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. Electronic supplementary material The online version of this article (10.1186/s12913-019-4295-7) contains supplementary material, which is available to authorized users.

Comparison of Hospital-at-Home models: a systematic review of reviews

“…Further clarification on caregiver outcomes, especially caregiver burden, is also required given caregivers’ crucial roles in HaH programmes. 21 …”

“…Further clarification on caregiver outcomes, especially caregiver burden, is also required given caregivers' crucial roles in HaH programmes. 21 Lastly, there was limited reporting on facilitators, barriers and process indicators such as adverse events. Future trials and reviews should report these given that one of the initial objectives of developing the HaH model was to reduce iatrogenic events, and the incidence of iatrogenic events is also a frequently theorised comparison point between ESD and AA.…”

“…These are pertinent for potential adopter organisations to evaluate the feasibility of HaH in their respective settings as past studies have pointed to constraints in the HaH model (eg, in terms of patient eligibility due to medical condition severity) 20 and caregiver availability. 21 Moreover, process indicators are valuable in assessing the fidelity of implementation and identifying components that increase the success of HaH implementation. 22 …”

<p>The Experiences of Multiple Sclerosis Patients’ Family Caregivers at the First Hospitalization of Their Patients: A Qualitative Study</p>

“…The results show that, after one year, the family caregivers' satisfaction increased and the indexes of their quality of life improved. 56 A family-centered care program is another innovative approach to planning, providing, and checking healthcare. In this kind of program, the abilities and needs of all the members of a patient's family are considered.…”

Dificuldades E Necessidades Dos Cuidadores De Idosos No Domicílio

“…Destaca-se, no entanto, que a função do cuidador familiar é repleta de desafios e limitações, sendo evidenciado que estes enfrentam uma série de problemas durante a assistência domiciliar ao idoso dependente, que vão desde problemas de saúde (exaustão física e mental) a falta de apoio e preparo para executar esta função. [8][9][10] Torna-se, com isso, fundamental identificar e conhecer as dificuldades e necessidades desses cuidadores no ambiente domiciliar.…”