Dataset Information

Children's understanding of epilepsy: A qualitative study.

ABSTRACT:

Purpose

To use a qualitative research approach to determine children's understandings of epilepsy and their epilepsy treatment.

Methods

Children aged 7-16 years with physician-confirmed active epilepsy (i.e., having had an epileptic seizure in the past year and or currently taking antiepileptic drugs (AEDs), and not known to have an intellectual disability, were invited to participate. Children had semi-structured interviews separately on two occasions. Between the first and second interviews, an observation of a routine epilepsy clinic appointment of individual children was conducted, and was then discussed during the second interview. Participatory research tools were used in both child interviews to facilitate discussions. Interviews were audio recorded and transcribed, pseudonymized and entered into NVivo (version 12, QSR International). Data were analyzed using a thematic approach.

Results

Twenty-three children of mean age 10.1 years (range 8-14), mean duration of epilepsy of 4.6 years (range 2-10) were enrolled. Twelve were 12 female; 7 had focal, 14 had generalized, and 2 had combined epilepsy; 20 were on monotherapy; and 16 had tried previous AEDs. All had an initial (first) interview; 20 were observed during a clinic appointment and had a second interview. Five broad themes emerged: understanding of epilepsy; understanding of seizures; understanding of medication; understanding of children's role in clinical appointments; influences on children's understanding. Children spoke about what epilepsy meant by describing the physical sensations of having a seizure or through the act of taking medication. Children described the role they had, or felt they should have, but reported challenges in being meaningfully involved in clinical appointments. While healthcare professionals were initial information nodes, epilepsy information from parents appeared to be more significant for children.

Conclusions

The perspectives of children with epilepsy are valuable for clinicians to understand; assumptions should not be made that children's views can be accessed via parents. Clinicians need to be constantly aware of children's views and ways of understanding and communicating about their epilepsy. To support this, the research - drawing on children's words, meanings, and stories - was used to inform an easily accessible, gender-neutral, animation about epilepsy that provides information about the condition, seizures, and medication (https://youtu.be/MO7xXL2ZXP8).

SUBMITTER: Harden J

PROVIDER: S-EPMC8259124 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundTransition from children's to adult epilepsy services is known to be challenging. Some young people partially or completely disengage from contact with services, thereby risking their health and wellbeing. We conducted a mixed-method systematic review that showed current epilepsy transition models enabling information exchange and developing self-care skills were not working well. We used synthesised evidence to develop a theoretical framework to inform this qualitative study. The aim was to address a critical research gap by exploring communication, information needs, and experiences of knowledge exchange in clinical settings by young people and their parents, during transition from children's to adult epilepsy services.MethodQualitative comparative embedded Case study with 2 'transition' cases (epilepsy services) in two hospitals. Fifty-eight participants: 30 young people (13-19 years) and 28 parents were interviewed in-depth (individual or focus group). Clinical documents/guidelines were collated. 'Framework' thematic analysis was used. The theoretical framework was tested using themes, pattern matching and replication logic. Theory-based evaluation methods were used to understand how and why different models of service delivery worked.ResultsA joint epilepsy clinic for young people 14-17 years coordinated by children's and adult services was more likely to influence young people's behaviour by facilitating more positive engagement with adult healthcare professionals and retention of epilepsy-related self-care information. Critical success factors were continuity of care, on-going and consistent age-appropriate and person centred communication and repeated information exchange. Three young people who experienced a single handover clinic disengaged from services. Psychosocial care was generally inadequate and healthcare professionals lacked awareness of memory impairment. Parents lacked knowledge, skills and support to enable their child to independently self-care. Translation of transition policies/guidelines into practice was weak.ConclusionFindings make a significant contribution to understanding why young people disengage from epilepsy services, why some parents prevent independent self-care, and what constitutes good communication and transition from the perspective of young people and parents. The type of service configuration, delivery and organisation influenced the behaviours of young people at transition to adult services. The novel theoretical framework was substantially supported, underwent further post-hoc development and can be used in future practice/intervention development and research.

Project description:PurposeGender-based perceptions about maternal health care during pregnancy draw attention to the existence of gender inequity in maternal health care. This study aimed to understand the gender-based perception of gender roles and norms, gender relations, social support, and psychosocial variation in maternal health care during pregnancy.MethodsA qualitative study was conducted in three rural districts of Jimma, Ethiopia. Participants were purposefully chosen from the community groups, including male and female health development armies, religious leaders, health extension workers, midwifery nurses, and primary health care unit directors. The data was gathered through in-depth interviews and focus group discussions. The actual data was collected by men and women qualitative study experts. Atlas ti Ver 9 was used for the analysis. The data was initially coded then changed to a sub-category and at last converted to a category.ResultsFour categories emerged: Gender-based roles and norms, psychosocial variation, social support, and gender relations. The informants described men's and women's independent and shared roles improve maternal health care service usage during pregnancy. Once the women became pregnant, men undertook a variety of demanding duties to enhance maternity service consumption. Gender relations and shared decision-making were essential in facilitating maternal healthcare utilization during pregnancy and beyond.ConclusionThis study revealed that maternal health care should not be limited to women alone. Men's and women's prior maternal health experiences, in addition to their knowledge and beliefs, have significantly impacted the utilization of maternal healthcare services during pregnancy. Policymakers and academics should consider men's essential contribution to maternal health care during pregnancy. However, in order to increase their intention to use maternal health care services, it is necessary to clearly identify the interests of women in which men should be involved.

Project description:OBJECTIVES:Non-communicable diseases account for 50% of all deaths in Nepal and 25% result from cardiovascular diseases. Previous studies in Nepal indicate a high burden of behavioural cardiovascular risk factors, suggesting a low level of knowledge, attitude and practice/behaviour regarding cardiovascular health. The behavioural foundation for a healthy lifestyle begins in early childhood, when mothers play a key role in their children's lives. This qualitative study, conducted in a Nepalese peri-urban community, aimed to explore mothers' perception of their children's diet and physical activity. DESIGN:We notated, tape-recorded and transcribed all data collected from six focus group discussions, and used qualitative content analysis for evaluation and interpretation. SETTING:The study was conducted in the Jhaukhel-Duwakot Health Demographic Surveillance Site in the Bhaktapur district of Nepal. PARTICIPANTS:Local health workers helped recruit 61 women with children aged 5-10?years. We distributed participants among six different groups according to educational status. RESULTS:Although participants understood the importance of healthy food, they misunderstood its composition, perceiving it as unappetising and appropriate only for sick people. Furthermore, participants did not prioritise their children's physical activities. Moreover, mothers believed they had limited control over their children's dietary habits and physical activity. Finally, they opined that health educational programmes would help mothers and recommended various intervention strategies to increase knowledge regarding a healthy lifestyle. CONCLUSIONS:Our data reveal that mothers of young children in a peri-urban community of Nepal lack adequate and accurate understanding about the impact of a healthy diet and physical activity. Therefore, to prevent future cardiovascular disease and other non-communicable diseases among children, Nepal needs health education programmes to improve mothers' cardiovascular health knowledge, attitude and behaviour.