Hip fracture: family caregivers' burden and related factors for older people in Taiwan

Aims. The purpose of this study was to explore the burden experienced by caregivers during the transition from hospital to home. Background. With a growing older population, home‐based care has gradually gained more recognition. Most older people with hip fracture in Taiwan have to be discharged at a relatively early stage. Therefore, the caregiving tasks falls on the families. Methods. A total of 98 older people with hip fracture and their caregivers were interviewed. The sample was selected from three medical centres in Taipei, and questionnaires were collected at one week and one month following hospital discharge. Results. (i) Family caregivers were usually women (63.3%) with spouses being the primary caregivers in most cases (30.6%). About one‐third of caregivers took care of other family members on top of their responsibilities caring for the sick elders at home, and 77.6% shared the care tasks with others. (ii) The caregivers experienced moderate burdens. About 91.8% of caregivers reported ‘I feel sad watching the elder's health deteriorating’, 84.9% reported ‘I must keep an eye on the elder constantly’ and 56.7% reported ‘Taking care of the sick elder at home makes me feel exhausted’. (iii) Caregiver burden and the functional level of older people were adversely correlated. (iv) Caregivers who were unable to access other resources for help and/or had provided care to the older person prior to the fracture resulting in hospitalization experienced a higher burden. Conclusions. These findings should be helpful in the formulation of evidence‐based discharge planning and home health care services. Relevance to clinical practice. Comprehensive discharge planning and developing social support systems for family caregivers to reduce caregivers burden are needed.     

Care for chronically ill children and elderly in the People's Republic of China

This paper examines home care for urban chronically ill elderly and children in the People’s Republic of China. Seventy-five families with a chronically ill child living at home and 75 families with a chronically ill elderly person living at home responded to in-depth interview questions. These data provide insights into many dimensions of this home care situation including the severity of the illness and problems experienced by family caregivers. Study results show the difficulties of home health-care and provide a basis for nursing’s role in China’s future home care.     

Predictors and correlates of the frequency and the length of verbal communications between nursing staff and elderly residents in geriatric care facilities

Aim: The present study was conducted to clarify the type and frequency of verbal communication between caregivers and elderly residents in geriatric care facilities. The relationship of this verbal communication was studied in terms of the caregivers talking to elderly residents and the utterances issued by the elderly residents. The attributes of the elderly residents were also studied. Methods: There were 35 eldery residents living in three metropolitan geriatric care facilities. Observations were made of caregivers talking to elderly residents and of elderly residents talking to caregivers in order to conduct a content analysis that categorized the types of verbal communication observed. A statistical analysis of the relationship between the frequency and duration of verbal communication and attributes of the elderly residents was carried out. Results: There were two category types of talking to elderly residents by a caregiver: ‘talking to elicit the ‘activities of daily living (ADL)‐related behavior/performance or physical functioning’ (type I: instrumental communication) and ‘talking to facilitate psychosocial life activities’ (type II: affective communication), of which the former accounted for 75.9%. The number of spontaneous utterances from elderly residents was very low, with most utterances being responses to caregivers talking to them. There was a tendency for utterances from the elderly residents to increase as the total time of being talked to by caregiver increased (r = 0.47, P < 0.01). The total amount of time a caregiver spent talking to elderly residents was longer for people with low versus high mobility and for people with dementia versus people without dementia (t = 3.4, P < 0.01). Conclusion: The correlation between type II communication and the mean frequency of utterances by elderly residents was high (r = 0.72, P < 0.01) compared with type I, suggesting that the former type of communication is more likely to elicit utterances by elderly residents.     

Functional levels and nurse workload of elderly awaiting nursing home placement and nursing home residents: a comparative study

The aim of this study was twofold: to compare the functional levels of elderly awaiting nursing home placement and nursing home residents, and to compare their nurses’ physical and psychological workloads. In Norway, the demand for nursing home placement has increased greatly. Elderly awaiting placement can receive care from home health care services and/or from their families. Documenting elderly’s functional levels may illuminate the extent of the carers’ workloads and the need for support during the waiting period. The study was conducted in 2005 on two groups in northern Norway. Using the Multi‐Dimensional Dementia Assessment Scale to assess functional levels, one group of nurses assessed elderly awaiting nursing home placement (n = 36) and another group of nurses assessed nursing home residents (n = 47). The nurses also reported physical and psychological workloads in caring for these elderly. A comparison of the functional levels between elderly awaiting nursing home placement and nursing home residents showed few statistically significant differences. Nursing home residents had two lower motor functions, needed more assistance with activities of daily living, more regular administration of enemas, were more often unable to speak, and showed lower orientation levels. Clinically significant similarities were found in five motor functions, including rising from lying to sitting, rising out of bed and walking, and in behavioural and psychiatric symptoms. Both groups of elderly had a high prevalence of sadness and fearfulness. The results of this study indicate that elderly awaiting nursing home placement can be as frail as nursing home residents. These results highlight the elderly’s need for assistance and reveal the need for more nursing home beds. Nurses in home health care and nursing homes rated physical and psychological workloads similarly. As many carers provide care 24 hours a day, these results also illuminate the need to support carers during the waiting period.     

Family caregiver perspectives on social relations of elderly residents with dementia in small‐scale versus traditional long‐term care settings in the Netherlands and Belgium

Aims and objectives. To provide insight into family caregiver perspectives on social relations within the ‘caregiving triangle’ between family caregiver, professional caregiver and elderly resident with dementia. Results were compared between traditional versus small‐scale long‐term care settings in the Netherlands and Belgium. Background. Residential dementia care is shifting towards a more holistic and person‐centred approach. Until now, little is known about family caregiver perspectives. Design. A quasi‐experimental longitudinal design. Methods. This study was part of a larger research project focusing on the quality of life of residents with dementia in traditional and small‐scale settings (n = 179). This study focused on family caregivers related to these residents (n = 64). They filled in a questionnaire containing 25 items (baseline and after 12 months) related to their perspectives on the interaction within the ‘caregiving triangle’. Analyses were performed using mixed models and logistic regression. Results. Compared to traditional settings, family caregivers of relatives with dementia living in small‐scale settings had more contact with the professional caregivers, were more satisfied with this contact and felt that staff paid more attention to their feelings as family members. They also reported that staff showed better listening skills towards the residents. Furthermore, compared to those in Belgium, family caregivers in the Netherlands perceived staff to be less hurried and more accepting of help from family and felt that staff more often takes the resident seriously. Conclusion. In the move towards more person‐centred care for residents with dementia, this study finds preliminary evidence for the importance of integrating the family perspective. Relevance to clinical practice. Gaining more insight into the perspectives of family caregivers on the social relations within the ‘caregiving triangle’ may provide knowledge about the importance of the social system surrounding elderly residents with dementia and can provide pointers for future research.     

Dignity Therapy for older people in care homes: a qualitative study of the views of residents and recipients of ‘generativity’ documents

Aim. To report the findings of a study exploring the views and experiences of care home resident’s family on Dignity Therapy. Background. As the proportion of older people dying in care homes increases, it is important to enhance their dignity, reduce distress at the end‐of‐life, and provide bereavement support to their families. Pilot studies show that hospice patients and care home residents feel Dignity Therapy had or would help their families; however, there are no qualitative studies of their views. Design. Qualitative exploration. Methods. Qualitative interviews were conducted between January 2009–March 2010 with 14 family members of care home residents who had received Dignity Therapy. The Framework approach to qualitative analysis was used. Findings. Four categories are reported: views on the document: impact on residents; impact on family; and potential impact on care homes. While contact with the therapist provided much needed company for residents, Dignity Therapy helped residents reappraise aspects of their lives positively, while enjoying the opportunity to reminisce. Concerns focused on resident’s anxiety over document content. Memory problems and perceived lack of distress in some residents were viewed as factors affecting delivery and impact of Dignity Therapy. Family discovered new information and were prompted to discuss the content with them. For bereaved family members, documents provided comfort during their grief. If made available to carers, documents could enhance care delivery in homes. Conclusion. Family members felt Dignity Therapy had helped them and the residents. Findings suggest that Dignity Therapy may be useful for enhancing the end‐of‐life experience for residents and their families.     

Patterns of elderly spousal caregiving in dementia care: an observational study

AIM: The aim of this study was to describe which caring activities eight spouses performed when caring for a partner with dementia, and in what way these activities were carried out. BACKGROUND: Family caregivers are recognized as being the primary source of care for the community's older people. The largest group is comprised of spouses, with wives as the predominant caregivers. This informal care seems to be more or less invisible and performed in silence within the family. Despite the wealth of studies, the essence of family caregiving is not well understood. METHODS: Data collection was conducted by observing the dyads in their homes. A qualitative approach inspired by grounded theory was chosen to discover qualities and describe patterns of spousal caregiving in dementia care. RESULTS: The analysis yielded four broad themes, which included nine categories. Findings from the study shed some light on the invisible aspects besides the traditional hands-on caregiving. CONCLUSION: The elderly carers were engaged in demanding and time-consuming care ranging from supervision to heavy physical responsibility. They were caring for as well as about their partners. The study also showed that spouses were successful in managing their situation in different ways. The results reported in this article are unique as they come from direct observations in family home settings where a spouse cared for a partner with dementia. Knowledge about family caregiving is valuable for nurses as there is an emphasis on collaboration between family caregivers and professionals.     

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。     

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.     

Self-care management and risk factors for depressive symptoms among Taiwanese institutionalized older persons

BACKGROUND: Depression in the elderly has become a serious healthcare issue worldwide, but studies of self-care strategies and risk factors for depressive symptoms are limited. OBJECTIVES: To determine the self-care strategies and risk factors for depressive symptoms among residents of public elder care homes in Taiwan. METHODS: A cross-sectional design was used. Two of 18 public elder care homes were chosen by random sampling throughout Taiwan. Residents (N = 200) of these two care homes who were 65 years old or above and without severe cognitive deficit participated in this study. RESULTS: Nearly half of the participants (49%) were identified by the Geriatric Depression Scale as depressed. Most participants (93%) used self-care strategies to manage their depressive symptoms. The most frequently used strategy was "take a walk." Self-learning was the main information source for self-care strategies. Logistic regression analysis indicated that cognitive function, perceived health status, and osteoarthritis were significant predictors of depression in this sample. CONCLUSIONS: Because older persons tended to engage in activities and to interact with others to manage their depressive symptoms, healthcare providers in public elder care homes may consider arranging enough activities and people contacts for residents. Due to the limited number of healthcare providers in these homes, the author recommends increasing the knowledge of both providers and residents about depression and self-care management strategies.     

Caregivers' experiences of end-of-life caregiving to severely ill relatives with cancer dying at home: A qualitative study in the Faroe Islands

Background and Aim

It is common among people with advanced cancer to wish to die at home, but only a few succeed in doing so. The willingness of family members to care for a person, who wants to die at home, is crucial This qualitative study aimed to provide insight into conditions that make dying at home possible in a small-scale society and to describe family caregivers' experiences of providing end-of-life care in a private home setting.

Methods

Thirteen caregivers were interviewed, their ages varying from 39 to 84 years. A phenomenological approach, inspired by Giorgi, was applied.

Results

Two essential structures captured the experience of caring at home until death: ‘Managing end-of-life care’ and ‘meaningfulness in a time of impending death’. It was mainly the family, and especially family members with a healthcare background, together with the district nurses, who supported the caregivers in managing the care of a dying relative at home. Being able to fulfil their relative's wish to die at home and to come closer together as a family made the caregivers feel their efforts meaningful.

Conclusion

Our findings point to the importance of having access to home care day and night for the caregivers to feel secure during the night-time. As of now, this is only an option in larger towns in the Faroe Islands, which might also be the case in outskirts areas in other countries. Our findings also showed an unmet need for support to ease the mental load on caregivers. Establishing an outgoing interdisciplinary palliative team would help to increase the number of people who want to die at home and succeed in doing so by giving the caregivers emotional and advisory support.     

Negotiations about helpfulness--the relationship between formal and informal care in home care arrangements

Scand J Caring Sci; 2011; 25; 706–715 Negotiations about helpfulness – the relationship between formal and informal care in home care arrangements Background: Informal caregiving by family members is the most common way of caring for sick people at home. However, the number of care arrangements, in which both formal (nurses) and informal (family members) caregivers are involved, is considerable and increasing. Despite implicit assumptions in research that the involvement of nurses in home care arrangements is inherently beneficial, there is evidence that their involvement may have a destabilising effect. Aims: The purpose of this study was to investigate the relationship between nurses and family caregivers and its impact on the actual care that is provided. Method: Eighty‐eight interviews with family caregivers (n = 57) and nurses (n = 31) were conducted in Germany and analysed according to the Grounded Theory methodology. Findings: The relationship between formal and informal care is an encounter of two quite different perspectives that is focused on a negotiation process about caregiving work and the helpfulness of the actions taken and the interventions used. For family caregivers, it is determined by the goal of facilitating work and care for their sick family member. The nurses’ work is characterised by a process of shaping different realities in different homes. The results reveal the processes that lead to the involvement of nurses into home care arrangements and offer a deeper understanding of the negotiation processes between formal and informal caregivers. Conclusions: To provide sufficient support in home care, nurses need the ability to engage in negotiation processes that take the whole home care arrangement into account. Developmental work is needed to design services that are helpful for family caregivers.     

Female caregivers' perceptions of reasons for violent behaviour among nursing home residents

Threats and violence against professional caregivers present a growing health and safety problem in elderly care. We aimed to explore female caregivers' perceptions of reasons for violent behaviour among nursing home residents. Forty-one caregivers at three nursing homes were interviewed and their responses were subjected to qualitative content analysis, which revealed three content areas of perceived reasons for patient violence: patient characteristics, caregiver approach and environmental aspects. The caregivers' perceptions were formulated in three core statements: 'they (the residents) are not who they used to be', 'we (the caregivers) have acted inappropriately' and 'we (residents and caregivers) are all surrounded by disorder'. Our findings indicate that the reasons for violence are complex and multifactorial, so interventions should be individually tailored. Caregivers involved in a violent situation need to see the person behind the behaviour, try to interpret what the behaviour is meant to communicate and adjust the intervention according to individual need.     

Family caregivers’ experiences of relinquishing the care of a person with dementia to a nursing home: insights from a meta‐ethnographic study

Many people with dementia are cared for in their homes by family caregivers. As the dementia progresses, admission of the family member to a nursing home becomes inevitable. The aim of this meta‐ethnographic study was to describe caregivers’ experiences of relinquishing the care of a family member with dementia to a nursing home. A systematic literature search of PubMed, Cinahl and PsychInfo, between the years 1992 and 2012, was performed, and 10 qualitative articles, based on 180 family caregivers’ experiences, were included. The family caregivers’ described their experiences as a process that went from being responsible for the decision, through living with the decision, adjusting to a new caring role and having changed relationships. They felt unprepared and lonely with these changes. They experienced loss, guilt and shame, but also feelings of relief. Their roles in the nursing home environment were to make sure that the individual needs of the person with dementia were respected and to monitor the quality of care. They wished to maintain their relationship with the person with dementia and to establish meaningful relationships with caring staff. The process of relinquishing care is similar to a crisis process, which starts with a turning point, followed by a coping face and finally the outcome of the process. The adaption to the new situation can be facilitated if the family caregivers are recognised as partners in the care of the person with dementia. The family caregivers’ unique knowledge of their relatives’ previous life story should be acknowledged in both care planning and daily care. Welcoming family caregivers to regular meetings with staff can contribute to increase the feeling of partnership. Offering staff clinical supervision could be one way of preparing them to deal with the emotional strain reported by family caregivers.     

老年人家庭照顾者身体健康状况与照顾负担的关系分析

目的：探讨老年人家庭照顾者自身的身体健康状况及与照顾负担的关系。方法采用Zarit照顾者负担量表调查1517名老年人家庭照顾者负担情况，同时调查人口学资料及健康状况，分析不同健康状况的老年人家庭照顾者的照顾负担情况。结果本次调查的老年人家庭照顾者中有61．0％（926/1517）有明确诊断的疾病，77．5％有自我感觉不适症状，10．8％自我健康评价水平低。926名有疾病的老年人家庭照顾者中轻、中、重度照顾负担的比例分别为35．3％，18．5％，4．4％，高于无明确诊断疾病者（分别为31．5％，10．7％，2．7％），差异有统计学意义（Z＝-5．632，P＜0．01）。有自我感觉不适症状的老年人家庭照顾者轻、中、重度照顾负担分别为35．7％，16．7％，4．4％，高于无症状者（分别为27.5％，11．1％，1．5％），差异有统计学意义（Z＝-5．573，P＜0．01）。不同自我健康评价水平的老年人家庭照顾者间差异无统计学意义（P＞0．05）。结论身体健康状况差的老年人家庭照顾者照顾负担重，护理人员应重视其身体健康状况，提供照顾相关知识和技能，缓解照顾压力。     

Seizing possibilities for positive family caregiving in nursing homes

Aims. This paper explores the ways family members reconstruct meaning through seizing possibilities for positive caregiving in nursing homes. Background. The importance of the ability of family caregivers to adapt and accommodate has been well documented in international family caregiving research. Through engagement in caregiving activities, families learn to modify, adapt and accommodate to changes in their situation and relationships. The support family caregivers experience in learning to accommodate change is crucial in enabling them to reconstruct positive aspects of caregiving in a long‐term aged care context. Method. In this study, a hermeneutic phenomenological approach was adopted informed by the philosophical world views of Heidegger and Gadamer. Data collected by in‐depth interviews and participant observations, from a purposeful sample of 14 family caregivers, underwent hermeneutic analysis. Results. Five shared meanings associated with seizing possibilities for positive caregiving were revealed: accommodating new and different ways of caring; feeling a part of the nursing home community; seeing the whole picture; learning to care in stress‐reducing ways and learning to seize possibilities for self. Conclusion. This paper illustrates how families, through caregiving experience in nursing homes, learn to become active managers, negotiating, accommodating and redeveloping a sense of future viewed with hope, strength and positive anticipation. Relevance to clinical practice. By highlighting what is attributed significance by families, a critical examination of the difficult issues which obstruct the development of meaningful partnerships among nurses, family and their relatives is facilitated. In particular, an examination of tensions at an ideological level supports the need for future research to focus its efforts on examining the ways of implementing nursing care that facilitates partnerships that incorporate and build upon positive and equal relations among staff, families and residents in the context of the nursing home setting.     

Caring for octogenarian coronary artery bypass graft patients at home: family perspectives

Rates of coronary artery bypass graft (CABG) surgery on octogenarians have been rising by more than 15% each year since the mid-1980s. Little is known about the experience of caring for this select group of patients at home after discharge. The purpose of this study was to describe the lived experience of caring for very elderly (80 years or older) CABG patients during convalescence at home. Using hermeneutic/phenomenological methods, 12 family caregivers were interviewed at home during the 4-week postdischarge period. Analysis of data derived from interviews revealed that work, personal reaction to caregiving, and experiences with formal care were recurrent themes. Caregivers indicated through their stories that caring for a recovering octogenarian at home after CABG surgery entailed a great deal of work that moderated at about 4 weeks after discharge. The caregivers also described varied reactions, both emotional and pragmatic, as the weeks unfolded. In addition, the data revealed a range of experiences, positive and negative, with healthcare providers and facilities. The study findings indicate a need for improvements in the following areas: preoperative, postoperative, and discharge education for family members involved in the care of the elderly CABG patient, and communication within and between healthcare organizations with regard to discharge planning.     

Caregiver suctioning education for Japanese patients with an invasive home ventilator

In Japan, more people require care activities at home. In particular, patients with an invasive mechanical ventilator in the home require extensive care by family caregivers. Collaboration between their nurses and paid caregivers in the provision of care activities, especially tracheal suctioning, is necessary. This three-round Delphi study identifies the essential items required by nurses to instruct the paid caregivers in how to carry out tracheal suctioning on patients with an invasive mechanical ventilator in the home. By the final round, three competencies were found to be important by the home-visit nurses and paid caregivers: the anticipation of risk, the manner of handling an emergency situation, and the observation of a patient's breathing. The Delphi technique was used to obtain consensus between the home-visit nurses and the paid caregivers regarding the essential knowledge, skills, and attitudes required to carry out tracheal suctioning for patients with an invasive mechanical ventilator in the home.