Evidence map›Paper›PMID 41121411›Full record

ArticleOrphanet journal of rare diseases2025

"Just realising that I wasn't alone… was profound": a mixed-methods evaluation of a pilot peer-to-peer wellbeing program for carers of children with rare epilepsies.

Kristine Pierce, Jack Bernard Murphy, Eden G Robertson, Jahidur Rahman Khan, Susan Bullock, Cristol Barrett O'Loughlin, Megan Loden, Rebecca McIntosh, Erin Beavis, Natalie Roberts and 2 more

Abstract read
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In one paragraph

Article in Orphanet journal of rare diseases, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

12 authors.

Kristine PierceDiscipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, Sydney, NSW, Australia. kristine.pierce@unsw.edu.au.ORCID 0000-0003-2889-2381
Jack Bernard MurphyDiscipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, Sydney, NSW, Australia.
Eden G RobertsonDiscipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, Sydney, NSW, Australia.
Jahidur Rahman KhanDiscipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, Sydney, NSW, Australia.
Susan BullockDiscipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, Sydney, NSW, Australia.
Cristol Barrett O'LoughlinRaregivers Inc, Orange, CA, 92869, USA.
Megan LodenRaregivers Inc, Orange, CA, 92869, USA.
Rebecca McIntoshDiscipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, Sydney, NSW, Australia.
Erin BeavisDiscipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, Sydney, NSW, Australia.
Natalie RobertsDiscipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, Sydney, NSW, Australia.
Elizabeth Emma PalmerDiscipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, Sydney, NSW, Australia.
Raghu LingamDiscipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, Sydney, NSW, Australia.

Funding

Australian National Health and Medical Research Council 2021/GNT2008166
6 · The paper itself

Abstract

backgroundCaring for a child with a complex rare condition is widely acknowledged to have a significant impact on mental health and wellbeing. However, carers often report a lack of appropriate evidence- and strengths-based resources and services that can pre-emptively support their wellbeing. Rare epilepsies are a group of highly complex, typically childhood-onset conditions, characterised by unpredictable seizures, multi-morbidities, lack of targeted treatments, and reduced life expectancy and quality of life. We evaluated the acceptability, feasibility and early effectiveness of a 6-week online group wellness program for Australian carers of a child with rare epilepsy. We co-designed the evaluation with a multidisciplinary team with lived experience and expertise in consumer engagement, medicine, psychology, and implementation science.

methodsThe acceptability, feasibility and impact of the program on carers' self-reported wellbeing, self-efficacy and social inclusion was evaluated using a mixed-methods pilot study. The primary outcomes of acceptability and feasibility were assessed post-intervention using a survey measure with 15 purpose-designed items. Secondary outcomes including participant wellbeing, quality of life, and social inclusion were assessed using validated measures pre- and post-intervention. Semi-structured interviews with retreat participants explored in more depth the study's perceived strengths, limitations and value. Recordings were transcribed verbatim and analysed for emergent themes.

resultsTen participants completed both the pre- and post-intervention questionnaires, with six of these participants also completing an interview. The retreat was considered highly acceptable and feasible; nine out of ten participants rated the quality of the retreat as 'Excellent' and agreed that the sessions were relevant to their experience. There was provisional evidence of early effectiveness, with improvements in wellbeing, self-efficacy, and social inclusion over the course of the study. Qualitative interviews revealed that participants highly valued the retreat's flexible online delivery and practical nature, and the facilitator's authentic knowledge of the carer role.

conclusionThis pilot study supports the potential benefits of this flexible, online program on carer wellbeing and social inclusion. Larger controlled evaluations are needed to further investigate the program's impact over the short, medium and long-term, including potential enhancements to accommodate more diverse carers and in different settings.

Indexed as

CaregiversEpilepsyAdolescentAdultAustraliaChildChild, PreschoolFemaleHumansMaleMiddle AgedPeer GroupPilot ProjectsQuality of LifeCarersDevelopmental and epileptic encephalopathyRare diseaseRare epilepsySocial connectionStrengths-basedWellbeingWellness

Identifiers

PMID41121411
PMCPMC12538871

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.