Information to Parents of Children With Cancer. An Exploratory Study

• Perceived stress [ Time Frame: Changes during baseline and intervention period (measured twice a week for a total of 11 weeks). ] [ Designated as safety issue: No ]
  As measured by the Perceived stress scale (PSS). 10 items answered on a 5-point Likert scale.
  
  

• Physical symptoms from stress [ Time Frame: Changes during baseline and intervention period (measured twice a week for a total of 11 weeks). ] [ Designated as safety issue: No ]
  Includes headache, sleep disturbances, palpitations, and heartburn, each measured on a 4-point scale.
  
  
• Anxiety [ Time Frame: Changes during baseline and intervention period (measured twice a week for a total of 11 weeks). ] [ Designated as safety issue: No ]
  Measured on a 7-point visual digital scale.
  
  
• Depressive symptoms [ Time Frame: Changes during baseline and intervention period (measured twice a week for a total of 11 weeks). ] [ Designated as safety issue: No ]
  Measured on a 7-point visual digital scale.
  
  
• Satisfaction with information [ Time Frame: Changes during baseline and intervention period (measured twice a week for a total of 11 weeks). ] [ Designated as safety issue: No ]
  Includes general satisfaction with the information from the health care professionals as well as information from the intervention nurses. Measured on a 7-point visual digital scale.
  
  
• Healthcare contacts [ Time Frame: Changes during baseline and intervention period (measured once a week for a total of 11 weeks). ] [ Designated as safety issue: No ]
  Number of contacts with the health care system concerning the ill child and the parent's own health problems.
  
  

BACKGROUND

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.

HYPOTHESIS

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.

INTERVENTION

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.