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‘You can’t just put somebody in a situation with no armour’. An ethnographic exploration of the training and support needs of homecare workers caring for people living with dementia
- Authors:
- LEVERTON Monica, et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 20(8), 2021, pp.2982-3005.
- Publisher:
- Sage
Background: Homecare workers carry out complex work with people living with dementia, while under-supported, undervalued and undertrained. This ethnographic study, explores the skills, training and support needs of homecare workers supporting people living with dementia. Research Design and Methods: the researchers conducted 82 interviews with people living with dementia (n = 11), family caregivers (n = 22), homecare staff (n = 30) and health and social care professionals (n = 19) and conducted 100-hours of participant observations with homecare workers (n = 16). The researchers triangulated interview and observational findings and analysed data thematically. Results: the researchers developed four themes: 1) ‘Navigating the homecare identity and role’: describing challenges of moving between different role identities and managing associated expectations, 2) ‘Developing and utilising relational and emotional skills’: boundaries between caring and getting emotionally involved felt blurred and difficult to manage, 3) ‘Managing clients who resist care’: homecare workers experienced clients’ reactions as challenging and felt “thrown to the wolves” without sufficient training, and 4) ‘Drawing on agency and team support’: homecare work could be isolating, with no shared workplace, busy schedules and limited opportunity for peer support. Discussion and Implications: It is important that training and support for homecare workers addresses the relational, emotional and rights-based aspects of the role. Where a flexible, responsive, person-centred service is required, corresponding training and support is needed, alongside organisational practices, taking account of the broader context of the homecare sector. (Edited publisher abstract)
Specific support needs and experiences of carers of people with frontotemporal dementia: a systematic review
- Authors:
- TOOKEY Sara A, et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 20(8), 2021, pp.3032-3054.
- Publisher:
- Sage
Introduction: Frontotemporal dementia (FTD) is one of the most common types of dementia in persons younger than 65 years of age. Diagnosis is often delayed due to slow, gradual decline and misinterpretation of ‘non-typical’ dementia symptoms. Informal carers of people with FTD experience greater levels of overall burden than carers of people with other forms of dementia. The aim of this systematic review was to describe the subjective experience of being an informal carer of a person with FTD and to identify the specific needs, coping strategies and helpful support resources of this carer population. Methods: Four electronic databases were used to search for published literature presenting experiences of carers of people with FTD between January 2003 and July 2019. Search strategy followed PRISMA guidelines. Findings were analysed using framework analysis, employing five stages of analysis to develop a coding index and thematic framework that included key aspects of the carer experience, which were grouped into themes and presented in a narrative format. Results: 1213 articles were identified in total. Twelve studies were included in the final synthesis of the review. Six themes were identified: ‘Challenging road to and receipt of diagnosis’, ‘relationship change and loss’, ‘challenging experiences in caring’, ‘positive experiences and resilience’, ‘coping’ and ‘support needs’. Discussion: Findings highlight an increased need for carers of people with FTD to receive support during the pre-diagnostic stage, including support to manage symptoms. Further research should explore relationship changes and loss amongst carers to inform approaches for carer support. In conclusion, the lack of knowledge and unique needs of carers highlight the importance of public awareness campaigns and healthcare professional education to support carers with FTD symptom impact. (Edited publisher abstract)
The ‘tipping point’: exploring the factors associated with entry into residential care for people with dementia in Western Australia
- Authors:
- McGRATH Thomas, BLUNDELL Barbara, MORRISBY Claire
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 20(7), 2021, pp.2494-2508.
- Publisher:
- Sage
Background: People with dementia usually prefer to live in the community. Research is needed to identify the ‘tipping point’ for residential care entry and to highlight how people with dementia can be supported to remain at home as long as possible. Few previous studies have examined caregivers’ perceptions and explanations for the reasons people with dementia need to enter residential care in Australia. Aim: To explore the factors contributing to people with dementia entering residential care in Perth, Western Australia, from the perspectives of informal carers and care staff. Method: This phenomenological study used purposive sampling to recruit informal and formal caregivers of people with dementia. Semi-structured in-depth interviews were conducted with 13 family carers and 11 home care staff. Data were thematically analysed to identify individual, carer and contextual factors that impact on residential care entry. Findings: The majority of participants identified a combination of factors as the ‘tipping point’ to residential care entry; a few also identified the cause as a sudden event or specific issue. Factors identified included deterioration related to worsening cognition, changed behaviours and a decline in the performance of activities of daily living; co-occurring health conditions; safety concerns; carer no longer able to meet care needs; impact of providing support becoming too much for the informal carer; lack of family or social support and needing assistance from services that were unavailable or inaccessible. Factors assisting people with dementia to remain living at home longer were family and social support, formal services and dog ownership. Conclusion: This study identified individual, carer and contextual factors that contribute to people with dementia entering residential care in Australia. The ‘tipping point’ was recognised as when the needs of a person with dementia outweigh the capacity of their informal and formal carers, services and supports to care for them. (Edited publisher abstract)
Unaccompanied minors’ needs and the child welfare response
- Authors:
- SANFELICI Mara, WELLMAN Barry, MORDEGLIA Silvana
- Journal article citation:
- Journal of Social Work, 21(6), 2021, pp.1533-1552.
- Publisher:
- Sage
Summary: This study examines a sample of 1705 cases of unaccompanied and separated children (UASCs) included in a pilot project for early recovery child protection intervention. The project was started in two Southern Italian regions; multidisciplinary teams ensured an immediate intervention at the moment of disembarkation, working on children engagement and need assessment. Data were gathered about minors’ characteristics and services activated. Descriptive information was selected to develop a profile of cases and bivariate analysis was used to assess the relationship between case characteristics and outcomes. Findings: The UASCs belong to 38 different nationalities, forming a very diverse group in terms of culture, reasons for leaving their country and past experiences, most of them traumatic. A high number of children were victims of torture, maltreatment, and human trafficking. The empirical evidence highlights that, at the end of the intervention, the majority of UASCs were still hosted in first-level facilities that could respond to basic needs only. Second-level centres were not always equipped to promote their integration process. Applications: Findings suggest that even if an early child protection intervention to identify children’s strengths and vulnerabilities was crucial for the children engagement, a parallel action for advocacy at national and European level needs to be carried out to raise awareness about human rights violations, the complexity of these minors’ needs, and the necessity to promote adequate services in the reception system, giving voice to these children. (Edited publisher abstract)
Support needs of parents with intellectual disabilities: systematic review on the perceptions of parents and professionals
- Authors:
- KOOLEN Joyce, et al
- Journal article citation:
- Journal of Intellectual Disabilities, 24(4), 2020, pp.559-583.
- Publisher:
- Sage
- Place of publication:
- London
This review aimed to examine the perceptions of parents, professionals and informal network members regarding support needs of parents with intellectual disabilities (ID). In accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement, five databases were systematically searched and 19 qualitative studies were reviewed using thematic analyses. No data were available on the perceptions of the informal social network. Data on parents and professionals were categorized in four themes (type of support, sources of support, conditions of successful support and characteristics of support members). Data from professionals did not refer to emotional support needs or to the potential support of volunteers, friends and neighbours. Data from parents indicated a preference to be treated as ‘full’ parents, whereas professionals tended to focus on disabilities of parents. Results and implications contribute to insights into support needs of parents with ID from different perspectives and may help identify new entry points to improve future interventions and working alliances. (Edited publisher abstract)
Complex ‘everyday’ lives meet multiple networks: the social and educational lives of young children in foster care and their foster carers
- Authors:
- MEETOO Veena, et al
- Journal article citation:
- Adoption and Fostering, 44(1), 2020, pp.37-55.
- Publisher:
- Sage
The everyday lives of young fostered children are rarely studied. Using an ethnographic approach including interviews, walks, observation and photomap making, this article reports on the findings from a unique pilot study of the social and educational lives of young foster children (aged 0‒4) in an inner London borough. The following findings are presented: (1) what foster carers do: everyday lives and education; (2) foster carers’ meanings and perspectives on early education; and (3) foster carers as ‘everyday experts’ in meeting complex needs. The findings demonstrate how foster carers fulfil multifaceted roles as they navigate complex everyday life with their young children. Ways in which foster carers may provide a ‘stimulating’ environment and the barriers and difficulties they encounter are discussed. (Edited publisher abstract)
Women ageing solo in Ireland: an exploratory study of women’s perspectives on relationship status and future care needs
- Authors:
- REILLY Eileen, HAFFORD-LETCHFIELD Trish, LAMBERT Nicky
- Journal article citation:
- Qualitative Social Work, 19(1), 2020, pp.75-92.
- Publisher:
- Sage
This study explores the impact of relationship status for women in Ireland who are ageing ‘solo’ and their perspectives on relationship status and their future care needs. Solo women were defined as those over 55 years who identify with long-term, non-partnered relationship status and have not had children. In-depth qualitative interviews with 10 women were used to gather data on how participants responded to their solo status. Voice-relational method was used to analyse the data and the researchers report on three themes relating to social work. Firstly, participants experienced social stigma related to their status as solo women; secondly, their resistance and resilience in response and thirdly, the anticipated challenges and experiences of solo ageing in relation to meeting their care and support needs. Whilst conducted in Ireland, further research in this area is important to identify how social policy is inclusive for marginalised populations in ageing in similar contexts. The findings suggest the need for increased professional awareness of women ageing solo when undertaking assessment and designing women’s person-centred support. (Edited publisher abstract)
CARE: The development of an intervention for kinship carers with teenage children
- Authors:
- HARTLEY Jane EK, et al
- Journal article citation:
- Qualitative Social Work, 18(6), 2019, p.926–943.
- Publisher:
- Sage
The study addresses the needs of Scottish kinship carers of teenage children who have been identified as being in need of extra support. It designs and tests an appropriate support programme, defined as CARE. The CARE intervention study reported here applied the Six Steps for Quality Intervention Development framework, a pragmatic, evidence-based framework. The Six Steps for Quality Intervention Development framework comprises six steps: the first three steps seek to reveal the concerns of the kinship carer group and to generate a theory of change; the remaining three steps generate a theory of action for the intervention, and subsequently for its implementation. There were three main benefits reported: first, the self-care techniques had a reportedly positive stress-reduction effect on kinship carers, and in their dealings with their teenager; second, kinship carers reported an increased self-awareness of their communication or 'connectedness' with their teenager; and third, there was a reported positive impact upon behaviour control as a result of the stress-reduction and improved connectedness. The development of the CARE intervention programme suggests that the Six Steps in Quality Intervention Development provides a useful methodological underpinning for intervention procedures which can be applied in a range of public health and social work settings. (Publisher abstract)
The continuity of social care when moving across regional boundaries
- Authors:
- MARSLAND Dave, WHITE Caroline, MANTHORPE Jill
- Journal article citation:
- Journal of Social Work, 19(5), 2019, pp.557-577.
- Publisher:
- Sage
Summary: This paper reports the experiences of adults in receipt of social care when relocating to new local authorities, and of family carers. While many matters need to be considered when moving, the study focused specifically on the ‘portability’ of social care. The study draws on data from semi-structured interviews conducted between July and November 2013 with 12 adults who had relocated between English local authorities. Data were collected prior to the implementation of the Care Act 2014; the potential impact of the Act in respect of relocation is considered. Findings: Although some positive experiences were identified, participants primarily reported challenges when moving with social care support. Five themes were identified, these related to the amount of organisation, planning and activity required; the need for a timely approach and the risk of delays and interruptions to care delivery; differences between the practices of local authorities; a lack of control and involvement; a negative impact on emotional and physical well-being. As a result of such difficulties, some experienced delays or interruptions to their care and support; lost all or some of their care package; experienced stress, anxiety and worry. Applications: The paper documents the experiences of people relocating with social care support, which have been little explored to date within the UK or internationally, and contributes to the evidence base in respect of relocation and portability of care. It highlights the importance of smooth transitions for those relocating between local authorities, and the potential for social workers to assist by addressing potential problems. (Edited publisher abstract)
The promises and pitfalls of engaging male juvenile offenders in gender violence prevention and bystander education
- Authors:
- OPSAL Tara, AGUILAR Jade, BRIGGS Steven
- Journal article citation:
- Journal of Interpersonal Violence, 34(21-22), 2019, pp.4384-4403.
- Publisher:
- Sage
Drawing on interviews with and observations of boys enrolled in a bystander violence prevention program at a juvenile detention centre, this article provides a sociological case study on how the boys’ biographies and violent lived experiences shaped their engagement with the program. Previous research on bystander prevention programs has typically focused on men enrolled in college who do not have the same kinds of violent histories as the boys in this study do. This article builds upon prior research on prevention programs by demonstrating how at-risk youth participants understand and access the program. This paper offers suggestions for tailoring bystander prevention programs to more adequately address the specific needs of these populations. (Edited publisher abstract)