Parents' perspectives on dried blood spot self-sampling from children with epilepsy: A mixed-method study
Related Experiment Video
Updated: Dec 25, 2025
Dried Blood Spot Collection of Health Biomarkers to Maximize Participation in Population Studies
Published on: January 28, 2014
Camilla Linder1,2, Mirja Neideman3, Miguel Gambell-Barroso2
1Department of Laboratory Medicine, Division of Clinical Pharmacology, Karolinska Institutet, Stockholm, Sweden.
Insights
Parents can successfully collect dried blood spot samples for pediatric epilepsy drug monitoring at home. This method is feasible, desirable for most parents, and reduces everyday stress.
Area of Science:
- Pediatric Neurology
- Clinical Pharmacy
- Patient-Reported Outcomes
Background:
- Epilepsy in children frequently co-occurs with other diagnoses, necessitating regular drug monitoring.
- Traditional blood sampling methods can be challenging for children and their families.
- Dried blood spot (DBS) sampling offers a less invasive alternative for therapeutic drug monitoring.
Purpose of the Study:
- To explore parental perspectives on self-collecting dried blood spot samples from children with epilepsy.
- To identify factors influencing the success of home-based DBS sampling by parents.
- To assess the feasibility and desirability of at-home DBS sampling for pediatric epilepsy management.
Main Methods:
- A mixed-method approach combining questionnaires and semi-structured interviews.
- Parents (n=64) completed questionnaires after collecting a DBS sample.
- Parents (n=9) and nurses participated in thematic analysis of interviews.
Main Results:
- High success rate: 97% of parents successfully collected DBS samples.
- Parental satisfaction: 72% found the process easy, 80% desired home sampling.
- Key success factors included parental motivation, preparedness, and effective communication; risk factors involved fear and lack of preparation.
Conclusions:
- At-home voluntary self-sampling of dried blood spots is a feasible option for parents of children with epilepsy.
- This approach can potentially mitigate stress associated with traditional blood draws in daily life.
- Home-based DBS sampling demonstrates potential for improving the management of pediatric epilepsy through convenient drug monitoring.
Aim:
Children with epilepsy often have concomitant diagnoses. Dried blood spot samples for drug monitoring can be collected by parents at home as an alternative to traditional sampling. This mixed-method study aimed to understand the parents' perspectives on blood self-sampling from their children and to identify factors contributing to successful sampling.
Method:
Parents who had collected a sample from their child during a visit to the neuropediatric clinic were asked to fill in a questionnaire. To get in-depth information and individual perspectives, parents and nurses participated in semi-structured interviews and analysed with thematic analysis.
Results:
The results from questionnaires (n = 64) and interviews (n = 9) were interpreted together. Watching an instruction video and practical training contributed to successful sampling. 97% of the parents managed to collect a sample, 72% thought it was easy to perform, and 80% found self-sampling at home desirable. Factors for success were as follows: high motivation, prepared parents with pre-understanding, a pragmatic attitude, flexible education, effective communication and willingness to take on the role as a performer. Risk factors were as follows: conflict, fear, unprepared parents, confused or worried children.
Conclusion:
Voluntary self-sampling at home for parents of children with epilepsy is feasible and can reduce stress factors in everyday life.
More Related Videos
09:33Visualizing Field Data Collection Procedures of Exposure and Biomarker Assessments for the Household Air Pollution Intervention Network Trial in India
Published on: December 23, 2022
10:46Author Spotlight: Obtaining High-Quality CSF and Blood Samples for Epilepsy Biomarker Discovery
Published on: September 1, 2023