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Jang Y, Yi H, Maharjan R, Jeong M, Yoon Y. First report…
This study was approved by the University of NSW (UNSW) Sydney Human Research and Ethics Committee: number HC220624.
The Raregivers Wellness Retreat programme was initially designed by Raregivers Inc to support family members caring for a loved one impacted by a rare disease. It included three virtual sessions per week delivered over 6 weeks, focusing on guided exercises, sensory self-care experiences, and the Raregivers Emotional Journey Map. The program also incorporated Sustainable Carer Workshops, providing practical strategies for self-care and resilience. Participants engaged in group-based sessions via Zoom™, ensuring flexibility and accessibility. Each session was designed to last approximately 60 min, with additional resources and exercises provided for participants to complete at their own pace throughout the week. The program was free to participants, and each carer received a wellness kit containing educational and self-care materials to enhance their experience.
Adaptation of the program for the Australian context was led by consumer lead (KP) and Raregivers course coordinator (ML), who have lived experience caring for children with complex rare epilepsy syndromes. They co-designed the weekly program to ensure its relevance and acceptability for Australian participants. While the core structure of the program remained consistent with the original design, the adaptation integrated culturally and contextually relevant topics. The co-design process ensured that the program addressed the unique challenges faced by carers in Australia, enhancing its impact and resonance with participants. This iterative approach allowed sessions to evolve in response to participant needs, ensuring the program was both dynamic and participant-centred.
Carers were eligible to participate in the study if they had attended the retreat and met the following criteria: (i) were the primary carer of a child with a complex, rare epilepsy; (ii) were aged 18 years or older; (iii) were able to communicate in English; and (iv) had access to the internet and a computer. Carers were screened for psychological distress via the online expression of interest form, which incorporated a screening questionnaire with a validated Distress Thermometer (see Additional file 1) [14]. Because this was a pilot study, the Wellness Retreat was scoped to establish safety, feasibility, and acceptability. Individuals with high distress scores (≥ 9 on the Distress Thermometer) were therefore not included, as the program was designed as a strengths-based, preventative wellbeing initiative and was not equipped to provide acute psychological support. Eligible participants provided informed consent and were enrolled. Those screening with high distress were individually contacted by the research team, provided information on appropriate mental health services, and offered support to connect with these services if required.
Consent to participate in evaluation of the retreat was given electronically, and implied consent was received from participants who completed and submitted the baseline and follow-up questionnaires. Participants also gave verbal consent prior to starting the interviews.
Participants were recruited via the mailing lists and social media platforms (Twitter, Facebook, LinkedIn) of relevant not-for-profit and community organisations, including Genetic Epilepsy Team Australia (GETA), Epilepsy Foundation Australia, Rare Voices Australia, Genetic Alliance Australia, and Syndromes Without A Name Australia. These organisations shared the study advertisement, which included a link to the expression of interest form. Eligible carers received an email invitation to participate, which included a link to the study information sheet and consent form. A maximum of two follow-up attempts (email or telephone call, using contact details provided in the expression of interest form) were made to non-responders.
The acceptability, feasibility and impact of the Raregivers Wellness Retreat on carers’ self-reported wellbeing and social inclusion was evaluated using a mixed-methods pilot study. Participants completed a pre-intervention (upon enrolment, before their first session; see Additional file 2) and post-intervention (1 week after the final session; see Additional file 3) questionnaire, administered online via the Research Electronic Data Capture (REDCap) platform [15, 16]. Questionnaires were anticipated to take approximately 30 min to complete.
Following the program, participants were invited to one-on-one semi-structured interviews via Zoom™. These interviews were audio recorded, de-identified, and transcribed for analysis (see Additional file 4 for the interview guide).
The primary outcomes of acceptability and feasibility were assessed post-intervention using 15 purpose-designed items (see Additional file 3).
Secondary outcomes related to participant wellbeing, quality of life, social inclusion and the extent to which participants live consistently with their values (valuing) were assessed using validated scales at pre- and post-intervention (Table 1 and Additional files 2 and 3).
The 15-item PERMA Profiler questionnaire was utilised to assess wellbeing across five domains [17]. The full PERMA Profiler contains 23 items, however a shortened version with 15 items was used for this study.
The Social Inclusion Scale (SIS) assesses individuals’ self-perceived levels of social inclusion [18,19,20]. The overall SIS score was computed by summing all responses (which range from 16 to 64). This scale formulates three elements negatively and scores them in reverse order when calculating the overall score.
The Valuing Questionnaire was used to assess the extent to which participants lived consistently with their values [21]. The Progress subscale evaluates personal adherence to values, and the Obstruction subscale measures the extent of barriers hindering the pursuit of a valued life. The ratings for each subscale were aggregated.
The ASCOT-SCT4 [22] was used to assess carer experience and social care-related quality of life across 7 domains: (1) Occupation; (2) Control over daily life; (3) Self-care; (4) Personal safety; (5) Social participation; (6) Space and time to be yourself; (7) Feeling supported and encouraged.
At the conclusion of the program, participants were invited to participate in a one-on-one semi-structured interview that covered their overall impressions of the program, what they liked/disliked, challenges, feasibility and acceptability of the program as well as their wellbeing, self-efficacy and social connectedness. The interview guide (see Additional file 4) was developed by the multidisciplinary team which included an epilepsy nurse, genetic counsellor, psychologist, clinical geneticist, consumer engagement expert and implementation science experts.
Data was subjected to descriptive analysis by a statistician independent to the implementation team. Various descriptive statistics were computed, including count, mean, standard deviation, proportion, median, and range. We conducted a comparative analysis of various indicators at two time points, baseline and post-intervention, to examine the changes. Inferential testing for effect were not undertaken due to the small sample size.
For the PERMA profiler [17], the domain specific change was calculated by subtracting participants’ baseline scores from their follow-up scores for each domain. A positive change score indicates improved wellbeing over time, while a negative change score indicates reduced wellbeing over time. We report this data as frequencies of change.
The SIS domain-specific change was computed by subtracting baseline scores from follow-up scores for each domain. Positive change scores suggest greater and stronger sense of social inclusion over time, while negative change scores indicate weaker and lower inclusion.
The domain-specific change for Valuing was calculated by subtracting baseline scores from follow-up scores in each domain. A positive change score in the Progress domain indicates a higher degree of valued living over time, whereas a higher score in Obstruction reflects a lower level of valued living.
For each domain of the ASCOT-SCT4, we compared the pre- and post-intervention scores for each participant. A positive change was defined as one or more category shifts towards an ‘ideal state’, and a negative shift as one or more category shifts towards ‘high level needs’ from baseline to follow-up.
The responses to open ended questions and interviews were analysed using a thematic analysis approach to explore the common experiences of participating in the program and highlight the impact of the program, as well as any barriers and facilitators to implementation. All transcripts were coded and analysed in NVivo© Version 12. The analysis followed five key stages outlined by Braun et al. (2019) [23]: data familiarisation, generation of codes, searching for themes, grouping and reviewing themes, and defining and naming themes. The transcripts were first independently read and coded by two researchers (KP, JM). These initial codes were then reviewed and updated following a discussion with the research team (KP, JM, SB). After the initial coding process, themes were generated and discussed with the research team (KP, JM, EEP), including the relationships between themes, and revision and collapsing of overlapping themes.
The quantitative and qualitative data were integrated narratively at the interpretation and reporting level using a weaving approach [24]. The quantitative and qualitative findings are presented together on a theme-by-theme basis according to the outcomes.
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