Meeting the supportive needs of family caregivers in palliative care: challenges for health professionals

Caring for a dying relative is demanding, and family caregivers have acknowledged many unmet needs associated with their caregiver role. Consistently, caregivers of dying patients with cancer have reported that they need more support and information from health care professionals. Moreover, a number of palliative care clinicians and researchers have called for interventions to enhance the support offered to family caregivers. However, before researchers can develop and test palliative care interventions directed to families, it is important to identify barriers that may confront health care professionals with regard to the provision of supportive family care. For new interventions to be feasible they must be applicable within the constraints of current palliative care service delivery environments. This paper provides an account of issues that may impinge on optimal transference of supportive strategies from health care professionals to family caregivers of patients receiving palliative care. By acknowledging these barriers to supportive care, researchers and health care professionals can begin to design and implement interventions that are clinically relevant and more likely to be effective.     

Information needs and the related variables of Japanese family caregivers of terminally ill cancer patients

The present study examined the information needs of family caregivers of terminally ill cancer patients. Data were obtained by a structured interview from 66 Japanese caregivers of cancer patients institutionalized in a palliative care unit. Needs for disease-related information (the disease, treatment and prognosis) and care-related information (the care for the patient and family members) were investigated, and demographic and situational characteristics related to individual information needs were assessed. More than 60% of family caregivers wanted disease-related information, and approximately half of these wanted patient and family care-related information. These information needs had significant correlations with the family caregiver's age and with such patient-dependent situational variables as time since diagnosis, care site before enrolling in a palliative care unit, and presence or absence of other family caregivers. The results may help health care professionals to better inform terminally ill cancer patients and their family caregivers.     

Physical and psychosocial health in family caregiving: a comparison of AIDS and cancer caregivers

The objectives of this study were to compare cancer and AIDS family caregivers in regard to their physical and emotional health. The sample consisted of 26 caregivers of persons with cancer or AIDS. Study participants completed a questionnaire that included measures of depression, grief, symptoms of stress, caregiving demands, interpersonal relationships, health status, and quality of life. The data revealed that both AIDS and cancer caregivers reported high levels of stress and depression as compared to community norms. No significant differences were found between AIDS and cancer caregivers for any of the scale scores; however, the two groups differed on several individual subscales. Cancer caregivers demonstrated higher social functioning and were more likely to report that the work of caregiving itself disrupted their ability to socially engage with others. In contrast, AIDS caregivers were more likely to report that their own health limited their ability to socialize. Even though AIDS caregivers experienced less family support than cancer caregivers, they reported more rewards from caregiving. Results suggest that support delivered to caregivers emphasize a more inclusive approach to program delivery, versus a disease-specific perspective, in order to increase the depth and breath of services provided to families undertaking these challenges.     

A population-based study of the quality of life of cancer survivors and their family caregivers

Although survival rates for all cancers continue to increase, few studies have examined the quality of life of both cancer survivors and family caregivers during the survivorship period after treatment has ended. Information is lacking on the stressors, resources, meaning, and quality of life reported by survivors and family caregivers and the interrelationship between survivors' and family caregivers' quality of life. A stratified, random sample of 123 cancer survivors and 123 family caregivers (N = 246) were interviewed in an exploratory, cross-sectional design 1-6 years after cancer treatment had ended. Approximately half (N = 62) of the dyads were white and half (N = 61) were African American. Results indicated that cancer survivors reported significantly higher quality of life, less fear of cancer recurrence, and more support than their family caregivers. The strongest predictors for cancer survivors' quality of life were family stressors, social support, meaning of the illness, and employment status, whereas the strongest predictors for family caregivers' quality of life were fear of recurrence and social support. Both the survivor's and family caregiver's quality of life independently contributed to the other's quality of life. Findings from this study suggest the importance of including both survivors and family caregivers in programs of care.     

A Delphi Study of Core Patient-Reported Outcomes for Advanced Renal Cell Carcinoma and Advanced Hepatocellular Carcinoma

ObjectivesThere is little research to help health care professionals understand what patient outcomes are considered a priority in advanced liver or kidney cancer. Knowing what is important to patients can help promote person-centered approaches to treatment and disease management. The aim of this study was to identify those patient-reported outcomes (PROs) that patients, carers, and health care professionals consider as “core” when providing care to those with advanced liver or kidney cancer.Data sourcesA three-round Delphi study was undertaken to ask experts by profession or experience to rank PROs identified from a previous literature review. Fifty-four experts, including people living with advanced liver or kidney cancer (44.4%), family members and caregivers (9.3%), and health care professionals (46.8%), reached consensus on 49 PROs including 12 new items (eg, palpitations, hopefulness, or social isolation). Items with the highest rate of consensus included quality of life, pain, mental health, and capacity to do daily activities.ConclusionPeople living with advanced liver or kidney cancer experience complex health care needs. Some important outcomes were not actually captured in practice in this population and were suggested as part of this study. There are discrepancies between the views of health care professionals, patients, and family in what is important, highlighting the need of using measures to facilitate communication.Implications for Nursing PracticeIdentification of priority PROs reported here will be key to facilitate more focused patient assessments. The actual use of measures in cancer nursing practice to allow monitoring of PROs must be tested for feasibility and usability.     

Interventions for preparing patients for chemotherapy and radiotherapy: a systematic review

Purpose

Undergoing chemotherapy and radiotherapy can be physically and psychologically stressful for people with cancer. Providing preparatory information to cancer patients as they face treatment and its aftermath has the potential to improve patient outcomes. This study assessed the methodological quality and effectiveness of interventions providing preparatory information about chemotherapy and/or radiotherapy to cancer patients in improving patient outcomes and health care use.

Methods

MEDLINE, EMBASE, and Cochrane databases were systematically searched from January 1995 until October 2012. Inclusion criteria: (1) met Effective Practice and Organisation of Care (EPOC) criteria for study design; (2) included adults with a current cancer diagnosis; (3) delivered preparatory information via a health care provider or was self-directed; (4) examined psychological well-being, quality of life, physical symptoms, satisfaction, knowledge, or health service utilisation. Studies were assessed for methodological quality using the EPOC criteria.

Results

Eighteen studies involving 3,443 cancer patients met inclusion criteria. Interventions included written information, audiotapes, videotapes, and computer programs. Interventions improved patient satisfaction (6/7 studies), information needs and patient knowledge (5/6 studies), physical symptoms (3/4 studies) and cost (1/1 study). More than half of the interventions improved psychological outcomes and quality of life (10/17 studies).

Conclusion

Providing preparatory information can improve patient-reported outcomes in cancer patients undergoing chemotherapy and radiotherapy, especially with respect to satisfaction and knowledge. Some, but not all, studies improved psychological outcomes and physical symptoms. There is a need for methodologically rigorous research to determine the most effective timing and method of delivery of preparatory information to improve patient outcomes.     

癌症患者家庭照顾者准备度现状及影响因素分析

目的：调查癌症患者家庭照顾者准备度现状并分析其影响因素,为今后开展癌症患者照护者的护理干预提供依据。方法：采用照顾者准备度量表对天津市某三级甲等肿瘤专科医院门诊266例癌症患者照顾者进行调查。结果：癌症患者照顾者准备度得分为（23.07±6.03）分,不同照顾者的年龄、职业、是否具有照顾经验、患者癌症种类、是否转移的照顾者准备度得分比较差异具有统计学意义（P＜0.05）,其中,中青年、有照顾经验、肿瘤未发生转移的患者照顾者准备度更高。结论：癌症患者照顾者准备度水平有待提高,医护人员应有针对性的为癌症患者的照顾者提供健康教育和咨询工作,以提高其照顾者准备度,改善癌症患者的生活质量。     

Economic and social changes among distressed family caregivers of lung cancer patients

Purpose

Although costs of lung cancer care have been documented, economic and social changes among lung cancer patients’ family caregivers have yet to be fully examined. In addition, research has not focused on caregivers with greater need for support services. This study examined various economic and social changes among distressed family caregivers of lung cancer patients during the initial months of cancer care in the USA.

Methods

Lung cancer patients’ primary family caregivers with significant anxiety or depressive symptoms were recruited from three medical centers within 12 weeks of the patient’s new oncology visit. Caregivers (N?=?83) reported demographic and medical information and caregiving burden at baseline. Seventy-four caregivers reported anxiety and depressive symptoms and economic and social changes 3 months later.

Results

Seventy-four percent of distressed caregivers experienced one or more adverse economic or social changes since the patient’s illness. Common changes included caregivers’ disengagement from most social and leisure activities (56 %) and, among employed caregivers (n?=?49), reduced hours of work (45 %). In 18 % of cases, a family member quit work or made another major lifestyle change due to caregiving. Additionally, 28 % of caregivers reported losing the main source of family income, and 18 % reported losing most or all of the family savings. Loss of the main source of family income and disengagement from most social and leisure activities predicted greater caregiver distress.

Conclusions

Findings suggest that distressed caregivers of lung cancer patients experience high rates of adverse economic and social changes that warrant clinical and research attention.     

癌症化疗患者主要照顾者的生存质量和抑郁相关性研究

目的 了解癌症化疗患者主要照顾者的生存质量和抑郁状况以及其间的相关关系.方法 采用WHOQOL-BREF和SDS量表对癌症化疗患者直系亲属中主要照顾者和对照组(前来我院体检者)进行测评,并进行直线相关回归分析.结果 住院化疗的癌症患者直系亲属中主要照顾者的生存质量低于对照组,而抑郁状况高于对照组,照顾者的抑郁状况与生存质量呈负相关.结论 住院化疗的癌症患者主要照顾者存在抑郁情绪与生存质量下降相关,应重视对癌症患者主要照顾者的护理干预.     

Information needs of patients with incurable cancer

Goals The aims of this study were to describe to what extent cancer patients with incurable cancer report to have been informed about disease-related topics and how they evaluate the quality of the information giving.Patients and methods One hundred and twenty-eight patients participated in our study within 2 months after having had a diagnosis of incurable cancer. They filled out a questionnaire and were interviewed personally. We assessed the level of information, information needs and demographic factors, and we registered the type and duration of the cancer, cancer therapy, other types of received care and contacts with health care professionals. Furthermore, we assessed patients appreciation of the information giving by their health care professionals.Main results The majority of the patients said to have been informed about treatment options, side effects of their treatment, physical symptoms, where to get help, helpful devices, and diet, whereas less than half of the patients were informed about psychosocial care, euthanasia, and complementary care. Of all patients, 39% felt a need for additional information about topics such as physical symptoms, diet, euthanasia, and alternative or complementary care, whereas 19% would have appreciated extra written information. Most patients (78–88%) were satisfied with the information giving by the clinical specialist, oncology nurses, and non-specialised nurses, but only 63% evaluated the information giving by general practitioners as good.Conclusion We conclude that most patients feel sufficiently informed about important disease-specific issues and are satisfied with the information giving by health care professionals. Nevertheless, a considerable number of patients appreciate additional information.     

General practitioners' health care for disabled patients: a survey among a panel of general practitioners in Southeastern France, in 2002]

OBJECTIVES: This article presents a study on General Practitioners' (GPs) knowledge, attitudes and practice towards disabled patients. MATERIAL: A sample of 600 private general practitioners practising in Southeastern France was selected in 2002 with a random sampling approach stratified according to age, sex, and size of the urban unit. METHOD: A standardised questionnaire was used to collect data by telephone. Results are presented as percentages. Comparisons used Pearson's chi2 test. RESULTS: Ninety percent of the GPs reported that they had to provide social assistance to their disabled patients (protecting their rights, administrative assistance, family counselor, etc.) as well as coordinating care by various other professionals. GPs frequently reported the presence of barriers that compromised the health care of disabled patients: lack of information (62.8%), time (50.2%), co-ordination between health professionals (37.7%), and training (37.7%), as well as communication problems (20.7%) and the need for assistance in clinical examinations (16.2%). More than 25% of the GPs suggested breast cancer screening (27.6%), contraceptive prevention (29.5%) or hepatitis B vaccination (29,3%) less often to their disabled than non disabled patients and 25.8% reported they had not evaluated the patients' dependency levels. CONCLUSION: This study suggests that GPs face several barriers in caring for disabled persons. A lack of knowledge may explain inappropriate care for this population. GPs need more support and guidance in dealing with disabled patients, and coordination with other health professionals must be encouraged.     

Caregiving at the end of life: Perceptions of health care quality and quality of life among patients and caregivers

This study explored the association between perceptions of health care quality and quality of life in patients with advanced metastatic cancer and their informal caregivers (n=39). Patients' and caregivers' perceptions of health care quality, mental health, health-related quality of life, symptoms, and burden were measured. The key findings included the following: 1) patients' mental health and depression scores correlated with those of caregivers, suggesting that the mental health of patients and their caregivers are associated; 2) patients and caregivers shared similar perceptions regarding health care quality; 3) the presence of depression in caregivers correlated with caregivers being less satisfied with the health care being given to their patients (this correlation did not exist for patients, a finding that may be due in part to the protective buffering effect that caregivers provide their patients as illness progresses); and 4) a modified Primary Care Assessment Survey, originally designed for primary care patients, was a useful measure of health care assessment for both patients and caregivers. These data suggest that patients with advanced disease and their caregivers share similar perceptions and evolve as a "unit of care," and caregivers, as unique and important members of the patient's health care team, are also in need of care. When depressed, caregivers may unilaterally lose trust by becoming less satisfied with the quality of health care being provided to their patients.     

Barriers to Family Care in Psychiatric Settings

PURPOSE: To identify barriers to family care in psychiatric settings and to describe family and provider perspectives about what constitutes effective family care. DESIGN AND METHODS: A qualitative exploratory approach with focus groups. Seventy-eight people participated in 11 focus groups conducted with families, patients, and health professionals. FINDINGS: Families identified poor quality care, conflict with health professionals about treatment, and lack of a role for families in the treatment. African American families also identified isolation of their communities from the mental health care system. Adolescents emphasized their role as caregivers and their needs for support. Health professionals conveyed concerns about system-based barriers, professional practice-based barriers, and family-based barriers to care. Patients stated the need for their families to be better educated about mental illness. CONCLUSIONS: The lack of family care in psychiatric settings is a multifaceted problem. Current health policies do not show endorsement of a family care approach. Responses from families and health professionals indicated conflicting opinions about content of family care. Health professionals reported they often lacked training and resources to deal with complex family issues. Families believed that lengthy and intensive interventions were neither necessary nor desired to address their concerns. Family care can be improved by focusing on building rapport and communicating problems and concerns between families and health professionals.     

The meaning of caring from the viewpoint of patients with wounds due to peripheral vascular disease

This qualitative study describes the meaning of Caring from the viewpoint of the patient with chronic wounds due to peripheral vascular disease (PVD). Because the meaning of Caring can not be understood independent from the life context of the persons involved, the following questions have been formulated: 1) What influence does living with chronic wounds have on the everyday life of the patient? 2) What is the meaning of Caring for patients with chronic wounds? To answer these questions, qualitative research methods according to Mayring were chosen. A convenience sample of twelve patients, seven women and five men, with ages ranging from 69 to 86 years (median 77 years), were interviewed from April to November 2002. Data were analyzed according to Mayring (2000) through content analysis. The results show that the everyday life of the patient is strongly influenced by the effects of having chronic wounds. Patients view their lives with chronic wounds, the effects on their day to day life and the support from health professionals and family caregivers as a whole. Patients differentiate between Caring from Health professionals and Caring from family caregivers. Caring from health professionals is described primarily in the context of treatments and support situations. Caring from family caregivers is experienced as a part of the everyday life. Patients assume that healthcare professionals have the needed expertise, knowledge and skills. They hope, however, to be valued and respected and describe these characteristics as "kind and nice". When patients experience these attitudes from the nurses they feel they are taken seriously and are cared for. This is a requirement to enable or empower patients to understand and implement their treatment regimen. Caring must always be an element of nursing care and determines the standard of the quality of the patient-nurse relationship.     

The caregiving journey for family members of relatives with cancer: how do they cope?

Family caregivers need adequate support from healthcare professionals to complete the demands associated with caregiving with minimal impact on their own health and well-being. An optimal balance of provision of care between family and support services has not been achieved; therefore, this literature review investigates how family caregivers endure and cope with the challenges of caring for an adult relative with cancer. This review considered the characteristics of caregivers and their functioning, the external and internal supports that help them cope, the ongoing challenges as they journey along the caregiving trajectory, the personal costs of caregiving, and how caregivers cope with supporting their family members through to the end of their journeys. The literature provides an abundance of research on the numerous challenges encountered by families living with cancer; however, little research has been conducted on the coping strategies used by family caregivers at specific stages along the illness trajectory that either optimize or hinder personal recovery. Even less information is available on interventions nurses can introduce to ease the caregiving burden. Improving nurses' understanding of the stressors and unmet needs associated with caregiving is fundamental to the development of effective family-focused clinical interventions.     

Quality of life for caregivers of people with Alzheimer's disease

AIM: This paper is a report of a study to describe the meaning of quality of life for caregivers of patients with Alzheimer's disease and to identify factors that affect their quality of life. BACKGROUND: The burden for informal caregivers and change in their quality of life can lead to patients being placed in nursing homes. Factors found to worsen caregivers' quality of life include strained finances, poor family functioning, difficult patient behaviour, financial burdens and the amount of time caregivers spend caring for family members with Alzheimer's disease. METHOD: A hermeneutic phenomenological design was used to study 32 informal caregivers of patients with Alzheimer's disease. Data were collected using interviews between November 2004 and June 2005. FINDINGS: Caregivers associated good quality of life with serenity, tranquility, psychological well-being, freedom, general well-being, good health and good financial status. Factors that caregivers said improved their quality of life were good health of the patient, independence from the patient, and more help in caregiving. Factors that worsened their quality of life were worries about the future and progression of the patient's illness and stress. CONCLUSION: Our findings may help healthcare professionals have a deeper understanding of the meaning caregivers give to quality of life and thereby aid in the design of strategies to maintain or improve quality of life. Intervention research is needed for caregivers in countries where this has not yet been performed. Researchers should also investigate whether different types of caregivers (spouse, adult child and friend) have different needs or problems.     

End-of-Life Care in Italian Hospitals: Quality of and Satisfaction With Care From the Caregivers' Point of View—Results from the Italian Survey of the Dying of Cancer

ContextA number of studies have highlighted the poor quality of end-of-life (EOL) care provided in hospital settings, leading to a reduction in the quality of EOL care and increase in patient and caregiver dissatisfaction levels.ObjectivesThe aims of this study were the evaluation of the prevalence of major symptoms, treatment, outcomes, information, and care provided to dying cancer patients in Italian hospitals; and an analysis of clinical and socio-demographic factors associated with caregiver satisfaction with the health care provided.MethodsThis is a mortality follow-back survey of 2,000 cancer deaths representative of the country. Caregivers were interviewed about patients' experiences by using a tailored version of the View of Informal Carers—Evaluation of Services questionnaire.ResultsValid interviews were obtained for 84% (n = 364) of the cancer patients who died in hospital. Most Italian cancer patients dying in hospital suffered from a number of untreated or poorly treated symptoms, and only a few reported an acceptable control over physical suffering. Moreover, only two-thirds of patients and one-third of caregivers received basic information on therapies and care. About one-third of the caregivers expressed dissatisfaction with the health care received. The probability of being satisfied was more likely for caregivers of patients living in the north of Italy; caregivers of patients who had not experienced or were only slightly distressed by fatigue; and caregivers who were generally satisfied with hospital facilities and when the health care professionals had provided appropriate information to both patients and caregivers.ConclusionThis study revealed poor quality of EOL care in Italian hospitals, with almost one-third of the caregivers expressing their clear dissatisfaction. A national policy is, therefore, urgently called for to improve the quality of EOL care in Italian hospitals.