Patterns of caregiving when family caregivers face competing needs

'Finding a balance point' is a process used by caregivers to achieve or preserve equilibrium in caregiving while facing competing needs. This paper describes different patterns of 'finding a balance point'. Interviews with 15 family caregivers receiving home nursing services and 14 family caregivers of hospitalized and discharged frail elders were analysed using constant comparison. Sources of competing needs and the strategies used to find a balance point were identified by participants. Findings suggest that caregivers in a stable situation maintain a balance point, caregivers experiencing major family change try to regain a balance point, and caregivers experiencing the transition from hospital to home work at establishing a balance point. These findings can sensitize nurses to family caregivers' needs and conditions.     

Revisioning,reconnecting and revisiting: the psychosocial transition of returning home from hospital following a stroke

Abstract

Purpose: This study aimed to investigate and improve understanding of the experiences of patients and their carers during the first month at home following discharge from hospital, thereby enhancing appropriate care from a more informed perspective. Method: In-depth interviews and self-report diaries were used to capture data from 12 patient/carer dyads. Four survivors with marked communication problems were included in this number, two requiring the use of pictures and diagrams to express their views. Interpretative phenomenological analysis (IPA) was used to capture and interpret survivor and carer experiences. Findings: Three superordinate themes were derived from the data. Stroke survivors and their carers described the first month at home as a very dynamic time, recounting a process that involved revisioning (re-examining their identity and the reality of their new situation, including an awareness of their own mortality), reconnecting (with important relationships and previous activities) and revisiting (their past lives, and the stroke event and hospital experience). These three activities assisted in making and finding sense in their new situation; participants’ vision of their lives was revised and revisited as they attempted to reconnect with as much of their past selves and past activities as possible. Conclusions: This study contributes to understandings through in-depth individual accounts of the psychosocial transition of returning home. Details of how people make sense of their altered situation can make a valuable contribution to research, and the knowledge base for care provision.

• Implications for Rehabilitation

• Supporting people to revision their future can assist with psychosocial transition following a stroke.

• Assisting patients to reconnect and reintegrate in a way that is meaningful to them is an important part of the rehabilitation support that can be offered by professionals, and can be informed by awareness of their vision of what the future may now hold.

• Offering people the opportunity to reflect on what has occurred, either verbally or in the form of a diary, can assist adjustment and help people to make sense of their changed situation.

     

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.     

Becoming a caregiver: new family carers' experience during the transition from hospital to home

Aims and objectives. To explore and understand the experience of new informal caregivers in Italy during the transition from hospital to home. Background. Frequent patient discharge into the home environment has lead to a significant increase in postdischarge care being provided by family caregivers. The transition period in particular is seen as a period of great significance, as caregivers may be unprepared and concerned as to the amount of care required by the recipient. Design. A qualitative phenomenological approach was used to gain a deeper understanding of caregivers’ lived experiences. Methods. Data were collected at two points in time using different methodologies: in‐depth interviews were conducted to explore the caregivers’ perspective of the predischarge period; focus groups obtained data after the patients’ re‐entry into the home environment and aimed to validate interview findings. Results. Family caregivers reflected on three main themes during the transition period: (1) their newly acquired role; (2) the recipient’s condition; and (3) the support they required. The core concept of ‘being responsible for everything’ seemed to be a recurring theme running through these three subject matters. Fulfilling numerous commitments and different social roles besides the caring activity itself seemed to weigh heavily on caregivers. Carers were referring particularly to their need for hope, confidence and safety during the transition from hospital to home. Conclusions. It cannot be assumed a priori that families can cope with the demands of care‐giving. Therefore, healthcare professionals should come to recognise caregivers as persons in need of emotional and practical support. Relevance to clinical practice. The findings of this study can stimulate healthcare professionals to acquire effective communication skills and display an empathic attitude when assessing caregivers’ needs in the particularly challenging phase of transition from hospital to home.     

Components of a proper hospital discharge for elders

SIGNIFICANCE: Effective discharge planning is a vital link in continuity of care for elders. Previous studies identify problems with planning for elders' discharge from the hospital and problems elders encounter managing care post-discharge. However, little attention has been given to identifying effective discharge planning processes. Explicating the components of effective discharge planning is critical to replicate the process in other health care settings and predict post-discharge outcomes. PURPOSE: The purpose of this study was to identify the components of effective discharge planning for elders and factors that impede planning. METHODS: Ethical approvals were obtained from the University and National Health Service (NHS) Trust. Qualitative methods were used and data were collected from two wards in a 78-bed geriatric rehabilitation hospital that was part of a National Health Service Trust serving Southwest London. Data included semi-structured interviews and documents related to discharge planning, care delivery, and community resources. A total of 24 semi-structured interviews were conducted with health care professionals who were part of the hospital's multidisciplinary team, those affiliated with the Community Trust that provided aftercare, elders, and family carers. RESULTS: Participants consistently used the term "proper discharge" when referring to effective discharge planning. The multidisciplinary team comprised a vital context for a proper discharge. The findings indicated that three circles of communication were central in a four stage discharge process. Different circles of communication were key at different stages. CONCLUSIONS: The findings provide insights for educating nurses about effective planning practices and examining the global significance of impediments to a proper hospital discharge.     

The transition from hospital to home for individuals with acquired brain injury: A literature review and research recommendations

Purpose. To review the literature relating to the transition from hospital to home for individuals with acquired brain injury (ABI) and make recommendations concerning the future direction of transition-specific research.

Method. Relevant research articles were identified through searching existing database systems and by reviewing the reference lists of identified articles. Only articles in which the results directly related to individuals with ABI from the time of discharge to 1 year post-discharge were included in the review.

Results/discussion. A total of 50 articles were identified as meeting the criteria for inclusion in the review. The methodological quality of included articles was evaluated using a set of specific criteria. The articles were classified into the following categories: (i) The perspectives of individuals with ABI and their caregivers; (ii) outcomes for individuals with ABI following transition; (iii) post-discharge services; and (iv) transitional living services/programmes. The majority of articles were based on samples of individuals with stroke, typically aged over 65 years. A common theme identified in the review was that the transition from hospital to home is typically perceived as an exciting yet difficult period for individuals and their families and as such, post-discharge support is critical.

Conclusion. Further ABI transition-specific research is necessary in order to: (i) Develop a comprehensive theoretical framework of the transition phase; and (ii) facilitate both the validation of current intervention strategies and the development of innovative/tailored intervention approaches.     

Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers

It is increasingly common that cancer patients are cared for at home at the end of life, with help from advanced home care teams. This may have positive implications for cancer patients and their families, but it may also be burdensome to the family caregivers with implications for their health and well-being. This qualitative study was therefore initiated to prospectively explore how family caregivers reason about their expectations of providing end-of-life care at home for relatives with cancer, enrolled in advanced palliative home care units. Ten interviews were conducted with 11 family caregivers at enrollment to the home care unit. A form of constant comparative analysis was used to generate two main themes from the data. One theme concerned the role transition into becoming a family caregiver, whereas the other theme relates to the transition to a new life situation of the caregiver (him/herself). The family caregivers describe themselves as the persons primarily bearing responsibility and providing care for their dying relatives. They were found to have many concerns about their own situation, especially in regard to issues temporally after the death of the patient, but seemed to have few expected sources of support related to these concerns. Professional support is described as expected primarily for care-related tasks, although hopes may be expressed about support in other areas. The distinction between resources described as existing in theory and those used in practice also are apparent in analysis of the interviews. If home care is to be a positive alternative to hospital care, individual expectations should be considered when planning supportive care.     

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.     

Interventions to support people with dementia and their caregivers during the transition from home care to nursing home care: A systematic review

BackgroundDuring the transition of people with dementia from home to nursing home family caregivers often feel burdened.ObjectivesWe aimed to 1) identify interventions which support people with dementia and their caregivers in the transition from home care to nursing home care, 2) synthesize the evidence for efficacy of these interventions, and 3) examine whether the identified interventions have been systematically developed, evaluated and implemented according to the Medical Research Council guidance on complex interventions.DesignA systematic review of randomised controlled trials was conducted according to the recommendations specified in the Cochrane Handbook for Intervention Reviews. The review protocol was registered in PROSPERO (2015: CRD42015019839). Reporting follows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses: the PRISMA statement.Data sourcesMEDLINE, CENTRAL, PsycINFO, CINAHL, OTseeker, and PEDro, were searched. Other sources included Google Scholar, and ALOIS.Review methodsTwo reviewers independently assessed the eligibility of the articles. Data extraction was performed by one reviewer and verified independently by another. The Cochrane Risk of Bias tool was used for critical appraisal. Development and evaluation of the identified interventions were assessed, taking the Medical Research Council guidance into account. Review findings were synthesized narratively.ResultsThe search yielded 1278 records. Five studies were included, all conducted in the United States (4 RCTs and 1 cRCT with a total of 695 participants). The psychosocial interventions were individual and family counseling via telephone or ad hoc all of which addressed only informal caregivers. The intervention components, content and mode of delivery differed widely with inconsistent results. Significant intervention effects were found for the reduction of caregivers’ depressive symptoms, burden, feeling of guilt, emotional distress, overload, and interactions with staff. Other outcomes, i.e. stress, placement adaptation, role overload, and role captivity, were not statistically significantly affected. The assessment for bias risk across studies varied from moderate to low. Only two studies tested the feasibility of the intervention before full scale evaluation, none evaluated the implementation process according to the Medical Research Council framework.ConclusionsWe identified only a few studies with heterogeneous outcomes; evidence regarding the effectiveness of psychosocial interventions is thus insufficient. Further research is needed focusing on the development and evaluation of complex psychosocial interventions and more well-designed RCTs with larger sample sizes based on a rigorous methodology. Reporting on feasibility and implementation processes of interventions should be guaranteed, since it is crucial to evaluate transferability across care settings.     

Creating avenues for relative empowerment (CARE): a pilot test of an intervention to improve outcomes of hospitalized elders and family caregivers

The purpose of this pilot study was to evaluate the effectiveness of a family caregiver-focused intervention program (CARE) on the outcomes of hospitalized elders and their family caregivers. A randomized clinical trial was conducted with 49 family caregivers of hospitalized elders in a university medical center in upstate New York. Driven by self-regulation and role theories, the two-phase CARE program consisted of: (a). a mutual agreement consisting of family caregiving activities during hospitalization; and (b). audiotaped information regarding emotional responses and possible complications associated with an elderly patient's hospitalization as well as instructions for effectively participating in the elder's hospital care. The comparison program consisted of information about hospital services and policies. CARE elders had fewer incidents of acute confusion reported by family caregivers during hospitalization and fewer depressive symptoms at 2 weeks and 2 months posthospitalization than did the comparison group. CARE family caregivers participated more in the care of their hospitalized elders and had higher scores on role rewards prior to hospital discharge. Findings from this study support the need for further testing of the CARE intervention with family caregivers to determine its effectiveness on outcomes of hospitalized elders and their family caregivers.