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García-Bravo, C., Martínez-Piédrola, R. M., García-Bravo, S., Rodríguez-Pérez, M. P., Martín-Gómez, A. S., Fernández-Gómez, G., y Palacios-Ceña, D.

Article title in Spanish

Vivir y controlar las convulsiones entre padres de niños diagnosticados con síndrome de Phelan-McDermid: un estudio cualitativo mediante entrevistas en profundidad

Article title in English

Living with and managing seizures among parents of children diagnosed with Phelan-McDermid syndrome: a qualitative study using in-depth interviews

Name of journal

European Journal Of Pediatrics

Year of publication

2023

Volume of the journal

183

Pages of the journal

253–262

Keywords

Phelan-McDermid syndrome, Telomeric 22q13 monosomy syndrome, Seizure, Parents, y qualitative research

DOI

10.1007/s00431-023- 05285-6

Summary in Spanish

Summary in English

To describe the experience of parents of children diagnosed with Phelan-McDermid syndrome (PMS) in relation to epileptic seizures and/or convulsions, their daily management and impact on family life. A qualitative descriptive study was conducted. The study included parents of children diagnosed with PMS by a medical specialist. Purposive sampling was used, and data were collected via in-depth interviews. A thematic analysis was performed on the data. This study was conducted according to the Standards for Reporting Qualitative Research. Thirty-two parents were recruited. Four themes were identified: (a) the first epileptic seizure, where the first seizure appears abruptly and unexpectedly; (b) living with seizures, seizures generate high concern about the evolution of the disease and the future of children with PMS; (c) treatment of epileptic seizures, obtaining an adequate treatment is a long process that involves decision making by parents; (d) the impact of epilepsy on the family, where there is a change in the functioning and relationships among family members. Conclusions: It is necessary to develop programs where parents can discuss treatment decisions with professionals and provide coping strategies for the management of epilepsy and seizures.

Bibliographic reference

García-Bravo, C., Martínez-Piédrola, R.M., García-Bravo, S. et al. Living with and managing seizures among parents of children diagnosed with Phelan-McDermid syndrome: a qualitative study using in-depth interviews. Eur J Pediatr 183, 253–262 (2024).


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Contact Author
Open URL Article

Author´s name

García-Bravo, C., Martínez-Piédrola, R. M., García-Bravo, S., Rodríguez-Pérez, M. P., Martín-Gómez, A. S., Fernández-Gómez, G., y Palacios-Ceña, D.

Article title in Spanish

Vivir y controlar las convulsiones entre padres de niños diagnosticados con síndrome de Phelan-McDermid: un estudio cualitativo mediante entrevistas en profundidad

Article title in English

Living with and managing seizures among parents of children diagnosed with Phelan-McDermid syndrome: a qualitative study using in-depth interviews

Name of journal

European Journal Of Pediatrics

Year of publication

2023

Volume of the journal

183

Pages of the journal

253–262

Keywords

Phelan-McDermid syndrome, Telomeric 22q13 monosomy syndrome, Seizure, Parents, y qualitative research

DOI

10.1007/s00431-023- 05285-6

Summary in Spanish

Summary in English

To describe the experience of parents of children diagnosed with Phelan-McDermid syndrome (PMS) in relation to epileptic seizures and/or convulsions, their daily management and impact on family life. A qualitative descriptive study was conducted. The study included parents of children diagnosed with PMS by a medical specialist. Purposive sampling was used, and data were collected via in-depth interviews. A thematic analysis was performed on the data. This study was conducted according to the Standards for Reporting Qualitative Research. Thirty-two parents were recruited. Four themes were identified: (a) the first epileptic seizure, where the first seizure appears abruptly and unexpectedly; (b) living with seizures, seizures generate high concern about the evolution of the disease and the future of children with PMS; (c) treatment of epileptic seizures, obtaining an adequate treatment is a long process that involves decision making by parents; (d) the impact of epilepsy on the family, where there is a change in the functioning and relationships among family members. Conclusions: It is necessary to develop programs where parents can discuss treatment decisions with professionals and provide coping strategies for the management of epilepsy and seizures.

Bibliographic reference

García-Bravo, C., Martínez-Piédrola, R.M., García-Bravo, S. et al. Living with and managing seizures among parents of children diagnosed with Phelan-McDermid syndrome: a qualitative study using in-depth interviews. Eur J Pediatr 183, 253–262 (2024).

Vivir y controlar las convulsiones entre padres de niños diagnosticados con síndrome de Phelan-McDermid: un estudio cualitativo mediante entrevistas en profundidad


Return List
Contact Author
Open URL Article

Author´s name

García-Bravo, C., Martínez-Piédrola, R. M., García-Bravo, S., Rodríguez-Pérez, M. P., Martín-Gómez, A. S., Fernández-Gómez, G., y Palacios-Ceña, D.

Article title in Spanish

Vivir y controlar las convulsiones entre padres de niños diagnosticados con síndrome de Phelan-McDermid: un estudio cualitativo mediante entrevistas en profundidad

Article title in English

Living with and managing seizures among parents of children diagnosed with Phelan-McDermid syndrome: a qualitative study using in-depth interviews

Name of journal

European Journal Of Pediatrics

Year of publication

2023

Volume of the journal

183

Pages of the journal

253–262

Keywords

Phelan-McDermid syndrome, Telomeric 22q13 monosomy syndrome, Seizure, Parents, y qualitative research

DOI

10.1007/s00431-023- 05285-6

Summary in Spanish

Summary in English

To describe the experience of parents of children diagnosed with Phelan-McDermid syndrome (PMS) in relation to epileptic seizures and/or convulsions, their daily management and impact on family life. A qualitative descriptive study was conducted. The study included parents of children diagnosed with PMS by a medical specialist. Purposive sampling was used, and data were collected via in-depth interviews. A thematic analysis was performed on the data. This study was conducted according to the Standards for Reporting Qualitative Research. Thirty-two parents were recruited. Four themes were identified: (a) the first epileptic seizure, where the first seizure appears abruptly and unexpectedly; (b) living with seizures, seizures generate high concern about the evolution of the disease and the future of children with PMS; (c) treatment of epileptic seizures, obtaining an adequate treatment is a long process that involves decision making by parents; (d) the impact of epilepsy on the family, where there is a change in the functioning and relationships among family members. Conclusions: It is necessary to develop programs where parents can discuss treatment decisions with professionals and provide coping strategies for the management of epilepsy and seizures.

Bibliographic reference

García-Bravo, C., Martínez-Piédrola, R.M., García-Bravo, S. et al. Living with and managing seizures among parents of children diagnosed with Phelan-McDermid syndrome: a qualitative study using in-depth interviews. Eur J Pediatr 183, 253–262 (2024).