Caring for Children with Dravet Syndrome
Exploring the Daily Challenges of Family Caregivers
Bibliographic Data
| ID | 15713296 |
|---|---|
| Authors | Jan Domaradzki (0000-0002-9710-832X, Poznan University of Medical Sciences, corresponding author), Dariusz Walkowiak (0000-0001-8874-2401, Poznan University of Medical Sciences) |
| Year | 2023 |
| Volume | 10 |
| Issue | 8 |
| Pages | 1410-1410 |
| Publication date | 2023-08-19 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Children (JOURNAL) |
| Journal identifiers | ISSN: 2227-9067 • E-ISSN: 2227-9067 |
| Publisher | Multidisciplinary Digital Publishing Institute (PUBLISHER • CH) |
| DOI | 10.3390/children10081410 |
| PMID | 37628409 |
| OpenAlex | W4386028563 |
| Language | EN |
| Citations received | 3 |
| References cited | 64 |
While Polish studies focus on the symptoms, causes and treatment of people suffering from Dravet syndrome (DS), much less is known about the situation of the family caregivers of DS children. This study was designed to explore the experiences, daily challenges and needs related to caring for DS children. An anonymous self-administered online questionnaire was developed. The survey was completed by 75 family caregivers affiliated with the Association for People with Severe Refractory Epilepsy DRAVET.PL on Facebook. Most caregivers felt burdened by their children's reduced mobility (57.3%), mood swings (57.3%), lack of access to rehabilitation and medicine (56%) and healthcare expenses (50.7%). Caregivers also complained of a lack of time to themselves (76%) and work restrictions resulting from caregiving (72%). They consequently reported experiencing fatigue (84%), a deterioration of mental health (60%) and intimacy problems with their spouse/partner (53.4%). An important source of strain was a prolonged diagnostic odyssey and the constant struggle over the healthcare services for DS children. Since DS caregivers' problems and needs are often overlooked, they may be described as the forgotten people in DS. Healthcare professionals should be educated about the challenges related to caring for DS child, psycho-social status and coping resources of DS caregivers, and should focus on identification, monitoring and supporting caregivers' physical and mental well-being and needs
Coping (psychology · Dravet syndrome · Epilepsy · Focus group · Health care · Mental health · Mood · Psychiatry · Spouse · Cystic Fibrosis Research Advances · Epilepsy research and treatment · Medicine · Metabolism and Genetic Disorders · Psychology
| Unique citing works | 3 |
|---|---|
| Citations per year | 1,5 |
| Citation span | 2024 - 2025 (2) |
| Citation velocity | recent |
| Highly cited | No |
| Citation types | Neutral: 3 |