Meaning-making for family carers in nursing homes

Kellett UM. International Journal of Nursing Practice 1998; 4: 113–119 Meaning-making for family carers in nursing homes This ontological hermeneutic study highlights the importance of understanding the human experience of family caring. In contrast to much family caregiving research which focuses upon the home care situation, this study involved in-depth audiotaped conversational interviews and observations with 14 family carers who continue to care within a nursing home context. Thematic analysis of the transcribed interviews/field notes uncovered a number of common themes of meaning which highlight the nature of family caring experience in nursing homes. Discussion of such findings will challenge practitioners to reconceptualise the nurse–resident–family carer relationship, appreciate the many ways in which a family member’s involvement in care provides meaning and significance in their lives, and understand family carers through a process of human relating which fosters families’ meaningful involvement in caring within a nursing home context.     

Psychometric properties of the Caregiving Burden Scale for Family Caregivers with Relatives in Nursing Homes: Scale development

Aim: Most family caregivers continue their caregiving for frail relatives after admitting them to long‐term care facilities. The characteristics of this caregiving differ from those related to caregiving in home‐care settings. Thus, a new tool to evaluate the burden of family caregivers in institutional settings is needed. The aim of this study was to develop a new scale, the Caregiving Burden Scale for Family Caregivers with Relatives in Nursing Homes, and to confirm its validity and reliability. Methods: We conducted two cross‐sectional questionnaire surveys. The participants were a convenience sample of family members of residents in seven nursing homes for the validation study and in three nursing homes for the test‐retest study in Japan. Statistical analyses examined exploratory/confirmatory factor analyses, internal consistency, concurrent/discriminate validity, and test‐retest reliability. Results: A four‐factor solution with 16 items was selected as the most interpretable questionnaire. In the confirmatory factor analysis, the indices of fitness highly supported these results. The Cronbach's alpha coefficient for the total score was 0.86 and varied between 0.77 and 0.87 in the four domains. The scale showed moderate correlation with the Nursing Home Hassles Scale, suggesting its concurrent validity. The four domains had only a medium correlation with each other, indicating discriminate validity. Conclusions: The developed scale has acceptable validity and reliability for measuring the caregiving burden of family members with relatives in Japanese nursing homes. Future studies using the scale might lead to the improvement of care for family members with relatives in a long‐term care setting.     

Their only privacy is between their sheets. Privacy and the sexuality of elderly nursing home residents

This study which was based on hermeneutic phenomenology, investigated how paid caregivers in two nursing homes experienced older residents' sexuality. Caregivers acknowledged there were obstacles to residents fulfilling their sexual desires. The medical model of care still largely determines the norms and values within nursing homes and governs the actions of staff. Sexuality within the current medical model is not considered to be part of the primary caregiving role because sexuality is not deemed to play a vital role in the maintenance of bodily functions. Because they are geared toward the demands of basic body care, nursing homes are not inclined to create an environment conductive to the fulfillment of sexual needs.     

A cost-effectiveness analysis of home care and community-based nursing homes for stroke patients and their families

A prospective study designed for 336 hospitalized patients with stroke and their families, who were followed from the discharge day to the third month after being discharged, was carried out in order to compare the costs and effectiveness of home care with the community-based nursing homes for stroke patients with different physical function disabilities in terms of ADL scores and their families. The ADL scores of the patients with severe physical function disability did not improve with or without long-term care; however, the patients with moderate physical function disability were significantly improved at the end of the third month, even without interventions from long-term care. The family costs of the patients in nursing homes were substantially lower than the costs for the patients who stayed at home, and the relationship of the family costs of the patients cared for in their own homes was proportional to the patients'physical function status. The labour input from family caregiving accounted for at least 60% of the total family costs of the patients who stayed at home, and the paid for long-term care services accounted for at least 60% of total family costs when the patients stayed in nursing homes. The multiple linear regression demonstrated that the degree of caregiving from families was a predictor of the amount of the costs families incurred for patients with severe physical function disability; as a result the ADL scored on discharge significantly influenced the average total family costs for the patients cared for in their own homes.     

Transition in care: family carers'' experience of nursing home placement

This paper explores families' experience of nursing home placement, which emerged as a significant aspect of a larger hermeneutic phenomenological study of family caring in nursing homes. Hermeneutic analysis of 14 family carers' stories of nursing home placement uncovered five shared meanings: experiencing a loss of control; being disempowered; feeling guilt, sadness and relief simultaneously; possessing a sense of failure; and having to make a forced and negative choice. Discussion of the findings focuses upon the importance of family carer support during the transition period from home care to nursing home care and the subsequent benefits realized as a result of having received such support. Particular emphasis is placed upon how such support assists family carers to begin the process of reconstructing a valued and positive identity through which new possibilities for meaningful caring within a nursing home context can be realized.     

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.     

Cost comparisons between family-based care and nursing home care for dementia

A prospective study was carried out in Taiwan to measure the family cost of caregiving at home for 289 patients newly diagnosed with dementia (106 with senile-type dementia, 171 with vascular-type dementia). Their families were first interviewed in the outpatient department and then followed for 1 month after the dementia diagnosis was made. Simultaneously, the costs for providing nursing home care to patients with dementia were calculated using accounting data reported from six nursing homes. Comparisons were made between the amount and type of cost encountered by families and by nursing homes to determine whether family-based care was cheaper and more appropriate than nursing home care for dementia patients with different functional levels. The results showed that higher costs were encountered for caregiving at home when the patients had severe dependence. This tendency was more evident for patients with senile dementia than for patients with vascular-type dementia. The cost of labour was an important expense for families caring for patients at home (at least 85% of family costs). Our findings suggest that, when family labour cost is considered, nursing home care is less expensive than family-based care for long-term care, especially for dementia patients with severe or moderate dependence. Nursing home care is also a better choice when patients have great need for multiple health services.     

Great expectations: a position description for parents as caregivers: Part II

Parents caring for a child with a chronic condition must attend to a myriad of day-to-day management responsibilities and activities. Part I of this two-part series (in the previous issue of Pediatric Nursing) reviewed both the adult and pediatric family caregiving literature within the context of four major categories of responsibilities: (a) managing the illness, which includes hands-on care, monitoring and interpreting signs and symptoms, as well as problem-solving and decision-making processes; (b) identifying, accessing, and coordinating resources, which involves assessing and negotiating community resources including health care providers; (c) maintaining the family unit, including balancing illness and family demands while at the same time attempting to meet the health and developmental needs of each family member; and (d) maintaining self, including physical, emotional, and spiritual health.. Part II presents a multifaceted list of parent caregiving management responsibilities and associated activities, and discusses nursing implications. The list was developed to facilitate "caregiving" dialogue between health care providers and families of children with chronic conditions. It is hoped that through such partnerships creative ways of educating, preparing, and supporting caregivers will be generated.     

Heideggerian phenomenology: an approach to understanding family caring for an older relative

Recent research has found diat family caregivers do not discuss their caregiving in terms of tasks but instead describe their care as shaped by concerns, commitments and goals. The purpose of this paper is to challenge the ways in which nurses approach die family caregiving process and to explore possibilities for evolving nursing knowledge by questioning existing practice in die light of developing insight into die ways in which being a family caregiver is meaningful. A critique of die philosophical orientations of rationalism and empiricism provides a platform to discuss the merits of a Heideggerian phe-nomenological approach in assisting nurses to better understand family caring experience. Such critique serves to support the notion of displacing die traditional scientific view as die prime means of disclosing trudi, acknowledging alternative ways of knowing.     

Tenerlos en la Casa: the material world and craft of family caregiving for relatives with dementia.

The environment has been found to be critical to the well-being of patients with dementia. The purpose of this study was to describe strategies Colombian caregivers used in the home to manage the care of relatives with dementia. Grounded theory techniques were used. Interviews were conducted in Medellín, Colombia, with 18 primary caregivers and 2 health care professionals. Participant observations were conducted in caregivers' support groups and homes. Family caregivers rebuilt the environment as the disease progressed to accommodate caregiving and preserve family life. Caring for a relative with dementia is a craft that transforms the material world in which patient and caregiver live. The findings show the value of place-sensitive approaches to the study and practice of caregiving.     

Outcomes of family involvement in care intervention for caregivers of individuals with dementia

BACKGROUND: Despite the increasing number of individuals with dementia relocated from caregiving at home to a nursing home, there is only a small body of literature examining the influence of institutional family-oriented practices on family member perceptions of care and family-staff relationships. OBJECTIVE: The study tested the effects of the Family Involvement in Care partnership intervention on family members' perceptions of their caregiving role, relationships with staff, and satisfaction with the care of relatives with dementia residing in special care units as well as the effects on staff attitudes toward families and staff satisfaction with a caregiving role. METHODS: A quasi-experimental design with nonequivalent groups and repeated pretest and posttest measures was used to examine the effects of the Family Involvement in Care intervention. The study recruited 14 Midwestern nursing home special dementia care units, matched by aegis and staff turnover, and randomized from matched pairs to experimental and control conditions. The samples included 185 family members and 895 staff. The Family Involvement in Care intervention is a protocol for family and staff negotiation of a written partnership agreement. Family caregiver outcomes were measured using instruments pretested for reliability and validity. Data were analyzed using hierarchical linear modeling. RESULTS: With adjustment for multiple tests, statistically significant beneficial intervention effects were found in three areas of family caregiver outcomes (emotional reactions to the caregiving role, perceptions of relationships with staff, and perceptions of care for relatives) and in one of three areas of staff outcomes (staff perceptions of the family caregiving role). For family members, effects were found for the measures assessing loss, captivity, staff disregard, resident activities, and physical care. Some of the intervention effects for family members were found only for caregivers of the same generation as the resident. For staff, effects were found for measures of dominion, disruption by family, and irrelevance of family. CONCLUSIONS: The results of the study indicate that the Family Involvement in Care intervention improves the caregiving experience of family members in nursing homes as well as nursing home staff attitudes toward family members. The intervention did not influence the perceived conflict with staff on the part of family caregivers or the perception of a partnership with family caregivers on the part of staff.     

Perspectives from family caregivers receiving home nursing support: findings from a qualitative study of home care patients with heart failure

Many heart failure (HF) patients depend on a family caregiver and many families need additional home care nursing support. This qualitative study identified perspectives of being a HF caregiver for families receiving home care nursing. Eleven caregivers of homebound HF patients were interviewed on what helps them the most, their own health, obstacles in caregiving, and greatest needs overall. Eight themes emerged and will be discussed in this article. The findings articulate the positive influence nurses can have on HF families to guide future practice and research.     

Family and paid caregivers of hospitalized patients in Korea

Aim. To examine patient need for family and paid caregivers during hospitalization and determine factors related to caregiver use and the economic burden for paid caregivers. Background. Provision of nursing care is influenced by the characteristics of the society and its health care system. An influencing factor in Korea is the involvement of family caregivers in inpatient care. Korean society has preserved the strong tradition of family bonds and filial responsibility for caregiving. However, the ability of Korean families to assist hospitalized family members has decreased as the society becomes more industrialized. Design. A cross‐sectional study design was used, employing data from the Seoul Citizens’ Health Survey, a community‐based interview survey with 3203 inpatients in Seoul, conducted in 2001. Methods. Distributions of caregivers and related factors were explored by employing univariate comparisons and multivariate logistic regression analyses. Results. During hospitalization, 87% of patients needed caregivers. A greater need for caregivers was found in children, women giving birth and patients with disability, longer length of stay and discharge from general hospitals. Family members were the primary caregivers while 3% of inpatients used private paid caregivers. Having paid caregivers was associated with being female, older, high household income, disability, longer stay and discharge from general hospitals. The average daily expense for paid caregiver was 38·5 US dollars (USD) and 73% of patients perceived it as burdensome. Conclusions. The demonstrated need for caregivers may suggest that patients rely on family and paid caregivers in receiving assistance and care during hospitalization. Therefore, implementation of policies to relieve the burden of caregivers is necessary at both institutional and national levels. Relevance to clinical practice. Nursing services need to be redesigned in response to changing needs and expectations of patients and their family members.     

Family and staff perceptions of the role of families in nursing homes

Family and staff perceptions of the role of families in nursing homes Admission to a nursing home is generally regarded as the termination of family care and the commencement of institutional care. Research suggests that following placement families are often expected to relinquish their dependent older relative to the bureaucracy of the institution. The aim of this study was to investigate family and nursing home staff perceptions of the role of families caring for residents in nursing homes. A convenience sample of 44 family carers and 78 nursing home staff completed questionnaires, and interviews were conducted with 10 family carers and 10 nursing home staff. The results suggest that family carers perceived themselves to have a greater role in caring for relatives than that perceived by the nursing home staff. Either families overestimated their involvement, or staff underestimated family involvement in caring for residents in nursing homes. Families were mostly satisfied with their role and with the care provided in nursing homes. They perceived nurses as providers of technical care and they perceived themselves as having an important role in providing social and emotional care. Families trusted the clinical judgement of the staff but the staff were reluctant to trust family carers, especially in situations where care involved an element of risk. Family roles were limited by members' own ability to care and the dependency of the resident, while professional responsibility and accountability discouraged nurses from sharing some caring roles. The results indicate that families in this study were more willing to help in nursing home care and were perhaps under-valued as a resource within the nursing home setting.     

Utility of the life course perspective in research with Mexican American caregivers of older adults

Research on caregiving of elders in Mexican American families is urgently needed. We know little about family caregivers, family transitions in relation to the caregiving role, reciprocal impact of caregivers and care recipients on one another, adaptive strategies, positive benefits of caregiving (caregiver gain), specific caregiving burdens, or supportive interventions for family caregiving. Theory derivation using the concepts and structure of life course perspective provides a way to fill the knowledge gaps concerning Mexican American caregiving families, taking into account their ethnic status as an important Hispanic subgroup and the unique cultural and contextual factors that mark their caregiving experiences.     

Collaboration and control: nurses' constructions of the role of family in nursing home care

AIM: This paper reports a study examining how nursing home staff experienced working with residents' families. BACKGROUND: Working collaboratively with the family in residential aged care to provide care is consistent with nursing philosophy. The quality of the experience, however, is frequently fraught with problems for both the family and staff involved. Little research has focused on the nature of family involvement in nursing homes from the perspective of nursing home staff. METHODS: The study adopted a naturalistic paradigm. Data were collected from 30 nursing home staff members drawn from a range of metropolitan and rural facilities in Victoria, Australia by means of conversational in-depth interviews. Issues concerned with how participants constructed the role of the family in the nursing home were explored. The data were collected in 2001-2002. RESULTS: Four key elements are presented in this paper: (1) Making the transition; (2) Forming ties; (3) Keeping them at a distance and (4) Unacceptable behaviour. Some nursing home staff have developed a substantive family orientation and had adopted practices which were inclusive of the family. Equally, many attitudes which cast the family into an adversarial and competitive role were noted, and many staff members outlined practices which were indicative of a need to control the family. CONCLUSION: A rhetoric of family partnerships is prevalent in some nursing homes. The activities of staff in these homes are still primarily geared towards provision of physical care, and families' needs become secondary to getting the work done. A new model of practice is needed that sees working collaboratively with families as a legitimate and necessary part of the staff role.     

精神分裂症患者家庭照料者负担的影响因素及护理对策

目的研究精神分裂症患者家庭照料者负担的影响因素及干预措施,从而减轻精神分裂症患者家庭照料者的负担。方法采用人口统计学问卷（自制）和照料者负担量表（caregiver burdenscale）对96例精神分裂症患者家庭照料者进行调查。结果精神分裂症患者家庭照料者负担的影响因素包括：照料者的年龄、文化水平、婚姻状况、居住地、与患者的关系以及患者的工作状况。结论精神分裂症患者家庭照料者在照料活动中承受了相当大的负担,应针对精神分裂症家庭照料者的年龄、文化水平、婚姻状况、居住地、与患者的关系以及患者的工作状况等进行个体化护理干预,从而减轻家庭照料者的负担。     

‘I feel like a salesperson’: the effect of multiple‐source care funding on the experiences and views of nursing home nurses in England

The difficulties faced in the recruitment and retention of nursing staff in nursing homes for older people are an international challenge. It is therefore essential that the causes of nurses’ reluctance to work in these settings are determined. This paper considers the influence that multiple‐source care funding issues have on nursing home nurses’ experiences and views regarding the practice and appeal of the role. The methodology for this study was hermeneutic phenomenology. Thirteen nurses from seven nursing homes in the North East of England were interviewed in a sequence of up to five interviews and data were analysed using a literary analysis method. Findings indicate that participants are uncomfortable with the business aspects that funding issues bring to their role. The primary difficulties faced are: tensions between care issues and funding issues; challenges associated with ‘selling beds’; and coping with self‐funding residents’ changing expectations of care. The findings of the study suggest that multiple‐source care funding systems that operate in nursing homes for older people pose challenges to nursing home nurses. Some of these challenges may impact on their recruitment and retention.     

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.