Health Technologies and Infrastructures for Supporting Home-based Pediatric Palliative Care: A Scoping Review (Preprint)
Authors: Steindal Simen Alexander , Winger Anette , Riiser Kirsti , Bjørnerud Erik , Chen Weiqin , Holmen Heidi 
Published: December 2024

BACKGROUND

Families with children who need pediatric palliative care (PPC) often stay at home to preserve a sense of normalcy. However, families may experience challenges regarding communication and follow-up from health-care professionals (HCPs). Using health technologies for home-based PPC may be a way to facilitate communication between families and HCPs. Since health technology is frequently used in home-based PPC, a scoping review is needed to map existing health and communication technologies and infrastructures for supporting children who need PPC and their families.

OBJECTIVE

The objective of this scoping review was to systematically map the literature on health technologies and infrastructures to support communication in home-based PPC.

METHODS

We conducted a scoping review based on Arksey and O’Malley’s methodological framework and performed a systematic search for relevant publications in the ASSIA, CINAHL, Embase, Medline, PsycINFO, and Web of Science databases in November 2023. The inclusion criteria were publications on the following: children (aged 0–18) with life-limiting and/or life-threating conditions requiring PPC and their families; HCPs, social care workers, or teachers caring for children in need of PPC and using any health technologies and infrastructures to support two-way communication in home-based care; and literature published between January 1, 2018, and November 22, 2023, in Danish, English, Norwegian, or Swedish. Pairs of authors independently assessed eligibility and extracted data, which were summarized using a descriptive approach.

RESULTS

This review included 39 publications: 18 empirical papers, 6 protocol papers, 7 abstracts, 3 brief publications, 2 review papers, and 3 case publications. In 28.2% of the publications (n = 11/39), the researchers applied user-centered phased-design approaches to develop health technology for PPC. Children with cancer were the most prominent group studied in the research publications. The most frequent delivery of health technology for communication in home-based PPC combined asynchronous and synchronous modes (46.2%, n = 18/39). Furthermore, the most frequent health technology apps for communication in home-based care were symptom monitoring apps (35.9%, n = 14/39), video technology (17.9%, n = 7/39), and health monitoring and video technology (7.7%, n = 3/39). Smartphones (35.9%, n = 14/39), Internet and Wi-Fi (30.8%, n = 12/39), computers or laptops (23.1%, n = 9/39), and tablets (23.1%, n = 9/39) were the most frequently reported infrastructures.

CONCLUSIONS

Children with cancer and their families are the most frequently reported users of health technology for communicating with HCPs in home-based PPC. However, research on the use of such technology for children with diagnoses other than cancer and their families is limited. Combining asynchronous and synchronous modes is the most frequent way to deliver health technology, and children and their families often communicate with HCPs using symptom monitoring apps. Reports of health technology infrastructure for home-based PPC were scant or insufficiently accounted for.

CLINICALTRIAL

https://osf.io/t9h4c/