Hearing parents' voices: A priority-setting workshop to inform a suite of psychological resources for parents of children with rare genetic epilepsies

Nevin, S.; Wakefield, Claire E.; Marne, Fleur A Le; Macintosh, Rebecca; Beavis, Erin; Sachdev, Rani; Bye, Ann; Nunn, Kenn; Palmer, Elizabeth E.

doi:10.1016/j.pecinn.2021.100014

Cited by 4 publications

(3 citation statements)

References 40 publications

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“…According to the literature, parents of children W-SND have unique abilities and skills to help each other and to share and compare their experiences. Hence, they can provide support that cannot be given by others who lack practical experience in coping with PB ( Nevin et al, 2022 ).…”

Section: Discussionmentioning

confidence: 99%

“God gave you a special child because you are special”: difficulties, coping strategies, and parental burnout of Jewish mothers – a qualitative study

Findling,

Barnoy,

Itzhaki

2023

Front. Psychol.

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Background“Parental Burnout” is a specific syndrome resulting from an imbalance between continuous exposure to chronic parenting stress and available protective resources. Mothers of children with special needs have an increased risk of Parental Burnout due to dealing with various difficulties from carrying out long-term childcare.PurposeTo examine difficulties, coping strategies, and PB (risk factors and protective resources), among ultra-Orthodox and non-Orthodox Jewish mothers of children with special needs with high or low levels of Parental Burnout.MethodsA qualitative study. Twelve mothers of children with special needs identified with high or low Parental Burnout via a quantitative study were interviewed. The constant-comparative analysis method was used to analyze the findings.FindingsThree themes and twelve categories emerged: 1. Difficulties involved in motherhood with six categories: (a) caregiver burden, (b) task overload, (c) physical and mental self-neglect, (d) environmental, couple-hood, family and social neglect, (e) recognizing the gap between their child with special needs and other children of the same age, (f) the environment’s contradictory expectations from the mother; 2. Coping strategies with four categories: (a) practical, (b) spiritual, (c) social and (d) emotional; and 3. Parental Burnout, consequences and coping with two categories: (a) personal and environmental risk factors (e.g., fear of the future, difficulty in trusting others in taking care of their child), and (b) personal and environmental protective resources (e.g., sharing similar circumstances with other mothers, a belief in God).Conclusions and implicationsThe findings contribute to understanding the unique difficulties, coping strategies and differences in risk factors and protective resources of Parental Burnout among ultra-Orthodox and non-Orthodox Jewish mothers of children with special needs. In order to alleviate the difficulties experienced by mothers and thus also reduce Parental Burnout risk factors and provide effective protective resources, it is recommended to develop empirically based professional guidance for policymakers, child development specialists, nurses, physiotherapists, and informal caregivers.

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Section: Discussionmentioning

confidence: 99%

“God gave you a special child because you are special”: difficulties, coping strategies, and parental burnout of Jewish mothers – a qualitative study

Findling,

Barnoy,

Itzhaki

2023

Front. Psychol.

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“…Our preparatory research with parents who have a child with a genetic epilepsy led to the innovative design of GenE Compass 11 12 22. Our protocol has been designed by an MDT which involves a neurologist, a psychologist, a clinical nurse consultant, a genetic counsellor, two clinical geneticists, two behavioural scientists and two implementation scientists.…”

Section: Methods and Analysismentioning

confidence: 99%

“…In line with the 2020 Australian Government’s National Strategic Action Plan for Rare Disease3 and guided by feedback from families (through both preparatory research11 12 22 and our consumer reference group), we developed Genetic Epilepsy (GenE) Compass. GenE Compass aims to provide caregivers with greater access to relevant DEE information, promote family-centred care, improve partnerships between researchers and clinicians, and systematically build knowledge and expertise.…”

Section: Introductionmentioning

confidence: 99%

Acceptability and feasibility of an online information linker service for caregivers who have a child with genetic epilepsy: a mixed-method pilot study protocol

et al. 2022

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IntroductionDevelopmental and epileptic encephalopathies (DEEs) are rare epilepsy conditions that collectively impact 1 in 2000 children. They are highly genetically heterogeneous, resulting in significant barriers to accurate and adequate information for caregivers. This can lead to increased distress and dissatisfaction with the healthcare system. To address this gap, we developed ‘GenE Compass’ to provide caregivers with the highest-quality possible, understandable and relevant information in response to specific questions about their child’s DEE. Using a mixed-method design, we will now pilot GenE Compass to evaluate the acceptability to caregivers and clinicians, feasibility and impact to caregivers.Methods and analysisWe will recruit 88 caregivers (estimated final sample of 50 at follow-up) who have a child under 18 years of age with a suspected or confirmed DEE diagnosis. Following consent and a baseline questionnaire (questionnaire 1 (Q1)), participants will be able to submit questions to GenE Compass over a 3-month period. After 3 months, participants will complete a follow-up questionnaire (Q2) and an optional telephone interview to answer the research questions. Primary outcomes are acceptability of GenE Compass and feasibility of delivering the intervention (eg, cost of the intervention, number of questions submitted and time taken to respond to questions). Secondary outcomes include the impact of GenE Compass on caregivers’ quality of life, information searching behaviours, perceptions of their child’s illness and activation.Ethics and discussionThe study protocol (V.2, dated 16 September 2021) has been approved by the Sydney Children’s Hospitals Network Human Research Ethics Committee (ETH11277). The results will be disseminated in peer-reviewed journals and at scientific conferences. A lay summary will be disseminated to all participants.Trial registration numberACTRN12621001544864.

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Diagnosis, epilepsy treatment and supports for neurodevelopment in children with Dravet Syndrome: Caregiver reported experiences and needs

Soto Jansson,

Bjurulf,

Dellenmark Blom

et al. 2024

Epilepsy & Behavior

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Hearing parents' voices: A priority-setting workshop to inform a suite of psychological resources for parents of children with rare genetic epilepsies

Cited by 4 publications

References 40 publications

“God gave you a special child because you are special”: difficulties, coping strategies, and parental burnout of Jewish mothers – a qualitative study

“God gave you a special child because you are special”: difficulties, coping strategies, and parental burnout of Jewish mothers – a qualitative study

Acceptability and feasibility of an online information linker service for caregivers who have a child with genetic epilepsy: a mixed-method pilot study protocol

Diagnosis, epilepsy treatment and supports for neurodevelopment in children with Dravet Syndrome: Caregiver reported experiences and needs

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