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Hidden carers

The following resources examine the challenges of identifying and finding carers who are hidden or hard to reach.

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.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).
 

Caring behind closed doors: Forgotten families in the coronavirus outbreak

Carers UK carried out an online survey between 3rd April and 14th April 2020. A total of 5,047 carers and former carers responded to the survey. This included 4,830 current carers and 217 former carers. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. As not all respondents completed every question in the survey, a number of the figures given in this report, including those presented here, are based upon responses from fewer than 5,047 carers.

Of current carers responding to the survey:

  • 67% live in England, 19% live in Scotland, 9% live in Northern Ireland, and 6% live in Wales.
  • 81% identify as female and 18% identify as male.
  • 23% consider themselves to have a disability.
  • 1% are aged 0–24, 4% are aged 25–34, 13% are aged 35–44, 27% are aged 45–54, 32% are aged 55– 64, 17% are aged 65–74, and 5% are aged 75 and over.
  • 4% identified as lesbian, gay or bisexual.
  • 4% described their ethnicity as black or minority ethnic.
  • 18% also have childcare responsibilities for a nondisabled child under 18.
  • 36% have been caring for 15 years or more, 17% for between 10–14 years, 24% for 5–9 years, 20% for 1–4 years, 2% for less than one year and just 1% have been caring since the beginning of the coronavirus outbreak. 
  • Most (71%) care for one person, 20% care for two people, 6% for three people, and 2% care for four or more people. 
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Covid-19 pandemic: 4.5 million become unpaid carers in a matter of weeks

New figures released for Carers Week (8th – 14th June 2020) show an estimated 4.5 million people in the UK have become unpaid carers as a result of the Covid-19 pandemic. This is on top of the 9.1 million unpaid carers who were already caring before the outbreak, bringing the total to 13.6 million.

2.7 million women (59%) and 1.8 million men (41%) have started caring for relatives who are older, disabled or living with a physical or mental illness. Typically, they will have been supporting loved ones from afar, helping with food shopping, collecting medicine, managing finances and providing reassurance and emotional support during the pandemic. Some will have taken on intense caring roles, helping with tasks such as personal care, moving around the home, administering medication and preparing meals.

2.8 million people (62%) who have started caring since the outbreak are also juggling paid work alongside their caring responsibilities, highlighting the need for working carers to be supported as they return to offices and work sites.

The six charities supporting Carers Week - Carers UK, Age UK, Carers Trust, Motor Neurone Disease Association, Oxfam GB and Rethink Mental Illness – are calling on the UK Government to recognise and raise awareness of the role unpaid carers are playing during the pandemic and ensure they are supported through it, and beyond.

Both unpaid carers (71%) and adults without caring responsibilities (70%) said managing the stress and responsibility of being an unpaid carer was/ would be the top challenge when caring. Families are under a huge amount of pressure managing their caring roles and are worried about how they will cope in the weeks and months ahead.

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Invisible realities: Caring for older Moroccan migrants with dementia in Belgium

The number of older Moroccan migrants reaching the age of high risk for dementia is increasing in Belgium. Yet no study has been performed to explore how Moroccan families facing dementia experience and manage the condition. The study employed a qualitative design using semi-structured interviews with 12 informal and 13 formal caregivers to answer this research question. Findings indicate that the experience of dementia includes several invisible realities that challenge the informal and formal caregivers: (1) the invisibility of dementia as a condition; (2) the invisible subtleties of the informal care execution; (3) the invisibility and inaccessibility of care services as explanation for these family's non-use of available services; and (4) the overlooking of culture, migration and religion as invisible influencers of the overall dementia experience. A better understanding of these hidden realities of migrant older people with dementia and their caregivers could lead to interventions to provide effective and tailored person-centred care that is sensitive to the individual's life experiences, culture and religious background.

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Improving the identification of cancer patients' caring relationships

The Carer Support Unit of the Central Coast Local Health District (New South Wales, Australia) is working with the District's inpatient cancer services to improve the identification of caring relationships for cancer inpatients. The first stage of the project was to do a literature review and environmental scan to assess the extent of the issue. We found significant barriers to carer identification, including: carer self-identification issues; definitional issues around the label 'carer'; system and process issues; and health workforce issues. This article outlines the findings of the literature review and environmental scan, supported by quotes from carers and health professionals. It incorporates recommendations for increasing the rate of carer identification for cancer inpatients at Central Coast Local Health District.

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Young carers: unknown and underserved

Darling et al discusses the UK's Children and Families Act 2014, Section 96 which defines a young carer as a person under 18 who provides or intends to provide care for another person. A survey in 2018 asking 925 children in England to outline if they provide care, and to describe the care provided and to whom, reveals the extent of caring by children is much higher than previous estimates. If results of the research reflect the country as a whole, then there are thousands of secondary school children (aged 11 to 16 years) in England caring for an individual at home, and that approximately 7% of young people have a significant caring role in the home for an ill or disabled relative.

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The Invisibility of a Family Caregiver

During the past five years, I have had the opportunity to meet and hear from many people who felt invisible. These individuals are among the 40 million family caregivers in the United States who are providing unpaid care to a parent, spouse, partner, friend or neighbor.

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Hidden carers? a scoping review of the needs of carers of people with HIV in the contemporary treatment era

The role of carers in supporting people with HIV is largely hidden in Western countries in the contemporary era of antiretroviral treatments. Little is known about their needs. A scoping review was undertaken to describe the research available on the needs of this group and identify gaps in existing knowledge. Findings reveal that carers of people with HIV have similar needs to other carers but are currently mostly invisible to support services. The article suggests that the discourse of independence underpinning the new HIV treatment era may be difficult for carers to 'disrupt' by naming what they do as 'care'.

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Young carer awareness, identification and referral

Young carers often provide care because they have always done so for the people they care about, and because they believe that the care recipient could not manage without them. For many young carers, looking after their own health, combining caring with schoolwork, getting access to training or having time off from carer duties can be a major challenge (Department of Health [DH], 2008). This paper presents evidence from a literature review that builds a substantial body of knowledge to suggest that community nursing teams must develop supportive approaches towards increasing an awareness of young carers' needs. Identification of young carers by community nurses will encourage referral to appropriate services and agencies. The aim of this study was to appraise, for the Queen's Nursing Institute, the published evidence base to explore young carers' needs and how community nurses could support young carers' needs in England. Databases were systematically searched. Title and abstract reviews found 606 potential studies (see Figure 1), which were identified around topics corresponding to the headings of three distinct categories: mental health and wellbeing; education needs and resilience; and development of coping strategies. Full-text review resulted in 26 publications that met the study's inclusion criteria. The results of this work show that there is a scarcity of publications around the community nursing needs of young carers. However, studies consistently report young carers are hidden from view and have a significant requirement for support and information. Therefore, effective ways of delivering community nursing support and information to young carers needs to be developed by service providers as a matter of priority, and implemented to give the support that young carers need. 

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Lost in translation? The challenges of measuring informal care among children and young people

This article uses data from the 2015 Young Life and Times and Kids' Life and Times surveys to discuss the methodological challenges of identifying young carers in surveys. The article considers how children's interpretation of 'caring' might not correspond with the definition of 'young carer' that adults wish to capture. This article discusses how prior consultation with young carers to improve understanding did not have the outcome anticipated. It advises that consultation should be carried out with young carers and their non-caregiving peers together, allowing space for 'co-reflexive practice'.

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Improving Support for America's Hidden Heroes: A Research Blueprint

The United States is home to more than 21 million veterans, many of whom deployed to support combat operations around the globe during their military service and sustained service-related conditions or disabilities. Supporting these wounded, ill, and injured warriors once home are millions of informal caregivers-individuals who provide unpaid support with activities that enable the service member or veteran to live in a noninstitutionalized setting. In this study, researchers describe elements of a research blueprint to inform future efforts to improve support for military and veteran caregivers. To construct this blueprint, researchers inventoried currently available research on caregiving for disabled adults and children and gathered stakeholder input by conducting a survey and facilitating an online panel. The study highlights the need for more studies that examine how military and veteran caregiver needs evolve over time, how programs are working, and how caregiving affects specific subgroups. The resulting blueprint should serve as a guide for the caregiver support community to use in prioritizing and facilitating future research.

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Family caregiver recruitment via social media: challenges, opportunities and lessons

Background: Illness blogs are a way seriously ill people communicate publicly about their illness journey. As communication about serious illness increases on social media, it is important to evaluate how this affects the family caregiver. However, identifying and accessing family caregivers remains challenging, especially via social media.; Purpose: The aim of this article is to report the opportunities, challenges and lessons learned from using social media to recruit family caregivers.; Methods: Recruitment methods included posting study invitations on illness blogs, advertising through Facebook and placing study fliers in the community.; Results: Using social media to recruit was inexpensive and provided a wide geographical reach. One important finding was discovering the importance of using language in the recruitment materials that family caregivers could identify with to help deem themselves as eligible to participate in the study.

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A cross-national and comparative classification of in-country awareness and policy responses to ‘young carers’

The reality for many families where there is chronic illness, mental health problems, disability, alcohol or substance misuse is that children under the age of 18 are involved in caring. Many of these children - known as 'young carers' - will be providing regular and significant care, either episodically or over many years, often 'hidden' to health, social care and other welfare professionals and services. These children have most often been invisible in social policy and professional practice. What are the reasons why some countries recognize young carers as a priority for social policy while others (most) do not? What are the key factors that influence a country?s awareness and responses to these children? This article provides an original classification and analysis of country-level responses to young carers, drawing on published research, grey literature, policy documents and the authors? extensive engagement in policy and practice networks for young carers and their families in a wide range of countries. The analysis identifies two of the key factors that influence the extent and nature of these policy responses, focusing on the importance of a reliable in-country research base and the contribution of influential national NGOs and their networks.

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Working but not employed: Mothers of adults with intellectual disability as hidden workers

Background Earlier research shows that nonemployed mothers of children with intellectual disability (ID) have lower wellbeing than employed mothers. This study explored why and to what extent these mothers did not participate in the labour market.

Method An in-depth interview was employed, and 18 working-age and nonemployed mothers in Taiwan who had an adult child with ID were interviewed in their homes between July 2009 and May 2010.

Results The mothers left the labour market at different stages of the family life cycle due to a lack of formal/informal support for the care needs of their young children, and the continuing intensive care needs of their child with ID. Mothers were officially nonemployed; however, to meet their family's financial needs, they were hidden workers in practice.

Conclusions Policies are required that support these hidden female workers, who are also lifelong carers, by offering financial support and affordable social services.

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Hidden caring, hidden carers? Exploring the experience of carers for people with long-term conditions

Informal carers make a significant contribution to illness management in communities, but many struggle to access support and remain ‘hidden carers’. We aimed to explore how carers of people with common long‐term conditions (LTCs, such as coronary heart disease or kidney disease) conceptualised their caring, and whether they struggled to identify themselves with the term ‘carer’ or access for support. We conducted semi‐structured interviews with 19 informal carers of people with LTCs recruited from local support groups. Topic guides were designed to encourage participants to provide their retrospective accounts of identifying as a carer or struggling to do so. Data were analysed using the constant comparative method. The study was designed collaboratively with a patient and public involvement (PPI) partner, and we consulted with a PPI steering group of people with lived experience of caring during the study. Results showed how participants drew on comparisons with those caring for more dependent relatives in explaining their reluctance to define themselves as a carer, and resisted adopting the label due to concerns that it would threaten the identity of the cared‐for person. The data were interpreted in terms of types of ‘work’ undertaken to manage LTCs, and revealed that carers of patients with LTCs appear to primarily engage in biographical and emotional support, which may be more difficult to conceptualise as legitimate caring ‘work’. Participants indicated that health professionals may be in a unique position to validate their role as carers and encourage support seeking. The study suggests how the greater focus on self‐management of LTCs in the community must be complemented by recognition of this group as potentially ‘hidden carers’, who support the patient to minimise the impact the illness has on their lives and consequently may minimise their own caring role, with negative implications for support seeking.

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Beyond caring

The special carer grant has so far failed to live up to expectations, especially in targeting ethnic minority carers. David Hepworth outlines what more needs to be done to help these 'hidden carers'. 

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Supporting carers: an action guide for general practitioners and their teams

This resource is a collaboration between the Royal College of General Practitioners (RCGP) and The Princess Royal Trust for Carers. It has been developed with the help of Sheffield University and over twenty GP practices who have piloted and evaluated some of the resources

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Help at hand for the hidden carer

The Law Commissioner has recommended changes to carers rights in its proposals to overhaul adult care law. The changes could help social workers to highlight the needs of hidden carers.

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Carers are not always seeking out the support they may need

'Hidden carers' refers to informal carers who may not recognise themselves as carers and so do not, or struggle to, access support. This may apply to carers of people with long-term conditions, such as heart disease, whose role involves more emotional work than practical tasks.

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General practitioners and carers: a questionnaire survey of attitudes, awareness of issues, barriers and enablers to provision of services

Background: Approximately one in ten of the UK population are unpaid carers supporting a family member or friend who could not manage without their help, saving the UK economy an estimated £87 billion. This role is known to sometimes have a negative impact on carers and to require support both informally and from statutory services. General practice is a first point of contact for carers but research investigating general practitioners' (GPs') attitudes towards carers and awareness of issues facing carers is rare. This study therefore aimed to identify GPs' attitudes, awareness of issues, and perceptions of the barriers and enablers to provision of services.

Methods: Using a self-completion questionnaire distributed at a series of workshops, this study investigates GPs' attitudes to carers; awareness and knowledge of carers' issues; services offered in general practice and barriers to supporting carers.

Results: Seventy eight out of a total of 95 GPs (82% response rate) from a variety of areas in England completed the questionnaires. The GPs identified time, resources and lack of knowledge as barriers, but only 9% agreed with the statement that there is little support they can offer carers. However, nine in ten GPs (89%) feel they have insufficient training here and approximately half of them (47%) lack confidence that they are meeting carers' needs. Confidence in identifying carers is also low (45%). Issues that GPs would look out for amongst carers include emotional and physical health problems and financial and isolation difficulties. GPs specifically highlighted educational and isolation issues for young carers. Few services were described that targeted carers.

Conclusions: GPs recognise that they have an important role to play in supporting carers but would like training and support. Further investigation is needed both to determine how best to train and facilitate GPs and general practice teams in their role in supporting carers and to identify what carers need and want from general practice. Identifying carers' leads or carers' champions amongst practice staff is possibly one way forward. Given the proposed greater commissioning role for primary care, greater understanding here is particularly important.

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Developing a strategy and action plan to promote equality and human rights: stakeholder consultation workshop outcome report: 29 November 2005

A society emerging from conflict, such as Northern Ireland, has an opportunity to tackle the full spectrum of discriminations affecting the society. The rights of citizens, the needs of carers and inequalities emerging from the history of conflict, are catered for. Access problems to health and social care services are still being experienced by hard to reach sections of our communities and health inequalities still persist. The strategy aims to change this consulting on  disabled peoples’ access to health and social care services, and the development of better quality services.

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Identifying carers' needs in the palliative setting

There are an estimated half a million people in the UK who provide unpaid care for a relative or friend with a life-limiting or terminal illness at any one time. Every year thousands of people take on a caring role, whereas others find that this role has ended. This guide has been developed by an expert working group, and provides a framework for developing a carers’ assessment process. It offers advice on how to identify carers and gives an overview of the assessment methods currently used by palliative care providers. The purpose of this document is to guide palliative care professionals in developing a process to identify carers’ needs that is relevant to their local context and provide, or refer/direct carers to, support services. This process is referred to as ‘carers’ assessment’ throughout the guide.

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Hidden patients: The relatives of patients in need of palliative care

Background: When identifying patients for palliative care, medical specialists find it necessary to disclose “hidden” patients: the patient's relatives. The issue has been discussed sporadically in Bulgaria; the present study was part of a larger investigation that examined the opinion of medical specialists, patients, and their relatives.

Method: The study protocol was explained to participants who gave written informed consent. Patients (n=211) were followed up on by their general practitioners (GPs) (n=42) during one year. All relatives were invited, and 173 (82%) agreed and participated. A questionnaire created by the authors was used. The data were analyzed by frequency distribution (descriptive statistics) and nonparametric tests (Pearson's χ2) and statistically processed using SPSS 17.0 (SPSS Inc., Chicago, IL).

Results: Relatives providing care were predominantly women, two-thirds over 60 years of age. There was a one-to-one ratio between caregivers for oncological and nononcological patients. The duration of care was more than one year in 53% of cases. Most relatives reported their loved ones found physical suffering “very hard to bear” (53%), while approximately 17% could not assess the extent of psychological suffering. The vast majority stated that they had difficulties in providing care, and 68% had financial problems in that respect.

Conclusion: Including relatives as users and part of the palliative care team has been discussed in the literature. In Bulgaria, participation is solely due to the lack of organized services for palliative care. Relatives participate in activities that are performed by trained staff in countries with developed palliative care; these activities, along with negative emotional experiences and economic difficulties, overburden these caregiving relatives significantly.

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Malnutrition and caring : the hidden cost for families

Key points from this report about malnutrition: • Malnutrition is a hidden issue in the community which needs to be urgently tackled • Families are under stress and struggling to care without the right advice and support • Malnutrition is largely preventable and treatable • Earlier intervention will help to improve the quality of life for individuals and reap substantial cost savings to health and social care.

Related facts: • More than 3 million people in the UK are either malnourished or at risk of malnutrition1 • 93% of those individuals live in their own homes or with their family

Our survey found: • 74% of carers prepare all the meals for the person they care for • 25% care for someone who is underweight • 60% of carers worry about the nutrition of the person they care for • 55% of the people being cared for use nutritional supplements • 16% were caring for someone who was underweight and with a small appetite and were worried about their diet yet were not having any nutritional support of any kind.

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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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Hidden Child Workers: Young Carers in Zimbabwe

Drawing on an interview-based case study of young people caring for dependent adult members of their households in Harare, this paper connects the experiences of young carers in Zimbabwe to global forces—namely the HIV/AIDS pandemic and economic liberalisation. It is argued, firstly, that care-giving by young people is a largely hidden and unappreciated aspect of national economies which is growing as an outcome of conservative macroeconomic policies and the HIV/AIDS explosion. Secondly, that young people have a right to recognition of their work as work. Thirdly, while acknowledging that conceptualising childhood is problematic, there needs to be less emphasis on northern myths of childhood as a time of play and innocence and more attention on defending children's rights to work as well as to be supported in their work under appropriate circumstances. The articulation between global processes and the localised experiences of individual children as providers of care within the home contributes to efforts to re-introduce social reproduction as an important (but often missing) aspect of debates around globalisation. In addition, this article adds to the growing literature on the geographies of childhood while tackling the imbalance within that literature, whereby working young people and those of the global South are relatively neglected. Suggestions are offered in the conclusions for policy recommendations to recognise and support young carers in Africa, while calling for further research.

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Caregiving for the elderly family members as a challenge for men - The hidden and forgotten carers in ageing Europe

The purpose of our research was to investigate male caregiving via a status of being hidden and forgotten in East-Central Europe, where caregiving itself had only lately been emancipated, and only as provided by women. In Poland and in other European countries the gender bias is clear: men provide less care than women, the care is less intensive and of a different character. By desk research, own research interpretation and literature review, the paper addressed informal, family caregiving towards frail older adults performed by men. We examined the assumption that the family was the prime careholder of the aged as imprinted in European psyche and stereotypical expectations that females became the main caregivers. Yet, the demographic forecast showed that informal caregiving for frail adults was inevitably falling on men, as a result of increasing divorce rates and women’s employment. However, this picture is incomplete, making men forgotten or hidden carers. Major findings of our research were to provide a broader discourse on male caregiving and have positive impact with practical after-effects as well as filling gaps in knowledge in several relevant fields

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"Carers behind bars": the hidden world of caring in English prisons

Taking as its starting point the establishment of the Standing Commission on Carers in 2007 and the launch of the National Strategy for Carers in 2008, this article explores who carers are and how demographic changes are likely to impact on carer numbers. It deduces that the need for care is likely to rise significantly in the near future and as such carer numbers will grow. It argues that future policy must take this, and the importance of carers themselves being supported, into account. The article's main focus is on a carer community that has remained largely hidden, that is, imprisoned people who are caring for other prisoners. The extent and nature of the rapidly increasing prison community is discussed with particular attention being drawn to prisoners' health. The high prevalence of poor health in prison is attributed to a complex combination of circumstances. Research (particularly co-author Julia Tabreham's PhD study 'Prisoners' Experience of Healthcare in England) is used to demonstrate that prisone [...]

Accessing a hard to reach population: reflections on research with young carers in Ireland

In keeping with developments in children's rights, research is increasingly including the views of children. Accessing a hard to reach population of children can, however, raise significant ethical and methodological challenges for researchers. Negotiating access through gatekeepers, securing parental consent and limits on confidentiality are central issues in the recruitment process of children. This paper is based on a qualitative study of young carers in the Irish population. It outlines the methodological approaches employed to access a representative sample of young carers and the measures taken to fulfil ethical obligations. In the recruitment phase of the study, researchers attempted to strike a balance between two sometimes competing requirements, the need to protect children from harm and to respect children's competence. This paper reflects on the success and limitations of the approaches adopted towards achieving this balance, exploring the use of gatekeepers as a method to identify and recruit a hidden population, and revisiting the measures taken to comply with the ethical requirements of parental consent and limits on confidentiality.

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Keeping carers healthy: the role of community nurses and colleagues

Carers form a substantial proportion of the patients seen by primary care professionals, but their health needs are often overlooked. By recognizing and addressing the needs of the carer as well as the patient, primary care staff (including practice, community and district nurses) can protect the physical and mental health of both. Staff can start by developing simple systems for identifying and recording both patients who are carers, and patients who have carers. Primary health professionals may be able to identify specific opportunities for checking on carers’ health, e.g. at general health checks or clinics for older people or those with chronic diseases. Community nurses should ensure that they use their home visits to keep an eye on the health of the carer as well as the patient. Much of this input can be integrated into the everyday activities and priorities of the primary care team.

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Supportive practice with carers of people with substance misuse problems

While there is increased recognition of the role of family carers in supporting adults with social care needs, some groups of carers are overlooked or hidden from professional view. Carers of people with substance misuse problems may be among this group since they are at risk of feeling guilty and stigmatised; targeting and eligibility criteria may concentrate professionals’ activities on people with high levels of need for practical support and there may be complex family dynamics where the role of carer does not fit traditional models. This article draws on a study of carers’ workers (professionals whose role entailed a specific remit to work with carers, such as carers support workers) and family carers undertaken in four areas of England. A total of 86 interviews were conducted (late 2011–2012), of which, just over a quarter (26%) involved some discussion of substance misuse. The findings were analysed thematically. The findings from the study were later reported to a focus group of practitioners and carers with experience of drug-and-alcohol support for validation in 2014. Key themes in relation to social work practice with carers of people with alcohol and other drug problems were those of insecure funding of voluntary sector carer services; balancing generic support for family carers and specific support for certain groups of carers; and feelings among carers that the drug-and-alcohol problems experienced by the person they were supporting contributed to them feeling excluded from general carers’ support. The article concludes that drug and alcohol social workers should be alert to the implications of the Care Act 2014 and its provision for carers, and that carers’ workers should be confident in being able to refer carers to appropriate support in either general or specific settings or raise this as an unmet need if such provision is not adequate locally. Social work trainers and educators should ensure they are working within evidence-based interventions to enhance professional capacity and capability.

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Understanding the barriers to identifying carers of people with advanced illness in primary care: triangulating three data sources

Background: Approximately 10% of the UK population have an unpaid caring role for a family member or friend. Many of these carers make a significant contribution to supporting patients at the end of life. Carers can experience poor physical and psychosocial wellbeing, yet they remain largely unsupported by health and social care services. Despite initiatives for general practices to identify carers and their needs, many remain unidentified. Neither are carers self-identifying and requesting support. This study set out to explore the barriers to, and consider strategies for, identifying carers in primary care.

Methods: We integrated findings from three data sources – a review of the caregiving literature; a workshop with researchers who have undertaken research with those caring at the end of life, and focus groups with carers and health professionals.

Results: Three categories of barrier emerged. 1) Taking on the care of another person is often a gradual process, carers did not immediately identify with being a ‘carer’ – preferring to think of themselves in relational terms to the patient e.g. spouse, sibling, son or daughter. Often it was health and social care professionals who encouraged carers to consider themselves as an unpaid carer. 2) As the cared-for person’s condition deteriorated, the caring role often became all-encompassing so that carers were managing competing demands, and felt unable to look after their own needs as well as those of the cared-for person. 3) There was ambiguity about the legitimacy of carer needs and about the role of the primary health care team in supporting carers, from both the perspective of the carers and the health professionals. GPs were thought to be reactive rather than proactive which discouraged carers from asking for help.

Conclusions: The needs of carers have to be legitimised to ensure primary care staff are proactive in their approach and carers are empowered to utilise the support available. Strategies to identify carers have to be sensitive to the complex dynamics of a caring relationship as well as the primary care context. Identification is a key factor in improving support for carers themselves and to enable them to support the patient.

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The intersection of employment and care: evidence from a UK case study

Working carers are a key focus of UK policies on health and social care and employment. Complementing national and European evidence, this paper presents a local case study of working carers. It draws on data from a county-wide survey containing a module on caring. Data were primarily categorical and were analysed using SPSS. Three quarters of all carers who responded to the survey were of working age: two thirds were employed and one third had been employed previously. The majority of working carers were mid-life extra-resident women. Over half of cared for relatives were elderly parents/in law; ‘physical illness’ was the primary cause of dependency. A tenth provided intensive care and half reported that caring adversely affected their health. Both were triggers for leaving employment. Two thirds of households received input from services and/or friends/family; being a co-resident carer appeared to mitigate against service allocation. Four issues were identified as pivotal to facilitating employment: access to advice and information, the availability of a matrix of affordable good-quality social-care services, ‘joined up’ needs assessment of the carer and cared for person, and employers identifying carers in their workforce. Europe's ageing profile underscores the study's timeliness.

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Risk and adult social care: identification, management and new policies. What does UK research evidence tell us?

Risk is a central defining feature and area of concern in adult social care provision, but what do we actually know about how service users, carers and practitioners define and manage risk? This question is increasingly important as current policy advocates greater service user choice and control through a range of self-directed support mechanisms, and statutory duties and professional boundaries are challenged. This paper reports the results of a recently completed UK based scoping review that investigated how different groups of adult social care service users and service providers perceive and understand the everyday risks they face. It highlights how different management strategies are also adopted by different groups of people, which can lead to tensions and potential conflict between practitioners, service users and informal carers. However, whilst some areas of risk in adult social care have been the focus of considerable research, others appear to have been largely ignored. The voices of some groups of users remain hidden and apparently of little concern. These gaps and inconsistencies will be identified and discussed in relation to current policy developments and their implications.

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Caring for carers: how community nurses can support carers of people with cancer

There are more than 1 million people in the UK looking after a family member or friend with cancer, but half the number of these carers do not receive support to care. Providing this care significantly affects cancer carers emotionally, physically, and financially. Community and district nurses have a vital role to play in reaching out to these hidden carers and signposting them to the correct support. This article provides tips on identifying carers, including who they are, the challenges they face, and how health professionals can approach and speak to them. It also provides guidance on signposting carers to national and local sources of support in the UK.

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Implementing and evaluating the first german young-carers project: intentions, pitfalls and the need for piloting complex interventions

The aim of the study was to develop, implement and evaluate a concept for the first support program for young carers and their families in Germany. This paper intends to critically review the implementation of that study and describe the problems experienced by the research team, including: the complexity of the intervention itself, the difficulty of finding host organizations, the lack of infrastructure, different values and beliefs about the project aims held between the host organization and the research team, shortage of time, identifying and recruiting families among the hidden population of young carers. These initial problems led to the re-constructuring of the original research design. In order to evaluate factors that influenced these difficulties, the original research intentions, emerging problems and their consequences will be presented.;

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An adult education: Learning and understanding what young service users and carers really, really want in terms of their mental well being

For the past decade nurse education has incorporated service user and carer perspectives into their programme and research agendas. Moving from rhetoric to the reality of embedding adult service user and carer knowledge into nurse education this paper discusses how this good practice was extended to young people under the age of 18. Globally, the mental health of young people is coming under the spotlight and based on this two “World Café” events focusing on young people and their mental well being were organised. Targeting a multi-agency audience the aim was to develop a partnership consortium, bringing together local organisations involved in promoting the mental well being of young people. This paper reports on the first World Café, led by two local young people's groups, ‘Florescent Adolescent’ and ‘Vocal’. Following the presentations four important areas were identified (1) Inclusive rather than exclusive (2) Crystal ball gazing — young people's futures (3) A hole in the net — catching young people at the right time (4) Exposing the hidden agenda. The day resulted in three collaborative research proposals and the realisation that young people need opportunity to participate through utilising more innovative ways of engaging with the professional adult world.

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Where carers become the cared for

Carers with learning disabilities are a hidden group within the population, and remain a largely neglected group. The article describes a campaign called ‘Who Cares for Us?' which is working with government and social services to make sure carers with learning disabilities are included in the new carers strategies. The Valuing People Now formed a National Network for Carers with Learning Disabilities, building on the work of 'Who Cares for Us'. The article acknowledges that more needs to be done, but ultimately supporting carers is an invaluable process, both for the community and the economy.

Caring in later life: reviewing the role of older carers

There has been growing recognition of the important role that carers play in enabling vulnerable adults to remain in the community. Recent legislation has recognised the role of the family carers and encouraged the development of support services. Considerable research has been undertaken to identify the needs and the experiences of the carers in general but little specific attention has focused on older carers. This is despite the fact that they have their own unique needs which may have been hidden in previous research. This review commissioned by Help the Aged brings together exisiting evidence and supplements it with fresh analysis of the General Household Survey 1995 [GHS 1995] to draw out the particular needs of carers over the age of 60.

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Employment and Informal Care: Sustaining Paid Work and Caregiving in Community and Home-based Care

Informal care provides the often hidden foundations of policies promoting care in the community and Ageing in Place. This paper examines the current impasse concerning those who are employed and seek to provide care, canvassing current and future possibilities for finding a way through the existing conflict between sustaining employment and providing informal care in the home. Focusing on the issues that emerge regarding support of older (aged) care recipients, the paper first considers the demographic, economic and democratic and governmental policy causes of the current problems. It then examines the emerging care gap expressed through the joint crisis of informal and formal care. The final section considers the solutions proposed to help re-embed care in the societies of the 21 century. These include developments related to the workplace and employment, as well as solutions concerned with providing extra services, expanding the care workforce, paying family caregivers and using technology. 

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Capturing the carer's experience: a researcher's reflections

AIM: To reflect on the methodological challenges of conducting a study exploring the effects on quality of life of being an informal carer for a person with palliative heart failure, as well as the factors that influence a carer's perception of caring.

BACKGROUND: There are multi-faceted influences on the positive and negative effects of being a carer for a patient with palliative heart failure. By conducting a mixed methods study the aim was to examine and explore similarities and differences of the phenomenon of being a carer.

DATA SOURCES: Quantitative data obtained from the Family Quality of Life Questionnaire (FAMQOL), and qualitative data obtained from 14 interviews with informal carers of patients living with palliative heart failure.

REVIEW METHODS: The study was conducted as part of a PhD, University of Sheffield, and the supervisory team reviewed the research process throughout the study.

DISCUSSION: The study had a two-phase sequential mixed methods design. A sample of carers was recruited from heart failure nurse service caseloads in a UK urban setting. Carers were invited to complete the Family Quality of Life Questionnaire, a tool developed for carers of patients with heart failure. Participants were also asked to provide contact details if they were willing to be interviewed for the second phase of the study.

CONCLUSION: The study highlights important methodological considerations for recruiting carers. As the intention was to begin the analysis of the questionnaires before beginning the second phase of the study, the researcher was compelled to consider how integration was maintained and how to improve access to carers for research.

IMPLICATIONS FOR PRACTICE: The complexities associated with the population in this study led the researcher to use a pragmatic design to address research questions. When reflecting on the research and the challenges associated with recruiting to the quantitative phase of the study, the researcher used an iterative approach to meet the unfolding complexities. Such an approach could prove beneficial for mixed methods studies that aim to engage with hard to reach populations

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A study identifying the difficulties healthcare students have in their role as a healthcare student when they are also an informal carer

There is a growing body of literature concerning the needs of informal carers, however, there is little relating to the needs of carers who are also university students. There are a number of publications concerning the difficulties university studies may cause and in particular the stress that some healthcare students endures when they undertake clinical placements. Being an informal carer has the potential to aggravate any difficulties students may have in the normal course of their studies.

The purpose of the study was to explore the experiences and needs of healthcare students who are also informal carers. An electronic survey (February 2010) of 3567 students identified 36 students who are also informal carers. Most were female, pre-registration nursing students, studying full-time and who cared for their physically disabled children, chronically ill parents or terminally ill grandparents. Most respondents spent over 6 h a day on informal caring responsibilities. The majority said informal caring had a negative impact on their studies.

An in-depth interview study was undertaken (April 2010) with ten students. Data themes identified in the analysis were; descriptions of being an informal carer, impact of caring on studying, sources of support and hidden lives. In the theme ‘hidden lives’ students highlighted that they did not want university staff to know that they were informal carers as they did not want ‘special’ treatment. It was theorised that this could be due to the stigmatisation sometimes attached to being a carer. The value of the study was that it was found that more targeted information about student support services is needed, to help students successfully complete their studies. This would be beneficial for universities too as students who leave early without successfully completing their programme have financial implications.

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Hidden Children: Perspectives of Professionals on Young Carers of People with Mental Health Problems

Young carers of people with mental health problems are highly hidden, ostracised and vulnerable. To make matters worse, many professionals from the social, health and education sectors are not fully aware of the difficulties and central issues facing young carers of people with mental health problems. In order to make young carers of people with mental health problems more visible and to explore gaps in need and good practice from the perspectives of professionals, 65 participants were interviewed. The sample included professionals from the social, healthcare and voluntary sectors. Respondents were asked to discuss their understanding of young carers and appropriate interventions and methods to address young carers’ needs. Findings highlight: young carers’ isolation, stigma and restricted opportunities; fears involving family separation and child protection; and examples of good professional practice. New findings and examples of good professional practice that provide holistic, sensitive and effective support include: young carer groups and forums; young carer days; raising awareness of young carers in schools, especially via technology such as DVDs and the Internet; and having key workers to befriend young carers so as to advocate for better care, to provide emotional and psychological support and to facilitate young carer involvement.

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Support needs of carers of dependent adults from a Bangladeshi community

AIM: This paper reports a study identifying the health and social care needs of informal carers for dependent adult relatives from a Bangladeshi community in South Wales and their views on the acceptability and appropriateness of formal support services provided by statutory, private and voluntary sectors.

BACKGROUND: Within the next 20 years in the United Kingdom the proportion of older people from black and ethnic minority communities will dramatically increase and there will be an increased demand for carers. Asian carers, particularly Bangladeshi carers, are one of the most neglected and invisible groups. As carers are fundamental to the success of community care and their importance is increasingly recognized, caregiving within Asian communities needs further exploration.

METHODS: A qualitative study with individual focused interviews was conducted with 20 Bangladeshi carers, using a combination of purposive and snowball sampling. Maxwell's dimensions of acceptability and appropriateness of quality of care were applied to aid understanding of the findings.

FINDINGS: Families primarily cared for Bangladeshi dependent adults and viewed the experience positively, although they were providing care under challenging circumstances. There was a lack of awareness of the health and social services available to assist carers, and limited involvement of community nursing and social services. A tension was identified in accepting some types of formal support, and ethnocentrism in service provision was evident.

CONCLUSION: Institutional barriers to accessing formal support, such as the inability to meet religious and cultural needs, must be addressed if Bangladeshi carers are to be provided with services which are acceptable to them. Primary care providers, including community nurses and health visitors, need to work in partnership with the Bangladeshi community if services are to be acceptable and appropriate for meeting the needs of these hidden carers.

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One million and counting: the hidden army of young carers in Canada

The term ‘young carer’ refers to those youth under the age of 25 years who provide substantial unpaid support to a family member due to factors including, but not limited to, familial or parental absence, disability, mental health issue(s) or problems with alcohol and/or other drugs. In the UK, national statistics have been integral to tracking the prevalence of young carers while serving as an important tool towards the development of (and justification for) a national legislative framework supporting these youth. In Canada, research and awareness for young carers remains in its infancy and available national datasets have yet to be examined in relation to youths providing unpaid caregiving. As a result, this research provides the first trend analysis of youth-based caregiving in Canada using census data for the 1996–2006 time-period. Methodological limitations of official statistics are also discussed in terms of conceptual and operational constraints limiting the full identification of all those potential young carers.

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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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Young, gifted, and caring: A project narrative of young carers, their mental health, and getting them involved in education, research and practice

Young carers are a global phenomenon. The UK estimates it has in excess of 175 000 young carers, the onset of their caring role often occurring between 8 and 10 years of age. Of these, 17 000 are caring for a parent who has severe mental illness, a significant factor for children entering the health and social care system, as up to 60% experience mental health difficulties themselves. This paper reports on the outcome of a participatory project aimed at better understanding the needs of young people. A World Café event was hosted, bringing together those involved in promoting the mental health of young people in a partnership consortium. The event was led by young service users and carers. Important issues raised by the young carers were being excluded from being included; stuck in the here and now, ignoring the future; a hole in the net; and ensuring the hidden is on the agenda. The World Café gave the university the privilege of insight into what local young carers need to improve their mental health, and more importantly, how we can utilize our skills to help them achieve their goals.

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Focus on carers and the NHS: identifying and supporting hidden carers: good practice guide

There are many different organisations working with and supporting carers. This guide can be used by a wide range of professionals in different ways. Whilst the case studies provide examples of the partnership work promoted by Carers Centres, the methodologies given can be used in other partnership work across carers’ services, as well as within health and social work services.

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Hidden from View: The experiences of young carers in England

There are 166,363 young carers in England, according to latest census data released on 16 May 2013. The Children’s Society believes this could be just the tip of the iceberg. Many young carers remain hidden from official sight for a host of reasons, including family loyalty, stigma, bullying, not knowing where to go for support. Some young carers are as young as five years old.

This report provides a valuable insight into the daily lives and outcomes for young carers, by using data from the Longitudinal Survey of Young People in England (LSYPE) publically for the first time. We know from our decades of experience of working with young carers across England, that caring can cost young people dearly if they are not given the opportunities to participate in all aspects of life. They can miss out on a huge range of opportunities that so many other children and young people take for granted, from educational opportunities, to spending time with friends and having time and space to do their homework.

It also reveals how young carers are gaining fewer qualifications and are therefore less likely to earn a decent living. We are calling for support for these children, to make sure that they have the same opportunities as other children. We hope to bring about change by influencing policy makers to help prevent these children and young people from caring in the first place.

Many young carers come from hidden and marginalised groups, including children caring for family members with mental illness or a substance dependency. This group of young carers was not captured in the latest census.

Children must be allowed to thrive and enjoy their childhoods, not be relied upon to take caring roles that are too often inappropriate. One young carer remaining under the radar, out of sight of the very authorities there to support them, is one too many.

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Supporting young carers and their families using a whole family approach

Young carers are children and young people who look after family members with illness, disabilities, mental illness or substance misuse. Many of these young carers help with personal nursing care and administration of medication as well as household tasks and care of younger siblings. Inappropriate levels of caring can impact on a child's own emotional and physical health, educational achievement and life chances. There are many reasons why young carers may remain hidden and unsupported including reluctance among some families to acknowledge children's caring roles or involve agencies because they fear family breakup. It is essential to develop proactive practice that will enable families to feel able to ask for support. Health professionals have a responsibility and are in a key position to identify these vulnerable families and mobilise support services. The key to support is the development of a whole family approach to offering co-ordinated assessments and services to support the person with care needs and their family as well as the young carer. The Whole Family Pathway is an online resource directing practitioners to support for young carers and their families. Young carers say that they would like to be listened to, provided with information, supported at school and referred to young carers' projects. The Children's Society Include Project provides training and resources for professionals who work with young carers and their families. 

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Who cares for the carers? The district nurse perspective

Background. Community care of elderly and disabled people is increasing. Primary care teams are expected to provide support to the informal carers essential for its success.

Objective. To explore district nurse (DN) views about roles of the primary care team and what is needed for support of informal carers.

Method. A qualitative analysis of open-ended questions contained in a larger postal questionnaire.

Results. DNs viewed improved respite care, general support and information provision as priorities for supporting carers, and lack of resources and access as the main reasons why they could not be more active. They thought other team members might be better placed to take that role. GPs were seen as key members of the primary care team providing services, actively identifying carers and co-ordinating other services and team members.

Conclusion. DNs identified several areas of support for carers that could be improved: respite, information provision and general support services. They did not feel able to be pro-active in support of informal carers themselves and viewed the GP in that role as a central co-ordinator of care and services.

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Hidden carers

Informal carers provide the majority of care for older people living in the community. The provision of care can be very stressful and is said to have an adverse effect on caregivers health. policy has recognised the need to support carers and a key objective has been to improve service provision for them. research has shown that service intervention can prevent the breakdown of care and admission to long term care. However, relatively few carers and older people use formal services. While the low uptake of services is documented it is not fully understood. This volumne focuses on the lives and experiences of carers who are unsupported by and hidden from the gaze of service providers. It considers the complex relationship between carers and service providers from the caregivers perspective. It asks why some carers provide high levels of care without support from service providers and what factors, if any, may lead to their acceptance of service intervention. Caregivers accounts iluminate the discussion of a temporal model of caregiving which is developed agianst the backcloth of the distinctive Scottish approach to policy on carers, identifying them as key partners in the provision of care. It is argued that for some being a hidden carer is but a stage, albeit a lengthy one, in an extended process and that many carers will move on eventually to acceptance of formal service support.

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'So that's how I found out I was a young carer and that I actually had been a carer most of my life'. Identifying and supporting hidden young carers

A common theme in the literature on care-giving is the issue of ‘hidden’ carers, that is, people who undertake caring roles and responsibilities, yet do not identify themselves as carers. One reason people do not recognise themselves as carers relates to the nature of the caring relationship. When providing care for a family member, intra-familial bonds of love and reciprocity do not encourage parties to view the relationship as anything other than a ‘normal’ familial relationship. The lack of self-identification amongst young carers is complicated further by societal norms surrounding care-giving. Whereas adults are expected to provide care to other adults and children, young people are not expected to be care-givers but rather care recipients. As a result, many young carers remain ‘hidden’ and beyond the reach of services and supports designed to help them in their caring role. This paper draws on qualitative research with young carers and service providers to explore the issue of self-identification amongst young carers. The paper concludes with recommendations for identifying and supporting hidden young carers.

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Hidden shame: a review of the needs of Asian elders with dementia and their carers in a Kent community

This article outlines the findings and general implications of Mental Health Foundation research into the needs of older Asians with dementia and their carers. The project was carried out in an area with an Asian majority population in North West Kent. The focus is on the identification of need and on factors which block access to care and support. There are recommendations for practitioners and commissioners about raising awareness, service development and training. 

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Young carers

Alex Fox highlights the hidden struggles of young carers and the signs health practitioners can look out for to identify those who need support.

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Why the NHS must look after its hidden workers

Carers play a central role in many healthcare users' lives. Although services are recognising that they must be valued and supported, there is much more to be done to ensure this unpaid workforce's wellbeing, reports Jennifer Taylor. 

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'I realised that I wasn't alone': the views and experiences of young carers from a social capital perspective

The concept of social capital is very much an ‘adult’ concept, created by adults for adults, with children as the passive recipients of, primarily, parental social capital. The concept has been broken down into three particular subcategories – bonding (getting by), bridging (getting on) and linking (getting around). However, these subcategories equally do not relate readily to children and young people nor to different groups of young people. Young carers, for example, are a hidden population and their circumstances are relatively unknown, not least in terms of their social networks and access to social capital within the confines of their caring role. This article draws on a research study of 20 young carers in Scotland to explore the views and experiences of this particular group about their social networks and experiences of relationships with others, such as the family, friends and teachers. It concludes that young carers tend to keep their friends, family, and community networks separate from each other, and coupled with their perceived resilience and desire for self-sufficiency, this separation and protection of their individual social networks may result in reduced access to social capital in terms of getting on rather than getting by.

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