Interview Results From a Telehealth Hospice Intervention for Children and Young Adults With Cancer

Shaheen Rana; Nicholas P DeGroote; Ebonee Harris; Anna Lange; Karen Wasilewski-Masker; James L Klosky; Joanne Wolfe; Dio Kavalieratos; Katharine E Brock

doi:10.1016/j.jpainsymman.2024.12.018

Interview Results From a Telehealth Hospice Intervention for Children and Young Adults With Cancer

J Pain Symptom Manage. 2024 Dec 31:S0885-3924(24)01230-2. doi: 10.1016/j.jpainsymman.2024.12.018. Online ahead of print.

Authors

Shaheen Rana¹, Nicholas P DeGroote², Ebonee Harris², Anna Lange², Karen Wasilewski-Masker³, James L Klosky³, Joanne Wolfe⁴, Dio Kavalieratos⁵, Katharine E Brock⁶

Affiliations

¹ Intervention Development (S.R.), Dissemination and Implementation Shared Resource, Winship Cancer Institute of Emory University, Atlanta, GA, USA.
² Aflac Cancer & Blood Disorders Center (N.P.D., A. L., K.W.M., J.L.K., K.E.B.), Children's Healthcare of Atlanta, Atlanta, GA, USA.
³ Aflac Cancer & Blood Disorders Center (N.P.D., A. L., K.W.M., J.L.K., K.E.B.), Children's Healthcare of Atlanta, Atlanta, GA, USA; Emory University School of Medicine (K.W.M., J.L.K., K.E.B.), Department of Pediatrics, Emory University, Atlanta, GA, USA.
⁴ Massachusetts General Hospital (J.W.), Department of Pediatrics, Boston, MA, USA; Brigham and Women's Hospital (J.W.), Department of Pediatrics, Boston, MA, USA; Harvard Medical School (J.W., D.K.), Boston, MA, USA.
⁵ Harvard Medical School (J.W., D.K.), Boston, MA, USA; Department of Family and Preventive Medicine (D.K.), Division of Palliative Medicine, Emory University, Atlanta, GA, USA.
⁶ Aflac Cancer & Blood Disorders Center (N.P.D., A. L., K.W.M., J.L.K., K.E.B.), Children's Healthcare of Atlanta, Atlanta, GA, USA; Emory University School of Medicine (K.W.M., J.L.K., K.E.B.), Department of Pediatrics, Emory University, Atlanta, GA, USA. Electronic address: Katharine.brock@choa.org.

PMID: 39746494
DOI: 10.1016/j.jpainsymman.2024.12.018

Abstract

Background and aims: Surveyed families of children and young adults with cancer who participated in a pilot study of three coordinated telehealth visits (triad of patient/family, hospital clinician, and hospice nurse) during the first month of hospice enrollment found telehealth feasible and were highly satisfied with hospice care. The aim of this study is to further explore adult patient and caregiver perspectives on telehealth, specifically the benefits of telehealth, trade-offs with in-person appointments, and the impact on patient care and family end-of-life preparations.

Methods: This is a single-arm prospective pilot study of patients aged 0-29-with cancer initiating hospice care between 2021 and 2022 and their caregivers. Semi-structured qualitative interviews were conducted with adult patients after the first telehealth visit and with caregivers during bereavement. Traditional content analysis methods were employed to analyze the interviews.

Results: The primary themes identified were (1) convenience and positive experiences with technology (addressing family questions and concerns, comfort of home, user-friendliness of technology), (2) benefits of coordinated appointments (improved collaboration/communication among team members and patient/caregiver understanding), (3) the positive impact of telehealth visits on care (symptom management, support, and preparation for end-of-life).

Conclusions: Adult patients enrolled in hospice and bereaved caregivers found coordinated telehealth visits to be beneficial, notably the convenience, comfort, time and cost savings of participating from home. Coordinated telehealth visits provide opportunities for hospice and hospital clinicians to communicate and collaborate on symptom management plans while supporting and guiding families in end-of-life preparations.

Keywords: Childhood cancer; Hospice; Pediatric oncology; Pediatric palliative care; Telehealth; Telemedicine.