Dataset Information

The experience of patients and family caregivers during hospital-at-home in France.

ABSTRACT:

Background

Public health policies tend to generalize the use of Hospital-At-Home (HAH) to answer the growing will of patients to be treated or to die at home. HAH is a model of care that provides acute-level services in the patient's home with the interventions of variety of health care professionals. Relatives participate also in the interventions by helping for sick patients at home, but we lack data on the care of patients and caregivers in HAH. The aim of this study was to make an inventory of the experiences of patients and family caregivers in HAH.

Methods

The research was qualitative using nineteen semi-directed interviews from nine patients and ten caregivers of one care unit of Greater Paris University Hospitals' HAH, and the grounded theory was used to analyze the transcripts. Caregivers were also asked, after the interview, to fill in the Zarit Burden Inventory.

Results

HAH remained mostly unknown for patients and caregivers before the admission proposition and the outlook of being admitted in HAH was perceived as positive, for both of them. Caregivers had a versatile role throughout HAH, leading to situations of suffering, but also had sources of support. The return home was considered satisfactory by both caregivers and patients, related to the quality of care and increased morale despite HAH's organizational constraints. We noted an impact of HAH on the relationship between the patient and the caregiver(s), but caused by multiple factors: the fact that the care takes places at home, its consequences but also the disease itself.

Conclusion

HAH strongly involved the patient's caregiver(s) all along the process. HAH's development necessitates to associate both patients and caregivers and to take into account their needs at every step. This study highlights the need to better assess the ability of the caregiver to cope with his or her relative in HAH with acute and subacute care at home.

SUBMITTER: Rossinot H

PROVIDER: S-EPMC6617632 | biostudies-literature | 2019 Jul

REPOSITORIES: biostudies-literature

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Publications

The experience of patients and family caregivers during hospital-at-home in France.

Rossinot Hélène H Marquestaut Odile O de Stampa Matthieu M

BMC health services research 20190709 1

<h4>Background</h4>Public health policies tend to generalize the use of Hospital-At-Home (HAH) to answer the growing will of patients to be treated or to die at home. HAH is a model of care that provides acute-level services in the patient's home with the interventions of variety of health care professionals. Relatives participate also in the interventions by helping for sick patients at home, but we lack data on the care of patients and caregivers in HAH. The aim of this study was to make an in ...[more]

PMID: 31288804

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Project description:Family caregivers in palliative care have a need for knowledge and support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in palliative home care.A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver's need for knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation by healthcare professionals from an intervention manual. An interpretive descriptive design was chosen and data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis.From the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was a positive experience. Although the content was not always adjusted to the family caregivers' individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work.The theoretical framework used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.

Project description:BackgroundInadequately managed pain is a serious problem for patients with cancer and those who care for them. Smart health systems can help with remote symptom monitoring and management, but they must be designed with meaningful end-user input.ObjectiveThis study aims to understand the experience of managing cancer pain at home from the perspective of both patients and family caregivers to inform design of the Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C) smart health system.MethodsThis was a descriptive pilot study using a multimethod approach. Dyads of patients with cancer and difficult pain and their primary family caregivers were recruited from an outpatient oncology clinic. The participant interviews consisted of (1) open-ended questions to explore the overall experience of cancer pain at home, (2) ranking of variables on a Likert-type scale (0, no impact; 5, most impact) that may influence cancer pain at home, and (3) feedback regarding BESI-C system prototypes. Qualitative data were analyzed using a descriptive approach to identity patterns and key themes. Quantitative data were analyzed using SPSS; basic descriptive statistics and independent sample t tests were run.ResultsOur sample (n=22; 10 patient-caregiver dyads and 2 patients) uniformly described the experience of managing cancer pain at home as stressful and difficult. Key themes included (1) unpredictability of pain episodes; (2) impact of pain on daily life, especially the negative impact on sleep, activity, and social interactions; and (3) concerns regarding medications. Overall, taking pain medication was rated as the category with the highest impact on a patient's pain (=4.79), followed by the categories of wellness (=3.60; sleep quality and quantity, physical activity, mood and oral intake) and interaction (=2.69; busyness of home, social or interpersonal interactions, physical closeness or proximity to others, and emotional closeness and connection to others). The category related to environmental factors (temperature, humidity, noise, and light) was rated with the lowest overall impact (=2.51). Patients and family caregivers expressed receptivity to the concept of BESI-C and reported a preference for using a wearable sensor (smart watch) to capture data related to the abrupt onset of difficult cancer pain.ConclusionsSmart health systems to support cancer pain management should (1) account for the experience of both the patient and the caregiver, (2) prioritize passive monitoring of physiological and environmental variables to reduce burden, and (3) include functionality that can monitor and track medication intake and efficacy; wellness variables, such as sleep quality and quantity, physical activity, mood, and oral intake; and levels of social interaction and engagement. Systems must consider privacy and data sharing concerns and incorporate feasible strategies to capture and characterize rapid-onset symptoms.

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Project description:BackgroundInterventions relieving the burden of caregiving may postpone or prevent patient institutionalization. The objective of this study was to determine whether a family meetings intervention was superior to usual care in postponing nursing home placement of patients with dementia.MethodsA randomized multicenter trial was conducted among 192 patients with a clinical diagnosis of dementia living at home at enrolment and their primary family caregiver. Dyads of caregivers and patients were randomized to the family meetings intervention (n = 96) or usual care (n = 96) condition. The intervention consisted of two individual sessions with the primary caregiver and four family counseling sessions that included family members and friends. The primary outcome measure was the time until institutionalization of the patient. Intention-to-treat as well as per protocol analyses were performed. Survival analyses were carried out to evaluate the effectiveness of the intervention.ResultsDuring 18 months follow-up 23 of 96 relatives with dementia of caregivers in the intervention group and 18 of 96 relatives with dementia of caregivers in the usual care group were institutionalized. No significant difference between the intervention and the usual care group was found in time until institutionalization (adjusted hazard ratio (HR) 1.46, 95% confidence interval (CI) 0.78 to 2.74). The per-protocol analysis revealed no significant effect either (adjusted HR 0.57, 95% CI 0.21 to 1.57), although the number of placements among the adherers was relatively low (9.4%). A subgroup effect was found for patients' age, with a significantly higher risk of institutionalization for 'younger' patients in the intervention group compared with the usual care group (adjusted HR = 4.94, 95% CI 1.10 to 22.13).ConclusionThis family meetings intervention for primary caregivers of patients with dementia did not postpone patient institutionalization more than usual care.Trial registrationCONTROLLED-TRIALS.COM ISRCTN90163486.

Dataset Information

The experience of patients and family caregivers during hospital-at-home in France.

Background

Methods

Results

Conclusion

Publications

The experience of patients and family caregivers during hospital-at-home in France.

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