香港脑损伤患者的出院后服务

目的:建立针对脑损伤患者及其看护者的可负担、易获取的出院后电话跟进服务,并为发展区域内有成本效益的连续监护体制提供实证基础。方法:本研究从香港大学玛丽医院脑外科招募35名成年脑损伤患者和26名看护者。参与者在出院后第4周和第12周各接受一次结构化的电话访谈。有调整能力不足风险的患者与看护者将被送交进一步的医疗咨询或心理干预。患者的生理和认知功能,以及患者与看护者的情感功能、知觉到的社会支持和对当前所提供的服务的满意程度都被列入调查。结果:大部分患者报告他们的生理状况有明显改善。相当多的患者在出院后经历过认知困难并报告所接受到的社会心理支持不足。大多数看护者报告在看护期间健康、情感功能和社会生活受损。患者与看护者都对服务表示满意,看护者的满意程度更高。结论:脑损伤患者及其看护者都受益于出院后电话跟进服务。两者都同意该项服务有助于识别有调整能力不足风险的个体,并提供及时的建议和情感支持。看护工作会明显损害看护者的生理、情感功能和社会生活,提示需要为他们提供关于看护技巧、生活调整和压力管理的意见与建议。     

Perceived support needs of family caregivers and implications for a telephone support service.

The purposes of this study were: to identify the perceived support needs of family caregivers of persons living with chronic illness (physical or cognitive) and receiving home-care services, and to describe the types of telephone services that would meet the expressed needs of caregivers. The qualitative design used semi-structured interviews. A total of 34 caregivers (mean age 62 years) participated in the study. The care recipients (mean age 78 years) were primarily the husband/wife or parent of the caregiver. The most commonly expressed caregiver needs were: a social life, instrumental support (e.g., respite, assistance with physical care, financial compensation), informational support, and emotional support. Most caregivers said they would use a telephone support service provided by a professional (71%) or a fellow caregiver (59%) if available. The results of this study support a pilot study and evaluation of a telephone support service for family caregivers.     

Caregiving stress among community caregivers for the elderly: does institutionalization make a difference?

Nurses in community settings are frequently exposed to elderly persons who receive a significant amount of physical and/or psychosocial support from one or more informal caregivers. Although numerous investigations exist examining stress and coping in persons who provide such care for elderly persons, little is known about the caregiver's status once full-time caregiving ceases. This study describes emotional and physical components of caregiving stress in a convenience sample of 124 caregivers. Of these, 31 had placed their charge in a nursing home, while 93 had not. A multivariate analysis of variance (MANOVA) between placed-nonplaced groups revealed no significant differences in the total score or Role and Personal Strain subscales of the Burden Interview (J. Zarit & S. Zarit, 1983). Implications for community health nursing practice involve providing ongoing counseling and support of the caregiver and his or her charge, preparing both for the placement experience should it be indicated, and continued follow-up care post-placement. Greater collaboration between community-based and institutionally based nurses can facilitate implementation of these strategies.     

Caregivers of frail rural older adults. Effects of an advanced practice nursing intervention

Informal caregivers are responsible for providing the majority of post-discharge care for many frail older adults in rural settings. The purpose of this study was to investigate whether an advanced practice nurse (APN) intervention would promote more positive physical and emotional outcomes in caregivers of rural older adults who are frail and were recently discharged from urban-based hospitals. Thirty-two caregivers of frail rural elderly individuals were randomly assigned to treatment (APN intervention) and control groups (no APN intervention). Assessments of caregiver outcomes were collected via telephone interviews at 48-hour, 2-week, and 4-week intervals after hospital discharge of the frail rural older adults. Outcomes were operationalized as caregiver physical health and well being, and stress and burden. The former was measured using the Health and Daily Living form (HDL) and the latter by the Thoughts and Feeling and Time and Energy subscales of the Caregiver Burden Inventory (CBI). Additional information on caregiver problems and APN visit time was collected by the APN using the Omaha Classification System. Caregivers in the treatment group experienced significantly more positive physical and emotional health outcomes. The caregivers who received the APN intervention had higher self-rated emotional health scores, fewer emotional symptoms at Week 4, fewer depressive symptoms at Week 2 and 4, and lower Thoughts and Feelings stress scores at 48 hours than the control group. Findings support the importance of addressing the needs of caregivers post-discharge and the ability of APNs to improve post-discharge outcomes for home health care recipients and their caregivers.     

Effects of a Nurse-led Survivorship Care Program on the Health and Resilience of Primary Caregivers of Patients With Advanced Head and Neck Cancer: A Randomized Controlled Trial

ObjectivesThe present study aimed to evaluate the effects of a nurse-led survivorship care program (SCP) on emotional distress, social support, physical health, mental health, and resilience in primary caregivers of patients with advanced head and neck cancer.Data SourcesA randomized controlled trial was conducted. One hundred patient-primary caregiver dyads were randomized into the nurse-led SCP group (experimental) or the usual care group (control). Participants completed a self-reported questionnaire, including measures of emotional distress, social support, physical health, mental health, and resilience. After 6 months, the experimental group reported a significant improvement in emotional distress, social support, physical health, mental health, and resilience. Compared with the control group, measures of emotional distress, physical health, overall resilience, and the resilience aspects of equanimity and perseverance improved in the experimental group.ConclusionAn SCP may feasibly help alleviate emotional distress, improve social support, increase physical and mental health, and strengthen resilience in the primary caregivers of patients with head and neck cancer. Health care providers should encourage primary caregivers to join an SCP.Implications for Nursing PracticeThe nurse-led SCP can be applied before patients complete treatment, which may increase the positive effect on physical health and adaptation.     

Time and difficulty of tasks provided by family caregivers of stroke survivors.

Family caregivers of stroke survivors are at risk for negative health outcomes such as depression, psychosocial impairments, and even mortality as a result of providing care. Shortened hospital stays have contributed to the urgent need for caregivers to manage difficult and time-consuming tasks required for the care of stroke survivors in the home setting. The purposes of this study were to (a) identify which tasks were perceived as most time-consuming and difficult, (b) determine which of these tasks were most predictive of mood and other negative caregiver outcomes, and (c) evaluate the psychometric properties of the Oberst Caregiving Burden Scale (OCBS) as a measure of tasks in stroke caregivers. A cross-sectional design was employed using mailed questionnaires from 116 family caregivers of stroke survivors featuring the OCBS, the Profile of Mood States Short Form, and the Bakas Caregiving Outcomes Scale. The tasks perceived as most time-consuming and difficult, which also were predictive of mood and other negative caregiver outcomes, were managing finances, managing behaviors, and providing emotional support. Strong psychometric properties of the OCBS were found at both item and subscale levels. Developing an individual profile using the OCBS items may help to target individual support interventions for caregivers. Suggested interventions include referring caregivers to resources for tasks that fall outside the scope of nursing practice, supporting caregivers with tasks such as providing emotional support or managing behavioral problems, and encouraging caregivers to seek care for their own physical, emotional, or social needs.     

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.     

The difficulties faced by informal caregivers of patients with terminal cancer in Hong Kong and the available social support

This study aimed to explore the difficulties experienced by primary informal caregivers of Chinese patients with terminal cancer in Hong Kong and the social support available for such caregivers. For this exploratory study, 21 primary informal caregivers of patients with terminal cancer were recruited from a hospice home service to complete a questionnaire. The results show that all but one of the caregivers (95.2%) perceived difficulties in rendering care. They reported experiencing four major kinds of difficulties: relationship with the care receiver (n = 11, 52.4%), emotional reactions to caring (n = 9, 42.9%), physical demands (n = 10, 47.6%), and restricted social life (n = 11, 52.4%). Of the 21 caregivers, 20 (95.2%) felt that the support received from hospice home care nurses was useful, especially in skill training (n = 16, 76.2%), informational support (n = 20, 95.2%), and emotional support (n = 20, 95.2%). Informal caregivers also indicated that home care nurses provided more useful overall support than family members and friends (chi2 = 11.35; P =.003). With a better understanding of the difficulties experienced by caregivers and the support they receive, hospice home care nurses will be in a better position to identify effective strategies for helping informal caregivers cope with their difficult circumstances.     

Caregiver bodywork: family members' experiences of caring for a person with motor neurone disease

Aim. This paper reports a study of how family members caring for people living with motor neurone disease managed the deteriorating body, their own bodywork and the associated emotional labour. Background. People living with the neurodegenerative condition of motor neurone disease face the prospect of dying in 3–5 years from progressive loss of voluntary muscle mass and function, culminating in respiratory failure. Theories concerning the body in illness have been used to illustrate patient perspectives; however, family caregivers’ experiences of the body have been neglected. Method. An ethnographic case study was undertaken with 18 primary family caregivers and six peripheral caregivers. Primary caregivers participated over 10 months in three face‐to‐face, semi‐structured interviews which included mapping their support networks using ecomaps. Observational data were also recorded as field notes. Peripheral caregivers were interviewed once during the same time period. The data were generated between 2003 and 2004. Findings. Informal caregiving requires engagement in various aspects of bodywork. Three body concepts were identified: the visible body – how the disease affected the patient and caregivers; the dependent body – the resulting care requirements; and the social body – how living with motor neurone disease affected their social support networks. The visible body is a continual reminder of the ravages of the disease, while the dependent body demands physical and emotional care. Social interactions decline over time, depriving family caregivers of the much needed support for sustaining their commitment to the bodywork required in caregiving. Conclusion. The demands of bodywork for family caregivers are increased by the continual presence of emotional labour as they seek to implement the best way to support their relative with motor neurone disease. Nurses and allied healthcare workers need to assess each family situation, asking appropriate questions to establish the most appropriate interventions to facilitate supportive care.     

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.     

“I just don’t focus on my needs.” The unmet health needs of partner and offspring caregivers of people with dementia: A qualitative study

BackgroundFamily caregivers of people with dementia have significant unmet health needs. There is a lack of research that differentiates between the needs that are specifically relevant to partner and offspring caregivers.ObjectiveThe aim of this study was to examine the health needs of partner and offspring caregivers of older people with dementia, including the barriers they experience in meeting their needs.MethodSemi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analysed using thematic analysis.ResultsFive themes were identified within the data. The first theme represents caregivers’ overall assessment and perception of their health needs. The remaining four themes represent the most important aspects of caregivers’ health needs; mental health, emotional support and social relationships, healthy diet and exercise, and personal time. While these themes were similar for offspring and partner caregivers, the specific needs and barriers within these areas were different. A prominent barrier for partner caregivers was that they had difficulty in acknowledging their needs. Despite this, partner caregivers demonstrated unmet emotional support needs, as they no longer had emotional support from their partner with dementia. They also had an unmet need for time away from the care-giving role, yet they were reluctant to leave the person with dementia. Offspring caregivers’ unmet health needs were easily identified and were focused on their unmet mental health needs and feeling socially isolated. These unmet mental health and social support needs were related to their unmet health needs in other areas such as exercise, diet and having time to themselves.ConclusionCaregivers have significant unmet needs and these are often complex, multidimensional, and they often differ between partner and offspring caregivers. Gaining a more detailed understanding of the needs and barriers that are particularly relevant to either partner or offspring caregivers will assist in the development of interventions that are tailored to the unique needs of caregivers.     

Spiritual experiences of parents and caregivers who have children with disabilities or special needs

Despite the fact that faith has been described as a universal concern, and despite the realization that the presence of social supports is an essential element in successful coping, there has been no systematic examination of the quality of spiritual networks important to families impacted by childhood disability. There is also little understanding of how spirituality in children influences the lived experience of faith in the adults who care for them. Findings reported here come out of a larger existential phenomenology study that examined the lived experience of parents or caregivers who sought to obtain formal religious education for their children with special needs. Participants included 26 parents/caregivers representing 44 children with special needs and 15 different faith traditions. Narratives indicated that many clergy and members of faith communities either devalue or fail to recognize the spiritual lives of disabled children. This lack of recognition was associated with participant disillusionment or crises of faith and a sense of alienation from potential sources of emotional support. In contrast, those participants whose children were welcomed reported feeling sustaining support and strengthened faith. No parent or caregiver perceived nurses as having an awareness of or interest in spirituality within families of children who have special needs.     

失能老年人的年龄及自理能力对家庭照顾者负担的影响

目的探讨失能老年人的年龄、失能程度对家庭照顾者负担的影响。方法通过整群抽样,采用KatzADL、照顾者负担问卷(CBI)、自制的一般资料问卷对203例失能老年人及其家庭照顾者进行面对面调查。结果失能老年人家庭照顾者负担总分为(31.56±18.51)分,95.6%的家庭照顾者为轻度至中度负担;60~74岁年轻老年人的照顾者负担重于75~89岁老老年人和≥90岁长寿老年人的照顾者负担,年轻老年人的照顾者负担主要表现为较重的时间依赖性负担、发展受限性负担及身体性负担;完全失能老年人的照顾者负担高于部分失能老年人照顾者,表现为较高的时间依赖性负担、发展受限性负担、身体性负担以及情感性负担。结论失能老年人家庭照顾者普遍存在轻度至中度负担。年轻老年人、重度失能老年人的家庭照顾者负担更重,均以较重的时间依赖性负担、发展受限性负担、身体性负担为特点,后者还体现为较重的情感性负担。