JMIR Publications

ABSTRACT

Background:

Telepalliative care, the use of telehealth in palliative care, has emerged as a strategy to improve access to specialist palliative services amid growing demand, workforce shortages, and increasing digitalization of health care. Although telepalliative care has demonstrated positive outcomes for patients, families, and clinicians, its integration into standard services remains inconsistent. Existing initiatives are often operationally focused and rarely grounded in programme theory or developed collaboratively with key stakeholders, limiting sustainability and contextual alignment, particularly in Nordic health systems that emphasize home-based palliative care.

Objective:

This study aimed to develop a family focused model of telepalliative care for clinical practice through active involvement of key stakeholders.

Methods:

A co-design qualitative study grounded in interpretive description was conducted. The development followed the British Medical Research Council’s guidance for the development and evaluation of complex interventions and represents the development phase. Key stakeholders including patients, family representatives, specialized palliative care team members, community care nurses, general practitioners, voluntary representatives, IT consultants, managers, and researchers, were purposively recruited. Data were generated through four scientific workshops across two Danish sites, supplemented by participant observations of video consultations and a short questionnaire inspired by the Normalisation Measure Development (NoMAD) questionnaire. Data were analyzed using abductive thematic analysis, with qualitative and quantitative findings converged and iteratively refined through stakeholder consensus. A programme theory and logic model guided development.

Results:

Eighteen stakeholders participated in the workshops, with additional input from clinicians through observations (6 consultations involving 22 participants) and questionnaires (n=10). Findings highlighted both alignment and tension between the proposed model and current clinical practice, particularly regarding when and for whom telepalliative care should be used, clinician digital competencies, and family involvement. These, and insights from previous studies, informed the primary output of the study which is Pallvi – Family Focused Telepalliative Care, a comprehensive, theory-informed model comprising of a structured consultation guide and two co-designed quick guides; one for health care professionals and one for patients and families. Pallvi integrates family focused care, shared decision-making, advance care planning, and the Calgary-Cambridge Communication Guide, operationalized across seven consultation phases.

Conclusions:

Through systematic stakeholder involvement and theory-driven development, this study produced a contextually and culturally aligned family focused model of telepalliative care. Pallvi addresses identified gaps in telepalliative care research by providing a structured, practical guide designed to support communication, family involvement, and cross-sectoral collaboration. Future research will focus on feasibility and implementation testing to assess acceptability, fidelity, and sustainability in clinical practice and implementation.