Living and coping with Parkinson's disease: perceptions of informal carers

A review of the literature highlights the important role informal carers play in the provision of palliative care in the community. In order to explore the caring experience of relatives with Parkinson's Disease (PD), interviews were conducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis. All caregivers were spouses, the majority female (n?=?17) and all were responsible for providing physical, social and emotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespread burden of providing care on the emotional and physical health of the caregivers. The financial implications for providing care were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a huge emotional impact on relatives and carers, carers did not feel health professionals integrated them within the caring journey. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting in symptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning and timing of palliative care were common with many viewing it as being synonymous with cancer and not applicable to a person with PD. As the well-being of the informal carer directly influences the care of the person with PD, support interventions are required to relieve their burden, maximize outcomes and ensure targeting of services.     

Living with Huntington's disease: need for supportive care

Huntington's disease is a genetic, neurological disorder characterized by mid-life onset, involuntary movements, cognitive decline, behavioral disturbance, and inexorable progression. The impact of Huntington's disease is devastating for individuals and their families as it is a disease with a long trajectory; many young people are aware that they may develop the illness for years before there are obvious symptoms. There is therefore ample opportunity to plan and choreograph the care and supportive services for people with Huntington's disease and their families. The present study was conducted to explore the needs for palliative (supportive) care service provision of people with Huntington's disease and their families/informal carers. Six people with the disease, 19 informal carers and seven health care workers with specialized knowledge took part in individual, semistructured interviews, which were analyzed thematically. Themes were: (i). adjusting to the impact of the illness; (ii). surviving the search for essential information; (iii). gathering practical support from many sources; (iv). bolstering the spirit; (v). choreographing individual care and; (vi). fearing the future. Our findings demonstrate that palliative care services for people with Huntington's disease and their informal carers need to provide expert psychological and practical support and perhaps most importantly, be flexible, adequately planned and choreographed.     

Caregiving for the terminally ill: at what cost?

This literature review exposes the nature and extent of physical and psychosocial morbidity and economic disadvantage, home palliative caregivers suffer as a direct result of their caregiving role. Research has demonstrated that caregivers providing support to individuals receiving palliative care report unmet needs for information, communication, service provision and support from health and community services. Three sets of challenges are highlighted in this literature review which help explain why the needs of home palliative caregivers are largely unmet: (i) barriers to seeking help; (ii) a dearth of research-based interventions focused on reducing the negative aspects of caregiving; and (iii) a number of impediments to effective policy and service development for family caregivers. Furthermore, invited submissions from caregivers echoed and confirmed the issues reported in the literature. Recommendations for enhancing caregiver support are outlined.     

Palliative care of patients with a primary malignant brain tumour: case review of service use and support provided

Individuals with a primary malignant brain tumour require intensive palliative care services because of the symptoms and cognitive problems they experience. Many of these patients stay with their families at home, being supported by palliative care home teams rather than being admitted for hospice care. The provision of respite care and community services to support these families goes largely unreported. This study arises out of a need to review support services for patients and carers within one cancer and palliative care service. This retrospective case analysis identifies that there are a range of services used in the community to support patients with primary malignant brain tumours but that only a small proportion receive inpatient hospice care. District nursing services were extensively used but also a high number (74%) of patients were admitted to local hospitals for symptom management. This paper attempts to explore the services utilized but also questions the apparently limited provision of hospice care for supporting individuals in the palliative care stages of such an illness. This paper considers the illness trajectory, the complex symptoms experienced by patients and respite services utilized. Issues of those engaged in informal care giving and in the provision of support for those with a primary malignant glioma are also considered.     

Support for family carers who care for an elderly person at home - a systematic literature review

Family carers are a major source of help and assistance to the persons they provide care for. They are also major contributors to the welfare system, balancing the national health care expenditure. Increasing attention, in research as well as government policy, is being paid to their role as informal caregivers. Support to family carers seems to be a new 'buzzword' in Swedish Government policy. However, supporting family carers may prove to be a more complex endeavour than one initially might be led to believe. Support could here be understood as any services, assistances, education, information, attitudes, and lay or professional person's provision for the benefit of the family carer. The aim of this systematic review was to identify modes of, and scientific evidence on, support for family carers of cohabiting elderly persons. The method followed a seven-step model: a focused research question was formulated creating a base for deriving search words and inclusion and exclusion criteria for studies. Systematic database searches identified several studies some of which were retrieved, critically appraised and classified by two independent reviewers. A total of 26 articles were finally included, revealing that family carers fear social isolation and wish to network in groups with peers, either for social or for learning needs purposes. Family carers also desire respite care. However, it is unclear whether they actually benefit from any of the above or how service provision should be attempted.     

A review of the information and support needs of family carers of patients with chronic obstructive pulmonary disease

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.     

Community provision for informal live-in carers of stroke patients

Stroke is common and disabling. Most stroke patients are cared for at home by informal carers. This study of informal carers of stroke patients measured service provision and satisfaction with different aspects of community care received by these carers. Dissatisfaction was expressed with training and information provision for carers, communication between carers and community services, speed of response and coordination of community services, and perceived support. Problems of information provision were most marked for those patients with most disability and/or older carers.     

Assessing palliative care needs: views of patients, informal carers and healthcare professionals

AIM: This paper reports a study to assess the palliative care needs of the adult population served by a healthcare provider organization in Northern Ireland from the perspectives of patients, informal carers and healthcare providers. BACKGROUND: Assessing palliative care need is a key factor for health service planning. Traditionally, palliative care has been associated with end-of-life care and cancer. More recently, the concept has been extended to include care for both cancer and non-cancer populations. Various approaches have been advocated for assessing need, including the exploration of professional provider and user perspectives of need. METHOD: Semi-structured qualitative interviews were undertaken with a purposive sample of patients and lay carers receiving palliative care services (n = 24). Focus groups were also conducted with multi-professional palliative care providers (n = 52 participants) and face to face interviews were undertaken with key managerial stakeholders in the area (n = 7). The focus groups and interviews concentrated on assessment of palliative care need. All the interviews were transcribed verbatim and analysed using Burnard's framework. FINDINGS: Professional providers experienced difficulty in defining the term palliative care. Difficulties in communication and information exchange, and fragmented co-ordination between services were identified. The main areas of need identified by all participants were social and psychological support; financial concerns; and the need for choice and information. All participants considered that there was inequity between palliative care service provision for patients with cancer and non-cancer diseases. CONCLUSION: All patients, regardless of diagnosis, should be able to access palliative care appropriate to their individual needs. For this to happen in practice, an integrated approach to palliative care is essential. The study methodology confirms the value of developing a comprehensive approach to assessing palliative care need.     

Working with ambivalence: informal caregivers of patients at the end of life

Informal caregivers of patients at the end of life perform a crucial role in maintaining and supporting patients at home. They provide a high level of demanding care, and as a consequence have been shown to have high-level information and support needs themselves. However, they are less often identified as recipients of services than as providers, and little research has addressed how services should be developed to meet their needs. This study aimed to address obstacles in the access to and provision of targeted, appropriate interventions. Eighteen informal carers participated in this qualitative study, which used a grounded approach to the analysis and generation of concepts. The data showed that while recognising their stress, anxiety and need for a caregivers' service, caregivers were highly ambivalent with regard to their own needs. The design and delivery of an intervention aimed at caregivers should take account of their high level of ambivalence by addressing their lack of identification with their role, enhancing existing coping strategies, and ensuring that interventions are accessible and acceptable.     

District nurses’ role in palliative care provision: A realist review

Objectives

The aim of this review is to construct a detailed account of the role of the district nurse (generalist registered nurse providing nursing care in primarily home settings) in providing palliative care, to determine if and how district nursing care provides effective care to such patients at home, and to examine the utility of a realist review for the above purpose.

Design

Realist review of literature.

Data sources

Papers in English reporting aspects of the district nurse role in the provision of palliative care are included. Electronic databases (Ovid Medline, Cinnahl, British Nursing Index, Embase, PsycINFO and EBM reviews) were searched, supplemented by citation tracking and grey literature searches.

Review methods

Assumptions about district nursing practice with palliative care patients are derived from a range of sources. Reviewed papers are interrogated to support, refute or develop these statements.

Results

Forty six papers employing a range of research methods are incorporated into the review. Studies focus on district nurses, patients, family carers and other professionals and include work from a range of countries. Studies highlight the value district nurses place on palliative care provision, the importance of developing a relationship with patients, and the emotional difficulties of providing such care. District nurses have key skills in providing physical care and in coordinating the work of others, but struggle more with psychological aspects of care. District nurses report feeling undervalued, and express some reluctance to work with other health and social care professionals to provide care.

Conclusions

There is little in this synthesis to shed light on the outcomes of care or to explicitly guide practice. District nurses clearly articulate what they consider to be important, but research in this area is limited and needs to undergo a renaissance to examine what is important: namely what district nurses do in practice; what patients and family carers views are on what they do and do not do; and how district nurses can improve care outcomes. The inclusiveness of realist review works well for this field of study.     

Expectations to and evaluation of a palliative home-care team as seen by patients and carers

Objectives Although the number of palliative home-care teams is increasing, knowledge of what patients and principal informal carers expect from a home-care team is sparse. We aimed to elucidate this as well as evaluate a home-care team.Patients and methods Individual semi-structured interviews with nine patients and six carers before receiving home care and 2–4 weeks after. In total, 26 interviews were conducted. Interviews were analysed with Template Analysis. Peer debriefing was performed.Main results Patients and carers expected the team members to have specialised knowledge in palliative care and to improve their sense of security being at home. They also expected respite for carers and activities for patients. They evaluated the team positively but missed respite for carers and 24-h on-call service.Conclusions Patients and carers found the home-care team essential to their sense of security being at home. Primary health care professionals must receive any necessary training outside patients’ homes. Offering respite for carers and 24-h on-call service would be an improvement.     

Next‐of‐kin caregivers in palliative home care – from control to loss of control

Title. Next‐of‐kin caregivers in palliative home care ‐ from control to loss of control. Aim. This paper is a report of a study to describe situations influencing next‐of‐kin caregivers’ ability to manage palliative care in the home. Background. Palliative home care often involves major resources from next‐of‐kin, municipal and county personnel. Next‐of‐kin caregivers’ situation is depicted as so demanding and exhausting that it can affect their mental health and limit their ability to continue as a caregiver. Methods. A qualitative study using the Critical Incident Technique was conducted. Nine next‐of‐kin caregivers from palliative home care were strategically chosen and data were collected using audiotaped interviews in 2005. Findings. The analysis resulted in two main areas: ‘Maintaining control’ and ‘Losing control’. Next‐of‐kin caregivers wanted to maintain control over their lives by being continuously available 24 hours a day and by supporting and taking complete responsibility for all of the patient’s needs. They lost this control when professional assistance was lacking and they described feelings of inadequacy when their physical energy or time was insufficient. They felt incapable as the patient’s physical or mental persona metamorphosed or as serious symptoms developed that they could not control. Conclusion. Next‐of‐kin caregivers and the patients must feel free to choose where palliative home care will be provided and that their choice at any time can be re‐evaluated, due to insecurity or workload changes. When planning for palliative care, they should be informed that having only one caregiver reduces the chances of completing palliative care in the home.     

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.     

Working together–apart: Exploring the relationships between formal and informal care networks for people dying at home

Abstract

Introduction

Informal caring networks contribute significantly to end-of-life (EOL) care in the community. However, to ensure that these networks are sustainable, and unpaid carers are not exploited, primary carers need permission and practical assistance to gather networks together and negotiate the help they need. Our aim in this study was to develop an understanding of how formal and informal carers work together when care is being provided in a dying person's home. We were particularly interested in formal providers’ perceptions and knowledge of informal networks of care and in identifying barriers to the networks working together.

Methods

Qualitative methods, informed by an interpretive approach, were used. In February-July 2012, 10 focus groups were conducted in urban, regional, and rural Australia comprising 88 participants.

Findings

Our findings show that formal providers are aware, and supportive, of the vital role informal networks play in the care of the dying at home. A number of barriers to formal and informal networks working together more effectively were identified. In particular, we found that the Australian policy of health-promoting palliative is not substantially translating to practice.

Conclusion

Combinations of formal and informal caring networks are essential to support people and their primary carers. Formal service providers do little to establish, support, or maintain the informal networks although there is much goodwill and scope for them to do so. Further re-orientation towards a health-promoting palliative care and community capacity building approach is suggested.     

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.     

A comparative review of palliative care development in six countries represented by the Middle East Cancer Consortium (MECC)

Palliative care development and services were reviewed in the region represented by the six members of the Middle East Cancer Consortium: Cyprus, Egypt, Israel, Jordan, the Palestinian Authority, and Turkey. The multimethod review synthesized evidence from ethnographic field visits to inpatient units, home care hospice teams and free-standing hospices, including interviews with hospice and palliative care clinicians, administrators, volunteers, policy makers and academic researchers. Public health data and relevant literature were collated together with internet-accessed information on services and health care systems. A total of 69 services were located; two country members have a history of relatively sustained development of hospice and palliative care, but provision across the Middle East Cancer Consortium region is highly variable at a local level. Considerable barriers to service development were identified in a region already struggling with many military and political conflicts. Key problems are a lack of secure funds and government support, inadequate professional training programs, opioid phobia in professionals and the public, and a lack of awareness and understanding of palliative care needs at public, government, and professional levels. Key areas for further attention were increasing national and international professional training and public education programs, improving opioid legislation and health care policies, negotiating for secure government or health insurance funding provision, raising awareness about the need for pediatric services and for patients with other illnesses, as well as for those with cancer, and working to integrate palliative care into mainstream health service provision and education.     

Identifying the concerns of informal carers in palliative care.

The purpose of this preliminary study was to identify the perceived support needs of informal carers (families and friends) of cancer patients receiving palliative care in the community. Changes in policy mean that increasing numbers of palliative care patients receive the majority of their care at home. This potentially places heavy demands on families and friends. Thirty-nine informal carers were recruited from two areas in southern England. Data were obtained on psychological morbidity (General Health Questionnaire), and caregiving burden (Carer Strain Index), and a semistructured interview was used to elicit data on perceptions of caring. Results indicate that 33 (84%) reported above normal levels of psychological distress and 16 (41%) experienced high levels of strain related to caregiving. Younger age and being female were found to be correlated with psychological morbidity and strain. Participants also reported life restrictions, emotional distress and limited support.