BMJ paediatrics open · 2026
Communication, everyday life and technology from the perspectives of children with life-limiting or life-threatening conditions: a qualitative study.
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Martinsen Linda Johanne, Holmen Heidi, Steindal Simen Alexander, Winger Anette
Аннотация
BACKGROUND: Children with life-limiting or life-threatening conditions who are eligible for paediatric palliative care often have complex care needs. However, they prefer to live as normally as possible, which necessitates coordinated and multidisciplinary support that allows them to be at home rather than in a hospital. Advancements in technology have the potential to support home-based care, yet little is known about children's own communication needs, their views on home-based care and the possibilities of technology to support communication. Previous research has primarily focused on the views of parents and healthcare professionals. Consequently, this study aimed to explore what children with life-limiting or life-threatening conditions find important in communication with healthcare professionals and others and the role of technology in daily life.
METHODS: This qualitative study employed an exploratory design and used individual semi-structured interviews with children eligible for paediatric palliative care. Seven children aged 8-15 years with life-threatening or life-limiting conditions participated. The data were analysed using reflexive thematic analysis.
RESULTS: Three themes were developed: (1) understanding technology through daily life rather than in the frame of healthcare, (2) technology has the potential to be a digital bridge to normalcy and social belonging and (3) seeking information and safety through in-person meetings.
CONCLUSION: Children with life-limiting or life-threatening conditions place a high value on in-person communication with healthcare professionals, emphasising the need for safety, predictability and clear information, particularly when medical procedures are involved. The findings highlight gaps in children's involvement in decision-making and underscore the importance of including children's perspectives when developing communication strategies and technologies to support home-based paediatric palliative care. These children primarily associated technology with gaming and everyday social interactions. They had little experience with technology in their healthcare follow-up and were unfamiliar with possibilities for use in the context of communication with healthcare professionals.
METHODS: This qualitative study employed an exploratory design and used individual semi-structured interviews with children eligible for paediatric palliative care. Seven children aged 8-15 years with life-threatening or life-limiting conditions participated. The data were analysed using reflexive thematic analysis.
RESULTS: Three themes were developed: (1) understanding technology through daily life rather than in the frame of healthcare, (2) technology has the potential to be a digital bridge to normalcy and social belonging and (3) seeking information and safety through in-person meetings.
CONCLUSION: Children with life-limiting or life-threatening conditions place a high value on in-person communication with healthcare professionals, emphasising the need for safety, predictability and clear information, particularly when medical procedures are involved. The findings highlight gaps in children's involvement in decision-making and underscore the importance of including children's perspectives when developing communication strategies and technologies to support home-based paediatric palliative care. These children primarily associated technology with gaming and everyday social interactions. They had little experience with technology in their healthcare follow-up and were unfamiliar with possibilities for use in the context of communication with healthcare professionals.