Information to Parents of Children With Cancer. An Exploratory Study
Parents of children with cancer have great information needs and report that these are not
always met. Psychosocial suffering such as stress and anxiety is also common in this group.
An informational intervention emanating from the needs identified by parents is associated
to decreased perceived stress, decreased depressive symptoms, decreased anxiety, increased
satisfaction with information and decreased use of health care contacts in parents.
The intervention builds upon the Representational approach. This approach emanates from
Leventhal's theories of illness representations and theories of conceptual change. Central
qualities in the approach is that parents identify the area where information is needed
themselves and that a thorough assessment of their current representation of that area is
performed before information is given.
Each participating parent receives three rounds that consist of two meetings. Each round
starts with a meeting where the parent identifies an area where he/she needs more
information. The nurse and the parent jointly survey the parent's representation of the area
and discusses consequences of knowledge gaps or misunderstandings. Then, new information is
introduced and benefits from the new information is discussed. After some days, a follow-up
meeting takes place.
DESIGN AND METHODS
The intervention will be evaluated using a single-case design (A-B-A-B-A-B-A) with 10
parents. All parents will receive the intervention, and repeated measures of the outcome
variables both before and after will be used to assess the effect of the intervention. Data
will be collected by web questionnaires with SMS- and e-mail reminders.
In parallel, a process evaluation aiming at describing treatment fidelity, experiences of
participation and impact of contextual factors on the results. For this aim, qualitative
interviews with participants and audio recording of intervention sessions will be used.
Endpoint Classification: Efficacy Study, Intervention Model: Single Group Assignment, Masking: Open Label, Primary Purpose: Supportive Care
As measured by the Perceived stress scale (PSS). 10 items answered on a 5-point Likert scale.
Changes during baseline and intervention period (measured twice a week for a total of 11 weeks).
Ulla Hällgren Graneheim, Associate professor
Sweden: Regional Ethical Review Board