Patients’ and Relatives’ Preferences for a Palliative/Oncology Day Ward and Out-of-Hours Telemedicine—An Interpretive Description

Abstract

Demographical challenges require adaptation and tailoring of services to suit palliative patients’ and relatives’ needs. Therefore, an interpretive descriptive study was performed to explore patients’ and relatives’ preferences for the establishment of a day ward and out-of-hours telemedicine. Semi-structured interviews were performed, and data were analysed using thematic analysis. Participants included patients (n = 12) and relatives (n = 5). Three themes emerged: (1) ‘Transport burden’ relates to transition from home-to-hospital-to-home and acknowledges the strain placed on patients and relatives. (2) ‘Role of relatives’ contemplates how the role of families in patient care influences patient preferences. (3) ‘Telemedicine—preferences and concerns’ covers preferences and concerns related to telemedicine in palliative care. The burden of transport and living alone play substantial roles in preferences for place of treatment. Relatives of palliative patients who avail of a day ward and telemedicine may experience an increase in the burden of care. Recognition of concerns pertinent to palliative patients and relatives is an important step in planning new services in palliative care. Concerns may be mitigated by rethinking referral guidelines, incorporating voluntary services, early integration of telemedicine into palliative care and examining patients and relatives’ expectations to care, but requires further research.

Patient and families’ perspectives on telepalliative care: A systematic integrative review

“…3,4,32,33,36,47,51,57–59,62,63,67,70,71 Family members, where specified, were mainly patients and spouses, but also patients and; adult children, siblings, parents, friends or neighbours or other family members. 3,27,32,34,35,38,39,43,44,46–49,53–55,57 –59,61,64,67,68,71,73 Video consultations accounted for the most frequently used technology solution, alone ( n = 11), 35,36,43,46,51,62 –64,67,70,71 and in combination with other technologies; video consultations and telephone ( n = 4), 47,52,53,57 video consultations, websites and online forums ( n = 3), 38,58,59 video consultations, emails, applications (apps), and remote monitoring ( n = 2), 4,…”

“…The included studies (n = 44) comprised of 19 qualitative, 3,4,27,32-47 5 quantitative [48][49][50][51][52] and 20 mixedmethods studies, spanning 18 countries in; North America, 4,[39][40][41][46][47][48]50,[53][54][55][56]58,59,[61][62][63]65,66,[68][69][70][71][72][73][74] South America, 51 Europe, 3,27,[33][34][35][36][37][38]49,52,57,60 Africa, 32,44 Asia 45,67 and Australia. 64 The palliative care context was broad including; specialised palliative care in hospital and home settings (n = 19), 3,...…”

Protocol for an integrative review: patient and families’ perspectives on telehealth in palliative care

“…Patients and public were not actively involved in the design of this protocol. However, a motivating factor in performing this review was the findings of a qualitative study on patient and relatives’ preferences in relation to telepalliative care performed by the authors EHB and GB 40. This review protocol is part of a PhD project and will guide further coproduction studies with active patient and family participation.…”

“…There is a dearth of knowledge on how telepalliative care is understood and experienced from within the family unit. Our research group has previously demonstrated how the preferences of family members influence patients’ perceptions of how they would like to receive PC in the future 40. Understanding the role that families play in telepalliative care is pivotal in understanding how or why some barriers or facilitators exist and how they present in the context of family telepalliative care.…”

“…Our research group has previously demonstrated how the preferences of family members influence patients’ perceptions of how they would like to receive PC in the future. 40 Understanding the role that families play in telepalliative care is pivotal in understanding how or why some barriers or facilitators exist and how they present in the context of family telepalliative care. Therefore, by carrying out an integrative review (IR) on the topic from a patient and family perspective, this study will provide a new understanding of evidence, identify gaps, form a base for further research, and ultimately, may assist in increasing adoption and sustainability in telepalliative care for patients both with and without cancer illnesses and their families throughout the illness trajectory.…”