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1
Mitchell, Eileen. "Managing Carer Stress: An Evaluation of a Stress Management Programme for Carers of People with Dementia." British Journal of Occupational Therapy 63, no. 4 (April 2000): 179–84. http://dx.doi.org/10.1177/030802260006300407.
Повний текст джерелаАнотація:
This article examines the effect of carer stress management using the Carers' Checklist (Hodgson et al 1998) as a measure of outcome. Pre-course and post-course questionnaires were used with carers, identified by health and social services professionals, who agreed to attend a structured stress management course. Seven out of the 10 identified carers, who resided in the West Dorset area, participated. Only one carer's wife was a resident in a nursing home; the others were caring actively at home. The main measures of outcome were the burden of care, including social, financial and physical demands in terms of the carers' own experience, and their level of understanding of stress management techniques. The carers who attended demonstrated a better awareness and understanding of stress and its management following the course. Positive measures of outcome were also determined by a decrease in the carers' rating in frequency of dementia-related problems, carer burden of dementia-related problems and overall carer burden. The findings confirm that structured stress management can reduce carer burden and offer better coping strategies through raising carers' awareness and understanding.
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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.
Повний текст джерелаАнотація:
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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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.
Повний текст джерелаАнотація:
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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Berk, Lesley, and Michael Berk. "Who cares about carers?" Australian & New Zealand Journal of Psychiatry 49, no. 10 (September 7, 2015): 936–37. http://dx.doi.org/10.1177/0004867415605621.
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Pring, Tim. "Who cares for carers?" Aphasiology 13, no. 12 (December 1999): 914–17. http://dx.doi.org/10.1080/026870399401687.
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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.
Повний текст джерелаАнотація:
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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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.
Повний текст джерелаАнотація:
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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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.
Повний текст джерелаАнотація:
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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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.
Повний текст джерелаАнотація:
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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de Andrés-Jiménez, Elena, Rosa Mª Limiñana-Gras, and Encarna Fernández-Ros. "Personality and Dementia: an Approach to Differential Profile of the Caregiver." European Journal of Investigation in Health, Psychology and Education 1, no. 3 (September 22, 2011): 85–94. http://dx.doi.org/10.1989/ejihpe.v1i3.7.
Повний текст джерелаАнотація:
The aim of this study is to determine the existence of a characteristic personality profile of family carers of people with dementia. The correct knowledge and use of psychological variables which affect the carer, helps to promote appropriate actions to mitigate the impact of care and improve the carer’s quality of life and likewise the one of the person cared for. The study population consists of 69 family carers of people with dementia, members of various associations and care centers. The results allow us to identify a characteristic personality profile for these carers and it reveals a specific psychological working in this sample, although we cannot directly relate it with the tasks of caring for people with this disease, this profile gives us very relevant information to pay more attention to the needs of this group. Moreover, the analysis of personality styles depends on the sex of the family carer, showing, once again, that the woman is in a situation of most vulnerability.
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de Andrés-Jiménez, Elena, Rosa Mª Limiñana-Gras, and Encarna Fernández-Ros. "Personality and Dementia: an Approach to Differential Profile of the Caregiver." European Journal of Investigation in Health, Psychology and Education 1, no. 3 (September 22, 2011): 85–94. http://dx.doi.org/10.3390/ejihpe1030007.
Повний текст джерелаАнотація:
The aim of this study is to determine the existence of a characteristic personality profile of family carers of people with dementia. The correct knowledge and use of psychological variables which affect the carer, helps to promote appropriate actions to mitigate the impact of care and improve the carer’s quality of life and likewise the one of the person cared for. The study population consists of 69 family carers of people with dementia, members of various associations and care centers. The results allow us to identify a characteristic personality profile for these carers and it reveals a specific psychological working in this sample, although we cannot directly relate it with the tasks of caring for people with this disease, this profile gives us very relevant information to pay more attention to the needs of this group. Moreover, the analysis of personality styles depends on the sex of the family carer, showing, once again, that the woman is in a situation of most vulnerability.
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Mowforth, Oliver Daniel, Benjamin Marshall Davies, and Mark Reinhard Kotter. "Quality of Life Among Informal Caregivers of Patients With Degenerative Cervical Myelopathy: Cross-Sectional Questionnaire Study." Interactive Journal of Medical Research 8, no. 4 (November 7, 2019): e12381. http://dx.doi.org/10.2196/12381.
Повний текст джерелаАнотація:
Background Degenerative cervical myelopathy (DCM) is a common, chronic neurological condition that severely affects individuals by causing a range of disabling symptoms, frequently at a time around the peak of their careers. Subsequently, individuals with DCM often become dependent on informal care arrangements. The significant economic contribution of informal care and its burden on care providers are becoming increasingly recognized. Objective This study aimed to measure the quality of life of DCM informal caregivers and provide preliminary insight into possible contributing factors. Methods Carers of individuals with DCM completed a Web-based survey hosted by Myelopathy.org, an international DCM charity. Carer quality of life was assessed in the form of caregiver happiness and 7 dimensions of carer burden using the Care-Related Quality of Life (CarerQol) instrument. The relationships between patient disease severity, patient pain, and carer quality of life were investigated. Differences in carer quality of life were assessed across patient and carer demographic groups, including between UK and US carers. Results DCM caregivers experienced substantial burden as a result of their caregiving (mean CarerQol-7D=64.1; 95% CI 58.8-69.5) and low happiness (mean CarerQol-VAS [Visual Analog Scale]=6.3; 95% CI 5.7-6.9). Burden was high and happiness was low in DCM carers when compared with a large, mixed-disease study of adult informal carers where CarerQol-7D was 79.1 and CarerQol-VAS was 7.1. No significant relationship was found between DCM carer quality of life and patient disease severity and pain scores. DCM carer quality of life appeared uniform across all patient and carer demographic groups. Conclusions Caring for individuals with DCM is associated with reduced quality of life in the form of significant burden and reduced happiness. Reductions appear greater in DCM than in other diseases investigated. However, no simple relationship was identified between individual patient or carer factors and carer quality of life.
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Kirtley, Jenna, John Chiocchi, Jon Cole, and Mark Sampson. "Stigma, Emotion Appraisal, and the Family Environment as Predictors of Carer Burden for Relatives of Individuals Who Meet the Diagnostic Criteria for Borderline Personality Disorder." Journal of Personality Disorders 33, no. 4 (August 2019): 497–514. http://dx.doi.org/10.1521/pedi_2018_32_355.
Повний текст джерелаАнотація:
There is some research exploring carers’ experiences within the National Health Service in the UK, but only one has focused on carers of individuals with borderline personality disorder (BPD). Ninety-eight carers completed a questionnaire-based study; 57 carers of individuals who meet the diagnostic criteria for BPD were compared to 41 carers of individuals with other mental health problems. The study aimed to investigate whether perceived stigma, perceived threat of strong emotions, and expressed emotion (EE) within the family environment predicted carer burden. The results showed that carers of those who met the diagnosis for BPD experienced higher levels of carer burden, stigma, EE, emotional over involvement (EOI), criticism (CC), and perceived threat of strong emotions than carers of individuals with other mental health difficulties. EOI, CC, carer group (BPD and mental health), and gender of participant were predictors of carer burden, with EOI explaining the most variance of burden.
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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.
Повний текст джерелаАнотація:
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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Poon, A. W. C., C. Harvey, A. Mackinnon, and L. Joubert. "A longitudinal population-based study of carers of people with psychosis." Epidemiology and Psychiatric Sciences 26, no. 3 (February 5, 2016): 265–75. http://dx.doi.org/10.1017/s2045796015001195.
Повний текст джерелаАнотація:
Aims.Few studies have examined the experiences of carers of people with psychosis using a representative sample. Aiming to obtain generalisable results concerning carers in the context of increased emphasis on involving carers in Australian mental health service delivery and policy frameworks, this study recruited carers within the second Australian national survey of psychotic disorders (Survey of High Impact Psychosis, SHIP). Given that most SHIP participants had long-term illness and extended relationships with carers, the health and wellbeing of carers as a group were expected to be relatively stable. However, since it is unknown whether carers’ health and wellbeing would change, our main aim was to explore change and stability in carers’ health and wellbeing and the relationship between any changes experienced by individual carers and corresponding SHIP participants’ functioning over time.Methods.Ninety-eight caregivers of SHIP participants were recruited at baseline and completed validated instruments assessing their health and wellbeing. Seventy-eight carers were re-interviewed at 1-year follow-up. Clinical factors were extracted from the SHIP database. Wilcoxon matched-pairs signed-rank test and t-test were used to analyse changes in variables over time. Cross-lagged analyses were conducted to identify possible causative relationships in changes in SHIP participant and carer variables.Results.A substantial percentage of carers experienced social isolation (28.6%), psychological distress (37.7%) and poorer quality of life than population norms. There were no statistically significant changes between baseline and follow-up scores for almost all carers’ health and wellbeing variables, other than a poorer perception of their quality of life in relation to their physical health after 1 year. Cross-lagged analyses suggested that poorer functioning of people with psychosis influenced carers’ social isolation, grief and psychological distress.Conclusions.Findings show that carers’ perception of their health and wellbeing did not improve within current mental health service delivery frameworks over time. Carer's persistently poor health and wellbeing suggests a pressing need to enhance services that improve carers’ health and wellbeing especially their physical health and the functioning of people with psychosis whom they support.
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Davies, Andrew, Jennifer Todd, Fiona Bailey, Amanda Gregory, and Melanie Waghorn. "Good concordance between patients and their non-professional carers about factors associated with a ‘good death’ and other important end-of-life decisions." BMJ Supportive & Palliative Care 9, no. 3 (May 17, 2016): 340–45. http://dx.doi.org/10.1136/bmjspcare-2015-001085.
Повний текст джерелаАнотація:
ObjectivesThe aim of this study was to investigate concordance between patients and non-professional carers about factors associated with a ‘good death’ and other end-of-life decisions.MethodsPatients completed a questionnaire about end-of-life care issues, and were asked to rank the importance of factors linked to a ‘good death’. Carers also completed a questionnaire about end-of-life care issues relating to the patient, and whether or not they agreed with those choices (ie, medical treatments, PPD). Carers were also asked to rank the importance of factors linked to a ‘good death’ to the patient, and to them personally at that point in time.ResultsOnly 69% of patients stated they had discussed their preferences for end-of-life care with their respective carer. The rankings were similar for the patient and the carer's views of what was important for the patient, although the patients ranked ‘to be involved in decisions about my care’ as less important than the carers, while the carers ranked ‘to have sorted out my personal affairs’ as less important than the patients.ConclusionsWhen discussions around end-of-life choices do occur, carers generally appear to agree with the patients' preferences around end-of-life treatment, and preferred place of death.
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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.
Повний текст джерелаАнотація:
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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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.
Повний текст джерелаАнотація:
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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Braham, Meg, and Mary Banks. "Who cares for the carers?" Nursing Standard 2, no. 31 (May 7, 1988): 13. http://dx.doi.org/10.7748/ns.2.31.13.s55.
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Armon, Carmel. "Who cares for the carers?" Amyotrophic Lateral Sclerosis 7, no. 3 (January 2006): 131. http://dx.doi.org/10.1080/14660820600600384.
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Kelly, Mike. "WHO CARES…………FOR THE CARERS?" Journal of Renal Care 36, no. 1 (March 2010): 16–20. http://dx.doi.org/10.1111/j.1755-6686.2010.00139.x.
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Williams, Tracey. "Who cares for the carers?" Journal of Perioperative Practice 29, no. 7-8 (June 27, 2019): 195. http://dx.doi.org/10.1177/1750458919858862.
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D'Cruz, L. "Who cares for the carers?" British Dental Journal 207, no. 1 (July 2009): 11–12. http://dx.doi.org/10.1038/sj.bdj.2009.557.
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Sturge, C., A. Frank, and T. Coster. "Who cares for young carers?" BMJ 308, no. 6942 (June 4, 1994): 1510–11. http://dx.doi.org/10.1136/bmj.308.6942.1510b.
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Travis, M. J., and T. Bruce. "Who cares for young carers?" BMJ 309, no. 6950 (July 30, 1994): 341. http://dx.doi.org/10.1136/bmj.309.6950.341a.
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Jenkins, S., and C. Wingate. "Who cares for young carers?" BMJ 308, no. 6931 (March 19, 1994): 733–34. http://dx.doi.org/10.1136/bmj.308.6931.733.
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Pilkington, Paulina. "Who Cares for the Carers?" Journal of Advanced Nursing 18, no. 12 (December 1993): 1855–56. http://dx.doi.org/10.1046/j.1365-2648.1993.18121855.x.
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Fuller, Alice. "Who cares for the carers?" British Journal of Neuroscience Nursing 8, no. 5 (October 2012): 311. http://dx.doi.org/10.12968/bjnn.2012.8.5.311.
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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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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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Kouroupa, A., E. Petkari, and D. Giacco. "Carer involvement in the transition from inpatient to community mental healthcare: Experiences of stakeholders." European Psychiatry 65, S1 (June 2022): S610. http://dx.doi.org/10.1192/j.eurpsy.2022.1563.
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Introduction The involvement of informal carers (family and friends) in the care of people with severe mental illness (SMI) contributes to positive clinical outcomes, such as relapse prevention and symptom reduction. To date, the care pathway between inpatient and community care is not clearly defined impeding the smooth transition for patients, whilst carers are still barely involved in shared decision-making processes. Objectives To investigate the views and experiences of patients with SMI, carers and clinicians regarding the transition from inpatient to community mental health services. Methods Four mixed focus groups were conducted with individuals with SMI (n=12), carers (n=10) and clinicians (n=9) across four different mental health catchment areas in England. Participants discussed their experiences and provided their views on facilitators, barriers and solutions for carer involvement during the transition between mental health services. Data were analysed using thematic analysis. Results All stakeholders highlighted that factors that impede carer involvement are related to: confidentiality issues, unmet (structural and organisational) needs, and carer expectations. Patients with SMI, carers and clinicians agreed that carer involvement can be improved by providing psychoeducation to carers and training to staff, having accessible and transparent clinical procedures, and allocating specialised staff to carers. Conclusions The study findings emphasise that carer involvement is still overlooked, particularly when adults with SMI transition between services. The results provide guidance for practice emphasising the need for systematic involvement of carers across inpatient care, and for future research proposing effective ways of maximising carer involvement in mental health care. Disclosure No significant relationships.
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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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Bruce, Remia, Wendy Murdoch, Ashley Kable, Kerrin Palazzi, Carolyn Hullick, Dimity Pond, Christopher Oldmeadow, et al. "Evaluation of Carer Strain and Carer Coping with Medications for People with Dementia after Discharge: Results from the SMS Dementia Study." Healthcare 8, no. 3 (July 31, 2020): 248. http://dx.doi.org/10.3390/healthcare8030248.
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This study reports carer strain and coping with medications for people with dementia with an unplanned admission to hospital, and it evaluates the impact of a safe medication intervention on carer coping and carer strain. This was a quasi-experimental pre/post-controlled trial that included a survey of carers about managing medications for people with dementia after discharge. For 88 carers who completed surveys, 33% were concerned about managing medications, and 40% reported difficulties with medication management, including resistive behaviours by people with dementia. Dose administration aids were used by 72% of carers; however, only 15% reported receiving a recent home medicines review by a community pharmacist. High carer strain was reported by 74% of carers. Carer comments described many issues that contributed to high carer stress, as well as their engagement in vigilant activities to maintain medication safety. Strategies that can contribute to carers managing medications and reducing their strain include an increased use of dose administration aids, increased provision of home medicines reviews, and increased education of health professionals to provide adequate support and education about managing medications.
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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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Camden, Andrew, Gill Livingston, and Claudia Cooper. "Reasons why family members become carers and the outcome for the person with dementia: results from the CARD study." International Psychogeriatrics 23, no. 9 (July 1, 2011): 1442–50. http://dx.doi.org/10.1017/s1041610211001189.
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ABSTRACTBackground: Using a representative secondary care survey for the first time, we explored family carers’ reasons for providing care. We hypothesized that carers with a positive rather than negative motivation for caring would be less abusive towards the care recipient and more likely to be caring for someone still living at home a year later.Methods: We interviewed 220 consecutively referred dementia family/friend carers from UK Community Mental Health Teams. We asked non-spousal carers why they were the main carer. Our main outcomes were the revised Modified Conflict Tactics Scale scores, measuring abusive behavior by the carer, and admission of the person with dementia to a care home.Results: Nineteen (17.1%) said they were the main carer due to the high quality of their relationship with the care recipient, their willingness to take on or their suitability for the carer role. A further 22 (19.8%) said they were the main carer due to other potential carers’ negative relationship with the care recipient, unwillingness or lack of suitability for the role. Carers who gave the latter explanation tended to be more anxious at baseline (F = 3.0, p = 0.055), reported higher abusive behavior towards the care recipient a year later after controlling for sociodemographic variables (t = 2.0, p = 0.05), and their care recipient was more likely to be admitted to a care home in the following year (hazards ratio 9.9, p = 0.040).Conclusions: We found preliminary evidence that carers’ reasons for providing care predict the well-being of the care recipient. Future studies involving dementia family carers should consider asking why the main carer assumed this role.
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Kuipers, E., P. Bebbington, G. Dunn, D. Fowler, D. Freeman, P. Watson, A. Hardy, and P. Garety. "Influence of carer expressed emotion and affect on relapse in non-affective psychosis." British Journal of Psychiatry 188, no. 2 (February 2006): 173–79. http://dx.doi.org/10.1192/bjp.bp.104.007294.
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BackgroundHigh expressed emotion in carers predicts relapse in psychosis, but it is not known why this is so. In our cognitive model of psychosis, we postulated that the effect is mediated through affective changes.AimsTo investigate the relationships between carer expressed emotion, patients' symptoms and carer characteristics during a recent relapse of psychosis.MethodA total of 86 patients and carers were investigated in a cross-sectional design.ResultsPatients whose carers showed high expressed emotion had significantly higher levels of anxiety and depression, but not more psychotic symptoms or lower self-esteem. Linear regression showed that carers' critical comments predicted anxiety in patients. Critical comments were related to low carer self-esteem and avoidant coping strategies. Low carer self-esteem was also related to carer depression, stress and carer ‘burden’, and to low patient self-esteem.ConclusionsOur hypothesis was partially supported. Carer criticism was associated with patient anxiety, low carer self-esteem and poor carer coping strategies. Family interventions should focus on improving these after a relapse of symptoms of psychosis.
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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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Jackson, Haley, Jane Wray, Eric Gardiner, and Tracy Flanagan. "Involving carers in risk assessment: a study of a structured dialogue between mental health nurses and carers." Journal of Research in Nursing 24, no. 5 (August 2019): 330–41. http://dx.doi.org/10.1177/1744987119851533.
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Background Involving carers is a key priority in mental health services. Carers report the sharing of service users’ safety information by mental health nurses is problematic and seldom takes place. Aims The impact of an intervention on consensus between nurses and carers on perceptions of risk was investigated. Methods Carer–nurse risk consensus scores were measured pre- and post-introduction of a structured dialogue (paired t-test/ANOVA). Carer experience with involvement was surveyed pre-test ( n = 60) and compared with the post-test intervention group ( n = 32) (chi-square tests of linear-by-linear association). Results Consensus and perceptions regarding type and severity of risk did not change significantly for carers or nurses after engaging in a structured dialogue. Statistically significant differences were found with carers reporting higher levels of satisfaction with services in four out of six areas surveyed. Conclusions Findings provide support for increasing carer contribution to discussions regarding risk. Further work to embed carer involvement in clinical practice is warranted.
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Cormac, Irene, and Peter Tihanyi. "Meeting the mental and physical healthcare needs of carers." Advances in Psychiatric Treatment 12, no. 3 (May 2006): 162–72. http://dx.doi.org/10.1192/apt.12.3.162.
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The health of family carers may affect not only their own lives but also the lives of the people for whom they provide care. This article describes how the caring role can affect the health and well-being of a carer of a person who has a mental or physical disorder. Suggestions are made about how to recognise and ameliorate some of the detrimental effects of the caring role on the carer's own health.
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Raune, D., E. Kuipers, and P. E. Bebbington. "Expressed emotion at first-episode psychosis: investigating a carer appraisal model." British Journal of Psychiatry 184, no. 4 (April 2004): 321–26. http://dx.doi.org/10.1192/bjp.184.4.321.
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BackgroundEven at the first episode of psychosis, high expressed emotion (EE) characterises over half of patient–carer relationships. This study compared a carer appraisal model of EE with the ability of illness factors to predict EE at the first episode.AimsTo investigate the utility of a carer appraisal model of EE in first-episode psychosis.MethodWe compared high- and low-EE carers of people who had first-episode psychosis (n=46).ResultsHigh EE in carers was associated with higher avoidant coping, higher subjective burden and lower perceived patient interpersonal functioning. Patient illness factors and carers ‘distress levels were not associated with EE.ConclusionsEven at the first episode, carers' psychological appraisal, not patient illness factors, is influential in determining high EE. Carers ‘appraisal of their situation should be a primary target to lower or prevent high EE in early intervention for psychosis.
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Cooper, Claudia, Julie Barber, Mark Griffin, Penny Rapaport, and Gill Livingston. "Effectiveness of START psychological intervention in reducing abuse by dementia family carers: randomized controlled trial." International Psychogeriatrics 28, no. 6 (December 11, 2015): 881–87. http://dx.doi.org/10.1017/s1041610215002033.
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ABSTRACTBackground:Family carers of people with dementia frequently report acting abusively toward them and carer psychological morbidity predicts this. We investigated whether START (STrAtegies for RelaTives), a psychological intervention which reduces depression and anxiety in family carers also reduces abusive behavior in carers of people living in their own homes. We also explored the longitudinal course of carer abusive behavior over two year.Methods:We included self-identified family carers who gave support at least weekly to people with dementia referred in the previous year to three UK mental health services and a neurological dementia service. We randomly assigned these carers to START, an eight-session, manual-based coping intervention, or treatment as usual (TAU). Carer abusive behavior (Modified Conflict Tactic Scale (MCTS) score ≥2 representing significant abuse) was assessed at baseline, 4, 8, 12, and 24 months.Results:We recruited 260 carers, 173 to START and 87 to TAU. There was no evidence that abusive behavior levels differed between randomization groups or changed over time. A quarter of carers still reported significant abuse after two years, but those not acting abusively at baseline did not become abusive.Conclusion:There was no evidence that START, which reduced carer anxiety and depression, reduced carer abusive behavior. For ethical reasons, we frequently intervened to manage concerning abuse reported in both groups, which may have disguised an intervention effect. Future dementia research should include elder abuse as an outcome, and consider carefully how to manage detected abuse.
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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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Szmukler, George I., Til Wykes, and Sue Parkman. "Care-giving and the impact on carers of a community mental health service." British Journal of Psychiatry 173, no. 5 (November 1998): 399–403. http://dx.doi.org/10.1192/bjp.173.5.399.
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BackgroundWe examined: care-giving activities in a population-based sample of carers of sufferers from psychotic disorders; putative determinants of care-giving; and changes in care-giving in an intensive community psychiatric service.MethodsIn the PRiSM interview sample 170 people had a carer; 124 were interviewed. Care-giving activities, dissatisfaction with these, and carers General Health Questionnaire (GHQ) scores were measured. Patient and illness characteristics were examined as predictors of the carer measures. The carer measures were reassessed for 62 carers after two years in two service sectors, one with an intensive community service, the other with a standard service.ResultsOverall, 36% of carers were engaged in no, or only occasional care-giving activities. Fifty per cent expressed no dissatisfaction with their care-giving role. Patient and illness characteristics predicted care-giving poorly. Carers in the intensive community treatment sector did not experience significantly different care-giving demands or distress than those in the standard sector.ConclusionsA significant proportion of carers of sufferers from psychosis do not engage in common care-giving activities, and are not dissatisfied with their role. An intensive community service did not affect the impact of the illness on carers.
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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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Hennings, J., K. Froggatt, and J. Keady. "Approaching the end of life and dying with dementia in care homes: the accounts of family carers." Reviews in Clinical Gerontology 20, no. 2 (April 22, 2010): 114–27. http://dx.doi.org/10.1017/s0959259810000092.
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SummaryResearch into end of life and dying with dementia in care homes from the family carer's perspective is limited. From the available evidence, it appears that family carers find themselves in an unfamiliar situation about which they lack knowledge and experience. Whilst dementia tends not to be acknowledged as a terminal illness by many family carers, they are expected to make end of life decisions on behalf of their relatives. Family carer decision-making is underpinned by values of quality of life, previously expressed wishes, comfort provision and dignity preservation. This is often approached when family carers are grieving for the anticipated loss of their relative and have their own personal needs that require to be addressed. Within a care home setting, a curative care–palliative care split is unhelpful in resolving these tensions and a model of comprehensive care appears a more appropriate approach. This requires ongoing communication between the person with dementia, family members and professionals from the early stages of the condition.
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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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Malm, Camilla, Stefan Andersson, Håkan Jönson, Lennart Magnusson, and Elizabeth Hanson. "Moving beyond the first response phenomenon." International Journal of Sociology and Social Policy 39, no. 7/8 (August 22, 2019): 627–43. http://dx.doi.org/10.1108/ijssp-05-2019-0091.
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Purpose In Sweden, the care of older people and people with disabilities is increasingly carried out by informal carers, often family members, who are unpaid and outside a professional or formal framework. While there is an increasing awareness of the role of carers within service systems and their own needs for support, their involvement in research is underexplored. The purpose of this paper is to explore carers’ views and experiences of involvement in research and development (R&D) work. Design/methodology/approach A qualitative study was conducted, consisting of 12 individual interviews with carers from different local Swedish carer organizations. Findings Core findings included carers’ discussions of the perceived challenges and benefits of their involvement in research, both generally and more specifically, in the context of their involvement in the development of a national carer strategy. Research limitations/implications Limitations included the relative lack of male carer participants and the convenience sample. Practical implications Authentic carer involvement in research demands a high level of engagement from researchers during the entire research process. The provided CRAC framework, with reference to the themes community, reciprocity, advocacy and circumstantiality, may help researchers to understand and interpret carer involvement in research and provide the prerequisites for their involvement. Originality/value There is a dearth of studies that systematically examine carer involvement in research. This paper attempts to redress this gap by providing a nuanced analysis of carer involvement in R&D work from the perspective of carers themselves.
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Bosboom, Pascalle R., Helman Alfonso, Joanna Eaton, and Osvaldo P. Almeida. "Quality of life in Alzheimer's disease: different factors associated with complementary ratings by patients and family carers." International Psychogeriatrics 24, no. 5 (January 16, 2012): 708–21. http://dx.doi.org/10.1017/s1041610211002493.
Повний текст джерелаАнотація:
ABSTRACTBackground: Quality of life (QoL) in dementia is a complex construct and factors that predict QoL ratings are unclear. We designed this study to determine: (1) the agreement in QoL ratings between community-dwelling patients with mild to moderate dementia and family carers; and (2) the factors associated with self-reported and two types of carer-reported QoL ratings: carer–carer perspective and carer–patient perspective.Methods: A cross-sectional study was carried out of 80 community-dwelling patients with the diagnosis of probable Alzheimer's disease (AD) of mild or moderate severity according to NINCDS-ADRD criteria, and their 80 family carers. The QoL-AD was the primary outcome measure. We collected patients’ self-reported QoL ratings and two types of carer-reported QoL ratings: carer–patient and carer–carer perspectives. Explanatory variables included demographics, lifestyle, and clinical information from patients and carers, along with cognition, awareness, psychopathology, burden-of-care, and functionality in daily life. Bland-Altman plots guided the interpretation of agreement by visualizing the distribution of all the ratings. Univariate and multivariate regression analyses were conducted to examine the contribution of candidate explanatory factors.Results: Patients and their carers showed good agreement in their QoL ratings, although the total scores of carers (regardless of perspective) were lower than the scores of patients. Depression, insight and use of anti-dementia agents were associated with QoL self-ratings, whereas cognitive function was directly associated and depression inversely associated with carers’ QoL ratings.Conclusion: Mild to moderate community-dwelling AD patients and their carers (with different perspectives) agree within an acceptable range in QoL ratings but the ratings are driven by different factors, and consequently are not interchangeable but complementary. They provide valuable information when used separately, not in a composite score.
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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.
Повний текст джерелаАнотація:
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.