Caring as worrying: the experience of spousal carers

BACKGROUND: With the emerging focus on home-based care, there is an increasing demand on spouses to look after their chronically ill partners at home. The theoretical aspects of caring have been much discussed in the literature, but the pragmatic aspects have received less attention. Carer stress has been explored, but little has been written about the meaning of caring to informal carers. AIM: The aim of this paper is to report one of the major themes that emerged from a study conducted between 1998 and 1999 to explicate the meaning of caring from the perspective of spousal carers for people with multiple sclerosis in order to shed light on and understand the challenges and demands these carers encountered. METHODOLOGY: An interpretive phenomenological approach was used to describe spousal carers' experiences of caring for their partner. Ten spousal carers of people with multiple sclerosis participated. Data were collected through unstructured in-depth interviews and analysed by the method of hermeneutic analysis. FINDINGS: This paper presents one of the major themes identified: 'caring as worrying'. While the meaning of caring that emerged from this theme supports many of the philosophical understandings of caring as discussed in the literature, worrying as a care responsibility provides a further insight. Caring as worrying describes caring as a complex emotional relationship of responsibility in these participants. They worried about their partners, their relationships with their partners and their future. They also worried about their own health, institutional care, and lack of government support. CONCLUSION: Spousal carers' worries have significant implications for health care professionals. The findings provide insight into the concerns and worries the carers of people with multiple sclerosis face when caring for their chronically ill partners at home.     

Schizophrenic patients' image of their carers and the carers' image of their patients: an interview study

Schizophrenic patients' image of their carers and the carers' image of their patients: an interview study
In order to gain a deeper understanding of how long-term adult schizophrenic patients perceive themselves, their carers and the care they receive in relation to how the carers perceive their patients, themselves and the care they provide, a narrative interview study, analysed using a method inspired by Ricoeur's philosophy, was performed. The main findings of this study were that both patients and carers who saw the patients as a subject stressed the confirming relation between the parties as an essential element of the care. The carers who saw the patient as an object did not share this opinion. They had a more restricted point of view, seeing their goal only as providing a variety of care activities and keeping the schizophrenic patients at the hospital. This study also points out that confirmation is provided in the meeting between patient and carers.     

Challenges in home-based palliative care in Norway: a qualitative study of spouses' experiences

Introduction: Issues around patients' preferred place of care and death are taking greater precedence of late. However, little is known about patients' and carers' experiences of palliative care in the home setting. This study explored carers' views of what determines the quality of home care at the end of life. Methods: The study made use of systems theory, the purpose of which is to obtain a broad understanding of a phenomenon by looking at the relations between its individual elements. Seven carers (spouses) of people who died having received home-based palliative care in three different municipalities in Norway were interviewed. Results: None of the participants had planned to give or receive palliative care in the home. However, they did not regret that the home had been the place of care. Factors deemed important to acheiving the best possible home-based palliative care included around-the-clock help, holistic care, and affirmation of the significance of the carer's role. Conclusion: Health professionals should be more forthcoming in discussing the benefits and challenges of home-based palliative care and make greater acknowledgment of the carer's role. Treatment plans may be helpful in acheiving these goals.     

Community-based care in cystic fibrosis: role of the cystic fibrosis nurse specialist and implications for patients and families

Summary

Improved survival for cystic fibrosis has rapidly increased over the past four decades, with patients now living well into adult life. With changes in the structure of the National Health Service and the formation of provider units and general practitioner (GP) fund-holding practices, it is important to strengthen links between the hospital and community teams to ensure that the CF patient receives adequate care. Increasingly, treatment is being carried out at home, and this emphasis on home-based therapy demands that parents/carers and patients must acquire the skills and knowledge of complex therapies in order to optimize health. It is the role of the CF nurse specialist (NS) to educate those who will deliver the care, co-ordinate the provision of services at home, liaise with the CF team and community health-care professionals and to support the patient and their carers.     

Lung cancer health care needs assessment: patients' and informal carers' responses to a national mail questionnaire survey.

The objective of this study was to describe patients' and informal carers' perceptions of care received and services offered following a diagnosis of primary lung cancer. We prepared a prospective, national, mail questionnaire survey of 466 patients with a diagnosis of primary lung cancer and a lay carer of their choice. The setting was 24 randomly chosen hospitals throughout the UK, from a range of urban (n = 11) and rural settings (n = 13). The majority (76%/159) of responders were recipients of care from cancer units. Two hundred and nine patients (45%) with primary lung cancer and 70 (15%) lay carers completed questionnaires. The main results that we found were that key areas of unmet need were most apparent during periods away from acute service sectors, with as few as 40% of patients reporting having received as much help as they needed from community services. The greatest onus of care for patients fell to lay carers, but only 29% of patients identified their lay carers as having needs in relation to their illness. Where patients received all their diagnostic tests in one hospital they were significantly more likely to wait less time between first seeing their general practitioner (GP) and being told their diagnosis (P = 0.0001) than patients who had to attend more than one hospital during their diagnostic work-up period. Fifty per cent of patients reported experiencing some degree of breathlessness even at rest, but only 15% reported having received any advice on living with it. Less than a quarter (23%) of hospital consultants identified anxiety as a key problem for patients with lung cancer, but 66% of patients identified it as such. Hospital staff largely overlook the needs of informal carers, who derive support from a small, mainly community oriented group of professionals, but accessing help is problematic and is dependent on local resources and a need to be proactive. Our conclusions are that developments in service provision for patients with lung cancer and their informal carers need to focus on six key areas: development of strategies to encourage patients to present earlier to their GP; ongoing evaluation of rapid diagnostic clinics; development and evaluation of a lung cancer care coordinator role; evaluation of innovations in delivery of nursing care in the community; development of local guidelines to facilitate equitable access to palliative care and social services; and evaluation of supportive strategies targeted at lay carers.     

An exploration looking at the impact of domiciliary and day hospital delivery of stroke rehabilitation on informal carers

OBJECTIVES: To explore the impact of two methods of post-hospital stroke rehabilitation on both carers' perceptions of the health services offered and their quality of life. SETTING: East Dorset Health Authority. SUBJECTS: Forty-six informal carers were recruited from a sample of 106, initially identified from stroke patients participating in a larger randomized controlled trial. DESIGN: Qualitative methods. METHODS: Semi-structured interviews were used at baseline and six months to explore carers' perception of a good therapy, the advantages and disadvantages of the different services and their fulfilment with the services. In-depth thematic analysis was carried out to explore the impact of the two different methods of service delivery on carers' quality of life. RESULTS: Day hospitals provided carers with respite opportunities, whilst domiciliary stroke teams provided carers with better educational opportunities to be involved in therapy. No qualitative difference was found in the impact that the different services had on carers' quality of life, which were influenced by factors such as the degree of disruption that caring had on their lives, the loss of a shared life and the availability of social support. Ultimately, carers saw the services as providing benefit for survivors and not themselves. CONCLUSIONS: Domiciliary stroke teams provided informal stroke carers with skills that could help improve postdischarge stroke rehabilitation amongst stroke survivors. Informal carers also benefited from the respite elements of day hospital. A mixed model using both domiciliary care and day hospital care, could provide carers with the benefits of education, convenience and respite.     

Home percutaneous endoscopic gastrostomy feeding: perceptions of patients, carers, nurses and dietitians

AIM: This paper is a report of a study to compare the perceptions of adult patients, family carers, nurses and dietitians regarding home percutaneous endoscopic gastrostomy feeding. BACKGROUND: Healthcare professionals have a major role in patient selection for gastrostomy placement and the provision of aftercare but it is not clear if patients, their carers and healthcare professionals have similar perceptions of the initiation and delivery of feeding and of the care in general. METHOD: A cross-sectional mixed-method study using purposive sampling, semi-structured interviews and questionnaires was performed. Interviews were undertaken during 2005 with adult patients and carers of adults receiving home feeding. A questionnaire containing comparable questions was distributed to the lead district nurse and dietitian providing the individual patient's care. Binomial regression was used to analyse any differences in perceptions across the groups of respondents. RESULTS: Nurses and dietitians had similar perceptions of gastrostomy feeding in adults. Family carers' perceptions matched those of professionals more closely than did those of patients. The greatest difference in perceptions was between patients and their family carers. Respondents' views about success of feeding and the appropriateness of the feeding regimen were similar, but greater differences existed regarding quality of life, withdrawal of feeding and choice in decision-making about tube placement. CONCLUSION: There is a need for increased patient and carer involvement in decision-making and for sufficient, appropriate information to facilitate informed decision-making. Practitioners who involve carers in decision-making, where patients lack capacity, need to be aware that carers may not represent the views of patients.     

Carers as equal partners in care planning

This was a pilot study that assessed the process and outcome of an initiative whereby carers of patients with dementia were given a designed package of documentation to hold at home. The research involved 20 carers of patients with dementia having carer-held records at home for a 6-month period. The aims of the research were: to assess carers' satisfaction with the system; to evaluate the actual use made of the documents by both carers and professionals; to assess the suitability of the document design; and to assess carers' roles as partners with professionals in care planning via use of the record. Both quantitative and qualitative data were obtained by use of a questionnaire that used quantitative scales of measurement and allowed carers to express views. The results showed that carers reported benefits of the system and felt more empowered and valued by service providers because of use of the documentation. However, there were design faults in the document itself, which were addressed as a result of the pilot study. A need for preparatory and on-going education of clients and professionals was also identified regarding the best use of the document for all parties. A follow-up three-year longitudial study is planned in which health outcomes of the use of carer-held records will be quantitatively measured. The problems identified in this pilot study will be addressed before the launch of the main study; several potential confounding variables have been recognized and can be controlled.     

Capturing the concealed: Interprofessional practice and older patients' participation in decision-making about discharge after acute hospitalization

The aim of this paper is to investigate ways in which the dynamics of interprofessional work shaped older patients' "participation" in decision-making about discharge from acute hospital care in a medical directorate of a District General Hospital in Scotland. Twenty-two purposively selected older patients and their key professional hospital carers in three different ward environments participated in the study. An ethnographic approach was adopted, involving semi-structured interviews with patients and staff combined with rigorous observation of the practical context for staff and patient interactions during the discharge planning process over a 5-month period. Patients' and staff's understanding of "decision-making" and their priorities for discharge were different, but patients' perspectives fragmented and became invisible. Care routines, which centred around assessments and the decisions that flowed from these tended to exclude both staff and patients from active decision-making. Research and practice on patient involvement in discharge decision-making needs to focus on the organizational context, which shapes patients', unpaid carers' and staff's interactions and the dynamics by which some views are privileged and others excluded. Procedurally driven care routines and their impact on patients', carers' and staff's opportunity to actively engage in decision-making should be re-considered from an empowerment perspective.     

Survey of carer satisfaction with the quality of care delivered to in-patients suffering from dementia

Quality assurance in British National Health Service provision stresses the importance of taking account of the consumer's viewpoint Elderly patients with dementia are not always able to contribute usefully to satisfaction surveys Therefore, their carers' views were sought in order to assess the quality of services offered to this client group Forty-one carers of patients discharged from the eight wards for the elderly mentally ill in Leicestershire, England, were randomly selected Individual focused interviews were conducted in carers' own homes Both quantitative and qualitative data were obtained by use of a questionnaire designed to tap the patients'/carers' experiences from preadmission, through hospital stay to post-discharge Interviewees were asked to describe their favourable/unfavourable impressions of, and reactions to, all aspects of hospital care These interviews were tape-recorded Analysis of the data included quantitative measurements of scale ratings Grounded theory was used to analyse qualitative data A wealth of information was uncovered using this research technique Much that was positive about the service was elicited However, carers highlighted areas where they felt the quality of care could be improved within all the foci discussed Twenty-two recommendations for quality improvements in service provision were made in the report as a result of this survey     

The relationship between patient characteristics and carer psychological status in home palliative cancer care

Goals Despite being both providers and intended recipients of care, informal carers in cancer palliative care report high levels of distress and unmet needs. In order to develop supportive care strategies, this analysis aimed to identify which patient characteristics contribute to carer psychological distress and which coping strategies carers employ.Patients and methods Informal carers attending two home palliative care services gave cross-sectional data regarding patient characteristics and their own psychological status using standardised measures. Multivariate analyses were performed for each dependent carer psychological measure, with patient characteristics as independent variables (adjusted for carer age and gender).Main results Forty-three carers participated. Greater patient distress was associated with carer anxiety (b value: magnitude of the effect) (b=0.31, p=0.07), and both patient psychological status (b=0.37, p=0.02) and pain (b=0.29, p=0.09) were associated with carer psychological morbidity. Carer burden was associated with patient psychological distress (b=0.35, p=0.03) and pain (b=0.29, p=0.08). Carer avoidance/emotion-focused cognitive coping strategies were associated with patient physical function (b=0.34, p=0.04), and cognitive problem-focused coping was associated with patient symptoms (b=0.28, p=0.06) and physical function (b=0.29, p=0.05).Conclusions Adequate provision of patient psychological interventions and effective pain education and control are needed in order to improve carers' psychological health. Patient characteristics are associated with apparently opposing forms of carers' coping (i.e. both avoidance and engagement), demonstrating the importance of interventions addressing a range of coping responses. Further research is needed to understand why carers employ problem-focused coping in response to symptoms but not to pain. Evidence-based interventions for informal carers are urgently needed but must be delivered in the context of optimal patient pain and symptom control.     

'Mastering an unpredictable everyday life after stroke'--older women's experiences of caring and living with their partners

Scand J Caring Sci; 2012; 26; 587–597 ‘Mastering an unpredictable everyday life after stroke’– older women’s experiences of caring and living with their partners Introduction: The shift from older persons living in institutions to living in the community naturally affects both the older persons and their partners. The informal care is often taken for granted, and the research that focuses on the diversity of older female carers needs is scarce. Aim: To explore and learn from the older women how they experience their life situation and formal support as carers of their partners after stroke and to suggest clinical implications. Method: The design of the study is qualitative being based on the focus group method. Sixteen carers, median age 74 years (range 67–83), participated in four focus group discussions, which each met once for not more than 2 hours. Findings: The discussions resulted in one comprehensive theme; ‘Mastering an uncertain and unpredictable everyday life’. Three subthemes emerged from the material: ‘Living with another man’ where the carers discussed not only the marked change in their partner’s personality, but also the loss of a life‐companion and their mutual intellectual contact; ‘Fear of it happening again’, comprising the carers’ experiences of fear and confinement, of always having to be ready to help and of being trapped at home; ‘Ongoing negotiation’, referring to the carers’ struggling and negotiating not only with their partners, but also with themselves and formal care for time to themselves. Conclusion: This study helps us to understand how these older women tried to master an uncertain and unpredictable life. Their life had changed radically; now they were always on call to help their partners and felt tied to home. The results draw attention to the carers’ need for time to themselves, a greater knowledge of stroke and continuous support from formal care.     

A survey of the perspectives of specialist palliative care providers in the UK of inpatient respite

One of the major reasons for admission of patients to hospital in late stage disease is the inability of carers to continue to provide care at home. Specialist palliative care services have typically admitted patients for acute symptom control, terminal care and respite care to benefit them and their carers. This paper reports the results of a cross-sectional survey of inpatient respite care provision provided by specialist palliative care services and hospices in the UK. A structured questionnaire was mailed to 242 clinical services managers listed in the Hospice Information Directory in 2003. A 69% response rate was achieved. The questionnaire explored the nature of respite services, their purpose, organization, delivery and examined definitions used. The analysis indicated that 80% of the sample provided inpatient respite care. Most inpatient respite admissions were planned, of fixed duration (7-14 days) and were intended to benefit patients and carers. There was some evidence that respite provision was regarded as a lower priority than admissions for symptom control and terminal care, and that patients' needs were prioritized over those of carers. Only 10% of services conducted regular, routine audit, with very few seeking the views of service users. Findings suggest that carers' needs and wishes are not prioritized by specialist palliative care services offering inpatient respite, which may mean that they find it difficult to maintain their caregiving roles over longer disease trajectories or in the face of overwhelming demands.     

Hospital experiences of young adults with congenital heart disease: divergence in expectations and dissonance in care.

BACKGROUND: Despite increasing survival for adults with congenital heart disease, little is known about hospitalization for young adult patients with this disease and for their families. Because of the complexity of the disease and its management during the life span, young adults are often hospitalized on both pediatric and adult units during a stay in the hospital. OBJECTIVES: To explore the experience of hospitalization of young adults with congenital heart disease, the experience of their families, and the views of the nurses who cared for these patients and to generate substantive theory on interactions between patients, patients' families, and nurses. METHODS: Semistructured interviews and naturalistic observations were conducted with young adults with congenital heart disease (mean age, 28.6 years), their family members, and nurses who cared for the patients during hospitalization (N=34). Dimensional analysis was used to analyze interviews and field notes from observations. RESULTS: A grounded theory was derived, explaining how the hospital context and relationships between patients, patients' families, and nurses affect patients' hospital experiences. Expectations differed among the groups, leading to dissonance in care, as exemplified by role confusion and power struggles over control of care. This dissonance resulted in interpersonal conflict, distrust, anxiety, and dissatisfaction with the care and caring experiences. CONCLUSIONS: Changes in hospital units, a better understanding of the healthcare needs of young adults with congenital heart disease, and acknowledgment of the expertise of patients and patients' families are needed to improve nursing care for these patients and their families.     

Bereaved carers' views of a hospice at home service

INTRODUCTION: In recent years, there has been an increase in specialist palliative care services in the home. Despite this, there have been relatively few published evaluations of such care. METHODS: This is a qualitative study which used semistructured interviews to explore bereaved carers' views and experiences of a hospice at home (HAH) service in the East Midlands, UK. Eleven interviews were conducted and analysis followed the framework approach. RESULTS: Carers' views were divided into four themes: caring for someone at home; formal care provided by HAH; access to out-of-hours care; and provision of specialist equipment. CONCLUSIONS: Bereaved carers generally gave very positive accounts on care delivered by the HAH service. Shortcomings identified were the provision of out-of-hours care and the untimely supply and removal of specialist equipment. It is suggested that bereaved carers provide useful insights for qualitative evaluations of end-of-life services delivered in the home.     

Developing services for the carers of young adults with early-onset psychosis--listening to their experiences and needs

The care-giving experience of carers of young adults with early onset psychosis is relatively unexplored. New carers are less likely to be engaged with local services for carers and families, than those more established in their caring role. Understanding the experience of these carers provides some valuable insight into the value of caring and in guiding service development. This paper reports on a study designed to explore carers' experiences of caring for a young adult diagnosed with a first psychotic episode and their needs in relation to the development of an early intervention for psychosis service. A phenomenological approach was used. Eleven carers were given a semi-structured interview in their own homes. All of the carers in the study had a son with early onset psychosis. The outcome revealed that all carers were providing a comprehensive range of practical, emotional and financial support for their son including initiating and sustaining engagement between them and local mental health services. Many carers were felt to be invisible and silent partners in care and felt under-valued by mental health services.     

The patient's view of need and caregiving consequences: a cross-sectional study of inpatients with severe mental illness

This cross-sectional study was conducted across inpatient facilities of a metropolitan mental health service in Sydney, Australia. Given shorter lengths of stay in acute inpatient facilities, it is important to ascertain differences between patients' and carers' perceptions of need and support in order to guide delivery of care in the community. The objectives were to: (1) assess the needs of patients recently admitted to hospital and ascertain the level of carer involvement while in hospital; (2) compare the degree of agreement between patients' and carers' perceptions of need and caregiver burden; and (3) determine the relationship between levels of need and carer burden prior to hospitalization. Over a 2-month period, consecutive patients (n = 200) were interviewed using the Camberwell Assessment of Need Short Appraisal Schedule and a modified version of the Involvement Evaluation Questionnaire to assess basic needs and patient perceptions of caregiver burden, respectively. Of the 200 patients interviewed, 68% (n = 135) identified a carer. Patients with schizophrenia had most met needs, those with affective disorders had most unmet needs and patients with other diagnoses recorded the lowest number of needs overall. The level of agreement between patient and carer perceptions of need was low, possibly because of confusion about the definition of need or different views about the support required to fulfil a need. Patients underestimated the consequences of caregiving, especially the impact of strained atmosphere, global burden, worrying about their future and encouragement to undertake an activity, indicating that carers were more burdened than patients perceived them to be.