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Daily Care Concerns Among Mothers of Children With Developmental and Epileptic Encephalopathies: A Qualitative Study
María Salcedo-Perez-Juana1, Lidiane Lima Florencio2, Ana San-Martín-Gómez1
1Research Group of Humanities and Qualitative Research in Health Science (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Madrid, Spain.
Insights
Mothers of children with Developmental and Epileptic Encephalopathies (DEE) face significant daily care challenges impacting their emotional well-being and family life. Understanding these burdens is crucial for comprehensive pediatric care.
Area of Science:
- Pediatric Neurology
- Rare Childhood Diseases
- Maternal Health
Background:
- Developmental and Epileptic Encephalopathies (DEE) are severe childhood disorders characterized by refractory epilepsy, intellectual disability, and developmental impairment.
- Caregiving for children with DEE imposes a substantial physical, emotional, social, and professional burden, primarily on mothers.
- Specific DEE types studied include STXBP1, tuberous sclerosis complex (TSC), and SYNGAP1 encephalopathies.
Purpose of the Study:
- To describe the daily care concerns and experiences of mothers raising children with STXBP1, TSC, and SYNGAP1 encephalopathies.
- To explore the multifaceted impact of caregiving on maternal well-being, roles, and family dynamics.
- To inform healthcare professionals about the lived experiences of mothers managing DEE.
Main Methods:
- A qualitative descriptive study design was employed.
- Purposeful sampling recruited 21 mothers of children diagnosed with STXBP1, TSC, or SYNGAP1 encephalopathies.
- Data were collected through in-depth interviews and researcher's field notes, followed by thematic analysis.
Main Results:
- Four major themes emerged: daily caregiving challenges, emotional well-being (expectations, concerns, feelings), impact on maternal roles (mother, employee, friend), and effects on couple dynamics and family planning.
- Participants reported significant stress, exhaustion, and reduced quality of life due to caregiving demands.
- Caregiving responsibilities influenced relationships, leading to role adjustments and potential conflicts.
Conclusions:
- The study highlights the profound and often overwhelming burden experienced by mothers of children with DEE.
- Managing seizures, physical needs, emotional distress, and work-life balance are key challenges.
- Paediatric professionals must consider these daily care and family aspects for effective treatment and support.
Background:
Developmental and Epileptic Encephalopathies (DEE) are a group of rare childhood diseases, which present severe and refractory epilepsy, intellectual disability and developmental impairment. The care of these children involves a high burden of care (mostly assumed by mothers), with a physical, emotional, social and professional impact. The aim of this study was to describe the experiences of daily care concerns in mothers of children with STXBP1, tuberous sclerosis complex (TSC) and SYNGAP1 encephalopathies.
Methods:
A qualitative descriptive study was conducted. Participants were recruited using purposeful sampling. The inclusion criteria consisted of female parents who had children with STXBP1, TSC and SYNGAP1 encephalopathies. In-depth interviews and researcher's field notes were used to collect data. A thematic analysis was performed on the data.
Results:
Twenty-one women were included (mean age 39.62 years). Four main themes were identified: (1) daily caregiving, describing the first years of living with the disease, daily care and the challenges faced; (2) emotional wellbeing, describing expectations and concerns and the emotions and feelings that emerged; (3) the role as a mother, employee and friend, describing the impact of caregiving on these roles; and (4) the couple and motherhood, describing the impact of caregiving on their life as a couple and on family planning.
Discussion:
The substantial burden on parents of children with DEE often results in stress, exhaustion and reduced quality of life. Challenges include managing seizures, physical demands, emotional struggles and disrupted work and social roles. These factors can strain relationships, and caregiving responsibilities often lead to conflict or role adjustments.
Conclusions:
This paper describes relevant daily care and family (couple) aspects that paediatric professionals should consider when providing treatment for children with developmental and epileptic encephalopathies.
