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.     

Vigilance. Evolution and definition for caregivers of family members with Alzheimer''s disease

The language of caregiving relies heavily on terms that are frequently negative such as caregiver stress and burden, but these are not universally accepted phenomenon. The purpose of this article is to report on the development of caregiver vigilance and to suggest it offers both neutral terminology and a means to include caregivers' perceptions of their supervisory role. The concept of vigilance emerged from a qualitative study of caregivers of family members with Alzheimer's disease. Vigilance is defined as the caregivers' continual oversight of their care recipients' activities. The five key components of vigilance were watchful supervision, protective intervening, anticipating, always on duty, and being there. Vigilant caregivers saw themselves as "on duty" even when they were not "doing things." The findings of this study support caregivers' perceptions of 24-hour-a-day responsibility. Nurses need to realize that caregiver vigilance is not necessarily diminished when professional caregivers intervene or institutionalization occurs. Debriefing caregivers about their unique family caregiving knowledge and incorporating it into caregiving is a key strategy for nurses to use to build caregiver trust and reduce their vigilance time.     

Family caregivers of adults with acquired physical disability: Thai case–control study

This case–control study compares the health of Thai family caregivers of adults with acquired physical disabilities with others without similar responsibilities. To ascertain health perceptions, face‐to‐face structured interviews using the Short Form (36) were conducted with participants randomly selected from primary care units in eastern Thailand (150 in each group). Despite similar sociodemographic profiles, caregivers reported more health problems and harmful health behaviours. Mean scores for physical and mental health were significantly lower. Factors contributing to poorer health among both caregivers and controls were older age, low educational level, insufficient income and existing health problems. Additional factors for caregivers were gender, spousal or in‐law relationship, high dependency, long caregiving time, lack of previous experience and other caregiving responsibilities. This study identifies an urgent need for support to promote caregivers' health to enable them to maintain their vital role.     

Living with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND): decision‐making about ‘ongoing change and adaptation’

Aims and objectives. To present a model that explicates the dimensions of change and adaptation as revealed by people who are diagnosed and live with amyotrophic lateral sclerosis/motor neurone disease. Background. Most research about amyotrophic lateral sclerosis/motor neurone disease is medically focused on cause and cure for the illness. Although psychological studies have sought to understand the illness experience through questionnaires, little is known about the experience of living with amyotrophic lateral sclerosis/motor neurone disease as described by people with the disease. Design. A grounded theory method of simultaneous data collection and constant comparative analysis was chosen for the conduct of this study. Methods. Data collection involved in‐depth interviews, electronic correspondence, field notes, as well as stories, prose, songs and photographs important to participants. QSR NVivo 2^® software was used to manage the data and modelling used to illustrate concepts. Findings. Participants used a cyclic, decision‐making pattern about ‘ongoing change and adaptation’ as they lived with the disease. This pattern formed the basis of the model that is presented in this paper. Conclusion. The lives of people living with amyotrophic lateral sclerosis/motor neurone disease revolve around the need to make decisions about how to live with the disease progression and their deteriorating abilities. Life decisions were negotiated by participants to maintain a sense of self and well‐being in the face of change. Relevance to clinical practice. The ‘ongoing change and adaptation’ model is a framework that can guide practitioners to understand the decision‐making processes of people living with amyotrophic lateral sclerosis/motor neurone disease. Such understanding will enhance caring and promote models of care that are person‐centred. The model may also have relevance for people with other life limiting diseases and their care.     

Dementia‐friendly faith village worship services to support African American families: Research protocol

African American caregivers for persons living with dementia frequently experience emotional strain, burden, social isolation, and depression. One source of support for them when in distress is their church community. However, many African American churches do not have programs to support families and congregants living with dementia. Dementia often restricts persons living with dementia and their caregivers from attending church. Both become increasingly uncomfortable in church settings due to fear of embarrassment, uncertainty about the behavior of the person living with dementia, and shame. Church attendance and religion has been shown to be beneficial for caregivers and elders living with dementia. However, there is little work exploring how involvement in religious practices together (caregivers and persons living with dementia) might enhance the quality of life for these families. This protocol is written to detail the designing and testing of the feasibility and preliminary efficacy of a dementia‐friendly faith village worship service. In the study, we will examine how dementia‐friendly faith village worship services support the well‐being of caregivers and care recipients in three African American churches through observation, interviews, and surveys. A sample of 30 dyads of African American caregivers and persons living with dementia will be asked to attend six modified worship services together over 6 months. In this study, we hope to demonstrate the significant role of churches in the lives of African American family caregivers and persons living with dementia and show that a faith‐based, family‐oriented approach can promote a greater quality of life for African American families living with dementia.     

Impact of caregiving on Finnish family caregivers

Scand J Caring Sci; 2012; 26; 211–218 Impact of caregiving on Finnish family caregivers Background: Numerous studies have examined the caregiver burden that family caregivers often experience. However, caregiving situations may also include positive elements that have recently received greater research attention. Aim: The aim was to examine the positive value and negative impact of caregiving for the family caregiver. Method: Caregiving experience was measured with the modified 15‐item Carers of Older People in Europe Index. Surveys were completed by family caregivers at the baseline and after 6 months. Results: At the baseline, most family caregivers thought that caregiving was worthwhile, had a good relationship with the person they cared for and coped well as a caregiver. Fifty‐five per cent of the respondents did not feel trapped in their caregiver role, though a third did, and a majority found caregiving to be too demanding. Most perceived themselves to be supported by their family, while 40% did not feel supported by health and social services. During the 6‐month study period, the negative impact score declined, and the scores for positive value and quality of support improved. The care recipient’s management at home (p < 0.001) was the single best predictor of the negative impact on the family caregiver; the family caregiver’s older age (p < 0.01) best predicted the quality of support; and the family caregiver’s good relationship with the care recipient (p < 0.01) best predicted the positive value of caregiving. Conclusions: The study indicated that even if the health status of the care recipient dramatically worsened, the family caregiver’s experiences of caregiving became more positive. This is because family caregiving was perceived to be worthwhile, most family caregivers had a close relationship with the person they cared for and they received support from their family. Interventions that focus on family caregivers’ positive experiences of caregiving would be important in protecting them from the negative consequences of caregiving.     

社区失智老人居家照顾者照护技能培训效果研究

目的 探讨对社区失智老人居家照顾者实施照护技能培训的效果.方法 通过调查上海市某社区失智老人居家照顾者照护技能现状及需求,并基于循证医学与专家论证,制定"失智老人居家照顾者照护技能培训方案".选取失智老人居家照顾者39名,按照"失智老人居家照顾者照护技能培训方案"实施为期3个月的培训.采用自行设计的失智老人居家照顾者照护技能调查问卷、世界卫生组织生活质量简表进行干预前后评估.结果 干预后居家照顾者照护技能得分、生活质量得分均明显高于干预前((t=10.710,t=7.778),差异均具有统计学意义(P<0.01).结论 规范化的照护技能培训,可以有效提高社区失智老人居家照顾者照护技能,提升照顾者的生活质量.     

Caring for loved ones with frontotemporal degeneration: The lived experiences of spouses

There is an abundant literature about the experience of caregiving for a spouse living with Alzheimer's disease (AD), but there are very few qualitative studies about caregiving for persons living with Frontotemporal Degeneration (FTD). FTD causes a change in personality and affected persons may lose the ability to adhere to social norms. Thus, the emotional loss caregivers experience is often confounded by anger in response to embarrassing and socially inappropriate behaviors. In this paper, we offer a glimpse of this lived experience through the voices of two spouses whom we interviewed, each with experience caring for persons living with FTD. We suggest that FTD caregivers experience a loss of emotional attachment to their spouse because of their partner's behavioral symptoms. This loss gives rise to feelings of isolation and anger as caregivers assume new roles and reimagine their future. The findings from these interviews illuminate the need for more research and greater attention and support for FTD caregivers early in the disease trajectory.     

A model of caregiving through the end of life: seeking normal

Informal family caregivers provide significant contributions to end-of-life (EOL) care. A theoretical model of the phases and transitions of EOL caregiving was explicated using grounded theory methods to explore the experiences of 46 family caregivers of adults suffering a variety of life-limiting conditions. The derived model describes four phases of caregiving spanning prediagnosis through bereavement. Phases are demarcated by key transitions experienced when the illness progression manifestly challenges the established "steady state" achieved by the caregiver. The basic social process was defined as "seeking normal" as caregivers sought reliable patterns of everyday life while meeting the demands of caregiving. Understanding the progression of EOL caregiving enables clinicians to better support family caregivers as both coproviders and corecipients of care.     

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.     

The needs of family caregivers of frail elders during the transition from hospital to home: a Taiwanese sample

The needs of family caregivers of frail elders during the transition from hospital to home: a Taiwanese sample This study explored the needs of family caregivers during the transition from hospital to home. Data from 37 face-to-face interviews with 16 caregivers before discharge and at 2 weeks and 1 month after discharge were subjected to constant comparative analysis. Findings revealed changes in family caregivers' needs during the discharge transition. While preparing to take caregiving responsibility, caregivers reported a need for various types of information. After the discharge, but before home caregiving settled into a pattern, they needed help with caregiving practices. After reaching a pattern for providing family care, caregivers frequently reported needs for continuous emotional support. These findings provide a basis for transitional care services such as discharge planning and home health care services.     

Juggling work and elder caregiving: work-life balance for aging American workers.

As the American work force ages, the demands of caring for aging relatives increase. Family caregiving often interferes with workplace responsibilities, creating physical, emotional, and financial stress for caregivers. Employers must address the productivity losses created by absenteeism of workers who struggle with work-life issues created by caregiving roles. Occupational health nurses must understand the factors that affect workers in their caregiving roles and make appropriate nursing interventions. They are in key positions to help aging employees and their employers face the increased demands on work-life balance created by elder caregiving.