The experiences of caregivers of children with epilepsy: A meta-synthesis of qualitative research studies

Yu, Zhichao; Shao, Qinwen; Hou, Kunhua; Wang, Yanjie; Sun, Xianghong

doi:10.3389/fpsyt.2022.987892

Cited by 13 publications

(6 citation statements)

References 37 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Some of these rituals include herb steaming and using gonono (Black coloured insect) and plant mixtures [ 5 ]. This supports the idea that there is a need to provide informational support to family members and caregivers [ 6 ]. This information is expected to increase care ability, reduce burden, and increase knowledge as well as awareness toward epilepsy patient needs, care options, and risks.…”

Section: Introductionsupporting

confidence: 71%

Caregivers’ and Family Members’ Knowledge Attitudes and Practices (KAP) towards Epilepsy in Rural Limpopo and Mpumalanga, South Africa

Musekwa

Makhado

Maphula

2023

IJERPH

View full text Add to dashboard Cite

Epilepsy, a common neurological disease, has a significant impact on people living with epilepsy (PLWE), their caregivers, and their family members. Research has consistently shown that the quality of life of PLWE is low. To expand on this knowledge, a non-experimental quantitative survey study was conducted to explore the knowledge, attitudes, and practices (KAP) of caregivers and family members towards epilepsy and epilepsy-related seizures. The study sample consisted of 519 participants from two South African provinces (Limpopo and Mpumalanga), mostly aged 26–35 years. The study revealed that most respondents in Limpopo had no formal education, whereas in Mpumalanga, most had a secondary education. Most respondents (32.4%) reported always using a spoon to prevent tongue biting during seizures. However, 62.4% of respondents reported feeling unprepared to handle an epileptic seizure. Additionally, the majority (54.7%) showed a moderate level of knowledge about epilepsy. Many respondents had a negative attitude towards epilepsy, and there was uncertainty about proper practices during a seizure. In summary, the research highlights unsatisfactory knowledge and practices towards epilepsy and emphasizes the need for increased education and awareness among caregivers and family members. Significant educational investment is needed from medical services to improve epilepsy care, knowledge, and attitudes.

show abstract

Section: Introductionsupporting

confidence: 71%

Caregivers’ and Family Members’ Knowledge Attitudes and Practices (KAP) towards Epilepsy in Rural Limpopo and Mpumalanga, South Africa

Musekwa

Makhado

Maphula

2023

IJERPH

View full text Add to dashboard Cite

show abstract

“…A systematic review meta-synthesis by Zhichao et al [57] included 13 studies that explored the experiences and needs of caregivers of children with seizures. Over 50% of family members caring for children with seizures experience stigma, which negatively impacts caregivers' mental health, as indicated by shame, low self-esteem, anger, and disorder disclosure [58].…”

Section: Discussionmentioning

confidence: 99%

Factors associated with changes in the quality of life and family functioning scores of primary caregivers of children and young people with primary brain tumors in Karachi, Pakistan: a prospective cohort study

Zahid,

Enam,

Mårtensson

et al. 2024

BMC Pediatr

View full text Add to dashboard Cite

Background There are limited data available, particularly in low- and middle-income countries (LMICs), on the long-term quality of life (QoL) and family functioning of primary caregivers of children and young people (CYPs) affected by primary brain tumors (PBTs). This study aimed to assess the factors associated with the mean change in QoL and family functioning scores of primary caregivers of CYP patients with PBTs 12 months posttreatment. Methods This prospective cohort study enrolled CYPs aged 5–21 years with newly diagnosed PBTs and their primary caregivers. The study was carried out between November 2020 and July 2023. The primary caregivers of CYPs were recruited from two major tertiary care centers in Karachi, Pakistan. The primary caregivers QoL were assessed by the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. The assessment was undertaken by a psychologist at the time of diagnosis and 12 months posttreatment. The data were analyzed with STATA version 12. Results Forty-eight CYPs with newly diagnosed PBTs and their primary caregivers (46 mothers and 2 fathers) were enrolled. At 12 months posttreatment, 25 (52%) CYPs and their primary caregivers (mothers) were reassessed, and 23 (48%) were lost to follow-up. On multivariable analysis, a significant decrease in mothers’ mean 12-month posttreatment QoL and family functioning scores was associated with CYP having posttreatment seizures (beta= -10.2; 95% CI: -18.4 to -2.0) and with the financial burden associated with the CYP’s illness (beta= -0.3; 95% CI: -0.4 to -0.1). However, in those cases where CYP had higher posttreatment quality of life scores (beta = 0.4; 95% CI = 0.1, 0.6) and posttreatment higher verbal intelligence scores (beta = 0.1; 95% CI = 0.01, 0.3), the mothers’ QoL and family functioning scores were significantly greater. Conclusion We found a significant decrease in QoL of mothers who had a high financial burden and whose CYP had posttreatment seizures. However, those whose CYPs had higher posttreatment verbal intelligence scores and quality of life scores had significantly greater QoL scores. Identification of the factors that influence primary caregivers QoL has the potential to aid in the development of targeted strategies to alleviate stressors and improve the overall quality of life for primary caregivers and their children who are at high risk.

show abstract

“…To ensure the survival and well-being of patients, it is crucial to address these gaps by making training and information dissemination mandatory. [21][22][23] Participants highlighted that healthcare workers occasionally shared insights on epilepsy. Still, a more intentional effort is needed to empower families and caregivers of epileptic patients with proper knowledge.…”

Section: Discussionmentioning

confidence: 99%

It Goes Beyond Anxiety: Experiences of Family Members and Caregivers of Epilepsy Care and Support

Musekwa,

Makhado

2023

NDT

View full text Add to dashboard Cite

Purpose To investigate the knowledge of epilepsy care and the support given by professionals to assist family members and caregivers in providing good care to People Living with Epilepsy (PLWE). Patients and Methods In this case study, fifteen participants participated. Of these, eleven were parents, and four were siblings. Twelve of the participants were primary caregivers, and three were secondary caregivers. Data were collected via in-person semi-structured interviews and analysed via thematic analysis. Results From the study, two themes emerged: Participant experiences regarding epilepsy practices and knowledge regarding epilepsy. From these two themes, four subthemes emerged: Epileptic seizure practice and treatment, as well as epilepsy knowledge and counselling and support. Conclusion This study revealed that although family members and caregivers are essential in patient care, they need more support and care from health providers. The much-needed care and support would assist in alleviating some pressures on epilepsy patient care and increase care standards and quality of life for families and PLWE.

show abstract

The experiences of caregivers of children with epilepsy: A meta-synthesis of qualitative research studies

Cited by 13 publications

References 37 publications

Caregivers’ and Family Members’ Knowledge Attitudes and Practices (KAP) towards Epilepsy in Rural Limpopo and Mpumalanga, South Africa

Caregivers’ and Family Members’ Knowledge Attitudes and Practices (KAP) towards Epilepsy in Rural Limpopo and Mpumalanga, South Africa

Factors associated with changes in the quality of life and family functioning scores of primary caregivers of children and young people with primary brain tumors in Karachi, Pakistan: a prospective cohort study

It Goes Beyond Anxiety: Experiences of Family Members and Caregivers of Epilepsy Care and Support

Contact Info

Product

Resources

About