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Distress in parents of children with first-onset steroid-sensitive nephrotic syndrome
Floor Veltkamp1,2, Hedy A van Oers2,3,4, Lorynn Teela2,3,4
1Department of Pediatric Nephrology, Emma Children's Hospital, Amsterdam University Medical Centers, Location University of Amsterdam, Meibergdreef 9, Amsterdam, The Netherlands.
Insights
Parents of children with newly diagnosed steroid-sensitive nephrotic syndrome (SSNS) experience similar distress levels to the general population but report more everyday problems. Early monitoring of parental distress and everyday issues is crucial for timely interventions in SSNS families.
Area of Science:
- Pediatric Nephrology
- Child Psychology
- Family Medicine
Background:
- Steroid-sensitive nephrotic syndrome (SSNS) presents a relapsing-remitting course, often causing significant stress for parents.
- Limited understanding exists regarding parental distress during the initial onset of SSNS.
- This study investigates parental distress and daily challenges in mothers and fathers of children newly diagnosed with SSNS.
Purpose of the Study:
- To describe parental distress and everyday problems experienced by mothers and fathers of children with newly diagnosed SSNS.
- To compare distress and problem levels with reference data from the general population.
- To identify factors associated with parental distress and everyday problems in SSNS.
Main Methods:
- The Distress Thermometer for Parents (DT-P) was utilized to assess parental distress and everyday problems across six domains (practical, social, emotional, physical, cognitive, parenting).
- Data were collected 4 weeks post-SSNS onset from parents participating in a randomized controlled trial of levamisole plus corticosteroids.
- Parental data were compared against reference data from the Dutch general population.
Main Results:
- No significant difference was found in clinically elevated distress between SSNS parents and reference parents.
- Fathers of children with SSNS reported significantly more emotional problems compared to reference fathers.
- Mothers of children with SSNS reported significantly more parenting problems than reference mothers.
- Lower parental age correlated with more practical problems, and having a daughter with SSNS was linked to higher distress scores.
Conclusions:
- Four weeks after diagnosis, SSNS parents exhibit distress levels comparable to the general population, but report a higher burden of everyday problems.
- The findings underscore the importance of monitoring parental distress and everyday challenges, even in the early stages of SSNS.
- Timely interventions informed by distress monitoring can help prevent the escalation of parental problems.
Background:
Steroid-sensitive nephrotic syndrome (SSNS) is associated with a relapsing-remitting course that can be stressful for parents. As little is known of parental distress at the first onset of SSNS, this study aims to describe parental distress and everyday problems in mothers and fathers of a child with newly diagnosed SSNS participating in a randomized controlled trial of levamisole added to corticosteroids.
Methods:
To assess distress, the Distress Thermometer for Parents (DT-P) was used, which includes questions on distress (thermometer score 0-10, ≥ 4 "clinical distress") and presence of everyday problems in six domains: practical, social, emotional, physical, cognitive, and parenting. The DT-P was completed 4 weeks after the onset of SSNS. Total sum and individual items of everyday problems were compared with reference data from mothers and fathers of the Dutch general population.
Results:
There was no difference in clinically elevated parental distress between SSNS mothers (n = 37) and fathers (n = 25) and reference parents. Compared to reference fathers, fathers of a child with SSNS scored significantly higher on emotional problems (P = 0.030), while mothers experienced more parenting problems (P = 0.002). Regression analyses showed that lower parental age and having a girl with SSNS were significantly associated with more practical problems and higher distress thermometer scores, respectively.
Conclusions:
Four weeks after onset, SSNS mothers and fathers experience equal distress as reference parents. However, both parents endorsed significantly more everyday problems. Therefore, monitoring parental distress, even in the first weeks of the disease, could contribute to timely interventions and prevent worsening of problems.
Clinical Trial Registry:
Dutch Trial Register ( https://onderzoekmetmensen.nl/en/trial/27331 ). A higher resolution version of the Graphical abstract is available as Supplementary information.
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