Do-not-resuscitate decision making for terminally ill older patients in the emergency department: An explorative,descriptive inquiry of Chinese family members

Many terminally ill older adults depend on family members to make medical decisions in China. Many family members find it difficult to make do-not-resuscitate (DNR) decisions in emergency departments (ED). Currently, factors that affect DNR decision making by family members for older adults needing emergency care have not been well studied. This qualitative inquiry explores factors influencing DNR decision-making among family members of terminally ill older adults in ED. Semi-structured in-depth interviews were conducted for a 12-family member of terminally ill older adults at ED in China. Results of the conventional content analysis showed that family members made DNR decisions based on a wide of reasons: (a) subjective perception of family members, (b) conditions of the terminally ill older adults, (c) external environmental factors, and (d) internal family factors. The findings of this study expand our knowledge and understanding of factors influencing DNR decision-making by family members of terminally ill older adults in ED.     

Easing the impact of the family caregiver's role

This article describes problems facing family caregivers of elderly, ill, or disabled people. The physical and emotional impact of caregiving is explored, and the concept of role fatigue is discussed to assist nurses in understanding caregivers' problems and needs. Motivational factors for becoming a caregiver and community sources of support are addressed. Rehabilitation nurses are challenged both to accept the responsibility of identifying caregiver role problems, and to help caregivers obtain assistance that will enable them to continue family members' care in a home environment.     

Caregivers of chronically ill elderly: perceived burden

Family members play a major role in providing caregiving assistance to elderly persons and their families. The effect of stressors on family members caring for a physically or mentally ill person has been referred to as caregiver burden. It is an important concern and will become more so with the inevitable aging of the population. Community health and home health nurses must be able to recognize those factors associated with caregiver burden to effectively render care to their clients and families. This study examined caregiver characteristics and the degree to which these variables affect caregiver burden. Although much research focuses on caregivers of Alzheimers clients, this research utilized a wider variety of client diagnoses to examine caregiver burden of those clients. A sample representing 88 caregivers of elderly chronically ill persons was obtained from various sources in the community. Demographic data about the caregiver was collected. The amount of burden they experienced was recorded using the Burden Interview (Zarit et al., 1986). This study found that there was a positive correlation between increased activities of care performed by the caregiver and caregiver burden. This included both the provision of direct care such as bathing and indirect care such as running errands, preparing meals, and performing housework. It was found that sons, as caregivers, reported significantly less burden than did daughters or other relatives. Community health and home health nurses working with families in a caregiving situation have an opportunity to reduce caregiver burden. This is done by assessment of the caregiving environment and implementation of plans for early intervention.     

Intervention to promote recognition of the rights of families of an elderly relative with dementia living in a long-term care facility

The rights of families of an institutionalized elderly relative with dementia have yet to be recognized. The results of our pilot study based on a participatory approach show, among other things, that family caregivers, women for the most part, have little input in the decisions regarding their relative's care and are uneasy to express their opinions to health care staff. As part of the pilot study, caregivers developed a group intervention program entitled "Taking Care of Myself" geared, among other things, towards increasing their competence in expressing their viewpoint to health care staff and in taking part in care-related decisions. According to an efficacy study conducted after the pilot study, the program produced successful outcomes in terms of caregiver competence in dealing with the health care staff and of perceived challenge of the caregiver situation. Recommendations are made aimed at giving caregivers recognition, that is their due.     

Family caregivers' decision process to institutionalize persons with Parkinson's disease: a grounded theory study

BackgroundParkinson's disease is a degenerative neurological disorder affecting millions. Treatment priorities focus on delaying its progression and resulting disability, and helping individuals continue to live at home as long as possible. This often requires long-term assistance by family caregivers.AimsThe purpose of the study was to understand (1) family caregivers’ experiences in caring for a relative with Parkinson's disease, and (2) factors that influenced the decision to place the relative in a long-term care facility.ParticipantsTwenty semi-structured interviews were conducted with adult family members (17 female, 3 male) acting as full-time primary caregivers for a relative with Parkinson's disease.MethodGrounded theory was used to explore the process of healthcare decision-making and to illustrate the experiences of caring for persons with Parkinson's disease. The interview questions centered on family caregiving experiences and on how these caregivers made long-term care decisions on behalf of their loved ones. Data were coded and analyzed using dimensional analysis.FindingsThe caregiving model developed from the data illustrated that heightened caregiver strain—a risk factor for institutionalization—results from increased caregiving load and increased illness severity over time. Safety concerns, falls with severe injury, managing changes in health, and depleted support also influenced the decision to institutionalize the relative with Parkinson's disease.ConclusionsImplications from this research suggest the need for enhanced communication between providers and caregivers, formalized caregiver assessments, improved care coordination and family-centered interventions to avoid premature institutionalization.     

Client-caregiver-nurse coalition formation in decision-making situations during home visits

AIMS: The purpose of this paper is to report the findings of an exploratory study designed to test a portion of the Theory of Collaborative Decision-Making in Nursing Practice for Triads by examining the relation between types of decisions and formation of coalitions during triadic interactions among older home healthcare clients, their caregivers and home healthcare nurses during seven admission visits for home health care. BACKGROUND: Although home healthcare nurses include clients and family members in decision-making about care, few publications address the nature of interactions among triads of clients, caregivers and nurses in home health care and the association between decision-making and those interactions. METHOD: The data presented in this paper are a secondary analysis of data originally collected in 1994. The sample included 157 decision-making situations identified from interactions of seven triads of older home healthcare clients, their caregivers and nurses. Qualitative data were collected by participant observation and audio-recording of admission visit interactions among clients, caregivers and nurses. Content analysis, augmented by Ethnograph software, was used to analyse the data. FINDINGS: Coalitions were evident in just eight of the 157 decision-making situations. All of the theoretically possible types of nursing care decisions (programme, operational control, agenda) were observed. Each coalition involved one nursing care decision; two coalitions formed in one triad. Seven coalitions formed between nurse and caregiver against client during two programme and five operational control decisions. One coalition formed between client and caregiver against nurse during an agenda decision. No coalitions formed between client and nurse against caregiver. CONCLUSIONS: Although the study sample was small, the findings expand understanding of the relation between types of decisions and formation of coalitions during triadic interactions in home health care, and provided empirical support for a portion of the Theory of Collaborative Decision-Making in Nursing Practice for Triads.     

The caregiving experience: how much do health professionals understand?

Legal, social and economic factors have changed the delivery of care to people who have a mental disorder. Many of these people are now treated in the community and they live with or in close proximity to their family. The aim of this paper is to provide health professionals with an insight into the experience of being a caregiver to a person with a person with a mental disorder. For these families caregiving becomes an integral part of everyday life. Positive outcomes for both the caregiver and the ill family member are more likely to occur when effective levels of collaboration exist between health professionals and caregivers. Collaboration is enhanced when caregivers and health professionals value each other's contribution to the ill family member's care. Often the burden, stress, and socio-economic effects on the family caring for a person with mental illness is not sufficiently appreciated and further increases this burden. A review of the literature from the caregiver's perception is presented. An increased understanding of the caregiving experience will enable health professionals to develop and implement strategies that facilitate positive outcomes for the caregiver and the ill family member.     

Understanding the continuum of palliative care for patients and their caregivers

We describe a process for assisting seriously ill patients and their caregivers in prioritizing their preferences for care during advanced illness. Thirty-two seriously ill patients and their caregivers participated in seven 90-minute focus groups conducted cross-sectionally in Denver, Colorado; San Francisco, California; and Washington State. Fourteen expert-defined end-of-life quality indicators were presented to each group, and quantitative unweighted rankings were obtained through patient and caregiver preferences. Aggregated weightings were used to rank the top five quality measures for exploration of open-ended questions. Pain management was the most important quality indicator among all three groups. Overlap in preferences were found for at least two of the groups for symptom management, monitoring medical issues, advance care preferences and assessment of family and caregiver involvement. Caregivers were more focused on bereavement support. Variation in preferences for end-of-life care by patients and their caregivers reflects the need to understand the individual decision-making regarding end-of-life care. Quality improvement activities are beginning to address these needs.     

Modifiable factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients

Purpose

Higher caregiver burden is associated with poor quality of life among family caregivers. However, in Korea, very few studies have examined factors associated with caregiver burden. The present study investigated factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients, particularly modifiable factors as a potential target of intervention strategies.

Methods

A cross-sectional study using self-administered questionnaires was performed. Sixty-four family caregivers of terminally ill cancer patients who were admitted to the hospice-palliative care unit of a university hospital in South Korea were included. To identify caregiver burden, the Caregiver Reaction Assessment scale (CRA) was used in this study. Time spent in providing care per day, number of visits per week from other family members, family functioning, and a positive subscale, self-esteem, of the CRA were deemed as modifiable factors. Other sociodemographic, caregiving characteristics of the subjects were non-modifiable factors.

Results

Longer time spent providing care per day, fewer weekly visits from other family members, poor family functioning, and low self-esteem were considered as modifiable factors associated with caregiver burden. Low monthly income and the spouse being the family caregiver were non-modifiable factors.

Conclusions

Our study has practical significance in that it identifies modifiable factors that can be used to devise intervention strategies. Developing and applying such intervention strategies for alleviating the factors associated with high caregiver burden could be important for improving the quality of life of both patients and their families.     

The self-efficacy of family caregivers for helping cancer patients manage pain at end-of-life

This preliminary study examined the self-efficacy of family caregivers with regard to helping cancer patients manage pain at end of life. A sample of 63 family caregivers of hospice-eligible cancer patients with pain provided ratings of their self-efficacy in assisting the patient in pain management and rated their own mood and level of caregiver strain. Patients completed measures of pain and quality of life. Data analyses revealed that caregivers who rated their self-efficacy as high reported much lower levels of caregiver strain as well as decreased negative mood and increased positive mood. Caregiver self-efficacy in managing the patient's pain was related to the patient's physical well-being. In dyads where the caregiver reported high self-efficacy, the patient reported having more energy, feeling less ill, and spending less time in bed. Considered overall, the results of this study suggest that caregiver self-efficacy in pain management is important in understanding how caregivers adjust to the demands of caring for cancer patients who have pain at the end of life.     

End-of-life caregiving: what helps family caregivers cope?

Patient care needs and patient quality-of-life (QOL) deficits can be significant stressors for family caregivers. Often, greater caregiving demands and poorer patient QOL are associated with greater caregiver strain. However, caregiver coping behavior can attenuate the effect of caregiving stressors on caregiver strain. This study examined the relationships among caregiving stressors, coping, and caregiver strain in a sample of 31 family caregivers and their terminally ill loved ones enrolled in home hospice programs. Caregiving stressors included patient activity of daily living (ADL) needs and dimensions of patient QOL. Coping was measured with the Family Crisis Personal Evaluation Scale (F-COPES), which has five coping scales: acquiring social support, reframing, seeking spiritual support, passive appraisal, and mobilizing the family to acquire and accept help. Caregiver strain was significantly correlated with patient ADL needs (r = 0.51), patient psychological distress (r = 0.42), and patient existential QOL (r = -0.65). Regression equations indicated that reframing coping lessened caregiver strain. Caregivers who accepted their loved one's illness, redefined illness-related problems in a more manageable way, and felt capable of solving illness-related problems had less caregiver strain than caregivers who used less of a reframing coping style.     

Development and testing of the theory of collaborative decision-making in nursing practice for triads

BACKGROUND: Although nurses depend heavily on informal family caregivers to provide care to clients and to be involved in care planning and decision-making, no nursing theories that include the client, the caregiver, and the nurse were available to guide collaborative care planning and decision-making. AIM: The purpose of this paper is to describe the construction and initial testing of the theory of collaborative decision-making in nursing practice for a triad. The theory represents an extension of Kim's theory of collaborative decision-making in nursing practice. Kim's theory was developed to describe and explain collaborative decision-making in a dyad (client and nurse). The inclusion of a third person (family caregiver) in the theory required the addition of concepts about the caregiver, coalition formation, and nurse and caregiver outcomes. The expansion of Kim's dyadic theory to a triadic theory was achieved by means of a modified version of the theory derivation process described by Walker and Avant. CONCLUSIONS: The theory of collaborative decision-making in nursing practice for a triad can be used to guide further research and clinical practice. The theory provides a framework for researchers who are interested in studying the effects of collaboration regarding decision-making among nurses, family caregivers, and clients. The initial testing of the new theory in home health care nursing revealed variety in the nature of the client-caregiver-nurse relationships, the many processes used by the nurses in proceeding with the home visits, a multitude of decisions considered and different collaborative, noncollaborative, and coalition-forming interactions. The limited evidence of the empirical adequacy of the theory precludes development of definitive guidelines for clinical practice at this time. More studies are required before clinical practice guidelines can be developed.     

老年鼻咽癌病人家庭照护者对缓和医疗需求及相关因素分析

[目的]了解老年鼻咽癌病人家庭照护者对缓和医疗需求的现状,分析相关因素。[方法]采用简单随机抽样法,于2018年2月—2019年8月选取广西医科大学附属第一医院老年鼻咽癌病人的家庭照护者为研究对象。采用自行设计的问卷,调查家庭照护者的一般资料及对缓和医疗的需求情况,分析影响家庭照护者对缓和医疗需求因素。[结果]老年鼻咽癌病人家庭照护者对缓和医疗需求总分为(89.11±14.78)分,其中以照护者精神心理需求的得分指标最高;拟合多元线性回归分析结果显示,年龄、有无照护经验及与病人关系是影响家庭照护者对缓和医疗需求的独立因素(P<0.05)。[结论]老年鼻咽癌病人家庭照护者对缓和医疗需求程度高,且需求愿望与照护者年龄、有无照护经验及与病人关系有关,应具有针对性进行专业知识宣教及心理健康教育,有助于改善家庭照护者的心理状态,优化病人的生活质量。     

中老年维持性血液透析患者主要照顾者负担水平及其影响因素分析

目的 调查中老年维持性血液透析患者主要照顾者负担现状,分析其相关的影响因素及探讨。方法 便利抽样某三级甲等医院,采用一般人口学问卷、应用Zait负担量表、社会支持量表、自我效能感量表对115例中老年血液透析患者主要照顾者进行调查分析,采用多元线性回归分析其影响的因素。结果 中老年血液透析患者主要照顾者负担总分为(41.50±13.85)分,回归分析显示：社会支持、自我效能、年龄、文化程度、婚姻状态、工作状态、家庭经济收入进入回归方程(P＜0.05)。结论 中老年维持性血液透析患者主要照顾者负担处于中等水平,受自社会支持、自我效能、婚姻状态、家庭经济收入影响。护理人员应及时评估主要照顾者负担的影响因素,扩大中老年维持性血液透析患者主要照顾者社会支持,提供相应的健康教育,增强信心,为今后干预提供依据,最终提高患者及照顾者的生活质量。     

Factors which influence coping: home-based family caregiving of persons with advanced cancer

The findings from a qualitative study of how caregivers coped while they cared for a dying family member at home are presented. Fifteen family caregivers were interviewed twice following the death of their family member. Although it was not one of the original objectives of the research, coping emerged as a category needing further analysis. There were factors that either facilitated or interfered with caregiver coping. Those factors that facilitated their coping included characteristics of the caregivers themselves; contributions made by the dying person; and supportive networks, both formal and informal, available to the caregivers. Interfering factors related to caregiver experiences with informal and formal systems. From the more distant perspective of post-death reflections, the caregivers provided insight into how their coping was grounded in the meaning associated with their experiences.     

The influence of end-of-life cancer care on caregivers

The purpose of this secondary analysis was to glean from prospective data whether those caring for elderly family members recently diagnosed with cancer who ultimately died reported different caregiver depressive symptomatology and burden than caregivers of those who survived. Findings from interviews with 618 caregivers revealed that caregiver depressive symptomatology differed based on family members' survival status, and spousal caregivers experienced greater burden when a family member was near death than did non-spousal caregivers. Family member symptoms and limitations in daily living, as well as caregiver health status, age, and employment, were associated with caregiver depressive symptomatology and burden; however, these associations had no interaction with family member survival status.     

Stress associated with tasks for family caregivers of patients with cancer in Hong Kong.

Family caregivers share the strain of cancer and are at risk of physical and psychological symptoms in relation to caregiver stress. This study investigated the relationships between perceived difficulty in managing caregiver tasks and the experience of stress symptoms among 26 family caregivers of terminally ill patients with cancer in Hong Kong. The findings revealed that more stress symptoms were experienced by caregivers who had reported increased difficulty in managing caregiver tasks (rs = 0.64; p < 0.001). Wilcoxon signed-ranks test indicated that psychological stress symptoms, rather than physical symptoms, overwhelmed most of the caregivers (z = -2.15; p < 0.05). There were significantly more negative responses to stress by caregivers who had a shorter duration of experience in providing care. In addition, caregivers who had less education were at higher risk of developing stress (p < 0.01). These findings indicate the need for the provision of support to facilitate the emotional and physical adaptation of caregivers at risk for health problems.     

Caring for the terminally ill: experiences of Latvian family caregivers

AIM: To increase understanding of the experiences and needs of family caregivers of terminally ill persons in Latvia. BACKGROUND: Latvia has high death rates from cardiovascular disease and cancer, and families care for the terminally ill with little preparation and support. Health professionals also have little preparation in supporting these patients and families at the end of life. METHODS: A qualitative study was carried out in the summer of 2004 in Latvia. Data collection was by semi-structured interviews with caregivers (n=18) whose care recipients died at least 1 year previously. FINDINGS: The caregiver narratives addressed experiences that paralleled the trajectory of the patient's illness: the disruption of normal life patterns; taking on the caregiver role; establishing new patterns and learning role competencies; engaging in preparation for dying; and the gains and losses of the caregiving experience as seen in retrospect. CONCLUSIONS: The caregiver narratives suggested a need for more education in practical caregiving; access to patient care equipment and supplies; and a need for ongoing support and guidance by knowledgeable medical personnel during caregiving.     

失能老年人照顾者护理负担的研究

本文介绍了失能老年人家庭照顾者护理负担的概念和研究工具,从照顾者、被照顾者、家庭和社会等主体角度出发,分析了失能老年人家庭照顾者护理负担的影响因素和干预措施,并指出解决失能老年人长期照护问题应依靠家庭、社区、社会组织等力量,有效减轻照顾者护理负担。