Health Knowledge, Attitudes, Practice, Stress
Conditions
Brief summary
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.
Detailed description
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.
Interventions
BEHAVIORALRepresentational approach
Representational approach to patient education
Sponsors
University of Skövde
Umeå University
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Healthy volunteers
No
Inclusion criteria
Being a parent of a child that 1. is diagnosed with a first time occurrence of a malignancy that is curatively treated and 2. was diagnosed two months ago. Further parents must be 3. able to talk, read and write Swedish enough to be able to participate without an interpreter.
Exclusion criteria
* None specific.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Pediatric Inventory for Parents (compare the mean scoring) | baseline up to one year post intervention | An instrument with 42 items measuring both frequency and intensity of stressors related to having a chronically ill child. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Kowledge expectations of significant others and Received knowledge of significant others (compare the mean scorings) | baseline up to one year post intervention | Two instruments measuring 40 areas of knowledge with respect to expectations and fulfilment. |
| Anxiety and depression (compare the mean scoring) | baseline up to one year post intervention | Seven-point visual-digital scales. |
| Impact of Event Scale-Revised (compare the mean scoring) | baseline up to one year post intervention | 22 items measuring posttraumatic stress symptoms. |
| Number of health care contacts | baseline up to one year post intervention | — |
| Experiences with your Health Care Provider (compare the mean scoring) | baseline up to one year post intervention | 15 items measuring the caring relationship with a health care provider |
| Satisfaction with information (compare the mean scoring) | baseline up to one year post intervention | Seven-point visual-digital scales. |
Countries
Sweden
Outcome results
None listed