Reactions of primary caregivers of frail older people and people with cancer in the palliative phase living at home

Title. Reactions of primary caregivers of frail older people and people with cancer in the palliative phase living at home Aim. This paper is a report of a study conducted to (1) compare means of the single items and the dimensions of the Caregiver Reaction Assessment among caregivers of frail older people and caregivers of cancer patients in the palliative phase; (2) examine gender differences for the scoring parameters in the Caregiver Reaction Assessment within each group and (3) examine the demographic variables’ association with the caregiver groups’ scores for the dimensions of the Caregiver Reaction Assessment. Background. Limited research has focused on the caregiver situation in the home‐care setting among primary caregivers of frail older people, and caregivers of patients with cancer in the palliative phase. Methods. A convenience sample of 224 caregivers of frail older people, and 85 caregivers of patients with cancer in the palliative phase was recruited between 2002 and 2005. We used the Caregiver Reaction Assessment to collect the data. Results. The mean scores for the Caregiver Reaction Assessment dimensions showed statistically significant differences between the two groups of caregivers for the factors self‐esteem, family support, finances and health. For caregivers of frail older people, we found statistically significant associations between several demographic variables and the Caregiver Reaction Assessment dimensions. For caregivers of patients with cancer in the palliative phase, age was the only demographic variable that was statistically significantly associated with the dimensions. Conclusion. Healthcare personnel should pay attention to how relatives experience their caregiver situation, and the Caregiver Reaction Assessment could be a valuable tool for gathering systematic data on this.     

Testing a home-telehealth programme for US veterans recovering from stroke and their family caregivers

Purpose. The study purpose was to implement a stroke-specific, care coordination home telehealth (CCHT) programme for US veterans with stroke and their family caregivers.

Methods. In a non-randomized open trial using a mixed methods design, we tested the utility of a stroke-specific, home telehealth programme with 18 veterans and 14 caregivers for 14 days. Programme questions assessed physical impairment, depressive symptoms, and fall prevalence among veterans, and burden level among family caregivers. Nine veterans and six caregivers completed post-programme interviews exploring their experiences with telehealth.

Results. During the 14-day trial, 55% of the veterans screened positive for depression at least once, 36% of the caregivers had clinically significant burden, half of the veterans and caregivers reported post-stroke concerns, and 90% believed post-stroke contact from a care coordinator would have been helpful. In the interviews, seven veterans indicated they had fallen or almost fallen post-stroke. Themes centred on tailoring CCHT to individual needs, coordinating with support services, identifying safety issues, and providing information about stroke prevention.

Conclusions. Home telehealth offers innovative ways to target post-stroke rehabilitation programmes to the needs and concerns of patients and their caregivers, and should include regular real-time contact between stroke patients and their healthcare providers.     

Despite shattered expectations a willingness to care for elders remains with education and clinical supervision

The aim was to describe nursing home (NH) caregivers' work experiences while receiving education and clinical supervision for 2 years. Working in elder care seems to be losing its attraction especially with organizational changes, cutbacks and changes in work place conditions. Clinical supervision has been reported to increase job satisfaction and creativity. Semi-structured interviews from caregivers working at an NH in Sweden were conducted, at the start and again at 12 and 24 months. At about 12 months the caregivers were informed of planned cutbacks. Content analysis was the method used to analyse the interviews from seven caregivers who participated throughout the entire period. Findings show that the value of a caring milieu was one category generated by the subcategories: experiences related to work activities and changes, and experiences related to relationships. The value of knowledge was the other category that was influenced by the experiences related to the different backgrounds and the experiences related to increased knowledge gained from the support through education and clinical supervision. The categories contained positive as well as negative influences on care. The initial focus on practical duties associated with the opening of the NH shifted towards caregiver activities with the elders they spoke warmly about. After 2 years the caregivers' willingness to care continued despite their disappointment in the worsened working conditions. The main theme that resulted was: Despite shattered expectations a willingness to care for elders remained. Continued education and clinical supervision seems to be one factor behind the retained willingness. These findings demonstrate that support and caregiver involvement in educational programmes are important during times of change and when disappointments arise in the workplace.     

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.     

A systematic review of informal caregivers' needs in providing home-based end-of-life care to people with cancer

Aims. This paper presents the results of a systematic review examining the practical information needs of informal caregivers providing home‐based palliative and end‐of‐life care to people with advanced cancer. Background. Modern hospice care has led to increases in home‐based palliative care services, with informal caregivers assuming responsibility for the majority of care. In response, health policy emphasises the provision of palliative care services in which both the patient and carer receive adequate support throughout illness and death. While the emotional needs of carers have been extensively researched, their practical needs with respect to the provision of physical care are yet to receive systematic attention. Design. Systematic review. Methods. Eligible articles were identified via electronic searches of research and evidence‐based databases, hand‐searching of academic journals and searches of non‐academic grey literature websites. Quality of research was assessed via accepted guidelines for reviewing non‐randomised, observational and qualitative literature. Data were synthesised by comparing and contrasting the findings to identify prominent themes. Results. Research consistently highlights this lack of practical support, often related to inadequate information exchange. These deficits typically manifest in relatives adopting a ‘trial and error’ approach to palliative care. Informal carers request a greater quantity of practically‐focussed information, improvements in quality and increased methods of dissemination. Conclusion. Synthesis of the literature suggests that home‐based palliative care services have been insufficiently focussed on assisting informal caregivers acquire practical nursing skills. Relevance to clinical practice. Enhanced access to professional advice represents a potentially effective method of increasing carers’ confidence in their ability to undertake practical aspects of home‐based care. Evidence suggests that nurses and other health providers may better assist home‐based carers by providing the information and skills‐training necessary to facilitate this. This may necessitate the involvement of carers in the design and testing of new educational interventions.     

Elderly people's perceptions of how they want to be cared for: an interview study with healthy elderly couples in Northern Sweden

Many countries encounter a demographic change where the number of elderly people will increase. As a result, the number of very old people needing care, services and medical assistance will increase. Care in the private home is often described as providing the best alternative for many elderly people. The aim of this study was to describe elderly people's perceptions of how they wanted to be cared for, from a perspective of becoming in need of assistance with personal care, in the future. Twelve couples of healthy elderly people living in a couple hood participated in an interview study. They were all 70 years and older and received no kind of professional care or social support. Open individual semi-structured interviews were conducted with the support of written vignettes. The vignettes were formed as scenarios that described three levels of caring needs where the elderly people would become ill. A qualitative content analysis was used to analyse the interviews. The findings were interpreted in one main theme: maintaining the self and being cared for with dignity to the end. The theme was built from three categories: at home as long as possible, professional care at nursing home when advanced care is needed and fear of being abandoned. The categories reflect the perception that when minimum help was needed, care and support by the partner and nursing staff were preferred. As the scenarios changed to being totally dependent on care, they preferred care in a nursing home. There was a pervading concern of the risk of not being seen as an individual person and becoming a nobody with no meaningful relations. Thus, there must be a singular goal to support old people, in all stages of their lives, through the recognition and affirmation of self, and providing care with dignity to the end.     

Home caregivers of the person with advanced cancer: an Australian perspective

Australian palliative care services are predominantly community based, with an emphasis on enabling the person to live at home for as long as possible. Home care of the person with advanced cancer receiving palliative care in the community depends largely on the availability of a family caregiver. Family caregivers are required to assess, monitor, and deliver complex therapeutic interventions such as pain and symptom control, including the administration and adjustment of complex medication regimens. This article reports a study of 42 family caregivers providing home care to persons with advanced cancer. This study sought to describe a number of caregiver variables that may influence reactions to caring roles and caregiver well-being. The study found that family caregivers are significantly involved in symptom management, and that they take on almost total responsibility for routine household tasks. In addition, the caregiver role has a negative impact on caregiver health, schedule, anxiety, and energy. However, caregivers find significant meaning in their role and feel relatively well prepared for caregiving. The results of this study support the applicability of the vast international literature on caregiver issues for the Australian setting and suggest the need to move toward development of caregiver-focused nursing interventions.     

A Grounded Theory Study of Action/Interaction Strategies Used When Taiwanese Families Provide Care for Formerly Suicidal Patients

ABSTRACT Objectives: There is a dearth of evidence on the care that families provide to their relatives after they have been discharged from hospital following an attempted suicide.
The aim of this study was to explore ex-patients' and family caregivers' perceptions of the care provided at home following hospital discharge.
Design and Sample: A qualitative approach using Grounded Theory was adopted. Suicidal ex-patients ( n =15) and family caregivers ( n =15) were contacted in the south of Taiwan.
Measures: Data were collected through interviews and the data were analyzed using open, axial, and selective coding.
Results: A substantive theory was developed from the findings. However, for the purpose of this paper, the section of the paradigm model named the action/interaction strategies is presented and discussed. Three categories emerged in the action/interaction section relating to the family care of relatives who had been suicidal. They were: (1) "guarding the person day and night," which helped to ensure that their relatives felt safe; (2) "maintaining the activities of daily living," which promoted their physical health and recovery; and (3) "creating a nurturing environment," which facilitated their mental and emotional healing.
Conclusions: Public health nurses could use the findings of this study as a theoretical map when providing health information to family caregivers during home visits.     

Stigma associated with Ghanaian caregivers of AIDS patients

This study explores the experiences of informal caregivers of AIDS patients in Accra, the capital city of Ghana. Fifteen interviews were completed in 2002 with 11 informal caregivers, including wives, mothers, boyfriends, daughters, sons and brothers of AIDS patients. Three major themes emerge in the analysis of the interviews with caregivers: stigma, caregiver burden, and caregiver commitment. In this article, the authors focus on the theme of stigma by documenting its presence and highlighting its impact on caregiving activities. Caregivers go to great effort to not only "hide" their patients but also their care giving activities, resulting in the social isolation of both patients and their caregivers. Many caregivers live in secrecy, not sharing their family member's diagnosis with extended family members. As a result, they receive limited support from the extended family. Stigma results in negative attitudes of neighbors, relatives, and health care workers toward caregivers and their patients.     

Maintaining distance from a necessary intrusion: A postcolonial perspective on dying at home for Chinese immigrants in Toronto,Canada

PurposeThe purpose of this study was to describe and examine how meanings of home condition negotiations of care for Chinese immigrants with advanced cancer receiving palliative home care in Toronto, Canada.MethodThis focused ethnographic study drew on the tenets of postcolonial theory to examine the social and material circumstances associated with dying at home for Chinese immigrants. Eleven key informants were recruited, in addition to 4 cases comprised of a Chinese immigrant care recipient, primary family caregiver, and home visiting nurse. Individual, open-ended interviews were conducted with each participant, along with observations of home visits.ResultsPalliative care was not viewed strictly as an intrusion that was thrust upon the home without permission or invitation, but an insertion into the routines of the home that was necessary because care recipients recognized the need for palliative care providers to help navigate the system and negotiate dying at home. Consequently, care recipients and family caregivers also sought to minimize the intrusions of palliative care by preserving everyday routines and engaging with family and friends.ConclusionsAlthough the study was focused on Chinese immigrants, the findings resonate with and speak more broadly to the contextual, systemic, social, and material circumstances associated with dying at home for immigrants with advanced cancer. Nurses providing palliative home care to immigrants may begin to critically examine assumptions of “cultural” beliefs about cancer and end-of-life care and look beyond identifying ethno-specific practices, but come to recognize how nurses are implicated in a culture of palliative care.     

Differences in plans for living at home between temporary residents of a health-care facility for the elderly and their family caregivers in Japan

Aim: Older residents in Japan requiring rehabilitation often reside in health‐care facilities for the elderly (HCFE) prior to being discharged to home. The return home can be very stressful for both the elder and family caregiver. The purpose of this study was to clarify the differences in plans for home life between the residents of a HCFE who were scheduled for discharge home and their family caregivers. Method: Semistructured interviews were conducted with eight pairs of elders and caregivers. Results: Differences were seen in several areas, including dietary preferences, recognition of the elder’s independence, preconceptions or not knowing about the elder’s pleasurable activities, and the way of care. Conclusions: Differences with regard to enjoyable activities for the elderly arose from a lack of understanding of the lives of the elderly on the part of their families.     

Evaluation of a psycho-educational group programme for family caregivers in home-based palliative care

BACKGROUND: Family caregivers are often responsible for providing significant support to relatives who require palliative care at home. However, evidence suggests that family caregivers have limited information, resources or support to prepare them for such a role. Furthermore, family caregiving can be associated with negative physical, financial and psychosocial outcomes. PURPOSE: This project sought to examine the utility of a group family caregiver psycho-educational programme focused on preparing primary family caregivers for the role of supporting a relative with advanced cancer at home. METHOD: The education programme consisted of three consecutive weekly sessions presented in a group format, conducted at six home-based palliative care services across metropolitan and regional Victoria (Australia). Participating caregivers were required to complete a set of self-report questionnaires measuring caregiver competence, preparedness, optimism, rewards, social support, burden and information needs, at three time points: commencement of the programme (T1), upon completion (T2) and 2 weeks later (T3). Caregivers were also asked to report on the relevance, acceptability and content of the programme, as well as any barriers to access. RESULTS: Sixteen education programmes were conducted, with 74 caregivers attending the first session. Forty-four caregivers completed all three data collection sets. Following the intervention, a significant positive effect was found for the following outcomes: preparedness for the caring role, caregiving competence, caregiving rewards and having information needs met from T1 to T2. These improvements were maintained at follow-up (T3). Feedback on the individual sessions and entire programme was favourable and the overwhelming majority of participants reported that the programme had a positive impact on their lives. CONCLUSIONS: This study demonstrated that a group education programme to prepare family caregivers for the role of supporting a dying relative at home was accessible, applicable and effective.     

Experiences and Demands of Families With Mentally Ill People at Home in Botswana

PURPOSE: To describe the experiences and demands of families who care for their mentally ill relatives at home in Botswana. DESIGN: Grounded theory design with triangulated data sources. METHODS: A convenience sample was drawn from both urban and rural areas and composed of both men and women. Data-collection methods included in-depth interviews, focus group discussions and field observations. Data were collected using an interview protocol in the local language. Interviews were audiotaped, transcribed, and translated into English. Analysis was done by open and axial coding and grouping like data together to generate core categories, using the constant comparison method. FINDINGS: The interview data revealed a myriad of experiences and problems that families encountered in providing care to their relatives. The situation was perceived as difficult and burdensome because of lack of control and inadequate resources. The complexity of the situation required negotiation between the family members, their ill relatives, and health professionals. CONCLUSIONS: This study indicated some of the difficulties caregivers encounter and the coping mechanisms they use to deal with the day-to-day care of their ill relatives. Community resources are needed to assist families to effectively care for their relatives.     

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.     

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.     

Associations Between Hospice Care and Scary Family Caregiver Experiences

ContextHospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations.ObjectivesTo examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life.MethodsSecondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale.ResultsHospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers.ConclusionHospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.     

Living and coping with Parkinson's disease: perceptions of informal carers

A review of the literature highlights the important role informal carers play in the provision of palliative care in the community. In order to explore the caring experience of relatives with Parkinson's Disease (PD), interviews were conducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis. All caregivers were spouses, the majority female (n?=?17) and all were responsible for providing physical, social and emotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespread burden of providing care on the emotional and physical health of the caregivers. The financial implications for providing care were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a huge emotional impact on relatives and carers, carers did not feel health professionals integrated them within the caring journey. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting in symptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning and timing of palliative care were common with many viewing it as being synonymous with cancer and not applicable to a person with PD. As the well-being of the informal carer directly influences the care of the person with PD, support interventions are required to relieve their burden, maximize outcomes and ensure targeting of services.     

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.     

The Impact of Home Infusion Therapies on Caregivers

ObjectivesTo describe the scope of home infusion therapy in cancer care, expectations related to caregiver involvement in home infusion therapy, literature addressing the impact upon caregivers, and nursing implications.Data SourcesPublished data on cancer care and home infusion therapy.ConclusionWhile the administration of home infusion therapy is not uncommon practice for patients with cancer and is generally well-accepted, there is scant research focused specifically on the impact upon caregivers.Implications for Nursing PracticeCaregiver support not only includes providing instruction in infusion-related tasks but also recognizing the potential impact on the caregiver's life and offering supportive interventions.