Identifying family care process themes in caring for their hospitalized elders.

Little is known about strategies used by family caregivers for their hospitalized elderly relatives. A total of 16 participants were recruited in this qualitative study from two hospitals in the northwest of the United States. Altogether, 25 interviews and 3 participant observations were conducted with hospitalized elders, family caregivers, and nurses. Qualitative analysis based on Lofland and Lofland's approach resulted in the identification of five family care process themes: (a) carrying on, (b) modifying, (c) starting new, (d) sharing, and (e) arranging care for. Understanding how family caregivers provide care can help nurses to work effectively with family caregivers to improve the outcomes of hospitalized elders.     

Families and hospitalized elders: A typology of family care actions

The extensive care provided by families to their elderly relatives in the home is well documented. Although family caregiving is likely to be continued during hospitalization of elderly relatives, limited research has been conducted to address the nature of family care for hospitalized elders. The main purpose of this qualitative study was to refine the content domain of family care for hospitalized elders. Altogether 25 interviews were done. Of the 16 participants, 6 were family members, 6 were patients, and 4 were nurses; 7 participants were interviewed once and 9 participants were interviewed twice. Qualitative analysis based on Lofland and Lofland's (1984, 1995) approach resulted in the identification of three major content domains: family members providing care to the patient, working together with the health care team, and taking care of themselves. This typology suggests a shift of research in this area from its current focus on family needs to a view of family caregivers as partners with the health care team.     

Dimensions of informal care in Greece: the family's contribution to the care of patients hospitalized in an oncology hospital

Aims and objectives. This study aims to explore the kind and frequency of care provided to hospitalized cancer patients by relatives and the reasons for providing this care. Background. Informal care is a common phenomenon across many countries. In Greece, informal caring activities occur in most hospitals. Patients’ relatives stay by their bedside for long hours and assist with care. This phenomenon is highly correlated with the nursing staff shortage. Method. This study was carried out in a Greek oncology hospital. The sample consisted of 150 informal caregivers. We used a 37‐item questionnaire called In‐Hospital Informal Care Questionnaire Acute Care. Results. The participants provide substantial help to their patients daily. On average, they stay by their bedside for 20·23 hours in a 24‐hour period. Additionally, 104 participants stated that they hire a privately paid patient's helper. The relatives stay by their patients’ bedside for various reasons such as: (1) severity of the condition; (2) providing psychological support; (3) family tradition; (4) because they do not believe their patients are safe in the hospital without their supervision; or (5) the nursing staff shortage. Conclusions. The participants offer informal care that reflects specific nursing duties. We could argue that Greek hospitals ‘use’ relatives as unpaid labour to compensate for the nursing shortage. It is disquieting that usually someone from the hospital staff suggests to the relatives to stay at the patient's bedside even after visiting hours or to hire a private paid patient's helper. This implies that the staff considers such contribution necessary. Relevance to clinical practice. The findings show that relatives perform daily tasks that nurses should be performing. They indicate that the hospital should introduce specific staffing policies for reducing families’ burden. Our findings could influence future staffing plans of nursing managers, policy makers or health authorities.     

The vulnerability of family caregivers in relation to vulnerability as understood by nurses

In Finland, the care of older persons is shifting from institutional care to family care. Research shows that family caregivers experience their situation much in the same way as professional nurses. The nurses' experiences have been studied in terms of vulnerability, and the same perspective could deepen our understanding of family caregivers' experiences. The aim of this study was to gain knowledge of the vulnerability of older caregivers taking care of an ageing family member. The research questions were as follows: How do family caregivers experience vulnerability? How do their experiences relate to vulnerability as understood by nurses? The study was done as a secondary analysis of focus group interviews on the experiences and daily life of older family caregivers. Four caregivers had taken part in monthly interviews during a period of 10 months. The interviews were analysed by deductive and inductive content analysis. The results showed that the caregivers saw caregiving as part of being human. They experienced a variety of feelings and moral agony and were harmed physically, mentally and socially. They showed courage, protected themselves and recognised that being a caregiver also was a source of maturing and developing. These results corresponded with the nurses' understanding of vulnerability. Shame, the experience of duty as a burden, worry and loneliness were themes that were found only among the family caregivers. The use of a matrix may have restricted the analysis, but using it in an unconstrained way allowed for new themes to be created. The results indicate a common humanness and vulnerability in professional and family caregiving. They also show that family caregivers need more support both from society and professionals.     

Family caregivers' preferences in caring for their hospitalized elderly relatives

We know little about family preferences in participating in hospital care for elders. This pilot study was conducted to explore the kind of care actions that family caregivers prefer to do for their hospitalized elderly relatives. The instrument used was a 14-item questionnaire based on a qualitative study conducted by the author. The results indicated that 95% of these family caregivers (n = 40) would prefer to participate in 10 or more types of family care actions. The implications for nursing practice are discussed. Future research will focus on identifying factors influencing family preferences, the relationship between the preferences and actual performance, and how nurses can help family caregivers participate in the care they desire.     

Korean nurses’ perceived facilitators and barriers in provision of end‐of‐life care

This study examined nurses’ perceived facilitators and barriers to end‐of‐life (EOL) care in clinical settings. The study participants were 383 Korean nurses working at tertiary hospitals. The nurses had an average of 7.6 years of clinical experience. The three highest‐scoring facilitating items were ‘family member acceptance of patient death’, ‘having time to prepare the family for the patient's expected death’ and ‘having the physician meet with the family after the patient's death to offer support and validate the given care’. The top two perceived barriers were ‘families not accepting what the physician is telling them about the patient's prognosis’ and ‘dealing with angry family members’. Nurses who had received EOL care education showed a higher score in perception of facilitators than nurses who did not receive that education. EOL care for patients and their families is a challenge; thus, continuing education should be provided to improve nursing practice.     

The association of collaboration between family caregivers and nurses in the hospital and their preparedness for caregiving at home

Family caregivers of an older person who was recently hospitalized often feel unprepared for their new or expanded tasks. Quality and continuity of care for older people is expected to improve when nurses collaborate with family caregivers as partners in care. The aim of this study was to explore the unique contribution of collaboration between family caregivers of older patients and hospital nurses as a possible predictor for preparedness of caregiving after hospital discharge. With a cross sectional design, a postal survey was sent to 777 family caregivers of home-dwelling hospitalized patients (≥70 years). Regression analyses were used to test the association between collaboration and preparedness for caregiving. In total, 506 (68%) family caregivers responded of whom 281 (38%) were eligible. Their mean (SD) age was 65 (13) and 71% were female. Family caregivers’ level of collaboration with nurses was significantly associated with their preparedness for caregiving.     

New dimensions of death

Many researchers throughout nursing history have been quoted as suggesting the relative inadequacy of care and the ill-preparedness of nurses to perform their ‘final role’ care of the terminally ill. Intensive care nurses must inevitably face performing this “final role” sometimes, often after much effort to maintain life. Control of physical symptoms can go far in caring for the dying patient but psychological needs rank high and must be dealt with. Nurses however use subtle avoidance and conversation controlling tactics whilst taking care of the dying patient's physical needs (Nicholls, 1984). This problem is related to the lack of instruction in the necessary skills of terminal care that is given to nurses.It is regrettable that nurses generally feel ill-equipped by their training to deal with the dying patient, yet Freihofer and Felton (1976) showed that a nurse's presence is particularly valued and that its importance is rated very close to physical needs by dying patients and their relatives.     

Perceptions of staff and family responsibility to provide hospitalized older adults with basic activities care and emotional support

Many older adults need help with Activities of Daily Living (ADL) and emotional support during hospitalization. Hospital staff is officially responsible for care, but most older adults are accompanied by family members who provide at least some of the support. In this study, we asked physicians, nurses, nursing assistants, and relatives about hospital staff versus family responsibility for providing ADL care and emotional support, and about actual levels of help provision by the hospital staff in Israel.  Staff members (except physicians) tended to see staff as more responsible for ADL care than family, while emotional support was a shared responsibility. Nursing assistants were the most likely to report that staff provided high levels of support, and all participants reported that staff provided more ADL care than emotional support. It is important for family members and hospital staff to have open discussions of their expectations and responsibilities when older adults are hospitalized.     

Advanced home care: patients' opinions on quality compared with those of family members

Background. Advanced medical care in the patient's home setting is becoming more common. Many of the patients who receive this kind of care have severe illnesses and are unable to respond to questions about the quality of care. The research question was: are the patients’ opinions congruent with those of family members? Aim. To explore and compare the relationship between patients’ perception of the quality of care and close family members’ perception of this care as well as their perception of the patients’ perception. Methods. Sixty‐seven patients receiving advanced home care, 82 family members (54 matched patient + family member pairs) participated. Data were collected using a short version of the quality from the patient's perspective questionnaire modified to advanced home care. Results. A high degree of perceptual congruence was found between patients and their family members. The similarity was also high between family members’ own opinion and their appraisal of how the patient perceived the care. A subgroup of family members who met the patient once a week or less often deviated from this pattern. Conclusion. Patients’ views on the quality of care are congruent with the opinions of family members if they meet every day (live together) and share the same everyday and care‐related experiences. The results can be understood in the light of empathic accuracy theory. Relevance to clinical practice. The findings of this study have important implications for clinical nursing practice. Family members’ perception of the quality of care may be a valuable data source for nurses in the case of advanced home care if the patient and family member share the same everyday, care‐related experiences, otherwise family members’ perception tend to be more critical than those of the patients themselves.     

Evaluation of a model of nursing care for older patients using participatory action research in an acute medical ward

Aims and objectives. The main aim of this study was to improve the quality of nursing care for older acutely ill hospitalized medical patients through developing, implementing and evaluating a new model of care using a participatory action research process. Background. One of the challenges of nursing today is to meet the health‐care needs of the growing older population. It is important to consider what quality of nursing care means to older patients if nurses are to address gaps between their own perceptions and those of older patients themselves and to consider conceptual models of care appropriate for older patients care in order to improve the quality of care provided. Design. This study is a mixed method triangulated study, involving the use of both quantitative and qualitative methods through participatory action research methodology to establish an evidence‐base for an evolving model of care. Methods. The model was tested on 60 acutely ill patients aged at least 65 years. The medical ward nurses selected a key reference group including the researcher to facilitate the participatory action research process to develop, implement and evaluate a new model of care based on Orem's self‐care model incorporating the Nurses Improving Care to Health System Elders Faculty (Am J Nurs 1994; 94:21) medication protocol to improve the nursing care provided for acutely ill older patients. Results. The participatory action research process resulted in improved heath‐care outcomes for the patients, such as significant improvements in activities of daily living capabilities between admission to discharge, significant improvements in knowledge levels regarding their medication regimes, as well as increased satisfaction with nursing care activities as perceived by older patients and nursing staff. The implementation of educational sessions during the model of care improved the older patient's functional activities and knowledge levels of their medication regime prior to discharge. In addition, by repeatedly explaining procedures, nurses became more involved with their individual patient's care, developing a patient‐centred care relationship based on Orem's self‐care model. Conclusions. This study demonstrates the efficacy of a new model of nursing care in improving the quality of nursing care for older patients in the acute medical ward setting. Relevance to clinical practice. This study is significant because of its evidence‐base and demonstrates how the participatory action research process empowered nurses to make sustainable changes to their practice. The nurses in the study wanted to affect change. The planned change was not dictated by management, but was driven by the clinical nursing staff at the ‘grass roots’ level. Therefore, being involved in the decision‐making process provided an incentive to actively implement change.     

Preserving personhood of individuals with advanced dementia: Lessons from family caregivers

This article reports on a phenomenological study of 15 family caregivers who admitted their spouse or parent with probable Alzheimer's disease to long-term care. The caregivers were attuned to the needs, desires, moods and concerns of their family members with dementia; thus, they were attuned to personhood. Caregivers also reported observations of care by nurses and nursing staff. Observations were of individualized care and actions that promoted personhood and impoverished care delivered with minimal or no communication. These family caregivers' perspectives can inform the care of individuals with advanced dementia by nurses and nursing staff.     

Finnish nurses' perceptions of care of older patients

The aim of the study was to explore how far the perceptions of care of nurses in Finland take into account the preferences of the older patient and the patient's family members and to evaluate related background factors. The data were collected by questionnaire with nurses (n = 167) working in a geriatric hospital. The questionnaire contained items about shared decision‐making, attitudes to nursing patients, assessment of patients' functional ability and need for care, goal‐setting, evaluation of outcomes and discharge planning. This study showed that taking into account the preferences of the patient and the patient's family members regarding the patient's care was challenging for the nurses in practice. About one‐third of the nurses reported making the decisions on a patient's care themselves and not respecting patient autonomy in situations where patients are not able to assess their own situation. In addition, the nurses reported asking for the views of patients less frequently than those of family members when assessing and setting patient care goals. In practice, nurses need to be aware of this, during the transition from routine‐centred care to patient‐centred care.     

Lived experiences of family caregivers of mentally ill relatives

AIM: The aim of this paper is to report a study conducted to explore the meanings of the lived experiences that Chinese family caregivers in Malaysia ascribed to the care they provided to relatives with severe and persistent mental illness. BACKGROUND: In the past, many researchers have used quantitative approaches to explore the experiences of family caregivers of relatives with severe and persistent mental illness. However, the results of these studies have been far from conclusive because of serious methodological flaws. In addition, a large majority of these studies were conducted in western cultures, and it has been difficult to transfer the results to family caregivers in oriental cultures. METHOD: The philosophy of Martin Heidegger underpinned the study. Qualitative data were collected mainly through in-depth interviews with 19 criterion-selected Chinese family caregivers of relatives with severe and persistent mental illness in 2002. FINDINGS: We present the emergent themes reflecting the meaning structures of managing, enduring, and surviving the day-to-day experiences of the Chinese family caregivers. The impact of the stigma of the relatives' mental illness on family caregivers and families is pervasive and strong. As a result, family caregivers tried to avoid talking about their relative's mental illness with extended family or friends in order to protect their families from 'losing face'. In addition, most family caregivers believed that adopting positive behaviours and attitudes helped them cope with caregiving. CONCLUSION: Mental health nurses need to help Chinese family caregivers to cope with the stresses and stigmas of their relatives' mental illnesses through psychosocial education or family intervention, and to provide them with culturally-congruent care. They should also educate the public about mental health and ill health through health promotion and education.     

Quality of life and satisfaction with care among family caregivers of patients with recurrent or metastasized digestive cancer requiring palliative care

Purpose

Satisfaction with care is thought to be important for quality of life (QOL) of family caregivers of patients with recurrent or metastasized digestive cancer requiring palliative care. This study aimed to clarify (1) family caregivers’ QOL status and (2) factors related to their QOL, including satisfaction with care.

Methods

Data were collected from 111 family caregivers of patients with recurrent or metastasized digestive cancer. The Short-Form 36 (SF-36) (acute version) was used to measure QOL.

Results

Family caregivers’ QOL was lower than the national average (Cohen’s d?=?0.12–0.66). Lower age of patients and family caregivers (standardized regression coefficient (β)?=??0.18, β?=??0.26) and family caregivers’ perceived health (β?=?0.22) were related to better physical health of family caregivers, but satisfaction with care was not related to physical health. However, family caregivers’ mental health was related to their satisfaction with care (Spearman’s rank correlation coefficient (r)?=?0.49–0.61, standardized regression coefficient (β)?=?0.24–0.42), as well as higher age of family caregivers (β?=?0.25), their perceived health (β?=?0.30), non-spousal caregiver (β?=??0.20), patient lacking a history of surgery aimed at radical treatment (β?=??0.22), and patient not hospitalized solely for symptom relief (β?=??0.10).

Conclusions

Family caregivers of patients with recurrent or metastasized digestive cancer requiring palliative care had lower QOL, both physically and mentally, than the national average. Improvements in satisfaction with care may contribute to improved QOL.