The aim of this project is to evaluate a person-centred informational intervention aimed at parents of children with cancer. The following hypotheses will be tested: an informational intervention emanating from the parents' self-identified needs is associated to decreased illness-related parenting stress, decreased post-traumatic stress symptoms, increased received knowledge, decreased anxiety, decreased depression, increased satisfaction with information, and decreased number of health care contacts in parents.
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. INTERVENTION The intervention in this study builds upon the representational approach for patient education. It emanates from Leventhal's theories about illness representation and educational theories about conceptual change. Central elements in the approach are parental choice of information topics of interest, and a thorough assessment of present parental knowledge before information is given. Each parent in the intervention arm gets four sessions with an intervention nurse. DESIGN AND METHODS The study comprises a multi-centre randomized controlled trial with two parallel arms with a 1:1 allocation ratio. One arm will receive the intervention and the other standard care according to local routines at each ward. The effect will be measured with validated instrument which are answered on a web platform. Complementary to the quantitative evaluation, we will perform a process evaluation aiming at understanding the change mechanisms, treatment fidelity, dose delivered, contextual factors of importance and how the intervention further could be optimized.
Study Type
INTERVENTIONAL
Allocation
RANDOMIZED
Purpose
SUPPORTIVE_CARE
Masking
NONE
Enrollment
32
Representational approach to patient education
Skåne University Hospital
Lund, Sweden
Umeå University Hospital
Umeå, Sweden
Pediatric Inventory for Parents (compare the mean scoring)
An instrument with 42 items measuring both frequency and intensity of stressors related to having a chronically ill child.
Time frame: baseline up to one year post intervention
Impact of Event Scale-Revised (compare the mean scoring)
22 items measuring posttraumatic stress symptoms.
Time frame: baseline up to one year post intervention
Kowledge expectations of significant others and Received knowledge of significant others (compare the mean scorings)
Two instruments measuring 40 areas of knowledge with respect to expectations and fulfilment.
Time frame: baseline up to one year post intervention
Anxiety and depression (compare the mean scoring)
Seven-point visual-digital scales.
Time frame: baseline up to one year post intervention
Satisfaction with information (compare the mean scoring)
Seven-point visual-digital scales.
Time frame: baseline up to one year post intervention
Number of health care contacts
Time frame: baseline up to one year post intervention
Experiences with your Health Care Provider (compare the mean scoring)
15 items measuring the caring relationship with a health care provider
Time frame: baseline up to one year post intervention
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