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Article
Publication date: 19 June 2023

Efpraxia D. Zamani, Laura Sbaffi and Khumbo Kalua

The aim of this study was to address the unmet information needs of Malawian informal carers. We report on a three-year project which we co-created with informal carers, medical…

Abstract

Purpose

The aim of this study was to address the unmet information needs of Malawian informal carers. We report on a three-year project which we co-created with informal carers, medical doctors and NGOs with the view to disseminate health advisory messages.

Design/methodology/approach

This study was developed on the principles of co-production. The impact of our health advisory messaging approach was assessed through observations and questionnaire-based surveys for quality, clarity and usefulness.

Findings

The messages were disseminated beyond the local support groups and reached a much wider community via word of mouth. The messages also led to short and medium term benefits for informal carers and their loved ones.

Originality/value

Our findings highlight the importance of understanding the contextual conditions of informal caring and that of co-producing interventions with the people these aim to benefit.

Details

Journal of Documentation, vol. 80 no. 1
Type: Research Article
ISSN: 0022-0418

Keywords

Article
Publication date: 17 December 2019

Jennifer Clegg and Sarah Craven-Staines

The purpose of this paper is to further understand the needs of carers when a relative with dementia is admitted to an organic impatient ward.

Abstract

Purpose

The purpose of this paper is to further understand the needs of carers when a relative with dementia is admitted to an organic impatient ward.

Design/methodology/approach

A constructivist grounded theory approach was employed to generate a substantive theory to understand the needs of carers and how staff perceive carer needs when a relative is admitted to a dementia ward. Five relatives and six members of staff were interviewed using purposive and theoretical sampling. Interview transcripts were analysed using initial, focused and theoretical coding using constant comparative methods to develop the end theory.

Findings

The grounded theory concluded that carers have three categories of needs: “The Safe and Cared for Relative”, “The Informed Carer and “The Understanding, Responsive and Available Service”. Underpinning the needs are the relationships between carers, their relative and staff. Three barriers were identified which can impact on these needs being effectively met. These identified barriers were: Loss, Time and Ineffective Communication.

Originality/value

The grounded theory demonstrates that carers needs fundamentally relate to their relatives being safe and cared for and being included and informed during the admission. Relationships can be ruptured when a barrier prevents the needs from being effectively met. Recommendations are made to aim to reduce the impact of the barriers and to aid staff in developing their understanding of the carer experience.

Details

Quality in Ageing and Older Adults, vol. 21 no. 1
Type: Research Article
ISSN: 1471-7794

Keywords

Article
Publication date: 21 June 2022

Sarah Hargreaves, Laura Sbaffi and Nigel Ford

This paper both supports previous findings relating to, and presents new insights into: the information needs and the information seeking processes of a sample of informal…

Abstract

Purpose

This paper both supports previous findings relating to, and presents new insights into: the information needs and the information seeking processes of a sample of informal caregivers of people with dementia (in relation to their own needs and the interrelated needs of the people they are caring for); the extent to which such information needs are and are not being met; and the factors facilitating and hindering access to the right information.

Design/methodology/approach

The study adopted a qualitative approach in the form of a thematic analysis of in-depth, semi-structured interviews with a sample of 20 informal caregivers from a range of different age groups, genders and caring roles.

Findings

Thematic analysis identified significant informational challenges, with a common perception that information seeking was onerous, requiring a proactive approach. Further challenges arose from a perceived lack of focus on carer needs coming up against the boundaries of professional knowledge and inconsistent information provision across the sample. Distance carers faced specific issues. A second theme of negative impacts described burdens arising from: difficulties in accessing information from a complex array of support services closure or change in services and unfulfilled information needs. Participants employed strategies to enable access to information, for example, being open about their caring role; and building formal or informal support networks. It is important to address emotional as well as cognitive dimensions of information needs.

Practical implications

This research highlights a need for health and social care, practice and policy to acknowledge and address information needs of this diverse population and build resilience. Above all, information seeking and sharing must be understood within the context of the emotional impact of caring, and recognition of these twin needs is crucial.

Originality/value

Whilst previous research has focussed on identifying specific needs and knowledge acquisition at cross-sections, a more holistic understanding of experiences is underexplored. This approach is needed to take into account broader contexts, diversity of experiences and different caring roles, e.g. primary and secondary carers, and in situ and distance carers.

Details

Journal of Documentation, vol. 79 no. 2
Type: Research Article
ISSN: 0022-0418

Keywords

Article
Publication date: 2 January 2024

Karine Gaudreault, Joël Tremblay and Karine Bertrand

Those who care for people with schizophrenia and substance use disorders (PLS-SUD) are faced with the complex demands of a long journey to recovery. For the carers, this…

Abstract

Purpose

Those who care for people with schizophrenia and substance use disorders (PLS-SUD) are faced with the complex demands of a long journey to recovery. For the carers, this translates into specific needs related to various areas of their lives. However, few studies have contributed to the understanding of these carersneeds. The purpose of this qualitative evaluative study is to identify, understand and prioritize the needs of PLS-SUD carers in the context of intervention design from the viewpoint of carers themselves (n = 9), those they were accompanying (n = 5) and other key actors involved (n = 10).

Design/methodology/approach

A design of action research was employed. Data analysis was done in three phases: concept map analysis, thematic analysis and transversal analysis of the results from two focus groups, 28 interview transcriptions and a logbook.

Findings

Over 60 needs were identified. After review, 39 of those were selected for prioritization. For needs related to the carers’ role as clients of the health-care system, the committee prioritized the needs for support, sharing with other carers and improving their own well-being. For the role of supporter, knowledge about substance use disorders and their interactions with psychotic disorders as well as skills such as communication and problem resolution were considered priorities. Needs to be prioritized relating to the role of partner were fewer.

Research limitations/implications

The results of this study highlight the diversity and complexity of the needs experienced by carers.

Originality/value

This is among the first needs surveys carried out by stakeholders to describe the needs of PLS-SUD carers.

Details

Advances in Dual Diagnosis, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 1757-0972

Keywords

Article
Publication date: 1 December 2008

John Devapriam, Catherine Thorp, Freya Tyrer, Satheesh Gangadharan, Lammata Raju and Sabyasachi Bhaumik

People with learning disabilities have high dependency needs and high prevalence of physical, psychological and social morbidities. Some studies have shown that South Asian and…

Abstract

People with learning disabilities have high dependency needs and high prevalence of physical, psychological and social morbidities. Some studies have shown that South Asian and white populations have a similar prevalence of learning disabilities and related psychological morbidity (McGrother et al, 2002), although other studies have shown an increased prevalence of severe levels of learning disabilities in the South Asian population (Emerson et al, 1997). The aim of this study was to compare stress levels and unmet service needs in informal carers of South Asian and white adults with learning disabilities.A sample of 742 informal carers was selected from the Leicestershire Learning Disability Register. Data on carers' and subjects' demographic details, stress levels and unmet service needs were analysed and compared using chi‐square tests and logistic regression analyses. Substantial differences were observed between the two groups. Carers of South Asian adults with learning disabilities reported significantly higher levels of care provision and unmet needs. Major stress was reported in 23% of carers. This was more common in carers with poor health, in those caring for younger adults, carers of adults with psychological symptoms, and in those with an expressed need for moral support or respite care.Stress is common among informal carers of adults with learning disabilities and inequalities, in reported care given and unmet needs, exist between carers of South Asian and white adults. Practitioners need to be aware of factors associated with stress when assessing carers in this population.

Details

Ethnicity and Inequalities in Health and Social Care, vol. 1 no. 2
Type: Research Article
ISSN: 1757-0980

Keywords

Article
Publication date: 29 August 2019

Aoife Mahon, Elizabeth Tilley, Gurch Randhawa, Yannis Pappas and Jitka Vseteckova

Individuals with intellectual disability(ies) are living longer contributing to an overall increase in the average age of caregivers. The purpose of this paper is to review the…

Abstract

Purpose

Individuals with intellectual disability(ies) are living longer contributing to an overall increase in the average age of caregivers. The purpose of this paper is to review the literature on the physical, social and psychological needs of ageing carers of individuals with intellectual disability(ies) in the UK.

Design/methodology/approach

A scoping review framework was used to identify literature from eleven databases, the grey literature and the references lists of relevant studies. Only primary research studies that discussed the needs of non-professional carers, aged 65+ years old, of individuals with intellectual disability(ies) in the UK were included. No date restrictions were applied. Thematic analysis was used to narratively synthesise findings.

Findings

Six studies were included. Five key themes were identified: Living with fear, lack of information, rebuilding trust, proactive professional involvement and being ignored. Housing and support information is not communicated well to carers. Professionals require more training on carer needs and trust must be rebuilt between carers and professionals. Proactive approaches would help identify carer needs, reduce marginalisation, help carers feel heard and reduce the risk of care crisis. Greater recognition of mutual caring relationships is needed.

Originality/value

This review highlighted the needs of older caregivers for individuals with intellectual disability(ies) as well as the need for more high-quality research in this field. The information presented in this review may be considered by primary care providers and funding bodies when planning future support for this growing population of carers.

Details

Quality in Ageing and Older Adults, vol. 20 no. 4
Type: Research Article
ISSN: 1471-7794

Keywords

Article
Publication date: 6 May 2014

Fiona Carmichael and Marco G. Ercolani

Older people are often perceived to be a drain on health care resources. This ignores their caring contribution to the health care sector. The purpose of this paper is to address…

Abstract

Purpose

Older people are often perceived to be a drain on health care resources. This ignores their caring contribution to the health care sector. The purpose of this paper is to address this imbalance and highlight the role of older people as carers.

Design/methodology/approach

The study uses a unique data set supplied by a charity. It covers 1,985 caregivers, their characteristics, type and amount of care provided and the characteristics and needs of those cared-for. Binary and ordered logistic regression is used to examine determinates of the supply of care. Fairlie-Oaxaca-Blinder decompositions are used to disentangle the extent to which differences in the supply of care by age are due to observable endowment effects or coefficient effects. Nationally representative British Household Panel Survey data provide contextualization.

Findings

Older caregivers are more intensive carers, caring for longer hours, providing more co-residential and personal care. They are therefore more likely to be in greater need of assistance. The decompositions show that their more intensive caring contribution is partly explained by the largely exogenous characteristics and needs of the people they care for.

Research limitations/implications

The data are regional and constrained by the supplier's design.

Social implications

Older carers make a significant contribution to health care provision. Their allocation of time to caregiving is not a free choice, it is constrained by the needs of those cared-for.

Originality/value

If the burden of care and caring contribution are measured by hours supplied and provision of intimate personal care, then a case is made that older carers experience the greatest burden and contribute the most to the community.

Details

International Journal of Social Economics, vol. 41 no. 5
Type: Research Article
ISSN: 0306-8293

Keywords

Article
Publication date: 1 June 2004

Diane Seddon, Catherine Robinson, Shirley Bowen and Mari Boyle

This paper presents some of the key findings from a study about supporting carers in employment. It describes the qualitative experiences of family carers for older people who are…

Abstract

This paper presents some of the key findings from a study about supporting carers in employment. It describes the qualitative experiences of family carers for older people who are in paid employment, paying particular attention to their views on assessment and service provision. The perspectives of other key stakeholders, including staff from statutory and independent sector agencies, are also considered. Support for carers in employment is one of the five priority action areas underpinning the National Strategy for Carers (DoH, 1999). However, the findings from this study reveal that carers in employment have a limited profile at strategic level and their specific needs are rarely addressed in mainstream health and social care planning processes. The findings also suggest that assessment and care management practices are failing to support carers in relation to their employment aspirations. The effectiveness of health and social care assessments in identifying and exploring the needs of carers in employment is limited and very few separate carer assessments are completed. Carers' first‐hand experiences of service provision are described. Deficits in current services are identified and examples of good practice are highlighted. The paper concludes by outlining the implications for policy and practice. It is suggested that flexible support, underpinned by partnerships between employers and staff from statutory and independent sector agencies, is the key to supporting carers in employment.

Details

Quality in Ageing and Older Adults, vol. 5 no. 1
Type: Research Article
ISSN: 1471-7794

Keywords

Abstract

Details

Take Care
Type: Book
ISBN: 978-1-78714-292-3

Abstract

Details

Family Carers and Caring
Type: Book
ISBN: 978-1-80043-346-5

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