A People's History of Coatbridge

Reminiscence pamphle

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

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

Young peoples’ reflections on what teachers think about family obligations that conflict with school: A focus on the non-normative roles of young caring and language brokering

In “Western” contexts school attendance is central for an ‘ideal’ childhood. However, many young people engage with home roles that conflict with school expectations. This paper explores perceptions of that process in relation two home activities - language brokering and young caring. We interviewed 46 young people and asked them to reflect on what the teacher would think when a child had to miss school to help a family member. This paper discusses the young people’s overall need to keep their out-of-school lives private from their teachers

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

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 caregiving, 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

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

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(c) 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

What would most help improve the quality of life of older family carers of people with dementia? A qualitative study of carers’ views

Older family carers of people with dementia provide a substantial amount of care for people with dementia in the UK. Caregiving can be stressful and burdensome for these individuals, who are also experiencing psychological and physical changes resulting from their own ageing process. However, little is known about what impacts their quality of life, how this can be improved and what we should prioritise. This brief report asks one simple question to older family carers of people living with dementia – “What would most help improve your quality of life as a carer?” Qualitative data was collected from 150 carers who completed an anonymous paper survey during the development and validation of a quality of life tool for use with this population (DQoL-OC). Participants were individuals aged 60 and over and were providing care for a family member with dementia at home in the UK. Carers were recruited from a variety of voluntary organizations, community-based carers’ groups, health services and via online forums. A thematic approach was used to analyse the carers’ comments and three main overarching themes were identified. The quality of life of older family carers can be enhanced by having more time away from caregiving, accessing health and social services that are dementia friendly and by having economic support. Future care, policies and research should aim to address these key areas in order to promote better quality of life for older carers of people with dementia. Further implications for practice, policy and research are discussed

The experience of being a father of a son or daughter with an intellectual disability: older fathers’ perspectives

Background: As life expectancy for people with an intellectual disability increases, there is a growing cohort of older father carers. This study aimed to gain a more in‐depth understanding of older father carers’ experiences of parenting. Methods: Semi‐structured interviews were conducted with 7 older fathers (M = 63.9 years) and analysed using constructivist grounded theory. Results: Three conceptual categories were identified. “Wearing different hats: how fathers’ sense of identity had altered over the years. “Family comes first”: importance placed on the family unit. “Getting on in years”: the challenges faced by ageing fathers parenting their son/daughter. Conclusions: Fathers re‐evaluated their priorities and found a new identity in their parenting role, although they continued to see themselves as secondary carers. Fathers worried about the future as their health declined but drew strength from the benefits they had derived and the challenges that they had overcome to do their best for their son/daughter and their family

Assessing satisfaction with social care services among black and minority ethnic and white British carers of stroke survivors in England.

Overall satisfaction levels with social care are usually high but lower levels have been reported among black and minority ethnic (BME) service users in England. Reasons for this are poorly understood. This qualitative study therefore explored satisfaction with services among informal carer participants from five different ethnic groups. Fifty-seven carers (black Caribbean, black African, Asian Indian, Asian Pakistani and white British) were recruited from voluntary sector organisations and a local hospital in England, and took part in semi-structured interviews using cognitive interviewing and the critical incident technique. Interviews took place from summer 2013 to spring 2014. Thematic analysis of the interviews showed that participants often struggled to identify specific 'incidents', especially satisfactory ones. When describing satisfactory services, participants talked mostly about specific individuals and relationships. Unsatisfactory experiences centred on services overall. When rating services using cognitive interviewing, explicit comparisons with expectations or experiences with other services were common. Highest satisfaction ratings tended to be justified by positive personal characteristics among practitioners, trust and relationships. Lower level ratings were mostly explained by inconsistency in services, insufficient or poor care. Lowest level ratings were rare. Overall, few differences between ethnic groups were identified, although white British participants rated services higher overall giving more top ratings. White British participants also frequently took a more overall view of services, highlighting some concerns but still giving top ratings, while South Asian carers in particular focused on negative aspects of services. Together these methods provide insight into what participants mean by satisfactory and unsatisfactory services. Cognitive interviewing was more challenging for some BME participants, possibly a reflection of the meaningfulness of the concept of service satisfaction to them. Future research should include comparisons between BME and white participants' understanding of the most positive parts of satisfaction scales and should focus on dissatisfied participants

The development and validation of the Dementia Quality of Life Scale for Older Family Carers (DQoL-OC)

Purpose: Little is known about how caregiving affects the quality of life (QoL) of older family carers and no dementia and age-specific QoL scale is available for use with this population. This study aimed to develop and validate a unique dementia caregiving- and age-specific tool – the ‘Dementia Quality of Life Scale for Older Family Carers’ (DQoL-OC). Methods: The scale items were identified in focus groups with older family carers in the UK. Content and face validity were evaluated by a panel of six experts. A set of 100 items assessed on a 5-point Likert scale was tested with 182 older family carers. Test–re-test reliability was conducted with 18 individuals. Exploratory factor analysis was used to identify the QoL model and reduce the number of scale items. Convergent construct validity and internal consistency were also established. Results: A one-factor solution containing 22 items was obtained. Test–re-test reliability (lower bound r = 0.835; p < 0.001), internal consistency (Cronbach's α = 0.936), and convergent construct validity were established. Significantly lower levels of QoL were found in female older carers; those who perceived their relatives with dementia as being at the earlier stages of the disease and with unstable dementia symptoms; those providing care more hours per day and more days per week; and those in younger-old age. Conclusions: The DQoL-OC is a valid and reliable scale that will be useful for research and in clinical practice with older family carers of people with dementia. These study results will inform future health and social care aiming to improve life quality for this overlooked population of carers