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Micklewright, Kerry, and Morag Farquhar. "58 Support needs of informal carers of patients with copd and implications for improving carer support." BMJ Supportive & Palliative Care 8, no. 3 (September 2018): 382.2–382. http://dx.doi.org/10.1136/bmjspcare-2018-mariecurie.58.
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IntroductionInformal carers play a key supportive role for patients with chronic obstructive pulmonary disease (COPD) but with considerable impact on their health and wellbeing.1 2 The literature on support needs of these carers has not been fully synthesised and our knowledge of the comprehensiveness of the Carer Support Needs Assessment Tool3 (CSNAT) for carers of patients with COPD is limited.AimTo identify relevant carer support needs from the published literature in order to explore the comprehensiveness of the CSNAT for carers of patients with COPD.MethodsEnglish language studies published between 1997–2017 were identified against predetermined inclusion/exclusion criteria through searches of MEDLINE, CINAHL, EMBASE, CDSR, ASSIA, PsycINFO and Scopus. Further studies were identified through searching reference lists and citations of included papers. Papers were critically appraised and data extracted and synthesised by two reviewers. Identified needs were mapped to CSNAT items.Results24 studies were included in the review. Preliminary results (synthesis ongoing: completes September 2018) indicate that carers have support needs in a range of domains that include physical psychological spiritual and social needs. Early findings suggest additional CSNAT items may be required in order to encompass the full range of needs of this group particularly relating to difficulties within the patient-carer relationship and accessing services.ConclusionBased on preliminary results there is evidence to suggest the need for additional CSNAT items for COPD carers and that these carers would benefit from identification and response to their support needs by healthcare professionals to improve carer support.References. Cruz J, Marques A, Figueiredo D. Impacts of COPD on family carers and supportive interventions: A narrative review.Health and Social Care in the Community2017;25(1):11–25.. Grant M, Cavanagh A, Yorke J. The impact of caring for those with chronic obstructive pulmonary disease (COPD) on carers’ psychological well-being: A narrative review. International Journal of Nursing Studies2012;49:1459–1471.. Ewing G, Grande G. The CSNAT2018. Available at: http://csnat.org/ (Accessed: 29/05/18)
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Diminic, S., E. Hielscher, M. G. Harris, Y. Y. Lee, J. Kealton, and H. A. Whiteford. "A profile of Australian mental health carers, their caring role and service needs: results from the 2012 Survey of Disability, Ageing and Carers." Epidemiology and Psychiatric Sciences 28, no. 6 (August 31, 2018): 670–81. http://dx.doi.org/10.1017/s2045796018000446.
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AbstractAimsPlanning mental health carer services requires information about the number of carers, their characteristics, service use and unmet support needs. Available Australian estimates vary widely due to different definitions of mental illness and the types of carers included. This study aimed to provide a detailed profile of Australian mental health carers using a nationally representative household survey.MethodsThe number of mental health carers, characteristics of carers and their care recipients, caring hours and tasks provided, service use and unmet service needs were derived from the national 2012 Survey of Disability, Ageing and Carers. Co-resident carers of adults with a mental illness were compared with those caring for people with physical health and other cognitive/behavioural conditions (e.g., autism, intellectual disability, dementia) on measures of service use, service needs and aspects of their caring role.ResultsIn 2012, there were 225 421 co-resident carers of adults with mental illness in Australia, representing 1.0% of the population, and an estimated further 103 813 mental health carers not living with their care recipient. The majority of co-resident carers supported one person with mental illness, usually their partner or adult child. Mental health carers were more likely than physical health carers to provide emotional support (68.1%v.19.7% of carers) and less likely to assist with practical tasks (64.1%v.86.6%) and activities of daily living (31.9%v.48.9%). Of co-resident mental health carers, 22.5% or 50 828 people were confirmed primary carers – the person providing the most support to their care recipient. Many primary mental health carers (37.8%) provided more than 40 h of care per week. Only 23.8% of primary mental health carers received government income support for carers and only 34.4% received formal service assistance in their caring role, while 49.0% wanted more support. Significantly more primary mental health than primary physical health carers were dissatisfied with received services (20.0%v.3.2%), and 35.0% did not know what services were available to them.ConclusionsResults reveal a sizable number of mental health carers with unmet needs in the Australian community, particularly with respect to financial assistance and respite care, and that these carers are poorly informed about available supports. The prominence of emotional support and their greater dissatisfaction with services indicate a need to better tailor carer services. If implemented carefully, recent Australian reforms including the Carer Gateway and National Disability Insurance Scheme hold promise for improving mental health carer supports.
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Ewing, Gail, Sarah Croke, Christine Rowland, and Gunn Grande. "14 Enabling tailored and coordinated support for family carers of people with motor neurone disease through adaptation of a carer support needs assessment tool (CSNAT) intervention." BMJ Supportive & Palliative Care 8, no. 3 (September 2018): 365.1–365. http://dx.doi.org/10.1136/bmjspcare-2018-mariecurie.14.
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IntroductionFamily carers provide vital support for people with Motor Neurone Disease (MND) but caregiving can be very physically and mentally demanding. It is therefore crucial to ensure healthcare practitioners (HCPs) can provide timely support to carers fitting their individual needs. Currently there are no UK interventions for this.AimTo adapt an existing carer support needs assessment tool (CSNAT) intervention to support the needs and situation of family carers of people with MND.MethodsStages:Focus groups and interviews with 33 carers (14 bereaved 19 current carers) to capture support needs key points of change during patient’s illness and main support services.Workshops with HCPs (N=17 recruited to date) and carer advisors (N=19) to inform materials and procedures for MND carer assessment and support.ResultsStage 1: Carers’ experience was one of dealing with a devastating diagnosis a constantly changing situation with heavy dependence on them as carers and with little consideration of their separate support needs. Carers’ support needs mainly mapped onto CSNAT domains but MND carers may experience relationship issues warranting further consideration. Stage 2 will integrate HCP and carers’ views on when where how and by whom MND carer assessment and support should best be provided.ConclusionsFindings to be presented from Stages 1 and 2 will provide insights into how MND carers want to be assessed and supported. This will form the basis for an intervention to be tested in a future Stage 3 feasibility study.FunderMarie Curie Research Fund/Motor Neurone Disease Association
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Attiwell, T., and L. Forster. "Carers support." BMJ Supportive & Palliative Care 1, no. 2 (September 1, 2011): 233. http://dx.doi.org/10.1136/bmjspcare-2011-000105.86.
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Swan, Susan, Richard Meade, and Emma Carduff. "10 Timely identification and support for carers of people at the end of life through the adult carer support plan: triangulating three data sources." BMJ Supportive & Palliative Care 8, no. 3 (September 2018): 363.2–363. http://dx.doi.org/10.1136/bmjspcare-2018-mariecurie.10.
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IntroductionThe Carers (Scotland) Act (2016) places a duty on local authorities to prepare an Adult Carer Support Plan (ACSP) and Young Carer Statement for any carer who requests one or is identified as such. From 2019 this will be assisted by a fast track process for carers of people in their last six months of life. Timely identification of unpaid carers assessment and support can; reduce the overwhelming pressure of caregiving increase competence confidence satisfaction and the quality of the care given.AimTo provide evidence on the supportive needs of carers to inform recommendations regarding the timescale for the creation of fast tracked ACSPs under the Carers (Scotland) Act (2016).MethodsThe study triangulated data from a literature review qualitative secondary analysis (n=19 interviews; 3 focus groups) and two primary focus groups with bereaved carers (n=11).ResultsThemes included; barriers to and triggers for identification and needs including physical support psychological support respite information communication co-ordination and competing demands. Additional themes were speed of decline and end of life care.ConclusionHealth and social care professionals need to take a radical reactive move to presume that every patient has a carer and ensure they understand their entitlements. Carer identification is everyone’s responsibility and it should be the ambition of the Carer (Scotland) Act (2016) that this happens early in the illness trajectory. In so doing rapid assessment and support can be initiated to help carers navigate and cope with an uncertain often rapidly deteriorating illness trajectory.Reference. Scottish Government. (2016). 1 Carers (Scotland) Act. Scottish Government. Available at http://www.legislation.gov.uk/asp/2016/9/pdfs/asp_20160009_en.pdf (Accessed: 10 February 2018)
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McConachy, Diana, and Karalyn McDonald. "Issues for Primary, Informal, Home-based Carers of People Living with AIDS." Australian Journal of Primary Health 5, no. 1 (1999): 30. http://dx.doi.org/10.1071/py99004.
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Central to the Australian national strategic response to HIV/AIDS is the need for training and support for volunteer carers of people with HIV/AIDS. However, the role of primary, informal, home-based carers of people with AIDS (PWA) is not clearly defined and the research about carers undertaken in Australia has not specifically looked at this group. The aim of the study described was to examine the experiences of primary, home-based carers of people with AIDS in order to inform policy and program development. Data were collected from 47 carers in New South Wales and Victoria between August and November, 1996. A short self-administered questionnaire collecting demographic information was followed by a longer questionnaire with mostly closed questions on preparation for caregiving, caregiving tasks, symptom management, service use, coping strategies, and impact of caregiving. Open-ended questions were about the provision of emotional support by the carer to the PWA, the carer's health and positive aspects of caregiving. Two key findings emerge from the content and thematic analyses. The first relates to the study respondents, who differ from the national profile of informal carers in two areas, gender and age. The second relates to the diverse nature of the caregiving experience, including the vast array of symptoms and diseases that an AIDS diagnosis can entail, the complexity of the relationship between the carer and care recipient and the experience of multiple caregiving. These findings highlight the difficulty in identifying simple, singular strategies for carer support and information.
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Visa, Bharat, and Carol Harvey. "Mental health carers’ experiences of an Australian Carer Peer Support program: Tailoring supports to carers’ needs." Health & Social Care in the Community 27, no. 3 (December 13, 2018): 729–39. http://dx.doi.org/10.1111/hsc.12689.
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Lara, Arsuffi, and Chemerynska Nataliya. "Families, carers and friends support group in a forensic inpatient mental health service: A new format of carer support." Forensic Update 1, no. 132 (December 2019): 4–10. http://dx.doi.org/10.53841/bpsfu.2019.1.132.4.
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The benefits of involving carers who support those with a severe mental illness have long been recognised in improving patients’ outcomes and reducing the cost of care. Despite various mental health standards requiring services to offer support to carers and involve them in patients’ care and treatment, not much guidance is offered on how this support and involvement can be implemented, especially in forensic inpatient services, where carers are reported to experience elevated stress levels compared to non-forensic carers. This paper outlines a new format for delivering carer-centred, co-produced support groups, based on an integrated approach. In addition, the authors present a focus group evaluation of the family, carers and friends support group for forensic inpatients with severe mental illness.
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Ewing, Gail, and Gunn Grande. "51 How do family carers feature in end of life care policy? scoping review and narrative summary of uk national policy/guidelines on implementing carer assessment and support." BMJ Supportive & Palliative Care 8, no. 3 (September 2018): 379.1–379. http://dx.doi.org/10.1136/bmjspcare-2018-mariecurie.51.
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BackgroundThe ethos of end-of-life-care (EOLC) embraces both carers and patients. For over a decade UK healthcare policy has acknowledged that carers’ needs should be assessed and addressed in EOLC.AimTo review national policy/guidelines on carers and EOLC examine how policy addresses carer assessment/support and its implementation in practice.MethodsScoping review through searches of public body websites (e.g., Department of Health and NICE); provider organisations (e.g., National Council for Palliative Care Hospice UK) and charities (e.g., Carers UK Carers Trust) personal sources (researcher libraries personal contacts serendipitous discovery) ‘snowballing’ and reference checking. Included: publications 2004–2018 national guidance on EOLC delivery or adult carers. Excluded: policy/guidance on children. Policy content mapped to areas key of practice implementation for carers at individual and organisation levels.ResultsContent mapping identified EOLC practice implementation issues for patients rarely for carers. Conversely generic carer strategy/guidance focused on carers with little reference to EOLC. Key findings were:Move from a distinct carer focus (their assessment/support) in early guidance to a joint patient/carer approach with corresponding loss of recognition of carers’ separate situationLimiting carer assessment to statutory social–care assessments which do not address need for healthcare supportLack of detail on structures and processes required for organisational implementation of carer assessment and support.Policy guidance lacks a focus on carers a comprehensive health and social care approach and detail on processes and structures required for implementation of carer assessment and support in practice that hinders improvement of carer support.FunderHospice UK and NIHR CLARHC Greater Manchester
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Bell, Lorraine, Kate Anderson, Afaf Girgis, Samar Aoun, Joan Cunningham, Claire E. Wakefield, Shaouli Shahid, et al. "“We Have to Be Strong Ourselves”: Exploring the Support Needs of Informal Carers of Aboriginal and Torres Strait Islander People with Cancer." International Journal of Environmental Research and Public Health 18, no. 14 (July 7, 2021): 7281. http://dx.doi.org/10.3390/ijerph18147281.
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Informal carers provide an important role in supporting people with cancer. Aboriginal and Torres Strait Islander peoples experience higher cancer mortality than other Australians. To date, very little is known about the support needs of carers of Aboriginal and Torres Strait Islander adults with cancer. This article explored these needs through a qualitative study. Twenty-two semi-structured qualitative interviews and one focus group were conducted with carers of Aboriginal and Torres Strait Islander adults with cancer (n = 12) and Aboriginal and Torres Strait Islander cancer survivors (n = 15) from Queensland, Australia. Half of the carers interviewed were Aboriginal or Torres Strait Islander Australians. Interviews were transcribed, coded and thematically analysed following an interpretive phenomenological approach. Thematic analysis of carer and survivor interviews revealed four key themes relating to carers’ needs: managing multiple responsibilities; maintaining the carer’s own health and wellbeing; accessing practical support and information; and engaging with the health system. Within these overarching themes, multiple needs were identified including specific needs relevant for carers of Aboriginal and Torres Strait Islander peoples, such as advocating for the patient; accessing Indigenous support services and health workers; and ensuring that the cultural needs of the person are recognised and respected. Identifying the needs of informal carers of Aboriginal and Torres Strait Islander cancer patients will enable greater understanding of the support that carers require and inform the development of strategies to meet these areas of need.
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Ewing, Gail, Lynn Austin, Debra Jones, and Gunn Grande. "Who cares for the carers at hospital discharge at the end of life? A qualitative study of current practice in discharge planning and the potential value of using The Carer Support Needs Assessment Tool (CSNAT) Approach." Palliative Medicine 32, no. 5 (February 28, 2018): 939–49. http://dx.doi.org/10.1177/0269216318756259.
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Background: Carer factors prevent patients achieving timely and appropriate hospital discharge. There is a lack of research into interventions to support carers at hospital discharge. Aim: To explore whether and how family carers are currently supported during patient discharge at end of life; to assess perceived benefits, acceptability and feasibility of using The Carer Support Needs Assessment Tool (CSNAT) Approach in the hospital setting to support carers. Design: Qualitative. Setting/participants: Three National Health Service Trusts in England: focus groups with 40 hospital and community-based practitioners and 22 carer interviews about experiences of carer support during hospital discharge and views of The CSNAT Approach. Two workshops brought together 14 practitioners and five carers to discuss implementation issues. Framework analysis was conducted. Results: Current barriers to supporting carers at hospital discharge were an organisational focus on patients’ needs, what practitioners perceived as carers’ often ‘unrealistic expectations’ of end-of-life caregiving at home and lack of awareness of patients’ end-of-life situation. The CSNAT Approach was viewed as enabling carer support and addressing difficulties of discussing the realities of supporting someone at home towards end of life. Implementation in hospital required organisational considerations of practitioner workload and training. To enhance carer support, a two-stage process of assessment and support (hospital with community follow-up) was suggested using the CSNAT as a carer-held record to manage the transition. Conclusion: This study identifies a novel intervention, which expands the focus of discharge planning to include assessment of carers’ support needs at transition, potentially preventing breakdown of care at home and patient readmissions to hospital.
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Teahan, Áine, Patricia Carney, Suzanne Cahill, and Eamon O’Shea. "Establishing priorities for psychosocial supports and services among family carers of people with dementia in Ireland." Dementia 20, no. 6 (January 9, 2021): 2109–32. http://dx.doi.org/10.1177/1471301220984907.
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Introduction Many family carers, particularly those caring for people with dementia, report significant personal and social challenges associated with caring. The aim of this article is to identify the range of challenges experienced by family carers of people with dementia and to ascertain their preferences for various supports and services that address those challenges. Method Three modified nominal group technique (NGT) focus groups were conducted with family carers of people with dementia. The NGT groups were conducted with 17 participants in two stages, focusing separately on personal and social domains. Family carers identified challenges and individually ranked preferences for both existing and new services and supports. Data analysis consisted of qualitative content analysis and summative scoring of individual rankings. Findings Family carers identified the following personal-level challenges: needing a break, social isolation and relationship changes. Family carers’ combined preferences for personal-level supports and services to overcome these challenges were day care, family care support groups, short-term respite, long-break respite and social activities. Social challenges referenced by family carers included finances, rights and entitlements and stigma and awareness. Preferences for supports and services to address these social challenges were non–means-tested carer’s allowance, legal recognition, carer’s support grant, monthly wage and community awareness programmes. Conclusion Participants ranked day care and non–means-tested carer’s allowance as their top priorities under personal and social headings. Increased government investment in these two areas would not only help to maintain family carers’ contributions to community-based care in dementia but would also facilitate social inclusion, social connectedness and economic sustainability.
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Micklewright, Kerry, and Morag Farquhar. "Does the carer support needs assessment tool cover the established support needs of carers of patients with chronic obstructive pulmonary disease? A systematic literature search and narrative review." Palliative Medicine 34, no. 10 (July 16, 2020): 1305–15. http://dx.doi.org/10.1177/0269216320939243.
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Background: Informal carers play a key supportive role for patients with chronic obstructive pulmonary disease. However, caring can have a considerable impact on health and wellbeing. Carers may have unidentified support needs that could be a target for intervention. Literature on the support needs of informal carers has not been fully synthesised, and our knowledge of the comprehensiveness of the Carer Support Needs Assessment Tool for these individuals is limited. Aim: To explore whether the Carer Support Needs Assessment Tool covers the support needs of carers of patients with chronic obstructive pulmonary disease identified in published literature. Design: English language studies were identified against predetermined inclusion/exclusion criteria through database searching. Further studies were identified through searching reference lists and citations of included papers. Papers were critically appraised and data extracted and synthesised by two reviewers. Identified needs were mapped to Carer Support Needs Assessment Tool questions. Data sources: MEDLINE, CINAHL, EMBASE, CDSR, ASSIA, PsycINFO and Scopus databases (Jan 1997–Dec 2017). Results: Twenty-four studies were included. Results suggest that carers have support needs in a range of domains including physical, social, psychological and spiritual. Many of these needs are unmet. Particular areas of concern relate to prolonged social isolation, accessing services, emotional support and information needs. Findings also suggest amendment of the Carer Support Needs Assessment Tool may be required relating to difficulties within relationship management. Conclusion: Evidence suggests that carers of patients with chronic obstructive pulmonary disease would benefit from identification and response to their support needs by healthcare professionals but to enable this, the Carer Support Needs Assessment Tool requires an additional question. Future planned work will explore this with carers of patients with chronic obstructive pulmonary disease.
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Darley, Sarah, Sarah Knowles, Kate Woodward-Nutt, Claire Mitchell, Gunn Grande, Gail Ewing, Sarah Rhodes, Audrey Bowen, and Emma Patchwood. "Challenges implementing a carer support intervention within a national stroke organisation: findings from the process evaluation of the OSCARSS trial." BMJ Open 11, no. 1 (January 2021): e038129. http://dx.doi.org/10.1136/bmjopen-2020-038129.
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Objectives To examine the implementation of an intervention to support informal caregivers and to help understand findings from the Organising Support for Carers of Stroke Survivors (OSCARSS) cluster randomised controlled trial (cRCT). Design Longitudinal process evaluation using mixed methods. Normalisation process theory informed data collection and provided a sensitising framework for analysis. Setting Specialist stroke support services delivered primarily in the homes of informal carers of stroke survivors. Participants OSCARSS cRCT participants including carers, staff, managers and senior leaders. Intervention The Carer Support Needs Assessment Tool for Stroke (CSNAT-Stroke) intervention is a staff-facilitated, carer-led approach to help identify, prioritise and address support needs. Results We conducted qualitative interviews with: OSCARSS cRCT carer participants (11 intervention, 10 control), staff (12 intervention, 8 control) and managers and senior leaders (11); and obtained 140 responses to an online staff survey over three separate time points. Both individual (carer/staff) and organisational factors impacted implementation of the CSNAT-Stroke intervention and how it was received by carers. We identified four themes: staff understanding, carer participation, implementation, and learning and support. Staff valued the idea of a structured approach to supporting carers, but key elements of the intervention were not routinely delivered. Carers did not necessarily identify as ‘carers’, which made it difficult for staff to engage them in the intervention. Despite organisational enthusiasm for OSCARSS, staff in the intervention arm perceived support and training for implementation of CSNAT-Stroke as delivered primarily by the research team, with few opportunities for shared learning across the organisation. Conclusions We identified challenges across carer, staff and organisation levels that help explain the OSCARSS cRCT outcome. Ensuring training is translated into practice and ongoing organisational support would be required for full implementation of this type of intervention, with emphasis on the carer-led aspects, including supporting carer self-identification. Trial registration number NCT58414120.
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van Haeften-van Dijk, A. Marijke, Franka J. M. Meiland, Bart J. J. Hattink, Ton J. E. M. Bakker, and Rose-Marie Dröes. "Community day care with carer support versus usual nursing home-based day care: effects on needs, behavior, mood, and quality of life of people with dementia." International Psychogeriatrics 28, no. 4 (December 7, 2015): 631–45. http://dx.doi.org/10.1017/s1041610215001921.
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ABSTRACTBackground:Several studies have shown that the combined community-based Meeting Centres Support Programme (MCSP) for people with mild to moderate dementia and their carers were more effective in reducing behavior and mood problems of people with dementia than traditional nursing home-based (NH) day care. We therefore investigated in this study whether community-based (CO) psychogeriatric day care for people with mild to severe dementia combined with carer support (in accordance with the MCSP), is more effective than regular NH day care.Methods:A pre-test–post-test control group design was used to compare the effect of CO and NH day care on care needs, behavior and mood problems, and quality of life of people with dementia. 138 dyads of people with mild to severe dementia and family carers participated in the study: 70 from (new and longer existing) CO day cares (experimental group), and 68 from NH day cares (control group). ANCOVAs were performed at post-tests, including baseline data as covariates.Results:After six months, no overall differences on outcome measures were found between CO and NH day cares. However, participants of recently started CO day cares showed fewer neuropsychiatric symptoms, whereas carers in the longer existing CO day cares reported fewer care needs compared to the control group (large effects). Persons with dementia cohabiting with their carer benefitted most from CO day care.Conclusions:This study shows that combined CO day care has promising added value compared to NH day care, especially for participants with dementia cohabiting with their carer.
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Hughes, Rhidian. "Support for carers." British Journal of Healthcare Assistants 3, no. 11 (November 2009): 566. http://dx.doi.org/10.12968/bjha.2009.3.11.45192.
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Ramsay, N. "Carers need support." BMJ 309, no. 6960 (October 15, 1994): 1017–18. http://dx.doi.org/10.1136/bmj.309.6960.1017d.
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ORPIN, PETER, CHRISTINE STIRLING, SHARON HETHERINGTON, and ANDREW ROBINSON. "Rural dementia carers: formal and informal sources of support." Ageing and Society 34, no. 2 (August 15, 2012): 185–208. http://dx.doi.org/10.1017/s0144686x12000827.
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ABSTRACTPrimary carers provide much of the day-to-day care for community-dwelling people living with dementia (PWD). Maintaining that contribution will require a more in-depth understanding of the primary carer role and the support needs that flow from that role. This study explored patterns of formal and informal support utilisation by people caring for a PWD in a rural-regional context. In-depth semi-structured interviews were conducted with 18 rural primary carers of a PWD and thematically analysed. Participant primary carers' almost total commitment to, and absorption in their role and their assumption of ultimate responsibility for the PWD's wellbeing meant that external social context, such as rurality, became less relevant. Carer networks effectively contracted to those key individuals who were central to supporting them in their caring task. External sources of support were tightly managed with strong boundaries around the provision of direct care to the PWD largely excluding all but professional providers. Primary carers are generally categorised along with other family and friends as informal care. However, in assumingprimaryresponsible for the care and wellbeing for the PWD they effectively become the key care provider, suggesting that it would be productive in both research and practice to treat primary carers as key members of a care partnership alongside professional carers, rather than as adjuncts to formal care and/or another client.
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Ewing, Gail, Sarah Croke, Christine Rowland, and Gunn Grande. "Suitability and acceptability of the Carer Support Needs Assessment Tool (CSNAT) for the assessment of carers of people with MND: a qualitative study." BMJ Open 10, no. 12 (December 2020): e039031. http://dx.doi.org/10.1136/bmjopen-2020-039031.
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ObjectivesMotor neurone disease (MND) is a progressive, life-limiting illness. Caregiving impacts greatly on family carers with few supportive interventions for carers. We report Stages 1 and 2 of a study to: (1) explore experiences of MND caregiving and use carer-identified support needs to determine suitability and acceptability of the Carer Support Needs Assessment Tool (CSNAT), (2) adapt the CSNAT as necessary for comprehensive assessment and support of MND carers, prior to (Stage 3) feasibility testing.DesignQualitative: focus groups, interviews and carer workshops.SettingThree UK MND specialist centres serving a wide range of areas.ParticipantsStage 1: 33 carers, 11 from each site: 19 current carers, 14 bereaved. Stage 2: 19 carer advisors: 10 bereaved, 9 current carers. Majority were spouses/partners ranging in age from under 45 years to over 75 years. Duration of caring: 4 months to 12.5 years.ResultsCarers described challenges of a disease that was terminal from the outset, of ‘chasing’ progressive deterioration, trying to balance normality and patient independence against growing dependence, and intensive involvement in caregiving. Carers had extensive support needs which could be mapped to existing CSNAT domains: both ‘enabling’ domains which identify carers’ needs as co-workers as well as carers’ ‘direct’ needs as clients in relation to their own health and well-being. Only one aspect of their caregiving experience went beyond existing domains: a new domain on support needs with relationship changes was identified to tailor the CSNAT better to MND carers.ConclusionsCarers of people with MND found the adapted CSNAT to be an appropriate and relevant tool for assessment of their support needs. The revised version has potential for assessment of carers in other longer-term caring contexts. A further paper will report the Stage 3 study on feasibility of using the adapted CSNAT in routine practice.
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Fitzgerald, Leslie R., Michael Bauer, Susan H. Koch, and Susan J. King. "Hospital discharge: recommendations for performance improvement for family carers of people with dementia." Australian Health Review 35, no. 3 (2011): 364. http://dx.doi.org/10.1071/ah09811.
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Background. It is acknowledge that discharge planning benefits both consumers and hospitals. What is not widely understood is the experience that the family carer of a person with a dementia has and whether the hospitals meet their in-hospital and post-hospital needs. Objective. To explore whether metropolitan and rural hospital discharge practices meet the needs of the family carer of a person with dementia. Results. Although this and other research indicates that a continuum of care model is beneficial to family caregivers, no evidence has been identified that family carers currently experience this type of quality planning. Family carers were often unaware of the existence of a hospital discharge plan and were rarely engaged in communication about the care of their family member with a dementia or prepared for discharge. Conclusion and recommendations. Discharge planning processes for family carers of people with dementia could be substantially improved. It is recommended that hospitals develop policy, process and procedures that take into account the family carer’s needs, develop key performance indicators and adopt best practice standards that direct discharge planning activities and early engagement of the family carer in healthcare decisions. It is recommended that health professionals be educated on communication, consultation and needs of family carers. What is known about the topic? The literature shows discharge planning can increase in patient and caregiver satisfaction, reduce post-discharge anxiety, reduce unplanned readmissions and reduce post-discharge complications and mortality. To be effective, discharge planning requires interdisciplinary collaboration; yet for people with a dementia there are insufficient system processes to support discharge planning, routine breakdowns in communication between patient, family caregivers and health professionals and inadequate admission and aftercare plans. There is little known about the discharge planning as it effects the family carer’s of people with dementia. What does this paper add? This research provides evidence of the family carer’s experience of metropolitan and rural hospital discharge as it relates to planning, preparation and support. It investigates how well the discharge planning process met the needs of the family carer and what improvements are required if hospital discharge planning is to be more effective. The research identifies a range of initiatives that hospital and health professionals can implement to improve current discharge practices for family carers of people with dementia. What are the implications for practitioners? This report makes recommendations for changes to hospital health systems and the discharge practices of health professionals. Hospitals need to develop policy, process and procedure that take into account family carer’s needs, develop key performance indicators that measure discharge planning practices, and adopt best practice activities that include such items as early engagement of the primary carer’s, the identification of a liaison health professional and implementation of a policy that requires family carers to be involved in and notified of an impending discharge. It is recommended that health professionals be educated on the needs of family carers as it relates to communication and consultation. The primary carer is involved in discussions and decisions about in-hospital and post-hospital treatment regimes and is in agreement with, and competent in, post-discharge treatments, therapies and support services.
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Spencer, Sarah, and Deborah Swinglehurst. "Supporting carers." InnovAiT: Education and inspiration for general practice 13, no. 4 (February 3, 2020): 213–17. http://dx.doi.org/10.1177/1755738019898499.
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The number of individuals who provide unpaid care across the UK is rising: it currently stands at approximately 8 800 000 people. Some carers can experience a cycle of financial difficulty, isolation, physical and mental ill health. Recommendations for support of this marginalised group have become enshrined in national health policy and GPs have a pivotal role in delivering this help. Involving carers in management plans and providing appropriate support can improve a carer’s wellbeing, and reduce avoidable hospital admissions and residential placements, thus, enabling people to live independent lives for longer. Every caring circumstance is different. In order to provide appropriate, tailored, timely support there needs to be individual identification, assessment and support of carers.
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O'Donnell, Deirdre. "65 The Health and Well-Being of Family Carers of Older People: An Exploratory Cross-Sectional Analysis." Age and Ageing 48, Supplement_3 (September 2019): iii1—iii16. http://dx.doi.org/10.1093/ageing/afz102.14.
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Abstract Background Family carers are critical to supporting older people to live well in their homes and demand for care at home is projected to increase dramatically into the future.1 The Irish state and health system, therefore, are dependent upon the supply of family care now and into the future. The health and well-being of older family carers, and carers providing care to older people in the community, is under-researched. Methods A combination of online and postal survey distribution achieved a convenience sample (N=1102) of carers from the membership and network reach of Ireland’s largest family carer support and advocacy agency. Results Of those carers providing care to an older adult (n=341), 30% were aged over 64 and 28% reported mild to moderate carer burden. A further 36% reported moderate to severe burden. The average Zarit burden score for carers caring for an older adult was 44 (CI 42:45) and was 39 (CI 36:43) for family carers aged over 64. Among family carers of older adults, 72% reported diagnosis or treatment for physical illness and 42% reported diagnosis or treatment for mental illness. The most frequently cited source of worry for this group was their own health and wellbeing (73%) followed by lack of appropriate supports/services (68%). GPs were the most frequently cited source of support (64%) followed by a PHN (50%). Conclusion The study findings indicate that the lack of appropriate state supports and services for family carers is negatively impacting carer health and well-being. Family carers, including those providing care to older people and those who are themselves aged over 64, need to be consistently identified for intervention by health professionals, particularly GPs and PHNs.
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Graham, Candida R., Sube Banerjee, and Randeep S. Gill. "Using postal questionnaires to identify carer depression prior to initial patient contact." Psychiatric Bulletin 33, no. 5 (May 2009): 169–71. http://dx.doi.org/10.1192/pb.bp.108.020982.
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Aims and MethodTo assess whether postal questionnaires, used as a local initiative, were useful in identifying carer depression allowing early support for community-dwelling carers of older adults with mental health needs. the Geriatric Depression Scale and a questionnaire collecting information on the carer's circumstances were sent to carers of consecutive patients routinely referred to a community mental health team for older adults in south London. Rates of carer depression between postal questionnaire responders and non-responders were compared.ResultsThe response rate to the postal questionnaires (33%) was similar to that observed in other postal studies; 42% of responders had depression compared with only 4.6% of non-responders.Clinical ImplicationsPre-contact postal questionnaires may present a simple method of enhancing early detection of carer depression for minimal economic outlay.
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Cawley, Rosanne, Kathryn Dykes, Gill Drummond, and Ruth Watson. "The carers innovation project: Supporting inpatient dementia caregivers." FPOP Bulletin: Psychology of Older People 1, no. 130 (April 2015): 30–36. http://dx.doi.org/10.53841/bpsfpop.2015.1.130.30.
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The carers innovation project aimed to provide individualised support for inpatient carers to Greater Manchester West Mental Health NHS Foundation Trust’s (GMW) dementia care wards. If a carer ‘opted in’ to this service, they were offered either face-to-face meetings on the ward, home visits or telephone support with an assistant psychologist. Between May 2013 and December 2013 97 carers were referred. Of those carers contacted and offered the service, 78 per cent accepted support. The common areas of support wanted were: (i) psychological and emotional support; (ii) support and information about dementia; (iii) support understanding the hospital assessment; and (iv) support with self-care and future decisions. The project aimed to promote a community within the hospital environment for carers to feel valued and well informed.
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Arber, Sara, G. Nigel Gilbert, and Maria Evandrou. "Gender, Household Composition and Receipt of Domiciliary Services by Elderly Disabled People." Journal of Social Policy 17, no. 2 (April 1988): 153–75. http://dx.doi.org/10.1017/s0047279400016615.
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ABSTRACTUsing data from the 1980 General Household Survey, differences in the provision of statutory domiciliary services to disabled elderly people are explored. Domiciliary services vary in their degree of ‘substitutability’, that is, in the extent to which the care may be performed either by state services or by other members of the elderly person's household. Domestic support services are substitutable by any available carer; personal health and hygiene services are partially substitutable depending on the relationship between the carer and the cared for; and medical services are not substitutable by informal carers. The paper shows that discrimination by statutory services against women carers is dependent primarily on the household composition of the elderly person rather than on gender per se. Taking into account the level of disability of the elderly person, younger ‘single’ women carers receive no less support than ‘single’ men carers, but carers who are married women under 65 obtain the least domestic and personal health care support. Carers who are elderly receive more support than carers under 65. Among disabled elderly people who live alone, men receive somewhat more domestic and personal health services than women.
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Gresswell, I., L. Lally, D. Adamis, and G. M. McCarthy. "Widening the net: exploring social determinants of burden of informal carers." Irish Journal of Psychological Medicine 35, no. 1 (August 23, 2017): 43–51. http://dx.doi.org/10.1017/ipm.2017.36.
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ObjectivesProviding care for a person with dementia or other chronic illness at home often places stress on the primary caregiver. In an Irish population, ~67% of carers reported experiencing extreme physical or mental tiredness. This study aimed to identify factors that influence carer burden and identify the sub-populations of carers who are most susceptible to burden.MethodsConsecutive carers referred to a local carers’ support organisation completed the following measurements: the Neuropsychiatric Inventory, Zarit Burden Interview, Social Network Index, General Health Questionnaire, Short Form Survey, Hamilton Depression Rating Scale, Brown’s Locus of Control scale and provided demographic data on themselves and their patient.ResultsThe sample consisted 53 carers, mean age: 64.5±11.7, of whom 43 (81.1%) were females. A linear regression model found significant independent (p<0.05) factors for carer burden were: increased behavioural problems of the patient, carer characteristics including female gender, younger age, high number of contacts, lower physical functioning and emotional problems, while protective factors were marriage and higher number of embedded networks.ConclusionsThe ability to predict which carers are more susceptible to burden allows service providers to more quickly and accurately identify ‘higher risk’ carers, facilitating routine check-ups by physicians and carer support services.
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Temple, Jeromey B., and Briony Dow. "The unmet support needs of carers of older Australians: prevalence and mental health." International Psychogeriatrics 30, no. 12 (May 25, 2018): 1849–60. http://dx.doi.org/10.1017/s104161021800042x.
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ABSTRACTBackground:Population aging places greater demands on the supply of informal carers. The aims of this study were to examine (1) the types of unmet support needs of carers of older Australians and (2) the association of unmet needs with mental health.Methods:Utilizing new data from the 2015 Australian Bureau of Statistics (ABS) Survey of Disability, Ageing and Carers, we calculated the prevalence of carers experiencing specific and multiple unmet needs for support, using single and multiple item measures. Logistic regression models were fitted to examine the association between unmet needs and psychological distress (using the Kessler psychological distress scale), once demographic and health factors were controlled for.Results:In 2015, 35% of carers of older Australians cited at least one unmet need for support. Among this group, almost two-thirds cited multiple unmet support needs (64.7%). The most prevalent types of unmet needs included financial (18%), physical (13%), and emotional support (12%), as well as additional respite care and support to improve carer health (12%). After controlling for demographic and health characteristics of the carer, having any unmet need for support increased the odds of psychological distress by twofold (OR = 2.20, 95% CI = 1.65, 2.94). With each successive unmet need for support, the odds of psychological distress increased 1.37 times (OR = 1.36, 95% CI = 1.22, 1.54). Those who had received assistance with care, but required further support were 1.95 times more likely (OR = 1.95, 95% CI = 1.17, 3.24) to be in distress and those who had not received care assistance were about 2.4 times more likely (OR = 2.38 95% OR = 1.56, 3.62) to be in distress relative to those with no unmet need.Conclusions:Addressing unmet support needs of carers is important, not only for the planning of services for carers in an aging population, but also because of the association between unmet support needs and carers mental health.
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Gridley, Kate, Fiona Aspinal, Gillian Parker, Helen Weatherly, Rita Faria, Francesco Longo, and Bernard van den Berg. "Specialist nursing support for unpaid carers of people with dementia: a mixed-methods feasibility study." Health Services and Delivery Research 7, no. 12 (March 2019): 1–198. http://dx.doi.org/10.3310/hsdr07120.
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Background Unpaid carers are the mainstay of support for people with dementia. Admiral Nursing (AN) is the only specialist nursing service that specifically focuses on supporting such carers, but evidence of its effectiveness, costs and relationships with other health and social care services is limited. This project aimed to address this gap and explore the feasibility of a full-scale formal evaluation. Objectives To explore the relationships between characteristics of carers and people with dementia, service type and input and outcomes; to develop and test data collection methods for subsequent economic evaluation; to explore the effect of AN on outcomes and costs, compared with usual care; to explore the perceived system-wide impact of specialist support for carers of people with dementia, compared with usual care; and to implement new data collection methods in AN, which could also be used by other services, to facilitate evaluation. Design A mixed-methods study, using secondary analysis of an administrative data set, and primary (cross-sectional) quantitative and qualitative data collection. Setting Qualitative research with carers in four areas of England; a survey of carers in 32 local authority areas (16 with and 16 without AN); and qualitative interviews with professionals in four areas. Participants Thirty-five carers of people with dementia and 20 professionals were interviewed qualitatively; 346 carers completed in-scope questionnaires (46% through AN services and 54% from matched non-AN areas). Interventions Specialist nursing support for carers of people with dementia (with AN as an exemplar) compared with usual care. Main outcome measures The Adult Social Care Outcomes Toolkit for Carers; the EuroQol-5 Dimensions, five-level version; and the Caregiver Self-Efficacy for Managing Dementia Scale. Data sources Dementia UK’s AN administrative data set. Results Admiral Nurses are successfully targeting the most complex cases. They work predominantly with older carers who have the main responsibility for the person with dementia, who are heavily involved in caring activity and who may be at risk. Three outcome areas that are important to carers of people with dementia and are potentially affected by receiving support are (1) carer self-efficacy, (2) carer quality of life (3) and carer mental and physical health. The carers in the survey receiving support from AN were older, were more heavily involved in caring and had poorer outcomes than carers not in receipt of such support. When these differences were controlled for, carers supported by AN had better outcomes, although the differences did not reach statistical significance. Health and social care costs were similar in both groups. The perceived system-wide impact of services, such as AN, is not well understood by professional stakeholders. Limitations Challenges were experienced in identifying similar carers in areas with or without an AN service and in the cross-sectional nature of the work. Conclusions Specialist nursing support to carers of people with dementia may enable them to continue providing care to the end or very close to the end of the dementia journey. The outcomes for such carers may be no different from, or even slightly better than, those of similar carers without this support, although the costs to health and social care services are the same in each case. Future work Future research could investigate the impact of specialist support for carers on admission to long-term care. There is also a need for more work to encourage routine use of the selected outcome measures in dementia service delivery. Funding The National Institute for Health Research Health Services and Delivery Research programme.
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Roy, Dionne, and Mark Gillespie. "Who cares for the carers? A student's experience of providing carer support and education." British Journal of Nursing 20, no. 8 (April 27, 2011): 484–88. http://dx.doi.org/10.12968/bjon.2011.20.8.484.
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Ewing, Gail, and Gunn Grande. "5 What needs to change to better support carers at end of life? a multi-perspective mixed methods study to identify recommendations for change in organisational structures and processes." BMJ Supportive & Palliative Care 8, no. 3 (September 2018): 361.2–362. http://dx.doi.org/10.1136/bmjspcare-2018-mariecurie.5.
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IntroductionCarers play a vital role in supporting patients at end-of-life (EOL). EOL care policy promotes comprehensive person-centred assessment/support for carers but without a clear implementation strategy this will only remain an aspiration.AimTo develop recommendations for organisational structures/processes required for implementation of comprehensive person-centred comprehensive assessment/support for carers in EOL practice.MethodsSecondary analysis of qualitative data on implementation in 36 services to identify factors facilitating/hindering implementationExpert consultation (focus groups with 19 lead practitioners/hospice managers) to review Stage–1 findings and develop draft recommendationsWider stakeholder consultation–two professional workshops (23 participants: hospice hospital community policy and academics) online survey (62 participants) and two carer workshops (nine participants) to finalise recommendations.ResultsComprehensive person-centred carer assessment/support requires whole-systems change; a cultural shift at practitioner and organisational level. 10 recommendations identify key structures and processes not normally met by current provision:Consistent identification of carers within the care settingDemographic and contextual data on who the carer is and their situationA method/protocol for assessing carers and responding to assessmentA recording system for carer information (separate from patient data)A process for training staff about carer assessment/supportAvailable time/workload capacity for carer assessment/supportSupport from senior managersRole models/championsPathways for communication about carer assessment/supportProcedures for monitoring/auditing processes and outcomes of carer assessment/support.ConclusionsComprehensive person-centred carer support requires radical change at different organisational levels. Carers’ fit within service provision also urgently needs clarification. Our 10 recommendations outline necessary building blocks to achieve this change.FunderHospice UK and CLAHRC Greater Manchester
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Perera, Sharnel Miriam, Clare O’Callaghan, Anna Ugalde, Olinda Santin, Cassandra Beer, G. Prue, Katherine Lane, Gerard G. Hanna, and Penelope Schofield. "Codesigning a supportive online resource for Australian cancer carers: a thematic analysis of informal carers’ and healthcare professionals’ perspectives about carers’ responsibilities and content needs." BMJ Open 11, no. 10 (October 2021): e055026. http://dx.doi.org/10.1136/bmjopen-2021-055026.
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ObjectiveTo gather preliminary qualitative data that will assist in the codesign and development of a new informational and supportive website to assist informal cancer carers in Australia.Design and settingUtilising a previously tested codesign process, informal carers’ experiences and perspectives, including those of healthcare professionals’, were examined via focus groups and/or interviews. Data were analysed via thematic analysis.ParticipantsRural (n=9) and urban (n=11) carers’, and healthcare professionals’ (n=8) perspectives were collected. Carers participated in a focus group (n=9) or telephone interview (n=11). Healthcare professionals completed an interview (n=6) or online survey (n=2).ResultsRural and urban carers typically felt ill prepared for their multitudinal caregiving responsibilities. Supporting patient-to-healthcare professional liaisons could especially challenge. Carers’ biopsychosocial and fiscal strains were affected by patients’ hardships and available informal supports. Rural carers described greater social support than urban carers. Both rural and urban carers also described discontentment related to a carer neglecting healthcare system. Both carers and healthcare professionals endorsed the need for a user-friendly, carer-specific website encompassing practical information and resources, peer-driven advice and evidence-based illness information, tailored to the Australian context.ConclusionsCarers and healthcare professionals recognise the pressing need for an Australian, cancer carer-specific online resource. Findings will inform the next phase, where a resource will be designed, developed and tested.
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Spiers, Gemma F., Jennifer Liddle, Tafadzwa Patience Kunonga, Ishbel Orla Whitehead, Fiona Beyer, Daniel Stow, Claire Welsh, Sheena E. Ramsay, Dawn Craig, and Barbara Hanratty. "What are the consequences of caring for older people and what interventions are effective for supporting unpaid carers? A rapid review of systematic reviews." BMJ Open 11, no. 9 (September 2021): e046187. http://dx.doi.org/10.1136/bmjopen-2020-046187.
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ObjectivesTo identify and map evidence about the consequences of unpaid caring for all carers of older people, and effective interventions to support this carer population.DesignA rapid review of systematic reviews, focused on the consequences for carers of unpaid caring for older people, and interventions to support this heterogeneous group of carers. Reviews of carers of all ages were eligible, with any outcome measures relating to carers’ health, and social and financial well-being. Searches were conducted in MEDLINE, PsycInfo and Epistemonikos (January 2000 to January 2020). Records were screened, and included systematic reviews were quality appraised. Summary data were extracted and a narrative synthesis produced.ResultsTwelve systematic reviews reporting evidence about the consequences of caring for carers (n=6) and assessing the effectiveness of carer interventions (n=6) were included. The review evidence typically focused on mental health outcomes, with little information identified about carers’ physical, social and financial well-being. Clear estimates of the prevalence and severity of carer outcomes, and how these differ between carers and non-carers, were absent. A range of interventions were identified, but there was no strong evidence of effectiveness. In some studies, the choice of outcome measure may underestimate the full impact of an intervention.ConclusionsCurrent evidence fails to fully quantify the impacts that caring for older people has on carers’ health and well-being. Information on social patterning of the consequences of caring is absent. Systematic measurement of a broad range of outcomes, with comparison to the general population, is needed to better understand the true consequences of caring. Classification of unpaid caring as a social determinant of health could be an effective lever to bring greater focus and support to this population. Further work is needed to develop and identify suitable interventions in order to support evidence-based policymaking and practice.
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Khan-Shah, Fatima. "Support for unpaid carers: the working carers’ passport." British Journal of Community Nursing 25, no. 3 (March 2, 2020): 144–47. http://dx.doi.org/10.12968/bjcn.2020.25.3.144.
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Julieta, Camino, Khondoker Mizanur, Kishita Naoko, and Mioshi Eneida. "537 - Reported and observed task performance in dementia and the role of the carer management style." International Psychogeriatrics 33, S1 (October 2021): 81. http://dx.doi.org/10.1017/s1041610221002325.
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Background:Consistency between carers’ report of the people with dementia’s (PwD) performance of activities of daily living (ADLs) and observed performance has been an important topic in the literature, but most studies have investigated whether carer’s burden and depression affect this report.Objectives:To (1) investigate if carer’s report of PwD’s performance of ADLs is consistent with PwD’s observed performance; and to (2) evaluate if carer management style has an effect on this discrepancy.Methods:Sixty-four PwD completed a performance-based ADL assessment (Assessment of Motor and Process Skills-AMPS) which entails the observation of ADL performance; their carers were interviewed using an informant-based ADL assessment (DAD), which records ADL performance as reported by the carer. Carers completed a dementia management-style scale (DMSS) that categorises the carer’s style in: criticism, active-management and encouragement. To investigate whether there was consistency between the DAD and the AMPS, a new continuous variable was created: the comparative ADL score. Cohen’s kappa was used to compare agreement/disagreement between the DAD and the AMPS. Multiple regression analysis explored whether carer styles could explain the discrepancy between the reported and observed performance of ADLs.Results:The majority of carers underestimated (71.9%) or overestimated (17.2%) (disagreement) the PwD’s ADL performance; only 10.9% of carers reached an agreement between reported and observed performance. Cohen’s kappa [k= -0.025 (95%CI -0.123 – 0.073)] indicated poor level of agreement between the DAD and the AMPS. Criticism, active-management and encouragement styles were included in the regression model: the comparative ADL score was used as the dependent variable. This combined model explained 18% (R2=0.178,F(3, 59)=4.26,p=<0.01) of the variance of the dependent variable. Active-management (β =0.037, t(62)=3.554, p=0.001) and encouragement (β =-0.024, t(62)=- 2.086, p=0.05) styles were the two factors that made the largest and statistically significant contribution to the model.Conclusions:the disagreement between the reported and the observed performance proved to be high in this group. The styles that carers use when dealing with dementia-related problems affected their report of ADL performance, which means that the strategies applied by carers to support ADL performance can be targeted to reduce the gap between reported and observed performance.
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Larkin, Mary, and Alisoun Milne. "Carers and Empowerment in the UK: A Critical Reflection." Social Policy and Society 13, no. 1 (June 18, 2013): 25–38. http://dx.doi.org/10.1017/s1474746413000262.
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This article provides a critical reflection on carer empowerment in the UK, an issue which has received limited attention in policy and research. The arena is characterised by considerable conceptual confusion around key terminology, carer, care and caring, and by limited understanding of the meaning and outcomes of carer empowerment. Despite increased national acknowledgment of carers, a politically active carers' movement and a number of policies intended to enhance the recognition and rights of carers, many carers remain invisible and receive little support from services, to the detriment of their own health and well-being. Addressing these challenges, alongside developing a robust theoretical foundation for taking the ‘carers' agenda’ forward, is needed if carers are to move towards a more empowered status in the twenty-first century.
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Turley, Natalie, and Helen Sothcott. "Mutual support for carers." Elderly Care 5, no. 6 (November 1993): 28–29. http://dx.doi.org/10.7748/eldc.5.6.28.s31.
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Greenwood, Nan, Ruth Habibi, Ann Mackenzie, Vari Drennan, and Nicky Easton. "Peer Support for Carers." American Journal of Alzheimer's Disease & Other Dementiasr 28, no. 6 (June 30, 2013): 617–26. http://dx.doi.org/10.1177/1533317513494449.
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Payne, Sheila, and Hazel Morbey. "Support for family carers." Nursing Standard 28, no. 26 (February 26, 2014): 57. http://dx.doi.org/10.7748/ns2014.02.28.26.57.s53.
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Jackson, Graham A., and Debbie Browne. "Supporting carers of people with dementia: What is effective?" BJPsych Advances 23, no. 3 (May 2017): 179–86. http://dx.doi.org/10.1192/apt.bp.113.011288.
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Carer stress is well documented, especially in those caring for individuals with dementia. A recommendation of all national dementia strategies is to provide excellent support and information to informal carers of people with dementia. NICE guidance suggests that a range of tailored interventions, including psychological input, psychoeducation and training courses, should be offered to reduce caregiver burden and stress, although good-quality outcome-based evidence is lacking. On the basis of a narrative review of the literature, we describe individual and multicomponent carer support packages and discuss their evidence base, reflecting on outcomes for carers. Multicomponent interventions have the best evidence for effectiveness.Learning Objectives• Consider the risks of both physical and psychological harm experienced by carers of people with dementia (often referred to as carer burden or caregiver burden)• Be aware of the interventions available for the support of carers of people with dementia• Consider the evidence for the effectiveness of these interventions and be aware of the limitations of the evidence
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Marques, Maria J., Bob Woods, Eva Y. L. Tan, Marjolein de Vugt, and Frans Verhey. "325 - Relationship quality in dementia: Preliminary longitudinal analyses of the EU-JPND Actifcare cohort study." International Psychogeriatrics 32, S1 (October 2020): 83. http://dx.doi.org/10.1017/s1041610220002252.
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INTRODUCTIONRelationship quality (RQ) in dyads of persons with dementia and their family carers is important both as a clinical outcome and as a determinant of health and quality of life. In previous work we studied RQ using baseline data of a large-scale European longitudinal study on timely access to and use of community formal services in dementia (EU-JPND Acticare). We concluded that neuropsychiatric symptoms and carer stress contributed to discrepancies in RQ ratings within the dyad, which were less favourable when reported by family carers. This and other associations (e.g. between carer-rated RQ and sense of coherence) were cautiously interpreted, in the context of a cross-sectional analysis.OBJECTIVESTo analyse how carer-reported RQ varies over time and to examine its most important influencing factors.METHODSWe present preliminary longitudinal analyses from the Actifcare cohort study of 451 community-dwelling persons with dementia and their primary carers in eight European countries (12-month follow-up). Comprehensive assessments included the Positive Affect Index (PAI) to assess RQ, persons with dementia’s neuropsychiatric symptoms, persons with dementia and carers’ unmet needs, carers’ anxiety and depression, social support, sense of coherence and stress.RESULTSCarers’ mean PAI scores decreased over the 12 -month period. The person with dementia neuropsychiatric symptoms and unmet needs, and carers’ perceived social support were significant predictors of carers’ RQ change.DISCUSSION AND CONCLUSIONWe analysed carer-reported RQ variation over time and predictors in a large European sample of persons with dementia and their family carers. As expected, RQ decreased over the oneyear follow-up period as the disease progressed. Its main predictors in this sample (neuropsychiatric symptoms and the person’s unmet needs, together with carers’ social support) can all influence the impact that caregiving has on the carer and on how time and energy-consuming caregiving is. The role of increased clinical symptoms (also affecting communication difficulties), together with carers’ exhaustion, must be equated. Overall, these results may help us to tailor interventions addressing RQ and potentially improve dementia outcomes.
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Linacre, Stephen, Suzanne Heywood-Everett, Vishal Sharma, and Andrew J. Hill. "Comparing carer wellbeing: implications for eating disorders." Mental Health Review Journal 20, no. 2 (June 8, 2015): 105–18. http://dx.doi.org/10.1108/mhrj-12-2014-0046.
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Purpose – Around 50 per cent of carers of people with eating disorders (EDs) experience mental health difficulties. The purpose of this paper is to investigate well-being of carers of people with ED and carers of people with severe and enduring eating disorders (SEEDs). Design/methodology/approach – Carers (n=104) were recruited from UK support groups and stratified using duration of the care recipient’s ED (0-2, 2-6, > 6 years), with the > 6 years category classified as SEED. Data were compared with existing carer well-being studies of other patient groups. Findings – Carers of people with SEED were not significantly different on reported well-being to carers of people with ED. However, carers of people with ED reported significantly less well-being than community norms, carers of people with brain injury and of people with dementia. Specifically, poorer social functioning was reported. Research limitations/implications – Further research on carers of people with SEED is warranted as carers of people with SEED were not equally balanced in gender. It would be beneficial if support groups and skill-based workshops were more available for carers. Originality/value – This is the first known study to compare carer well-being of people with SEED with carers of other clinical populations. Further research is required to identify the needs of carers.
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Lalor, A., K. Ip, and D. Parikh. "P065 Sleep Perceptions of Carers in Palliative Care: A Qualitative Study." SLEEP Advances 3, Supplement_1 (October 1, 2022): A51. http://dx.doi.org/10.1093/sleepadvances/zpac029.136.
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Abstract Introduction Carers of individuals receiving palliative care have heightened responsibilities as part of their role which significantly affects their sleep. Despite the recognised importance of sleep, and the evidence regarding the impact of disturbed sleep on one’s physical and psychological wellbeing, sleep of carers is often overlooked. Furthermore, research regarding the lived experience of carers regarding their sleep is limited. This study aimed to explore carers’ sleep experiences, perceived factors related to sleep, and sleep management strategies that they adopt, in order to inform tailored assessment and sleep interventions for carers of individuals receiving palliative care. Methods Nine carers providing home palliative care were interviewed regarding their sleep experiences. Interviews were audio-recorded, transcribed verbatim and analysed thematically. Results Five key themes were identified: (1) Sleep experiences are complex; (2) Sleep is not the priority; (3) Contributing factors of sleep vary; (4) Multiple sleep management strategies exist; and, (5) Need for carer preparedness and ongoing support; under one overarching theme being “sleep is individual for every carer”. Discussion Sleep is an individualised and complex experience that is perceived differently by carers. To improve carers’ self-appraisal in sleep quality, consideration of personal beliefs and attitudes should be accounted for to aid addressing factors that contribute to carers’ sleep disturbances. Further, carer-specific resources are crucial to improving quality and accessibility of support services (i.e. respite care).
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Jarvis, Alison, Mark Smith, Lynsey McAlpine, and David C. Gillespie. "Caring for the carer of someone who has had a stroke: findings from an innovative project." International Journal of Therapy and Rehabilitation 26, no. 8 (August 2, 2019): 1–11. http://dx.doi.org/10.12968/ijtr.2017.0167.
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Background/Aims Going into and coming out of hospital can be an uncertain and sometimes emotional experience for carers as well as patients. Many carers feel insufficiently involved and unsupported in the discharge process. However, we know that if hospital discharge is well-planned and the right services put in place then there is a much greater likelihood of the cared for person remaining at home with carer support and the carer feeling able to continue in their caring role. The aim of this article is to analyse an intervention that provided unpaid stroke carers with tailored support to meet their needs and prepare them for the discharge of their stroke survivor. Methods A carer support worker focused on the needs of carers of inpatients in an integrated stroke unit. The impact of the service was measured using the Caregiver Strain Index and the Preparedness for Caregiving Scale, together with carer self-ratings as to whether and/or how their needs were met. Results The most common outcomes, in order of reported importance were: confidence in accessing services, confidence in caring, requiring specific information, and the ability to improve or maintain their own wellbeing. Bed days saved and reductions in post-discharge packages of care were estimated. The median reduction in length of stay was 9 days, and potential savings were calculated at £35 367 during the 19-month study period. Conclusions A dedicated support service for unpaid stroke carers was effective in addressing carers' unmet needs and delivered health care cost savings.
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Watts, Jacqueline H., and Joyce Cavaye. "Being a Former Carer: Impacts on Health and Well-Being." Illness, Crisis & Loss 26, no. 4 (December 5, 2016): 330–45. http://dx.doi.org/10.1177/1054137316679992.
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In the United Kingdom, policy has formalized the role of carers through the introduction of new rights and entitlements to support. However, this support is directed only at current carers with the needs of former carers being unacknowledged. Yet, when caregiving comes to an end, the transition to a life as a “former” carer can be challenging. This article reports findings from a small-scale qualitative study about the experiences of former carers conducted in the United Kingdom. Findings highlight the impact of caregiving on the health and well-being of former carers with feelings of loss and distress associated with the end of caregiving. The need for support in the post-caregiving phase emerges as a significant issue with former carers feeling abandoned, lacking purpose and motivation to move forward in their lives. Findings suggest that the needs of former carers are not being met.
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McConkey, Roy, Jayne McConaghie, Owen Barr, and Paul Roberts. "Views of family carers to the future accommodation and support needs of their relatives with intellectual disabilities." Irish Journal of Psychological Medicine 23, no. 4 (December 2006): 140–44. http://dx.doi.org/10.1017/s0790966700009940.
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AbstractObjectives: The demand for places in supported accommodation is likely to rise due to the increasing longevity of people with intellectual disabilities and as their parents become unavailable or unable to care for them. However few attempts have been made to ascertain carer's views on alternative accommodation.Method: Four studies were undertaken in Northern Ireland to ascertain carer's views using three different methods. In all, 387 carers participated with the response being greatest for individual interviews conducted in the family home and least for self-completed questionnaires and attendance at group meetings.Results: The majority of carers envisaged the person continuing to be cared for within the family. The most commonly chosen out-of-home provision was in residential or nursing homes, living with support in a house of their own and in homes for small groups of people. Few carers chose living with another family. However only small numbers of carers envisaged alternative provision being needed in the next two years and few had made any plans for alternative living arrangements.Conclusions: The implications for service planning are noted, primarily the need for individual reviews of future needs through person-centred planning; improved information to carers about various residential options and their differential benefits, along with more services aimed at improving the quality of life of people living with family carers. These need to be underpinned by a commitment of statutory agencies to partnership working with family carers. The implications for mental health services are noted.
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Johansson, Marcus, Kevin J. McKee, Lena Dahlberg, Martina Summer-Meranius, Christine Williams, and Lena Hammar. "Negative Impact and Positive Value of Caregiving in Spouse Carers of Persons With Dementia in Sweden." Innovation in Aging 5, Supplement_1 (December 1, 2021): 152–53. http://dx.doi.org/10.1093/geroni/igab046.586.
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Abstract As welfare providers struggle to meet the care needs of persons with dementia (PwDs), most of their needs are being met by a family carers, most often a spouse. The situation for spouse carers is unique, e.g., with grief, loneliness and loss of intimacy combining with stress and poor health. Research is needed to develop adequate support for spouse carers based on evidence of what influences negative and positive outcomes of care. The present study investigated psychosocial correlates of spouse carers’ (i) negative impact and (ii) positive value of caring. Data from a cross-sectional survey of 165 spouse carers community-resident in Sweden was analysed in two hierarchical regression models to predict negative impact and positive value of caring. Results found that negative impact and positive value were explained by different variables, significant predictors for negative impact included carer stress, health, and emotional loneliness, and change in intimacy with the care-recipient, while positive value was predicted by mutuality, change in closeness to the care-recipient and quality of support. Negative impact and positive value shared variance of only 17.2%. Thus, negative impact and positive value represent different aspects of the carer situation. Consequently, support needs to target several aspects in carers’ life, aiming to; facilitate for spouses to manage PwD’s impairment, increase emotional support while also strengthening the relationship between carer and PwD to reduce negative impact while increasing positive value.
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Røen, Ingebrigt, Hans Stifoss-Hanssen, Gunn Grande, Anne-Tove Brenne, Stein Kaasa, Kari Sand, and Anne Kari Knudsen. "Resilience for family carers of advanced cancer patients—how can health care providers contribute? A qualitative interview study with carers." Palliative Medicine 32, no. 8 (June 1, 2018): 1410–18. http://dx.doi.org/10.1177/0269216318777656.
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Background: Caring for advanced cancer patients affects carers’ psychological and physical health. Resilience has been defined as “the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat.” Aim: The aim of this study was to explore factors promoting carer resilience, based on carers’ experiences with and preferences for health care provider support. Design: Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation. Setting/participants: Carers ( n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included. Results: 14 carers of advanced cancer patients were included; 7 men, 7 women, and mean age of 59 years; 3 were bereaved; 12 were partners; 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers—a personal relation; (2) availability of palliative care; (3) information and communication about illness, prognosis, and death; and (4) facilitating a good carer–patient relation. Conclusion: Health care providers may enhance carers’ resilience by a series of simple interventions. Education should address carers’ support needs and resilience. Systematic assessment of carers’ support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death.
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Hudson, Catherine, Kate Radford, and Jade Kettlewell. "A Qualitative Study to Understand the Impact of Caring for Traumatic Injury Survivors." International Journal of Environmental Research and Public Health 19, no. 23 (December 3, 2022): 16202. http://dx.doi.org/10.3390/ijerph192316202.
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Background: Following traumatic injury, an informal carer is often required to support recovery. Understanding the impact of caregiving is important to inform intervention design. Aim: to explore the impact of caring on family and caregiver finances, employment, social life, and psychological wellbeing. Method: Semi-structured interviews conducted with carers of traumatic injury survivors. Interviews were audio recorded, transcribed and thematically analysed, informed by the Roy Adaptation Model (RAM) and International Classification of Functioning, Disability and Health (ICF). Results: Ten participants were interviewed. Key themes included (1) financial impact/employment issues, (2) relationships and support and (3) psychological impact. Most carers did not receive professional support with daily care post-discharge. Carers’ employers responded positively, supporting them even after extensive leave. Carers received inconsistent communication whilst visiting trauma survivors in hospital; carers with healthcare experience were favoured. Navigating and receiving benefits was complex. Some carers found it difficult to accept the trauma survivor’s injury, whilst others focused on achieving goals. Conclusions: Support from professional services is limited outside hospital settings for non-brain injuries. Future interventions and healthcare services should acknowledge the lack of psychological support for carers. Researchers should consider using the ICF/RAM when designing interventions to ensure the full impact on carers is addressed.
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Pickard, Susan, and Caroline Glendinning. "Caring for a relative with dementia: The perceptions of carers and CPNs." Quality in Ageing and Older Adults 2, no. 4 (December 1, 2001): 3–11. http://dx.doi.org/10.1108/14717794200100024.
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Older people with dementia living in the community are most likely to be cared for by other older people, predominantly spouses, who will be at increased risk of stress‐related health problems themselves. Appropriate support of such carers is crucial if carer breakdown and consequent care‐receiver admission to residential homes is to be avoided. This paper examines the experience of older carers of frail older people with dementia and examines the kind of support that is provided to such carers. In practice, the sole source of professional support received by older people in this study was from community psychiatric nurses (CPNs). CPNs' role did not comprise hands‐on care‐giving and family carers carried out most personal/physical and healthcare tasks themselves, aided in some cases by care workers. The paper concludes by suggesting that lack of support for carers in these activities requires redress.
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McCarthy, G., I. Gresswell, and D. Adamis. "Burden of informal carers in northwest Ireland: A pilot study of factors that influence burden." European Psychiatry 33, S1 (March 2016): S188. http://dx.doi.org/10.1016/j.eurpsy.2016.01.420.
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IntroductionResearch has shown that approximately 67% of carers experience extreme mental tiredness, a decrease in their quality of life and a deterioration in their physical health since taking on a care-giving role.Aims and objectivesThis study aims to identify factors that influence carer burden and in doing so, identify the sub-populations of carers who are most susceptible to burden.MethodsIn northwest Ireland, 53 informal carers referred to the Carers Association, Sligo were contacted and met for a face-to-face interview. Measurements used included demographic data, the Neuropsychiatric Inventory, Zarit Burden Interview, Social Network Index and Brown's Locus of Control Scale.ResultsOf the 53 carers, 43 were females and 10 males (age range: 32–81 years, mean age of 64.5 years). Of the corresponding 53 patients, 21 were females and 32 males (age range: 17–92 years, mean age of 72.1 years). Multiple linear regression analysis showed that sex of carer, marital status and the patient's behavioural problems were statistically significant independent factors, which influenced carer burden (p < 0.01). Female sex and greater patient behavioural problems increased susceptibility to burden and being married increased resilience towards burden.ConclusionsThe ability to predict which carers are more susceptible to burden allows physicians to more quickly identify “higher risk” carers, facilitating routine check-ups by physicians and carer support services. Further research should explore why female and unmarried carers are more susceptible to burden and whether it is possible to tailor support services to their individual needs.Disclosure of interestThe authors have not supplied their declaration of competing interest.