Positive aspects and challenges associated with caring for a dying relative at home

Research has consistently shown that family caregivers have a variety of unmet needs, despite comprehensive professional support for caregivers being a central aim of palliative care. This sub-study of a larger randomized controlled trial sought feedback from 47 primary family caregivers of advanced cancer patients who had recently commenced home palliative care. During semi-structured interviews in their homes, family caregivers were asked to comment on the key challenges associated with their role and whether they could identify challenges. These were associated with their own ill health, family circumstances, insufficient skills to manage patient symptoms, limited time for themselves and inadequate support from health professionals. Despite these challenges, 60% of family caregivers were readily able to identify positive aspects of the role. Previous research has tended to focus on the negative impact of caregiving. The extent to which the positive aspects buffer the negative aspects of the role warrants further exploration, as does the long-term impact of the caregiver role on those who are unable to recognize positive elements.     

Diagnosis disclosure by family caregivers to children who have perinatally acquired HIV disease: when the time comes.

BACKGROUND: Children with perinatally acquired HIV disease (PAHD) can be relatively symptom-free and live to school age and older. These children often confront their caregivers with questions about the illness and complex treatments; however, caregivers may try to avoid disclosing the diagnosis of PAHD to the child. PURPOSE: To generate a substantive theory that describes and explains how family caregivers manage diagnosis disclosure to a child who has PAHD. METHOD: Using grounded theory, a substantive theory was constructed based on the accounts of 18 ethnically diverse families. Eight families had 10 children with PAHD who had been told their diagnosis. Ten families had 10 children with PAHD who had not been told their diagnosis. RESULTS: The basic social psychological problem was identified as caregiver readiness to disclose the diagnosis. When the Time Comes was identified as the central phenomenon linked to the problem of caregiver readiness. Causal conditions, intervening conditions, and strategic responses of caregivers and children were discovered and are inextricably linked to the central phenomenon. CONCLUSIONS: The process by which family caregivers respond to diagnosis disclosure to children with PAHD is based on the perceived self-readiness of the caregiver to disclose the diagnosis and illness-related information to their child.     

Family experiences of home caring for patients with HIV/AIDs in rural Limpopo Province, South Africa

The increasing rate of patients with HIV/AIDS brings a burden to the already weakened health care delivery systems in Limpopo Province, South Africa. Hospitals alone cannot deal with the needs of AIDS patients effectively; the patients are discharged to be cared for at home. A qualitative study was conducted to explore and describe the experiences of the family members that are caring for patients with HIV/AIDS at home. Interviews were conducted with 12 participants who were purposively selected as the caregivers of patients suffering from AIDS at home. Ethical measures were adhered to for the protection of the participants. The findings revealed that the family members experience negative feelings, characterized by sadness, pain, anger, depression, and frustration, as they care for their loved one within the context of extreme poverty. Quality care was compromised in situations where basic resources were not available. Guidelines to assist families in caring for their loved one with HIV/AIDS at home were developed.     

Staff-family relationships in nursing home care: a typology of challenging behaviours

Aim.  This paper draws on data from a study which investigated how Australian nursing home staff constructed staff–family relationships.
Background.  Working with the family in aged care to provide the best care possible is consistent with modern nursing philosophy which espouses holistic care. The quality and enjoyment of the experience however, is frequently fraught with problems and challenges for both the staff and the family involved.
Design.  A qualitative constructivist design as described by Guba and Lincoln [ Fourth Generation Evaluation . Sage Publications, London.] was used.
Method.  Thirty paid caregivers drawn from eight nursing homes were interviewed about their experiences of working with residents' families. A constant comparative method of data analysis was used to arrive at the findings.
Results.  This paper reports on seven themes under the category of 'unacceptable behaviours'. These themes describe a range of attitudes and behaviours exhibited by families which staff members found undesirable.
Conclusions.  Staff members found a number of family behaviours challenging. Nursing home staff perceives the family as subordinate to their needs and want to retain control of the work environment.
Relevance to clinical practice.  Nursing home staff need to move away from custodial models of care focused on 'getting the work done' and develop more family friendly work practices that are inclusive of the needs of the family and view them as equal partners in care.     

Cancer Caregivers’ Prognostic and End-of-Life Communication Needs and Experiences and their Impact

ContextFamily caregivers of patients with advanced cancer are integrally involved in communications regarding prognosis and end-of-life (EOL) planning and care. Yet little research has examined caregivers’ communication experiences or the impact of these experiences on patients and caregivers at EOL.ObjectivesInvestigate cancer caregivers’ communication experiences and potential impact on patient and caregiver outcomes.MethodsSemistructured interviews with bereaved family cancer caregivers (N=19) about their communication needs and experiences as their loved one approached EOL and died. Audiotaped interviews were transcribed and thematically analyzed for communication-related themes.ResultsCaregivers described fulfilling many important communication roles including information gathering and sharing, advocating, and facilitating—often coordinating communication with multiple partners (e.g., patient, family, oncology team, hospital team). Caregivers reported that, among the many topics they communicated about, prognosis and EOL were the most consequential and challenging. These challenges arose for several reasons including caregivers’ and patients' discordant communication needs, limited opportunity for caregivers to satisfy their personal communication needs, uncertainty regarding their communication needs and responsibilities, and feeling unacknowledged by the care team. These challenges negatively impacted caregivers’ abilities to satisfy their patient-related communication responsibilities, which shaped many outcomes including end-of-life decisions, care satisfaction, and bereavement.ConclusionCaregivers often facilitate essential communication for patients with advanced cancers yet face challenges successfully fulfilling their own and patients’ communication needs, particularly surrounding prognostic and end-of-life conversations. Future research and interventions should explore strategies to help caregivers navigate uncertainty, create space to ask sensitive questions, and facilitate patient-caregiver discussions about differing informational needs.     

The information needs and source preferences of women with breast cancer and their family members: a review of the literature published between 1988 and 1998

A comprehensive and critical literature review was conducted to examine the information needs and source preferences of women with breast cancer and their family members. Relevant papers published between 1988 and 1998 were reviewed and despite their having several methodological weaknesses, a number of conclusions can still be drawn. First, women with breast cancer have distinct needs for information throughout their breast cancer journeys, indicating that information needs change with time since diagnosis and with treatment-related events. Second, family members of women with breast cancer also have substantial needs for information. Third, women with breast cancer and their family members often prefer verbal forms of information from health care professionals (HCPs), particularly around the time of diagnosis. Women with breast cancer, however, are often dissatisfied with the information they receive from HCPs. Further, the family members of women with breast cancer often perceive their information needs to be ignored by HCPs. Finally, few studies have focused specifically on the information needs and source preferences of family members of women with breast cancer. These findings have a number of implications for nursing, both for clinical practice and nursing research, and these are discussed in the review.     

Response to the needs of Turkish chemotherapy patients and their families

The purpose of this study was to determine the quality of life, depressive symptoms, and informational needs of cancer patients receiving chemotherapy and of their family caregivers. This article presents findings from a study of 111 patients with cancer and 34 of their primary family caregivers from an outpatient chemotherapy unit in eastern Turkey. The results indicated that the patients perceived a poorer quality of life than their family caregivers. The patients also were more clinically depressed. Furthermore, both the patients and caregivers received little information regarding the illness and the side effects of chemotherapy from their health professionals. Nearly half of the patients and over half of the caregivers reported that information given by health professionals was verbal. Most of the patients and caregivers reported they felt that they needed to be visited by health professionals at their home when they ask for such services and/or once a week. Patients reported the need for assistance with one or more personal, instrumental, or administrative activities. The need for administrative activities of patients and caregivers were found to be similar. In conclusion, nurses must continue to work hard to focus not only on the disease and its symptoms, but also on the impact on the day-to-day living of the patient with cancer and his or her family. Home visits may empower patients and caregivers by giving them information and professional support.     

基于家庭照顾者视角下结直肠癌家庭的家庭弹性现状及影响因素分析

目的：以家庭照顾者为视角探讨结直肠癌家庭的家庭韧性现状及影响因素。方法：便利抽取云南省某三甲肿瘤专科医院结直肠外科的327名结直肠癌患者的家庭照顾者作为研究对象，使用一般人口信息学问卷、家庭韧性评估量表（FRAS）进行调查。结果：家庭照顾者视角下的结直肠癌家庭的FRAS得分为（147.08±13.91）分；多元线性回归分析显示，照顾者的文化程度、是否为家庭主要经济支柱、照顾技能的掌握程度、社会支持、照顾负担以及患者有无其它治疗（如靶向治疗、中医治疗、免疫治疗等）是其家庭韧性的主要影响因素（P<0.05）。结论：基于家庭照顾者视角下结直肠癌家庭的家庭韧性处于中等偏上水平，医护人员在关注结直肠癌患者的同时，需及时对其家庭照顾者进行家庭韧性评估和针对性干预，以促进家庭的适应和恢复。     

Putting cancer pain management regimens into practice at home

The purpose of this study was to describe the difficulties with pain management that patients and family caregivers bring to a nurse's attention during a teaching and coaching intervention. Data were obtained from audiotaped and transcribed interactions between intervention nurses and patients (n = 52) and their family caregivers (n = 33) who were participating in a randomized clinical trial of a nursing intervention called the PRO-SELF Copyright Pain Control Program. Using qualitative content analysis, we found that patients had difficulty in seven areas when they attempted to put a pain management regimen into practice, namely: obtaining the prescribed medication(s), accessing information, tailoring prescribed regimens to meet individual needs, managing side effects, cognitively processing information, managing new or unusual pain, and managing multiple symptoms simultaneously. The findings from this study suggest that the provision of information about cancer pain management to patients and their family caregivers is not sufficient to improve pain control in the home care setting. Patients and their family caregivers require ongoing assistance with problem-solving to optimize their pain management regimen.     

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.     

Institutionalized elders with dementia: collaboration between family caregivers and nursing home staff in Taiwan

Aims and objectives. To explore the process of development of collaborative relationship between family caregivers of institutionalized elders with dementia and nursing home staff in Taiwan. Background. Evidence suggests that family members are continuously involved in the lives of loved ones and have not given up their roles as caregivers after the institutionalization of a family member. Little is known, however, about how family caregivers develop a collaborative relationship with nursing home staff, particularly in Asian countries. Design and methods. Grounded theory methodology was used. Data were collected via interviews and observations from 11 family caregivers of patients who were suffering from dementia and living in an institution for persons with dementia in northern Taiwan. Data were analysed by constant comparative analysis. Results. Findings revealed that ‘institutional social penetration’ was the process most used by family caregivers to achieve an harmonious collaborative relationship with the nursing home staff. Institutional social penetration is a dynamic process, which includes three components: self‐disclosure, evaluation of care and penetration strategies. Family caregivers, who had developed a ‘socially penetrating’ relationship with the nursing home staff, were more likely to disclose information in more breadth and depth, to receive positive care evaluations and to adopt multiple effective penetration strategies. Conclusions. Institutional social penetration between family caregivers and nursing home staff can sensitize healthcare providers to meet the family's needs during the placement of their loved one and provide a basis for developing intervention strategies. Relevance to clinical practice. Findings of this study may help healthcare providers to understand the ways in which collaborative relationships develop between the families of elders with dementia and nursing home staff. Interventions can be developed to facilitate self‐disclosure of both the family members and nursing home staff through timely feedback and familiarising family caregivers with different penetration strategies.     

Impact of caregivers’ unmet needs for supportive care on quality of terminal cancer care delivered and caregiver’s workforce performance

Goals of work

Family caregivers play an important role in caring for cancer patients, but the impact of caregivers’ unmet needs on the quality of end-of-life (EOL) care they deliver and on their workplace performance are less understood.

Patients and methods

We identified 1,662 family caregivers of cancer patients who had died at any of 17 hospitals in Korea during 2004. The caregivers answered a telephone questionnaire about needs that were not met when they delivered terminal cancer care and how those unmet their needs affected their workplace performance; they also answered the Quality Care Questionnaire-End of Life (QCQ-EOL).

Results

Compared with caregivers who did not have unmet needs, caregivers who had unmet needs for symptom management, financial support, or community support showed poorer QCQ-EOL scores (P?<?0.01). Caregivers who had unmet needs for financial support (adjusted odds ratio (aOR)?=?7.55; 95% confidential interval (CI) 3.80–15.00), psychosocial support (aOR?=?6.24; 95% CI 2.95–13.05), symptom management (aOR?=?3.21; 95% CI 2.26–4.54), community support (aOR?=?3.82; 95% CI 2.38–6.11), or religious support (aOR?=?4.55; 95% CI 1.84–11.26) were more likely to experience work limitations. Caregivers of patients receiving conventional hospital care were more likely to have unmet needs for symptom management (aOR?=?1.21; 95% CI 1.00–1.47), psychosocial support (aOR?=?1.99; 95% CI 1.37–2.88), and religious support (aOR?=?1.73; 95% CI 1.08–2.78) than those of patients receiving palliative hospice care.

Conclusions

Caregivers’ unmet needs negatively affected both the quality of EOL care they delivered and their workplace performance. More investment in caregiver support and public policies that meet caregiver needs are needed, and hospice use should be encouraged.     

Role perceptions of occupational therapists providing support and education for caregivers of persons with dementia.

OBJECTIVE: This pilot study explored occupational therapists' perceptions of their roles as interventionists providing education and support for caregivers of persons with dementia. The intervention was provided in caregivers' homes as part of a larger funded study. METHOD: Interviews were conducted with four occupational therapists to elicit their reflections on practice and their views on occupational therapy services on the basis of their experiences providing support and education for caregivers in the funded study. RESULTS: Key themes consisted of the contrasts between the therapists' roles in the study and their customary practices and the professional and personal impact of their role in the study. Their recommendations for occupational therapy services emphasized the need to (a) collaborate with patients, families, and other health care staff members to solve problems; (b) acknowledge others as experts; (c) include family perspectives; and (d) fully address the needs of patients and families in their home environments. CONCLUSION: Providing support and education for caregivers in the community can be a major transition for therapists accustomed to practicing in more traditional settings. Additional research is needed to explore the ways in which specific practice contexts influence delivery of occupational therapy services.     

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.     

妇科肿瘤照顾者照护体验质性研究的meta整合

目的：通过系统总结妇科肿瘤照顾者的照护体验,旨在全面了解其内心需求,为更好地开展工作提供依据。方法：计算机检索the Cochrane Library、Pub Med、EMbase、Scopus、CINAHL等数据库搜集关于妇科肿瘤患者的照顾者照护体验的质性研究,检索年限为建库至2019年4月。采用澳大利亚JBI循证卫生保健中心质性研究质量评价标准评价文献质量,采用汇集性整合的方法进行结果整合。结果：共纳入7篇研究,提炼出35个完好明确的研究结果,将相似的研究结果归纳形成11个新类别,得出3个整合结果。诊断时的心理状态：震惊、否认和求助;诊断后：照顾者的生活和心理状态的变化;应对：照护者满怀希望,重新开始新的生活。结论：医护人员应关注妇科肿瘤患者的照护者的心理需要,为妇科肿瘤患者提供更优质的家庭护理和更全面的社会支持,提高妇科肿瘤患者及其照顾者的生活质量。     

Delirium in advanced cancer: a psychoeducational intervention for family caregivers

Delirium, a global brain dysfunction, develops frequently in advanced cancer. It is a leading source of distress for family caregivers. Following recommendations from palliative care professionals and caregivers for terminally ill cancer patients, a psychoeducational intervention was implemented in a palliative care hospice to help family caregivers cope with delirium and, eventually, to contribute to early detection. Prior to receiving information on delirium, the majority of the family caregivers did not know what it was or that it could be treated. Few knew that patients in terminal care could become delirious. For caregivers, receiving the intervention increased their confidence they were making good decisions, and the majority felt that all family caregivers should be informed on the risk of delirium (p < 0.009). A specific intervention on delirium, tailored to the needs of the family caregivers, seems beneficial for caregivers and for patients.     

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.