Exploring the needs and challenges of parents and their children in childhood epilepsy care: A qualitative study

Wo, Su Woan; Ong, Lai Choo; Low, Wah Yun; Lai, Pauline Siew Mei

doi:10.1016/j.yebeh.2018.09.018

Cited by 33 publications

(69 citation statements)

References 73 publications

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“…Children with chronic illness not having achieved self‐efficacy and emotional wellbeing may regress behaviorally, such as not being able to be alone or sleep alone, thumb sucking and needing a security blanket . Youth with high levels of self‐esteem, resilience, self‐efficacy, and emotional wellbeing demonstrate a determination to overcome challenges in the face of adversity and attain personal goals …”

Section: Resultsmentioning

confidence: 99%

“…Concepts, such as family and social connectedness, safe, stable and nurturing relationships, hope, and positive body‐image are well described in the literature as the antecedents necessary for emotional wellbeing in youth. The attributes of resilience, positive self‐esteem, and positive emotions are also well described, as are the associated consequences of self‐actualization, self‐efficacy, the absence of high‐risk behaviors, and the presence of health promotion behaviors . The literature also reflects the clear and direct relationship between body image and self‐esteem, as well as the strong correlation between SSNRs and resilience—a critical element to emotional wellbeing in youth …”

Section: Discussionmentioning

confidence: 99%

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Emotional wellbeing in youth: A concept analysis

2019

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Aim: The aim of this concept analysis is to report a synthesis of the extant literature and define emotional wellbeing in youth as a concept of emerging importance.Background: Emotional wellbeing is a national research priority in the United States.It is not well defined nor understood in the context of its ontology, mechanisms, biomarkers, or promotion. As a result, interventional research cannot be adequately informed.Design: A comprehensive review of the literature was conducted to inform the sample. Data Source: The scientific databases PubMed, Cochrane Library, Ovid Medline, PsycINFO, NCBI, Allied and Complementary Medicine, EMBASE, EBSCO, JAMAevidence, CINAHL, Joanna Briggs Institute, and Reporter were queried. Review Methods: The Walker and Avant method was utilized to analyze the resultant sample for common themes of antecedents, attributes, and consequences of emotional wellbeing. Results: Seventeen scientific research studies were included in the final sample. Conclusion: Attributes of emotional wellbeing in youth include overall positive emotions, positive self-esteem, and resilience. Antecedents are safe and stable nurturing relationships; family and social connectedness, hope, and positive bodyimage. The consequences of emotional wellbeing in youth include self-efficacy, selfactualization, the presence of positive health behaviors, and the absence of high-risk behaviors.

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Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Emotional wellbeing in youth: A concept analysis

2019

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“…Multiple studies have highlighted the need for sensitization programs for better management of seizures at home 25–27. These sensitization programs need not be at community level but doctors can create awareness even at the hospital by educating family members about epilepsy, addressing their myths and misconceptions that would also improve treatment adherence and compliance.…”

Section: Discussionmentioning

confidence: 99%

“…At the end of the current study, a guideline was prepared that was developed from an ethno-centric perspective that takes into consideration the personal and social experience of illness and states that cross-cultural differences between health-care providers and clients can affect therapeutic relationships 27,30,31. One of the studies states that clinicians need to negotiate between various models of illness as it affects the treatment seeking behavior of clients and their family members and is an important step in involving client and family members in treatment, promoting compliance, evaluating treatment outcomes, and reducing their dissatisfaction 32…”

Section: Discussionmentioning

confidence: 99%

Parental Knoweldge, Attitude, and Perception about Epilepsy and Sociocultural Barriers to Treatment

Rani¹,

Thomas²

2019

J Epilepsy Res

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The present study focused on assessing parental knowledge, attitudes, and perceptions about epilepsy as well as addressing the socio-cultural barriers to its treatment. Methods: Data were collected from outpatient consultations in the neurology department of a tertiary referral center in South India. Parents of sixty children suffering from epilepsy in the age-group of 4-15 years were interviewed to explore their knowledge, attitudes, and perceptions about epilepsy. They were recruited in 2015 over a consecutive period of six months. The tools administered were: socio-demographic schedule; clinical profile; a knowledge, attitude, and perception questionnaire prepared by the researcher; and a few case studies with psychosocial interventions. Results: The mean age of the parents who brought their children to the hospital was 37.2 years, with 71.7% being male, of which, 36% were educated up to secondary/intermediate level and were of lower socioeconomic status. The mean age of the children with epilepsy was 8.4 years with 66.7% of them being male. Among them, 50% had the most commonly occurring generalized seizures and 26.7% had the co-morbid condition of cerebral palsy. Around 37.7% parents attributed the seizures to evil spirits or supernatural powers, 52.5% to mental illness, and 72.1% were influenced by their families to initially seek religio-spiritual or traditional treatment in desperation for a cure of the illness. In total, 91.8% of the parents visited holy places, made "mannats", or prayed in worship for hours for their child's recovery.

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“…It is, however, difficult for children to explain how their long-term disease makes them feel [ 24 ] and to accept and manage the consequences and lifestyle related to their long-term disease [ 17 ]. It is thus essential to include children in their own health care and support them in their self-management responsibility in order to improve their wellbeing and reduce fear and anxiety [ 25 ] as well as to strengthen their self-confidence and independence [ 17 , 18 , 26 ]. Even if children’s participation is considered an essential part in health care, there is still a number of barriers to overcome in relation to health care professionals’ attitudes and viewpoints [ 27 ].…”

Section: Introductionmentioning

confidence: 99%

Impact of an Electronic Health Service on Child Participation in Pediatric Oncology Care: Quasiexperimental Study

Gilljam¹,

Nygren²,

Svedberg³

et al. 2020

J Med Internet Res

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Background For children 6-12 years old, there is a shortage of electronic Health (eHealth) services that promote their participation in health care. Therefore, a digital communication tool, called Sisom, was developed to give children a voice in their health care. Children with long-term diseases want to be more involved in their health care and have the right to receive information, be listened to, express their opinions, and participate in decision making in health care. However, the outcomes of using Sisom in practice at pediatric oncology clinics have not been investigated. Objective The aim of this study was to investigate children’s participation during appointments with pediatricians at pediatric oncology clinics, with or without the use of the eHealth service Sisom. Methods A quasiexperimental design with mixed methods was used. We analyzed 27 filmed appointments with pediatricians for 14 children (8 girls and 6 boys) aged 6-12 years (mean 8.3 years) with a cancer diagnosis. The intervention group consisted of children who used Sisom prior to their appointments with pediatricians at a pediatric oncology clinic, and the control group consisted of children who had appointments with pediatricians at 4 pediatric oncology clinics. Data from observations from the videos were quantitatively and qualitatively analyzed. The quantitative analysis included manual calculations of how many times the pediatricians spoke directly to the children, the proportion of the appointment time that the children were talking, and levels of participation by the children. For the qualitative analysis, we used directed content analysis to analyze the children’s levels of participation guided by a framework based on Shier’s model of participation. Results Pediatricians directed a greater proportion of their discussion toward the child in the intervention group (731 occasions) than in the control group (624 occasions), but the proportion of the appointment time the children talked was almost the same for both the intervention and control groups (mean 17.0 minutes vs 17.6 minutes). The levels of participation corresponded to the first three levels of Shier’s participation model: children were listened to, children were supported to express their views, and children’s views were taken into account. The results showed an increased level of participation by the children in the intervention group. Several codes that were found did not fit into any of the existing categories, and a new category was thus formed: children received information. Conclusions This study shows that the eHealth service Sisom can increase children’s participation during appointments with health care professionals. Further studies employing a randomized control design focusing on the effects of eHealth services on children’s health outcomes, perceived participation, and cost-effectiveness could make a significant contribution to guiding the implementation of eHealth services in pediatric care.

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Exploring the needs and challenges of parents and their children in childhood epilepsy care: A qualitative study

Cited by 33 publications

References 73 publications

Emotional wellbeing in youth: A concept analysis

Emotional wellbeing in youth: A concept analysis

Parental Knoweldge, Attitude, and Perception about Epilepsy and Sociocultural Barriers to Treatment

Impact of an Electronic Health Service on Child Participation in Pediatric Oncology Care: Quasiexperimental Study

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