Background & Aims
Chronic postsurgical pain (CPSP) is defined as chronic pain that develops or increases after a surgical procedure. CPSP affects around 20% of pediatric patients (1,2). However, effective pain management remains poorly available for children and adolescents (3,4). Previous qualitative research has shown the various challenges a surgery creates for families, and has emphasized the need for perioperative psychosocial interventions (5). However, to date, preventive interventions to decrease the risk for CPSP have yielded mixed results (6–8). One potential reason is the still limited involvement of patients and parents in the process of intervention development (9).
This is the first part of a study to co-develop a preventive single-session intervention with former patients and their caregivers. Based on the results of focus groups, an intervention will be created and evaluated together with the participating families. The intervention will then be tested in a randomized controlled trial.
Methods
Two focus groups were conducted with former patients and their caregivers to develop the content of a preventive single-session intervention jointly. Adolescents who recently (i.e., in the 3-12 months prior) underwent planned orthopedic surgery and their primary caregivers were recruited from the University Children’s Hospital Zurich, using a search function in their medical records. Questions regarding their experiences (e.g. What was the most difficult part of the surgery?) were discussed with children and caregivers separately to avoid influencing each other’s responses. The discussions were audio recorded, transcribed, and coded using QCAmap (10), applying structural content analysis by Mayring (11). Participants’ key messages were reduced to major subjects combining identical and similar passages into major categories. The analysis was done by two raters independently, and disagreements were solved in consensus meetings including the project leader.
Results
Five adolescents (aged 14-16 years) took part in the focus group, 20% identified as female and 80% as male. The caregivers who took part were all mothers. Patients encountered various challenges before and after surgery. Specifically, noisy hospital rooms, lack of sleep and pain. When addressing their expectations, they expressed a desire for realistic preparations, more regulated procedures after surgery and more personal encounters with the nursing staff. In conversations they felt passed over and not taken seriously. They were open to a psychological intervention to help them deal with challenges around their surgery and inpatient stay.
The caregivers also considered a psychological intervention to be helpful. Their hospital-related difficulties were similar to those of their children (e.g. noisy rooms). They mainly suffered from seeing their child’s pain, being constantly available and thus reaching their limits, and not being appreciated in the hospital for their supporting role.
Conclusions
The results of the first focus group indicate a need for perioperative interventions and provide a meaningful basis for the development of such. There are both emotional and organizational challenges associated with surgery and inpatient hospital stays. Appropriate communication from all sides, realistic preparations and taking individuals seriously seem to be central points of reference.
The single-session intervention that will be developed in the next step will include the mentioned needs while trying to be time- and cost-efficient. Equipping patients with a range of coping tools to address a wide array of challenges throughout the process could be one potential intervention focus. For caregivers, provision of information and self-care may be important components.
Further research in collaboration with patients, caregivers and health care professionals is needed to develop efficient interventions and improve relevance, credibility, and accessibility.
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Presenting Author
Jana Hochreuter
Poster Authors
Jana Hochreuter
MSc
University Children's Hospital Zurich
Lead Author
Emil Kane Nissen
University of Basel, Basel, Switzerland
Lead Author
Cosima Locher
Department of Consultation-Liaison Psychiatry and Psychosomatic Medicine, University Hospital Zurich
Lead Author
Jessica L. Schleider
PhD
Department of Medical Social Sciences, Northwestern University, Chicago
Lead Author
Shannon Bhend
University Children's Hospital Zurich
Lead Author
Helen Koechlin
University of Zurich, Zurich, Switzerland
Lead Author
Topics
- Patient Engagement and Co-Creation in Research and Education