The impact of medical technology upon the home and feelings of at-homeness for children and young people with complex health care needs and their family members

Abstract

Background: The needs of technology-dependent children and young people with complex health care needs are complex and challenging. Although the home is generally the preferred and expected place of care, little is known about how the medical technology impacts the home and life at home for different members of a family.

Aim: To explore how medical technology impacts upon the home and life at home for children and young people with complex health care needs and their family members.

Methods: A qualitative study using face-to-face and telephone semi-structured or auto-driven photo-elicitation interview methods with a purposive sample of technology-dependent children aged 5-25 years and/or their family members. The interview transcripts were analysed interpretatively using thematic analysis.

Findings: Three themes were identified from the data: 1) Altered Physicality, Feeling and Meaning of Home, 2) The Presence of Carers in the Home, and 3) Home is not Home without their Child. The home and feelings of at-homeness were altered by living with technology. Families had little or no choice but to accept the extensions, adaptations and technology that altered the look, sound, feel and function of their home, and were not always involved in the extension and adaptation processes. The intrusion of paid carers and sounds from the technology and always being on call for their child created challenges for their home being a place of rest, relaxation and regeneration. Although the adaptations and technology often kept the children out of hospital and supported the families to live at home together, they also created barriers for leaving the home and for accessing other people’s houses.

Conclusion: Families felt that the negative impacts of medical technology upon the home and life at home were worth it because their home was not home and their family was not complete without their child.

Ethical Considerations: Ethics approval was granted by the Edge Hill University Faculty of Health, Social Care and Medicine Research Ethics Committee.

Key Words: Children, medically fragile; Young Person; Young Adult; Complex Health Care Needs; Family; Medical Homes; At-homeness; Therapeutics; Equipment and Supplies; Biomedical Technology.

Date of Award	19 Nov 2020
Original language	English
Awarding Institution	Edge Hill University
Supervisor	BERNIE CARTER (Director of Studies), LUCY BRAY (Supervisor), LUCY BLAKE (Supervisor) & Annette Dickinson (Supervisor)