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Information to Parents of Children With Cancer. An Exploratory Study

18 Years
Open (Enrolling)
Stress, Health Knowledge, Attitudes, Practice

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Trial Information

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.


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.

Inclusion Criteria:

- Being a parent of a child that

1. is diagnosed with a first occurrence of a malignancy that is curatively treated

2. was diagnosed two months ago

- Able to talk, read and write Swedish enough to be able to participate without an

- Have access to a computer and an internet connection.

Type of Study:


Study Design:

Endpoint Classification: Efficacy Study, Intervention Model: Single Group Assignment, Masking: Open Label, Primary Purpose: Supportive Care

Outcome Measure:

Perceived stress

Outcome Description:

As measured by the Perceived stress scale (PSS). 10 items answered on a 5-point Likert scale.

Outcome Time Frame:

Changes during baseline and intervention period (measured twice a week for a total of 11 weeks).

Safety Issue:


Principal Investigator

Ulla Hällgren Graneheim, Associate professor

Investigator Role:

Study Director

Investigator Affiliation:

Umeå University


Sweden: Regional Ethical Review Board

Study ID:




Start Date:

February 2012

Completion Date:

August 2013

Related Keywords:

  • Stress
  • Health Knowledge, Attitudes, Practice
  • patient education as topic
  • representational approach
  • parents
  • childhood cancer
  • paediatric oncology
  • nursing
  • parents of children with cancer
  • Stress
  • Health Knowledge
  • Attitudes
  • Practice