Decision processes in the use of technological support for children and young people with life-limiting conditions

Background: Decisions about technological support for children with life-limiting
canditians are surrounded by uncertainty, and require families to weigh up complex
issues around quality and prolongation of life. The limited evidence suggests there is
inadequate information and support for decision-making, and potential for
misunderstanding between families and professionals.
Aim: To investigate parents' and young people's experiences of making decisions
about technological support, focusing on artificial nutrition and assisted ventilation.
Methods: A purposive sample of nineteen families of life-limited children and young
people (twenty-five parents and five young people) who had considered the use of
technological support was drawn from users of a children's hospice. In-depth
interviews were carried out with this sample and the data subject to thematic
analysis.
Findings: Parents and young people wish to make the right choices, and consider a
range of factors and information in an effort to become informed, even when there
is no perceived choice in decisions they make. Quality of life is identified as the key
decision factor, which as a fluid and evolving cancept underpins the process of
assessing a child's needs and considering the potential impact of a proposed
intervention. Wider features of the process also influence how families make
decisions, and the research proposes an ecalogical framework which distinguishes
between decision factors, used by families to cansider a proposed intervention;
decision features, unique to the patient population in this case life-limited children;
and process factors concerned with the wider context and health care environment.
Conclusions: Decision features, which include the evolving role of parents and young
people as decision makers, and process factors such as the role of professionals and
access to information for decision-making, can either enable or constrain families
during the decision process and influence both the perceived choice and the degree
of uncertainty they experience.