How Do Relatives Experience Advanced Home Care? A Qualitative Study

Abstract

The provision of around-the-clock care by advanced home care services subjects families and relatives in Germany to significant psychosocial demands. In addition to coping with the serious illness of their family member, they have to compensate for the lack of privacy caused the constant presence of a nurse. Accordingly, they feel ambivalent about caregivers. The qualitative study conducted narrative interviews that addressed the question as to how relatives and families experience home mechanical ventilation. It was possible to identify two main topics: the burdens and health-maintaining resources resulting from the care setting. The main burdens that are experienced include living in a public space, the lack of psychosocial support from service providers, as well as the lack of professional and social skills of the caregivers interacting with families.

Comparing the quality of care for long-term ventilated individuals at home versus in shared living communities: a convergent parallel mixed-methods study

“…The qualitative component of our study showed that delivering person-centred care is possible but needs respect and understanding about the ventilated individuals and their families. Additionally, in line with other studies [ 23 , 24 , 31 ], we became aware of a challenging psychosocial factor: Due to the continuous presence of a nurse or an assistant, the boundaries between professional care and family become blurred. Therefore, we recommend to deepen psychosocial aspects in further education and to conduct regular supervisions.…”

“…Furthermore, ventilated individuals in an SLC are also supported by their family caregivers, e.g., by frequent and time-consuming visits, care coordination, managing finances, shopping or household activities. Other qualitative studies have confirmed a substantial burden to the lives of family caregivers and call for approaches to support them and improve caregiver well-being [ 24 , 30 , 31 ]. To reduce the burden on family caregivers and improve care overall, we recommend care focusing on the family, and not only the ventilated individual.…”

“…A single qualitative study found that person-centred care practise during prolonged weaning from mechanical ventilation could optimise weaning success [ 28 ]. Further studies indicate the high burden on the families of HMV patients [ 29 – 31 ], whereby the large gap between the expectations of the families and the actual support services became apparent [ 29 ]. Overall, there is limited evidence on how HMV should be delivered to affected individuals to improve person-centred outcomes [ 14 ].…”