation were Instrumental Activity of Daily Living (IADL) difficulty (Adj OR 3.8, 95% CI 2.7-5.3), older age (Adj OR 3.4, 95% CI 2.4-4.8) and living alone (Adj OR 2.6, 95% CI 1.9-3.8). Almost half of those utilising formal care did not self-report an Activity of Daily Living (ADL) difficulty or an IADL difficulty. Government policy aims to reduce the need for long-term residential care by providing formal home care for older adults with low to moderate levels of dependency. This requires an increasing emphasis on personal care provision in the home. No evidence was found in this study to suggest that a shift in emphasis from formal domestic to personal care is taking place in Ireland. The absence of standardised assessment and eligibility criteria are deemed to be barriers to reorientation of the system. From a health services perspective, the current situation is not sustainable into the future and requires a focused policy response.

Important features of home-based support services for older Australians and their informal carers

Abstract: In Australia, newly initiated, publicly subsidised 'Home-Care Packages' designed to assist older people (≥ 65 years of age) living in their own home must now be offered on a 'consumer-directed care' (CDC) basis by service providers. However, CDC models have largely developed in the absence of evidence on users' views and preferences. The aim of this study was to determine what features (attributes) of consumer-directed, home-based support services are important to older people and their informal carers to inform the design of a discrete choice experiment (DCE). Semi-structured, face-to-face interviews were conducted in December 2012-November 2013 with 17 older people receiving home-based support services and 10 informal carers from 5 providers located in South Australia and New South Wales. Salient service characteristics important to participants were determined using thematic and constant comparative analysis and formulated into attributes and attribute levels for presentation within a DCE. Initially, eight broad themes were identified: information and knowledge, choice and control, self-managed continuum, effective co-ordination, effective communication, responsiveness and flexibility, continuity and planning. Attributes were formulated for the DCE by combining overlapping themes such as effective communication and co-ordination, and the self-managed continuum and planning into single attributes. Six salient service features that characterise consumer preferences for the provision of home-based support service models were identified: choice of provider, choice of support worker, flexibility in care activities provided, contact with the service co-ordinator, managing the budget and saving unspent funds. Best practice indicates that qualitative research with individuals who represent the population of interest should guide attribute selection for a DCE and this is the first study to employ such methods in aged care service provision. Further development of services could incorporate methods of consumer engagement such as DCEs which facilitate the identification and quantification of users' views and preferences on alternative models of delivery.

Advance care planning for older people in Australia presenting to the emergency department from the community or residential aged care facilities.

Abstract: The purpose of this retrospective, cross-sectional study was to determine the prevalence of advance care planning (ACP) among older people presenting to an Emergency Department (ED) from the community or a residential aged care facility. The study sample comprised 300 older people (aged 65+ years) presenting to three Victorian EDs in 2011. A total of 150 patients transferred from residential aged care to ED were randomly selected and then matched to 150 people who lived in the community and attended the ED by age, gender, reason for ED attendance and triage category on arrival. Overall prevalence of ACP was 13.3% (n = 40/300); over one-quarter (26.6%, n = 40/150) of those presenting to the ED from residential aged care had a documented Advance Care Plan, compared to none (0%, n = 0/150) of the people from the community. There were no significant differences in the median ED length of stay, number of investigations and interventions undertaken in ED, time seen by a doctor or rate of hospital admission for those with an Advance Care Plan compared to those without. Those with a comorbidity of cerebrovascular disease or dementia and those assessed with impaired brain function were more likely to have a documented Advance Care Plan on arrival at ED. Length of hospital stay was shorter for those with an Advance Care Plan [median (IQR) = 3 days (2-6) vs. 6 days (2-10), P = 0.027] and readmission lower (0% vs. 13.7%). In conclusion, older people from the community transferred to ED were unlikely to have a documented Advance Care Plan. Those from residential aged care who were cognitively impaired more frequently had an Advance Care Plan. In the ED, decisions of care did not appear to be influenced by the presence or absence of Advance Care Plans, but length of hospital admission was shorter for those with an Advance Care Plan.

Social participation and family carers of people living with dementia in Australia.

Abstract: This paper reports on a study exploring the experiences and meaning of social participation for family carers of people living with dementia. Participants were 33 family carers (17 spouses and 16 adult children) of older adults diagnosed with dementia (any stage or type) who responded to advertisements by the national Alzheimer's association, Alzheimer's Australia. Data were collected through semi-structured face-to-face and/or telephone interviews using an interview guide, which included prompts such as 'Tell me about what social participation means to you', and 'How did this change…'. The methods of grounded theory were drawn upon to guide sampling and analysis of data, which continued until theoretical saturation was achieved and occurred over the period September 2011 to March 2012. Data arising from the interviews were analysed line-by-line and coded and categorised using the constant comparative method, with codes clustered into themes and with abstraction from the themes to arrive at the core process. The core category arising from the data was adaptation, which encompassed four main themes: autonomy to choose; the impact of care-giving; employing strategies; and establishing meaningful connections. Carers went through a process whereby the ways in which they had previously participated socially were compromised, which often prompted an exploration of new ways in which to remain socially engaged.

Knowledge generation about care-giving in the UK: a critical review of research paradigms.

Abstract: While discourse about care and caring is well developed in the UK, the nature of knowledge generation about care and the research paradigms that underpin it have been subjected to limited critical reflection and analysis. An overarching synthesis of evidence – intended to promote debate and facilitate new understandings – identifies two largely separate bodies of carer-related research. The first body of work – referred to as Gathering and Evaluating – provides evidence of the extent of care-giving, who provides care to whom and with what impact; it also focuses on evaluating policy and service efficacy. This type of research tends to dominate public perception about caring, influences the type and extent of policy and support for carers and attracts funding from policy and health-related sources. However, it also tends to be conceptually and theoretically narrow, has limited engagement with carers' perspectives and adopts an atomistic purview on the care-giving landscape. The second body of work – Conceptualising and Theorising – explores the conceptual and experiential nature of care and aims to extend thinking and theory about caring. It is concerned with promoting understanding of care as an integral part of human relationships, embedded in the life course, and a product of interdependence and reciprocity. This work conceptualises care as both an activity and a disposition and foregrounds the development of an ‘ethic of care’, thereby providing a perspective within which to recognise both the challenges care-giving may present and the significance of care as a normative activity. It tends to be funded from social science sources and, while strong in capturing carers' experiences, has limited policy and service-related purchase. Much could be gained for citizens, carers and families, and the generation of knowledge advanced, if the two bodies of research were integrated to a greater degree.

Carer assessment: continuing tensions and dilemmas for social care practice

Abstract: Since the early 1990s, UK social care policy has committed to supporting carers. Legislation (England and Wales) over this time period has recognised the importance of separate carer assessments that take into account an individual's ability and willingness to care. This paper considers carer assessment from the perspective of social care practitioners. It reports on qualitative data from a carer research programme that spans over 20 years (1993 to present) and includes 383 in-depth interviews with social care practitioners across England and Wales. Offering unique longitudinal insights, we identify some persistent tensions associated with the translation of UK carer assessment policy into social care practice. We explore practitioners' long-standing ambivalence towards carer assessment and their reluctance to evidence carer need via a separate assessment process. Deficits relating to the conduct of carer assessment are identified. For example, the reliance on structured, problem-focused assessment protocols that restrict discussions to the personal care aspects of caring and fail to capture the complex, diverse lives that carers lead. Carer assessments do not reflect the reciprocal nature of many caring relationships, as a one-way direction of care is assumed. They do not take into account the broader support network of individuals who may be involved in helping someone with complex care needs. Carer willingness to care continues to be taken for granted and planning for the future is a significant gap in carer assessment practice. The proposed changes to the social care systems across England and Wales provide a timely opportunity to review the process and conduct of carer assessment. Policy guidance needs to clarify the links between service user and carer assessments and the way these align within broader assessment and care management frameworks. Assessment tools that encourage a narrative approach to carer assessment and capture the affective aspects of care-giving could benefit future practice.

'That would have been beneficial': LGBTQ education for home-care service providers.

Abstract: This paper reports qualitative findings from a pilot study that explored the lesbian, gay, bisexual, transgender and queer (LGBTQ) education needs of home-care service providers working in one large, urban Canadian city. The pilot study builds upon research that has documented barriers to health services for diversely situated LGBTQ people, which function to limit access to good-quality healthcare. LGBTQ activists, organisations and allies have underscored the need for health provider education related to the unique health and service experiences of sexual and gender minority communities. However, the home-care sector is generally overlooked in this important body of research literature. We used purposeful convenience sampling to conduct four focus groups and two individual interviews with a total of 15 professionally diverse home-care service providers. Data collection was carried out from January 2011 to July 2012 and data were analysed using grounded theory methods towards the identification of the overarching theme, 'provider education' and it had two sub-themes: (i) experiences of LGBTQ education; and (ii) recommendations for LGBTQ education. The study findings raise important questions about limited and uneven access to adequate LGBTQ education for home-care service providers, suggest important policy implications for the education and health sectors, and point to the need for anti-oppression principles in the development of education initiatives.

Use of quality information in decision-making about health and social care services--a systematic review.

Abstract: User choice and personalisation have been at the centre of health and social care policies in many countries. Exercising choice can be especially challenging for people with long-term conditions (LTC) or disabilities. Information about the quality, cost and availability of services is central to user choice. This study used systematic review methods to synthesise evidence in three main areas: (i) how people with LTC or disabilities and their family carers find and access information about the quality of services; (ii) how quality information is used in decision-making; and (iii) what type of quality information is most useful. Quality information was defined broadly and could include formal quality reports (e.g. inspection reports, report cards, etc.), information about the characteristics of a service or provider (e.g. number and qualifications of staff, facilities, etc.) and informal reports about quality (e.g. personal experience, etc.). Literature searches were carried out using electronic databases in January 2012. Thirteen papers reporting findings from empirical studies published between 2001 and 2012 were included in the review. The majority of papers (n = 9) had a qualitative design. The analysis highlighted the use of multiple sources of information in decision-making about services and in particular the importance of informal sources and extended social networks in accessing information. There is limited awareness and use of ‘official’ and online information sources. Service users or family carers place greater emphasis on general information and structural indicators. Clinical or quality-of-life outcomes are often difficult to interpret and apply. Trust emerged a key issue in relation to quality information. Experiential and subjective information is highly valued and trusted. Various barriers to the effective use of quality information in making choices about services are identified. Implications for policy and future research are discussed.

Unmet health and rehabilitation needs of people with long-term neurological conditions in Queensland, Australia.

Abstract: The survival and life expectancy rates of people with traumatic and degenerative neurological conditions are increasing, sometimes up to several decades. Yet compared to the general population, people with a disability continue to experience poorer health and are at greater risk of developing secondary health problems and facing barriers to services they require. These trends have significant implications for provision of health and rehabilitation services. In this study, the adequacy of health and rehabilitation services provided to people with long-term neurological conditions and their unmet needs were explored from the perspectives of individual users, their nominated family members and key service providers. A qualitative research design with maximum variation sampling was used. Data were collected from semi-structured interviews with 65 participants comprising 25 long-term care service users, nominated family members or friends (n = 22) and care service providers (n = 18) in Queensland, Australia. All service users needed assistance with usual daily activities, and 22 were wheelchair dependent. The hours of funded personal care ranged from 2 to 201 hours per week. Data were analysed using framework analysis. Participants generally perceived that specialist medical and hospital services were adequate and satisfactory. They valued supportive health and rehabilitation professionals and receiving client-centred physical rehabilitation. However, the majority of participants (n = 17) had perceived unmet needs for physical rehabilitation (n = 14), other health or rehabilitation services (n = 10) or counselling (n = 6). Community-based physical maintenance rehabilitation was often perceived as inadequate, costly or inconveniently located. Participants highlighted the importance of personal and family counselling and information provision at time points such as diagnosis. The findings contribute to the limited international evidence on the gaps in health and rehabilitation services for people with neurological conditions receiving lifetime care services in the community. A continuum of integrated rehabilitation services to minimise avoidable impairments, optimise independence and functioning, and sustain quality of life is warranted.

Men's Sheds: enabling environments for Australian men living with and without long-term disabilities.

Abstract: The health of Australian men has recently received greater attention. Men's Sheds are named in national policy as an exemplar community-based organisation for the betterment of men's psychosocial health; yet, the evidence base to support this is limited. This study investigates the comparative experience of men with long-term disabilities and men without long-term disabilities who go to a Men's Shed and to what extent this provides these men with an enabling, as opposed to disabling, environment. Data were collected from 12 individual interviews with men with long-term disabilities (5) and men without long-term disabilities (6), including 1 interview with the male Men's Shed Coordinator (MSC); participant observation within the shed; and a document received from the female MSC regarding the funding the Shed receives. Interviews explored the men's experiences at the Shed and their sense of belonging and social inclusion. Participants had any type of long-term disability and had been attending the shed for a minimum of 1 month. Data were collected between May and September 2013 and were analysed using the constant comparative method of grounded theory. The core theme that emerged was an enabling community space. The four sub-themes were: a community and social hub; an equalising space; a safe and supportive male environment; and meaningful male activities. The current literature exemplifies Men's Sheds to be important community-based organisations beneficial to men's health and well-being. For men living with long-term disabilities, this study illuminates that Men's Sheds offer an environment of equality, facilitating a collegial and egalitarian culture. Men can partake in enabling activities and enjoy the company of other men enhancing their sense of belonging and social inclusion as well as interact with other community groups that occupy the same space as the Men's Shed.

Enhancing social networks: a qualitative study of health and social care practice in UK mental health services.

Abstract: People with severe mental health problems such as psychosis have access to less social capital, defined as resources within social networks, than members of the general population. However, a lack of theoretically and empirically informed models hampers the development of social interventions which seek to enhance an individual’s social networks. This paper reports the findings of a qualitative study, which used ethnographic field methods in six sites in England to investigate how workers helped people recovering from psychosis to enhance their social networks. This study drew upon practice wisdom and lived experience to provide data for intervention modelling. Data were collected from 73 practitioners and 51 people who used their services in two phases. Data were selected and coded using a grounded theory approach to depict the key themes that appeared to underpin the generation of social capital within networks. Findings are presented in four over- arching themes – worker skills, attitudes and roles; connecting people processes; role of the agency; and barriers to network development. The sub-themes which were identified included worker attitudes; person-centred approach; equality of worker–individual relationship; goal setting; creating new networks and relationships; engagement through activities; practical support; existing relationships; the individual taking responsibility; identifying and overcoming barriers; and moving on. Themes were consistent with recovery models used within mental health services and will provide the basis for the development of an intervention model to enhance individuals’ access to social capital within networks.

Task shifting in the provision of home and social care in Ontario, Canada: implications for quality of care.

Abstract: Growing healthcare costs have caused home-care providers to look for more efficient use of healthcare resources. Task shifting is suggested as a strategy to reduce the costs of delivering home-care services. Task shifting refers to the delegation or transfer of tasks from regulated healthcare professionals to home-care workers (HCWs). The purpose of this paper is to explore the impacts of task shifting on the quality of care provided to older adults from the perspectives of home healthcare workers. This qualitative study was completed in collaboration with a large home and community care organisation in Ontario, Canada, in 2010-2011. Using a purposive sampling strategy, semi-structured telephone interviews were conducted with 46 home healthcare workers including HCWs, home-care worker supervisors, nurses and therapists. Study participants reported that the most common skills transferred or delegated to HCWs were transfers, simple wound care, exercises, catheterisation, colostomies, compression stockings, G-tube feeding and continence care. A thematic analysis of the data revealed mixed opinions on the impacts of task shifting on the quality of care. HCWs and their supervisors, more often than nurses and therapists, felt that task shifting improved the quality of care through the provision of more consistent care; the development of trust-based relationships with clients; and because task shifting reduced the number of care providers entering the client's home. Nurses followed by therapists, as well as some supervisors and HCWs, expressed concerns that task shifting might compromise the quality of care because HCWs lacked the knowledge, training and education necessary for more complex tasks, and that scheduling problems might leave clients with inconsistent care once tasks are delegated or transferred. Policy implications for regulating bodies, employers, unions and educators are discussed.

The experiences and needs of Chinese-Canadian stroke survivors and family caregivers as they re-integrate into the community.

Abstract: Stroke is a leading cause of adult disability and community re-integration is a priority for stroke rehabilitation. In North America, we have a growing population of individuals whose first language is not English. Little is known about the experiences of visible minorities living in North America as they re-integrate into the community post stroke or how these experiences change over time. Specifically, this research aimed to explore the experiences and needs of Chinese stroke survivors and family caregivers as they return to community living using the Timing it Right Framework as a conceptual guide. We recruited Cantonese-speaking stroke survivors and family caregivers from outpatient rehabilitation programmes. Using qualitative interviews conducted in Cantonese or English, we examined their experiences and needs as they return to community living and explored the influence of culture and time on their experiences. The interviews were transcribed and translated, and then analysed using framework analysis. Using framework analysis, we coded the data corresponding to the phases of the Timing it Right framework to determine the influence of time on the themes. We interviewed five Cantonese-speaking stroke survivors and 13 caregivers in 2009. We identified two main themes: (i) Participants' education and support needs change over time and (ii) Chinese resources are needed across care environments. These resources include access to care in their preferred language, traditional Chinese medicine, and Chinese food during their recovery and rehabilitation. To optimise Chinese stroke survivors' and caregivers' community re-integration, healthcare professionals should provide timely and accessible education and be aware of the role of Chinese diet and traditional medicine in stroke survivors' rehabilitation.

Ambiguity in practice? Carers' roles in personalised social care in England

Abstract: Carers play an ambiguous role within the personalisation paradigm currently shaping adult social care practice in England. Although carers have rights to assessments and support in their own right, these rights sit uneasily alongside the practices of assessment, support planning and personal budget (PB) allocation for older and disabled people. This paper reports how 14 dyads of older and learning disabled people with cognitive and/or communication impairments and their carers viewed the roles - desired and actual - played by carers in PBs. Interviews with carers and with older and disabled people were conducted during 2012 as part of a wider study into carers' roles in assessment, support planning and managing PBs. The interviews complemented a survey of reported practice in two English regions - interviews with adult social care services senior managers and focus groups with front-line care managers. Talking Mats(©) were used to support interviews with some service users. Interviews were transcribed and data analysed using the Framework approach. The interviews indicated that carers played important roles in service users' assessments and support planning, but were less likely to report receiving assessments or support of their own. While carers had the potential to benefit from PBs and support arrangements for service users, this did not reflect practice that aimed to enhance choice and control for carers. The paper draws on Twigg's typology of service conceptualisations of family carers and concludes that, despite the important social rights won by carers in England, current practice continues to regard carers primarily as a resource or a co-worker, rather than a co-client.

Communication and interpretation of emotional distress within the friendships of young Irish men prior to suicide: a qualitative study

Abstract: The potential for young men in crisis to be supported by their lay networks is an important issue for suicide prevention, due to the under-utilisation of healthcare services by this population. Central to the provision of lay support is the capability of social networks to recognise and respond effectively to young men's psychological distress and suicide risk. The aim of this qualitative study was to explore young men's narratives of peer suicide, in order to identify how they interpreted and responded to behavioural changes and indications of distress from their friend before suicide. In-depth qualitative interviews were conducted during 2009/10 with 15 Irish males (aged 19-30 years) who had experienced the death by suicide of a male friend in the preceding 5 years. The data were analysed using a thematic approach. Through the analysis of the participants' stories and experiences, we identified several features of young male friendships and social interactions that could be addressed to strengthen the support available to young men in crisis. These included the reluctance of young men to discuss emotional or personal issues within male friendships; the tendency to reveal worries and emotion only within the context of alcohol consumption; the tendency of friends to respond in a dismissive or disapproving way to communication of suicidal thoughts; the difficulty of knowing how to interpret a friend's inconsistent or ambiguous behaviour prior to suicide; and beliefs about the sort of person who takes their own life. Community-based suicide prevention initiatives must enhance the potential of young male social networks to support young men in crisis, through specific provisions for developing openness in communication and responsiveness, and improved education about suicide risk.

‘When you haven't got much of a voice’: an evaluation of the quality of Independent Mental Health Advocate (IMHA) services in England

Abstract: Advocacy serves to promote the voice of service users, represent their interests and enable participation in decision-making. Given the context of increasing numbers of people detained under the Mental Health Act and heightened awareness of the potential for neglect and abuse in human services, statutory advocacy is an important safeguard supporting human rights and democratising the social relationships of care. This article reports findings from a national review of Independent Mental Health Advocate (IMHA) provision in England. A qualitative study used a two-stage design to define quality and assess the experience and impact of IMHA provision in eight study sites. A sample of 289 participants – 75 focus group participants and 214 individuals interviewed – including 90 people eligible for IMHA services, as well as advocates, a range of hospital and community-based mental health professionals, and commissioners. The research team included people with experience of compulsion. Findings indicate that the experience of compulsion can be profoundly disempowering, confirming the need for IMHA. However, access was highly variable and more problematic for people with specific needs relating to ethnicity, age and disability. Uptake of IMHA services was influenced by available resources, attitude and understanding of mental health professionals, as well as the organisation of IMHA provision. Access could be improved through a system of opt-out as opposed to opt-in. Service user satisfaction was most frequently reported in terms of positive experiences of the process of advocacy rather than tangible impacts on care and treatment under the Mental Health Act. IMHA services have the potential to significantly shift the dynamic so that service users have more of a voice in their care and treatment. However, a shift is needed from a narrow conception of statutory advocacy as safeguarding rights to one emphasising self-determination and participation in decisions about care and treatment.