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Family Carers (family + carer)
Selected AbstractsUsing photographs and narratives to contextualise and map the experience of caring for a person with dementiaJOURNAL OF NURSING AND HEALTHCARE OF CHRONIC ILLNE SS: AN INTERNATIONAL INTERDISCIPLINARY JOURNAL, Issue 3 2009PGCLT (HE), Penny Hibberd RGN Aim., To capture the meaning and context of how carers adapt and develop their relationships throughout their caring role. Background., Family carers play a pivotal role in supporting and caring for a person living with dementia at home. To date, the majority of social research on carers has focussed upon the stress and burden that such demands evoke, and limited attention has been paid to locating the carer's own construction of their role with a relationship-centred approach. This paper attempts to build on this emerging understanding. Design., A participative, qualitative study using photographs and supportive narratives to contextualise and map carer's experiences of caring for a person with dementia. The study was conducted in one area of South East England, UK with all necessary ethical permission to conduct the study obtained prior to data collection. Method., Data was obtained between May,June 2008 with nine carers recruited from a not for profit organisation based in the UK. Photographs were taken by participants using a 27-print disposable camera with supporting written narratives provided on six photographs that participants selected to best represent their caring role and relationship. These photographs and supporting text were then shared with other participants in a focus group. Through this process, participants were helped to sort and group the data into narrative themes. Results., From this collaborative process, the group identified four types of caring relationships, these were: recognising (1); transforming (2); stabilising (3); and ,moving on' (4). Photographs and the supporting narratives were used to illustrate each type of relationship that helped to give meaning and shape to everyday life. Conclusion., The four types of caring relationships help nurses and other service providers to understand how carers of people with dementia construct and manage their day-to-day life. Recognition of a carer's personhood needs to be acknowledged in order to promote and support their role throughout the caring trajectory. Relevance to clinical practice., Recognition of the knowledge and skills held by carers of people with dementia can help inform professional decision-making and provide a platform for practice intervention. [source] Older patients and delayed discharge from hospitalHEALTH & SOCIAL CARE IN THE COMMUNITY, Issue 6 2000Christina R. Victor BA M Phil PhD Hon MFPHM Abstract Older people (those aged 65 years and over) are the major users of health care services, especially acute hospital beds. Since the creation of the NHS there has been concern that older people inappropriately occupy acute hospital beds when their needs would be best served by other forms of care. Many factors have been associated with delayed discharge (age, sex, multiple pathology, dependency and administrative inefficiencies). However, many of these factors are interrelated (or confounded) and few studies have taken this into account. Using data from a large study of assessment of older patients upon discharge from hospital in England, this paper examines the extent of delayed discharge, and analyses the factors associated with such delays using a conceptual model of individual and organisational factors. Specifically, this paper evaluates the relative contribution of the following factors to the delayed discharge of older people from hospital: predisposing factors (such as age), enabling factors (availability of a family carer), vulnerability factors (dependency and multiple pathology), and organisational/administrative factors (referral for services, type of team undertaking assessments). The study was a retrospective patient case note review in three hospitals in England and included four hundred and fifty-six patients aged 75 years and over admitted from their own homes, and discharged from specialist elderly care wards. Of the 456 patients in the sample, 27% had a recorded delay in their discharge from hospital of three plus days. Multivariate statistical analysis revealed that three factors independently predicted delay in discharge: absence of a family carer, entry to a nursing/residential home, and discharge assessment team staffing. Delayed discharge was not related to the hypothesised vulnerability factors (multiple dependency and multiple pathology) nor to predisposing factors (such as age or whether the older person lived alone). The delayed discharge of older people from hospital is a topic of considerable policy relevance. Our study indicated that delay was independently related to two organisational issues. First, entry into long-term care entailed lengthy assessment procedures, uncertainty over who pays for this care, and waiting lists. Second, the nature of the team assessing people for discharge was associated with delay (the nurse-coordinated team made the fewest referrals for multidisciplinary assessments and had the longest delays). Additionally, the absence of a family carer was implicated in delay, which underlines the importance of family and friends in providing posthospital care and in maintaining older people in the community. Our study suggests that considerable delay in discharging older people from hospital originates from administrative/organisational issues; these were compounded by social services resource constraints. There is still much to be done therefore to improve coordination of care in order to provide a truly ,seamless service'. [source] Predictors of entering 24-h care for people with Alzheimer's disease: results from the LASER-AD studyINTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, Issue 11 2009Stephanie Habermann Abstract Objectives Many studies have investigated predictors of people with dementia entering 24-h care but this is the first to consider a comprehensive range of carer and care recipient (CR) characteristics derived from a systematic review, in a longitudinal cohort study followed up for several years. Methods We interviewed 224 people with Alzheimer's disease (AD) and their carers, recruited to be representative in terms of their severity, sex and living situation as part of the LASER-AD study; and determined whether they entered 24-h care in the subsequent 4.5,years. We tested a comprehensive range of characteristics derived from a systematic review, and used Cox proportional hazard regression to determine whether they independently predicted entering 24-h care. Results The main independent predictors of shorter time to enter 24-h care were the patient being: more cognitively or functionally impaired (hazard ratio (HR),=,1.09; 95% CI,=,1.06,1.12) and (HR,=,1.04 95% CI,=,1.03,1.05), having a paid versus a family carer (HR,=,2.22; 95% CI,=,1.39,3.57), the carer being less educated (HR,=,1.43; 95% CI,=,1.12,1.83) and spending less hours caring (HR,=,1.01; 95% CI,=,1.00,1.01). Conclusion As having a family carer who spent more time caring (taking into account illness severity) delayed entry to 24-h care, future research should investigate how to enable carers to provide this. Other interventions to improve patients' impairment may not only have benefits for patients' health but also allow them to remain longer at home. This financial benefit could more than offset the treatment cost. Copyright © 2009 John Wiley & Sons, Ltd. [source] Hospital discharge planning for frail older people and their family.JOURNAL OF CLINICAL NURSING, Issue 18 2009Are we delivering best practice? Aims and objectives., This paper examined the available evidence concerning hospital discharge practices for frail older people and their family caregivers and what practices were most beneficial for this group. Background., Hospital discharge practices are placing an increasing burden of care on the family caregiver. Discharge planning and execution is significant for older patients where inadequate practices can be linked to adverse outcomes and an increased risk of readmission. Design., Literature review. Methods., A review of English language literature published after 1995 on hospital discharge of frail older people and family carer's experiences. Results., Numerous factors impact on the hospital discharge planning of the frail older person and their family carer's that when categorised focus on the role that discharge planning plays in bridging the gap between the care provided in hospital and the care needed in the community, its potential to reduce the length of hospital stay, the impact of the discharge process on family carer's and the need for a coordinated health professional approach that includes dissemination of information, clear communication and active support. Conclusion., The current evidence indicates that hospital discharge planning for frail older people can be improved if interventions address family inclusion and education, communication between health care workers and family, interdisciplinary communication and ongoing support after discharge. Interventions should commence well before discharge. Relevance to clinical practice., An awareness of how the execution of the hospital discharge plan is perceived by the principal family carer of a frail older person, will allow nurses and others involved with the discharge process to better reconcile the family caregivers' needs and expectations with the discharge process offered by their facility. The research shows there is a direct correlation between the quality of discharge planning and readmission to hospital. [source] A review of the information and support needs of family carers of patients with chronic obstructive pulmonary diseaseJOURNAL OF CLINICAL NURSING, Issue 4 2009Ann-Louise Caress Aims and objectives., The objectives of this narrative review were to identify: (1) The information and support needs of carers of family members with chronic obstructive pulmonary disease; (2) appropriate interventions to support carers in their caregiving role; (3) information on carers' needs as reported in studies of patients living with COPD in the community. Background., Chronic obstructive pulmonary disease is a major health problem in the UK resulting in significant burden for patients, families and the health service. Current National Health Service policies emphasise, where medically appropriate, early discharge for acute exacerbations, hospital-at-home care and other models of community care to prevent or reduce re-hospitalisations of people with chronic conditions. Understanding carers' needs is important if health care professionals are to support carers in their caregiving role. Design., A narrative literature review. Methods., Thirty five papers were reviewed after searching electronic databases. Results., Few studies were identified which addressed, even peripherally, carers' needs for information and support, and no studies were found which described and evaluated interventions designed to enhance caregiving capacity. Several studies of hospital-at-home/early discharge, self care and home management programmes were identified which included some information on patients' living arrangements or marital status. However, there was little or no detail reported on the needs of, and in many cases, even the presence of a family carer. Conclusions., This review highlights the dearth of information on the needs of carers of chronic obstructive pulmonary disease patients and the need for future research. Relevance to clinical practice., There is little research based knowledge of the needs of carers of chronic obstructive pulmonary disease patients and interventions to assist them in providing care. This knowledge is critical to ensure that carers receive the information they need to carry out this role while maintaining their own physical and emotional health. [source] Adults with intellectual disabilities: prevalence, incidence and remission of self-injurious behaviour, and related factorsJOURNAL OF INTELLECTUAL DISABILITY RESEARCH, Issue 3 2009S.-A. Cooper Abstract Background Self-injurious behaviour (SIB) is a serious condition, with implications for the person, their family and financial costs to the state providing care. The previously reported prevalence of SIB has ranged from 1.7% to 41%, or 1.7%,23.7% in community studies. There has been little study of remission rate, and incidence has not previously been reported. SIB has been reported to be individually associated with lower ability, autism and communication impairments, but given the inter-relationships between these three factors, it is not known whether they are independently associated with SIB. This study investigates the point prevalence, incidence and remission rates of SIB among the adult population with intellectual disabilities (ID), and explores which factors are independently associated with SIB. Method A prospective cohort study design was used in a general community setting. The participants were all adults (16 years and over) with ID in a defined geographical area. Individual assessments were conducted with all participants. Results The point prevalence of SIB (as defined by DC-LD) was 4.9%, the two-year incidence was 0.6%, and two-year remission rate was 38.2%. Independently related to SIB were: lower ability level, not living with a family carer, having attention deficit hyperactivity disorder, visual impairment, and not having Down syndrome. Other factors, including communication impairment, autism, and level of deprivation of the area resided within, were not related. Conclusions SIB is not as enduring and persistent as previously thought; a significant proportion gains remission in this time period. This should provide hope for families, paid carers and professionals, and reduce therapeutic nihilism. Our study is a first tentative step towards identifying risk-markers for SIB, and developing aetiological hypotheses for subsequent testing. The extent to which SIB may be a relapsing-remitting (episodic) condition requires further investigation, so does further hypothesis-based investigation of factors that might be predictive of incidence of, and remission from, SIB. [source] Adults with intellectual disabilities: prevalence, incidence and remission of aggressive behaviour and related factorsJOURNAL OF INTELLECTUAL DISABILITY RESEARCH, Issue 3 2009S.-A. Cooper Abstract Introduction Aggressive behaviours can be disabling for adults with intellectual disabilities (ID), with negative consequences for the adult, their family and paid carers. It is surprising how little research has been conducted into the epidemiology of these needs, given the impact they can have. This study investigates point prevalence, 2-year incidence and 2-year remission rates for aggressive behaviour (physically aggressive, destructive and verbally aggressive), and it investigates which factors are independently associated with aggressive behaviour. Methods All adults with ID , within a geographically defined area of Scotland, UK , were recruited to a longitudinal cohort. At baseline, assessments were undertaken of demography, lifestyle, supports, development, problem behaviours, disabilities and physical and mental health. These were repeated for a 2-year period. Results At baseline, the participation rate was 1023 (65.5%). After 2 years, the cohort retention was 651 adults. The point prevalence of Diagnostic Criteria for Psychiatric Disorders for Use with Adults with Learning Disabilities/Mental Retardation (DC-LD) aggressive behaviour was 9.8% (95% confidence interval = 8.0,11.8%), 2-year incidence was 1.8%, and 2-year remission rate from all types of aggressive behaviour meeting DC-LD criteria was 27.7%. The factors independently associated with aggressive behaviours were lower ability, female gender, not living with a family carer, not having Down syndrome, having attention-deficit hyperactivity disorder and having urinary incontinence. Incidence of aggressive behaviour meeting DC-LD criteria in adult life is similar to that for each of psychotic, anxiety and organic disorders. Conclusions Aggressive behaviour is common among adults with ID, but contrary to previous suggestions, more than a quarter remit within the short to medium term. This is important knowledge for professionals as well as the person and her/his family and paid carers. There is much yet to learn about the mechanisms underpinning aetiology and maintenance of aggressive behaviour in this population, and exploratory epidemiological investigations such as this have a role to play in progressing research towards further hypothesis testing and trials to influence clinical practice, service development and policy. [source] Development of a measure to assess the impact of epilepsy on people with an intellectual disability: the Glasgow Epilepsy Outcome Scale , Client version (GEOS-C)JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, Issue 3 2006J. Watkins Abstract Background Epilepsy is common in people with intellectual disability, yet clinicians and researchers seldom obtain information directly from the client. The development and preliminary validation of a novel measure for use with people with mild to moderate intellectual disabilities is described. Methods Focus group methods (6 groups; 24 participants) identified issues of concern, and qualitative analysis (NUD*IST) was applied to derive items and themes for a draft scale. Psychometric scale development techniques were then used in a pilot study and subsequent field-testing to investigate validity and reliability (n = 46). Results A total of 148 issues of concern was reduced initially to 52 and then to 42 items using these methods. The derived scale comprised sub-scales reflecting (1) concerns about having seizures; (2) about injury; (3) about issues during; and (4) after seizures; (5) about medication; (6) about what people think; and (7) about daily life. Cronbach , for the Glasgow Epilepsy Outcome Scale , Client version (GEOS-C) was 0.92, and ranged from 0.64,0.81 for the sub-scales. Relatively weak associations (r , 0.40), between client and family carer, staff carer or clinician views, suggests that proxy reports are not good predictors of how people with epilepsy themselves are feeling. Preliminary validation suggests that the GEOS-C can discriminate on variables of clinical importance. Conclusions The GEOS-C complements existing GEOS measures, can be completed in 5,15 min depending upon the level of support required, and may provide a valuable clinical and research tool. Further validational work and appraisal of sensitivity are required. [source] In conversation with a family carerBRITISH JOURNAL OF LEARNING DISABILITIES, Issue 1 2009Andrew Holman ,,The minister was too busy to be able to do an interview about Valuing People Now, instead this is a talk with a parent about her son's story. ,,No one could give a good enough service to Donald. ,,In the end his parents got Direct Payments and organised it themselves, even though it was a lot of work for them. ,,It started to work and he was happy, but then the authority cut his money and they could not afford so many staff. ,,Donald is now doing less again and is being given more drugs. [source] Hospital discharge planning for frail older people and their family.JOURNAL OF CLINICAL NURSING, Issue 18 2009Are we delivering best practice? Aims and objectives., This paper examined the available evidence concerning hospital discharge practices for frail older people and their family caregivers and what practices were most beneficial for this group. Background., Hospital discharge practices are placing an increasing burden of care on the family caregiver. Discharge planning and execution is significant for older patients where inadequate practices can be linked to adverse outcomes and an increased risk of readmission. Design., Literature review. Methods., A review of English language literature published after 1995 on hospital discharge of frail older people and family carer's experiences. Results., Numerous factors impact on the hospital discharge planning of the frail older person and their family carer's that when categorised focus on the role that discharge planning plays in bridging the gap between the care provided in hospital and the care needed in the community, its potential to reduce the length of hospital stay, the impact of the discharge process on family carer's and the need for a coordinated health professional approach that includes dissemination of information, clear communication and active support. Conclusion., The current evidence indicates that hospital discharge planning for frail older people can be improved if interventions address family inclusion and education, communication between health care workers and family, interdisciplinary communication and ongoing support after discharge. Interventions should commence well before discharge. Relevance to clinical practice., An awareness of how the execution of the hospital discharge plan is perceived by the principal family carer of a frail older person, will allow nurses and others involved with the discharge process to better reconcile the family caregivers' needs and expectations with the discharge process offered by their facility. The research shows there is a direct correlation between the quality of discharge planning and readmission to hospital. [source] European perspectives: a carer's viewACTA PSYCHIATRICA SCANDINAVICA, Issue 2001Ursula Brand Objective:,To present the work of the European Federation of Associations of Families of Mentally Ill People (EUFAMI) and discuss issues of concern to family carers. Method:,The problem areas identified and discussed by family carers are presented on the basis of questionnaire surveys organized by EUFAMI. Addresses of national organisations of family carers are included. Results:,A range of problem areas are identified; they include subsistence and welfare payments for the severely mentally ill, some shortage of general hospital units, problems of care co-ordination, issues of respect for family carers and family involvement. Conclusion:,The aim of best practice in mental health care throughout Europe has not yet been reached. Key activities of EUFAMI are aimed at empowerment of families and best practice in psychiatry in Europe. [source] An emotive subject: insights from social, voluntary and healthcare professionals into the feelings of family carers for people with mental health problems,HEALTH & SOCIAL CARE IN THE COMMUNITY, Issue 2 2009Ben Gray BA PhD Senior Research Fellow CCCU Abstract Caring for people with mental health problems can generate a whole range of positive and negative emotions, including fear, disbelief, guilt and chaos as well as a sense of purpose, pride and achievement. This paper explores the emotions of family carers from the perspectives of social, voluntary and healthcare professionals. Sixty-five participants were interviewed, the sample included directors, managers and senior staff from social, voluntary and healthcare organisations. Participants were encouraged to talk in detail about their understanding of the emotions of family carers. Findings highlight a rich understanding of the broad spectrum of carer emotions and the huge emotional adjustments that are often involved. Diagnosis was seen to be imbued with negative emotions, such as fear, anger and denial. However, feelings of hopelessness and desolation were often counterbalanced by feelings of hope, satisfaction and the emotional rewards of caring for a loved one. Participants noted a clear lack of emotional support for family carers, with accompanying feelings of marginalisation, particularly during transitions and especially involving young carers as well as ethnic minorities. By way of contrast, carer support groups were suggested by professionals to be a holistic, effective and economical way of meeting carers' emotional needs. This paper explores the challenge of family carer emotions from the perspective of managers and practitioners and draws out implications for research, policy and practice. [source] High score on the Relative Stress Scale, a marker of possible psychiatric disorder in family carers of patients with dementiaINTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, Issue 3 2007Ingun Ulstein Abstract Objective To compare the scores on the Relative Stress Scale (RSS) with those on the General Health Questionnaire (GHQ) and the Geriatric Depression Scale (GDS), and to establish a cut-off score for RSS in order to distinguish carers with symptoms of psychiatric disorders from those without. Methods One hundred and ninety-four carers of 194 patients suffering from dementia according to ICD-10 were included in the study. Burden of care was assessed by the 15-items RSS, and psychiatric symptoms by means of the GHQ-30 and the 30-items GDS. A case score above 5 on GHQ and above 13 on GDS were used to define carers with probable psychiatric morbidity. Sensitivity (SS), specificity (SP), accuracy and likelihood ratio for a positive test (LR+) were calculated for different cut-points of the RSS. Results Fifty-six percent of the carers had a GHQ score above 5, and 22% had a GDS score above 13. A two-step cluster analysis using 192 of the 194 carers, identified three groups of carers; a low risk group for psychiatric morbidity (LRG), 82 carers with GHQ,,,5 and GDS,,,13; a medium risk group (MRG), 69 carers with GHQ,>,5 and GDS,,,13; and a high-risk group (HRG), 40 carers with GHQ,>,5 and GDS,>,13. The optimal RSS cut-off to distinguish between the LRG and the others was,>,23 (SS 0.72, SP 0.82, accuracy 0.76, LR,+,4.0), whereas the optimal cut-off to separate the HRG from the others was,>30 (SS 0.74, SP 0.87, accuracy 0.84, LR,+,5.7). Conclusion The RSS is a useful instrument to stratify carers according to their risk of psychiatric morbidity. Copyright © 2006 John Wiley & Sons, Ltd. [source] The communication challenges faced in adopting a palliative care approach in advanced dementiaINTERNATIONAL JOURNAL OF NURSING PRACTICE, Issue 5 2009Amanda Johnson RN DipT(Ng) MHScEd This paper discusses one aspect from the findings of an Australian study aimed at understanding the needs of people with advanced dementia. Specifically, this paper focuses on the communication issues that might potentially inhibit the implementation of a palliative care approach for a person with advanced dementia in a residential aged care facility (RACF). Six focus groups consisting of 34 participants and 24 semistructured interviews were conducted. Participants were drawn from palliative care specialty staff, palliative care volunteers, designated aged or dementia specialist staff from an area health service, general practitioners, RACF staff and family carers. The findings show communication issues identified by the participants were a significant factor impacting on their capacity to adopt a palliative care approach in caring for people with advanced dementia. The findings support the need for education, skill development and networking to occur among the key providers of care in RACFs to ensure the provision of ,best practice' palliative care to residents with advanced dementia and their families. [source] Risk management dilemmas in dementia care: an organizational survey in three UK countriesINTERNATIONAL JOURNAL OF OLDER PEOPLE NURSING, Issue 2 2009Charlotte L. Clarke PhD Aims and objectives., The overall project aimed to understand the variability of the construction of risk in dementia care from the perspective of the person with dementia, family carers and practitioners with the intention of developing negotiated partnerships in risk management. This paper focuses on the objective of identifying the understandings of risk by practitioners. Background., Risk management can result in a ,safety first' approach to care practices, but this may be disempowering for people with dementia. Design., This paper describes the results of the first stage of the study: a survey to service managers or equivalent in health, social and voluntary sector care organizations in three countries of the UK. Methods., Data from this stage was collection by postal questionnaire (n = 46). Results., Risk was portrayed as a multidimensional concept and clustered around three themes: (1) Risk and Independence, (2) Risk and Resource, and (3) Organizational Risk Management. Conclusions., Very wide understandings of risk are identifiable, ranging from avoidance of physical harm through to managed risk taking to improve quality of life, and to an appreciation of the impact of organizational and professional patterns of behaviour resulting in harm to the person with dementia. Relevance to clinical practice., Obtaining information about the perspectives of others may help to illuminate some of the dilemmas experienced by staff in this study, and the development of risk assessment frameworks may assist staff to resolve some of these. [source] Nursing needs of acutely ill older peopleJOURNAL OF ADVANCED NURSING, Issue 5 2003Karen Hancock BSc PhD Background., Investigating older acutely ill hospitalized patients' nursing needs and quality of care is paramount, given the growing pressure on nurses to provide increasingly intensive levels of care to a growing older population while at the same time working with reduced staffing levels. Aims., The aims of this study were to determine: (1) important aspects of nursing care as perceived by older patients, their family member/carer who observed care during hospitalization, and nurses; (2) satisfaction levels of patients, family/carers and nurses on nursing care received; and (3) mismatches between nursing care priorities and satisfaction with nursing care. Methods., Two hundred and thirty-two acutely ill patients aged over 65 years, 99 carers/family members and 90 nurses completed the Caregiving Activities Survey, which measures importance of and satisfaction with various aspects of nursing care. Qualitative data, which qualified responses to survey items, were also obtained from participants. Results., Patients, carers and nurses perceived that carrying out doctors' orders was the most important aspect of nursing care, followed by physical care, psychosocial care and discharge planning. Nurses and carers rated physical care, psychosocial care and discharge planning more highly than patients. Physical care was rated highly by patients in terms of importance, but rated moderately in terms of satisfaction. Carers' and patients' ratings of satisfaction with physical care were lower than nurses' ratings of opportunities to provide it. The importance of discharge planning was rated highly by nurses but all groups were only moderately satisfied with this aspect of care. Study limitations., The findings do not apply to acutely ill older patients with confusion, mental illness or more than early stage dementia. Conclusions., Patients, nurses and family/carers were generally in agreement about the relative importance of particular aspects of nursing care. Nurses may need to communicate more effectively with older patients and their family carers about the particular roles they will play during the patient's hospital episode, the expectations they have of patients in the process of healing and recovery, and the reasons for the actions they take in aiding this process. The findings are useful in making nurses more aware of the expectations and needs of older hospital patients and their carers. They provide evidence for developing both new models of nursing care for this patient group, and nursing education programmes. [source] South Asian patients' lived experience of acute care in an English hospital: a phenomenological studyJOURNAL OF ADVANCED NURSING, Issue 1 2000Vasso Vydelingum PhD BSc(Hons) PG DipEd RN RHV DN South Asian patients' lived experience of acute care in an English hospital: a phenomenological study Studies on utilization of hospital services by South Asian patients in the United Kingdom have consistently demonstrated levels of dissatisfaction with care in relation to meeting religious and cultural needs, although there are few studies on minority ethnic patients' utilization of acute hospital services. This study aimed to describe and interpret from the consumer's view the ,lived experience' of acute hospital care from the perspectives of South Asian patients and their family carers. The purposive sample of 10 patients and six carers consisted of 13 females and three males (five Hindus, six Muslims and five Sikhs) who were interviewed at home 2 to 3 weeks after discharge from hospital. Data were gathered through semi-structured interviews that were tape recorded and transcribed. A phenomenological approach was used, and data were analysed using the principles of Heideggerian hermeneutics. Five themes were identified, ranging from feelings of satisfaction with care, unhappy about the service, fitting-in strategies and post-discharge coping mechanisms. Patients seemed to want to cause as little disruption as possible to the ward environment and tried to fit in to what they refer to as an ,English place'. The findings, although not generalizable, offer important insights into how South Asian patients survive their journey through their hospital stay and have implications for the provision of nursing care for minority ethnic patients. [source] The Quality of Life of Family Caregivers of Adults with Intellectual Disabilities in TaiwanJOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES, Issue 3 2007Yueh-Ching Chou Background, Taiwanese family carers of people with intellectual disabilities not only suffer from long-term stress but also need to cope with social difficulties. The aim of this study is to evaluate the quality of life (QOL) among family carers of people with intellectual disabilities. Materials and methods, A census interview survey was conducted in Hsin-Chu City in Taiwan and included the primary family caregivers of 792 adults with intellectual disability who were living with their families. The survey packet contained the WHOQOL-BREF Taiwan-version scale with four core domains and the activities of daily life/instrumental activities of daily life (ADL/IADL) scales. Results, The mean score for ,physical' was highest and that for ,environment' was lowest. The strongest predictors of caregivers QOL were the caregiver's health status, their family income and the level of severity of the intellectual disability of the adult. Conclusions, The results of the study support the need to expand services and individualize support to families of adults with intellectual disability living in family homes. [source] Developing a Mental Health Guide for Families and Carers of People with Intellectual DisabilitiesJOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES, Issue 2 2007Anastasia Gratsa Background, Although there is already information available about caring for someone with a mental health problem, there is very little written for families and carers of people with intellectual disabilities. Materials and methods, This paper describes the development of a Guide as such a resource. The consultation stage involved interviews and focus groups with families, service users and paid carers (n = 20) to highlight their needs and preferred format. Additional carers (n = 12) completed structured questionnaires to evaluate the Guide. Results, The initial consultation showed that an easily accessible and user-friendly information resource was needed. The evaluation showed that family carers were satisfied with the Guide, finding it easy to read and covering most of the information required. However, they did highlight areas that needed further detail. Conclusions, The involvement of carers in the development of such resources is essential, emphasizing the benefit of carers' knowledge and experience to professionals. [source] Levels of Psychological Distress Experienced by Family Carers of Children and Adolescents with Intellectual Disabilities in an Urban ConurbationJOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES, Issue 2 2004Eric Emerson Background The aim of the present study was to identify factors associated with the level of psychological distress reported by family carers of children with intellectual disability living in a large urban conurbation. Method Information was collected by postal questionnaire (or interview for family carers who did not have English as their first language) from the family carers of 408 children with intellectual disability (31% of all children within the area administratively identified as having an intellectual disability). Results Results indicated that 47% of primary carers scored above the threshold for psychological distress on the GHQ and that scoring above the threshold was strongly related to the emotional and behavioural needs of the index child and South-Asian ethnicity and moderately associated with the severity of the child's delay in communication. Conclusions The rates of psychological distress (47% overall, 70% among South-Asian carers) were markedly higher than that found in previous studies of carers supporting a child with intellectual disabilities. It is suggested that these elevated rates of psychological distress may be mediated by socio-economic deprivation. [source] Promoting the health of people with chronic obstructive pulmonary disease: patients' and carers' viewsJOURNAL OF CLINICAL NURSING, Issue 3-4 2010Ann Caress Aims and objectives., The aim of this study was to generate in-depth insights into patients' and family members' understanding of the causation, progression and prevention of chronic obstructive pulmonary disease and the role of health promotion with this population. In particular, we were interested in identifying the ways patients and family members considered that they could maximise their (patients') health, in the presence of this disease. Background., Chronic obstructive pulmonary disease is highly prevalent and a significant cause of morbidity and mortality, impacting on quality of life and healthcare expenditure. Health promotion is, therefore, an important consideration. There are few examples in the literature of health promotion programmes for this population, including those directed at smoking cessation, which also focus on the family or significant others. Design., An exploratory, descriptive design was employed. Method., Semi-structured, audio-recorded interviews were conducted with 14 patients and 12 family caregivers. Interviews were transcribed verbatim and thematically analysed using content analysis procedures which captured the meaning of the data. Results., The three main themes were ,health promotion: what's that?', ,community resources for health promotion' and ,it wasn't just the smoking'. Many participants seemed unaware that their health might benefit from a healthier life style and provided little spontaneous information on any activities they carried out to maintain or improve their health. Conclusions., This study highlighted a dearth of health promoting activity amongst people affected by chronic obstructive pulmonary disease. The reality for most patients was to manage the day-to-day demands that the symptoms of the disease imposed on them. Our data suggest that a more wide-ranging approach, encompassing aspects of health promotion, might be welcomed by many patients and their family carers. Relevance to clinical practice., The findings from this study highlight gaps in patients' and carers' understanding of the potential role of health promotion in chronic obstructive pulmonary disease and areas for intervention by health professionals. With the increase in smoking rates of women and predicted future increases in chronic obstructive pulmonary disease, it is imperative that health professionals find effective ways to provide support and health promotive care for patients and families. [source] A review of the information and support needs of family carers of patients with chronic obstructive pulmonary diseaseJOURNAL OF CLINICAL NURSING, Issue 4 2009Ann-Louise Caress Aims and objectives., The objectives of this narrative review were to identify: (1) The information and support needs of carers of family members with chronic obstructive pulmonary disease; (2) appropriate interventions to support carers in their caregiving role; (3) information on carers' needs as reported in studies of patients living with COPD in the community. Background., Chronic obstructive pulmonary disease is a major health problem in the UK resulting in significant burden for patients, families and the health service. Current National Health Service policies emphasise, where medically appropriate, early discharge for acute exacerbations, hospital-at-home care and other models of community care to prevent or reduce re-hospitalisations of people with chronic conditions. Understanding carers' needs is important if health care professionals are to support carers in their caregiving role. Design., A narrative literature review. Methods., Thirty five papers were reviewed after searching electronic databases. Results., Few studies were identified which addressed, even peripherally, carers' needs for information and support, and no studies were found which described and evaluated interventions designed to enhance caregiving capacity. Several studies of hospital-at-home/early discharge, self care and home management programmes were identified which included some information on patients' living arrangements or marital status. However, there was little or no detail reported on the needs of, and in many cases, even the presence of a family carer. Conclusions., This review highlights the dearth of information on the needs of carers of chronic obstructive pulmonary disease patients and the need for future research. Relevance to clinical practice., There is little research based knowledge of the needs of carers of chronic obstructive pulmonary disease patients and interventions to assist them in providing care. This knowledge is critical to ensure that carers receive the information they need to carry out this role while maintaining their own physical and emotional health. [source] The role of community staff in care home placement in SwedenJOURNAL OF CLINICAL NURSING, Issue 4 2002J. SANDBERG BSc ,,The role of community staff in placing a relative in a care home is a relatively unexplored area of practice. ,,Interviews with a variety of community staff in Sweden suggest that they play a significant role in helping family carers, particularly spouses, research the decision about the need for placement. ,,This role can include recognition that placement is required (seeing the need), initiating and sustaining discussions about placement (sowing the seed and nurturing the seed) and legitimating the decision. ,,However, once the decision has been made relatively little attention is given to the emotional consequences of the move and attention is focused largely on instrumental aspects. ,,Despite showing sensitivity in the decision-making phase, community staff could do more to help carers deal with the guilt they experience and to initiate contact with the care home. [source] Dementia and risk: contested territories of everyday lifeJOURNAL OF NURSING AND HEALTHCARE OF CHRONIC ILLNE SS: AN INTERNATIONAL INTERDISCIPLINARY JOURNAL, Issue 2 2010Charlotte L Clarke DSocSc clarke cl, keady j, wilkinson h, gibb ce, luce a, cook a & williams l (2010) Journal of Nursing and Healthcare of Chronic Illness 2, 102,112 Dementia and risk: contested territories of everyday life Aims., The project aimed to understand the construction of risk in dementia care from the perspective of the person with dementia, family carers and practitioners with the intention of developing negotiated partnerships in risk management. Background., This paper addresses a gap in the literature by embedding constructions of risk within everyday events and social contexts, and communicates such constructions through the voices of people with dementia, carers and practitioners. Method., This symbolic interactionalist study involved data collection by interview with 55 people with dementia (sometimes twice), and their nominated carer and practitioner. The sample was drawn from three regions of the United Kingdom. Data were collected during 2004. Conclusions., Five ,contested territories' of everyday living with dementia are outlined in this paper: friendships, smoking, going out, domestic arrangements, and occupation and activity. These contested territories are purposeful and allow for sense making, maintenance of self, claiming and relinquishing decision making, and creating purpose(lessness) in people's lives. Relevance to clinical practice., Assessing and managing risk in a way that respects the dynamics and purposes of contested territories will support care that is person centred, and moreover respectful of the relationships that contribute to maintaining the individual's sense of self and purpose. [source] Family Carers of Adult Persons with Intellectual Disabilities on the Island of IrelandJOURNAL OF POLICY AND PRACTICE IN INTELLECTUAL DISABILITIES, Issue 2 2006Steve Barron Abstract, Many families provide lifelong support to their relative with an intellectual disability. However, relatively little information is available for national populations on the characteristics of the people for whom these families care and the supports they receive or need. A database of all persons in receipt of intellectual disability services has been operating in the Republic of Ireland since 1995 and records details of those living with family carers. In Northern Ireland, regional databases provide similar information. Using both sources, data were obtained on over 12,500 people living with family carers; half of whom lived with two parents, around 30% with a lone parent, and just under 20% with another relative. More people in Northern Ireland were identified as living with family carers, which was attributed mainly to less available residential alternatives. Only a minority of carers received respite breaks and domiciliary supports although higher proportions required them. The authors conclude that family care arrangements have received relatively little attention within government policy making, and hence service provision has been largely reactive. Future research should focus on the changing needs of carers over time and how they can be better supported in their role. [source] Views of People with Intellectual Disabilities of Their Present and Future Living ArrangementsJOURNAL OF POLICY AND PRACTICE IN INTELLECTUAL DISABILITIES, Issue 3-4 2004Roy McConkey Abstract, To determine personal perceptions and preferences of present and potential living arrangements, 180 adults with intellectual disabilities were recruited to participate in 20 focus groups held across Northern Ireland. About half were living with family carers and the balance in a range of other types of accommodations. Verbal probing and video clips were used to elicit views on four different living options (residential homes, small group homes, supported living, and living with a nonrelated family). Four personal preference themes emerged that were common to all participants irrespective of where they lived: having their own bedroom, participating in household activities; having access to community activities, and maintaining contact with family and friends. Adults living on their own or in supported housing valued their independence and having access to support staff, whereas adults living in residential homes spoke of the importance of relationships with co-residents and staff. Overall, most of the adults were content with their present situation, although small group homes and supported living arrangements were the most popular alternatives to living with their families. The discussion group process was useful in eliciting comments and offering participants a chance to reflect on their personal perceptions of housing options. Overall, the findings point to the need for greater consideration of personal preferences in home option choice-making by housing and services providers. [source] In Conversation with Helen Dorr and Vicki RaphaelBRITISH JOURNAL OF LEARNING DISABILITIES, Issue 4 2006Andrew Holman Accessible summary ,,There is a new National Family Carer Network putting the views across of family carers. ,,They believe family carers have often been given a bad name. ,,Family carers now have more places on the Learning Disability TaskForce, but will it do any better than before? ,,New laws about who can make decisions will help, if they don't imply that parents are always bad. ,,The future for the Network is unclear. [source] Support for family carers of children and young people with developmental disabilities and challenging behaviourCHILD: CARE, HEALTH AND DEVELOPMENT, Issue 2 2006P. McGill Abstract Background, This study gathered information about perceptions of family carers of children and young people with developmental disabilities and challenging behaviour of the help, support and treatment received from services and professionals. Methods, A total of 66 family carers completed postal questionnaires on the nature of, and their satisfaction with, services, professional help and advice received in respect of their family member's challenging behaviour. Results, Most carers were dissatisfied with support and services received. Almost half reported receiving no professional input or none that was helpful. Over two-thirds reported receiving respite care but, in a third of these, the child had been excluded because of challenging behaviour. Conclusions, Families of children with challenging behaviour often do not receive services and supports that they find helpful. Treatments provided are not always evidence based. The ,rationing' of services creates a danger of inequality of access. We need a more proactive approach to identifying and meeting the need for family support. [source] | |||||||||||||||||||||||||