The Potential of the Transformative Storytelling Technique for supporting informal caregiver wellbeing

In una società in cui i progressi e le innovazioni si verificano quotidianamente, lo sviluppo di strumenti digitali per la salute mentale continua a ritmi quasi incontrollabili. Seguendo le tendenze nell'utilizzo dello storytelling in tutti i campi e riflettendo sulla mancanza di modelli di lavoro e strutture per l'applicazione dello storytelling nel supporto della salute mentale, la Transformative Storytelling Technique è progettata e sviluppata come parte di questo lavoro. Questa tecnica rappresenta una nuova categoria per la creazione di contenuti ibridi per guidare l'esperienza del pubblico, a partire dal caso dei caregiver informali. Lo scopo di questa dissertazione è introdurre ed esplorare la fattibilità di una nuova tecnica - Transformative Storytelling (TST) - nel supportare la salute mentale e il benessere dei caregiver informali con storie audio progettate. La tesi è presentata in quattro capitoli in linea con gli obiettivi e strutturata secondo le fasi di ricerca e sviluppo applicate nello sviluppo di questa nuova tecnica. In questo lavoro viene utilizzato il disegno del metodo misto, inclusa la revisione qualitativa dell'ambito nel primo studio, l'indagine narrativa utilizzando interviste semi-strutturate progettate seguendo le categorie di esplorazione TST a priori nel secondo studio e lo studio quantitativo pre-post interventistico combinato con il facciale monitoraggio dell'espressione nello studio pilota. La Transformative Storytelling Technique è dimostrata come un approccio metodologico e narrativo digitale potenzialmente di successo per strutturare, sintetizzare tematicamente le esperienze dei gruppi target e consegnarle attraverso la narrazione digitale. Questo potenziale è stato osservato nella valutazione pilota pre-post, in cui la tecnica ha dimostrato una significativa riduzione del carico soggettivo e un significativo aumento della felicità durante l'esposizione della storia TST. Nello Studio 1, vengono esplorati gli strumenti di salute mentale digitale esistenti per i caregiver informali, seguiti dallo Studio 2 in cui è stata discussa e proposta una potenziale soluzione di supporto. In linea con ciò, il lavoro continua con lo Studio 3 in cui la Transformative Storytelling Technique viene adattata dal Transformative Video Design e viene eseguita la dimostrazione metodologica. Successivamente, la valutazione pilota della tecnica menzionata nello Studio 4 è inclusa per testare la fattibilità dell'utilizzo della tecnica di narrazione per supportare i caregiver informali con narrazioni digitali TST. Infine, i limiti e le implicazioni per la ricerca futura sono discussi nella sezione finale.In a society where advances and innovations occur daily, the development of digital mental health tools continues at almost uncontrollable rates. Following trends in utilization of storytelling across fields and reflecting on the lack of working models and frameworks for application of storytelling in mental health support, the Transformative Storytelling Technique is designed and developed as a part of this work. This technique represents a new category for creating hybrid content to guide the experience of audiences, starting with the case of informal caregivers. The aim of this dissertation is to introduce and explore the feasibility of a novel technique – Transformative Storytelling (TST) - in supporting informal caregivers’ mental health and wellbeing with designed audio stories. The dissertation is presented in four chapters in line with the objectives and structured according to the research and developmental phases applied in developing this novel technique. Mixed-method design is used in this work, including qualitative scoping review in first study, narrative inquiry using semi-structured interviews designed following a-priori TST categories of exploration in the second study, and quantitative pre-post interventional study combined with the facial expression tracking in the pilot study. Transformative Storytelling Technique is demonstrated as a potentially successful methodological and digital narrative approach for structuring, thematically synthesizing experiences of target groups, and delivering them via digital narration. This potential was observed in the pilot pre-post assessment, where the technique demonstrated significant reduction of the subjective burden and a significant increase in happiness during the TST story exposure. In Study 1, the existing digital mental health tools for informal caregivers are being explored, followed by the Study 2 where a potential support solution has been thoroughly discussed and proposed. In line with that, the work continues with Study 3 where the Transformative Storytelling Technique is adapted from the Transformative Video Design and methodological demonstration is being performed. Next, the pilot assessment of the mentioned technique in Study 4 is included to test the feasibility of using the storytelling technique for supporting informal caregivers with TST digital narratives. Finally, limitations and implications for future research are discussed in the final section

Healthy snacks consumption and the Theory of Planned Behaviour. The role of anticipated regret

Two empirical studies explored the role of anticipated regret (AR) within the Theory of Planned Behavior (TPB) framework (Ajzen, 1991), applied to the case of healthy snacks consumption. AR captures affective reactions and it can be defined as an unpleasant emotion experienced when people realize or imagine that the present situation would be better if they had made a different decision. In this research AR refers to the expected negative feelings for not having consumed healthy snacks (i.e., inaction regret). The aims were: a) to test whether AR improves the TPB predictive power; b) to analyze whether it acts as moderator within the TPB model relationships. Two longitudinal studies were conducted. Target behaviors were: consumption of fruit and vegetables as snacks (Study 1); consumption of fruit as snacks (Study 2). At time 1, the questionnaire included measures of intention and its antecedents, according to the TPB. Both the affective and evaluative components of attitude were assessed. At time 2, self-reported consumption behaviors were surveyed. Two convenience samples of Italian adults were recruited. In hierarchical regressions, the TPB variables were added at the first step; AR was added at the second step, and the interactions at the last step. Results showed that AR significantly improved the TPB ability to predict both intentions and behaviours, also after controlling for intention. In both studies AR moderated the effect of affective attitude on intention: affective attitude was significant only for people low in AR

Exploring perspectives of people with type-1 diabetes on goalsetting strategies within self-management education and care

Background. Collaborative goal-setting strategies are widely recommended for diabetes self-management support within healthcare systems. Creating self-management plans that fit with peoples’ own goals and priorities has been linked with better diabetic control. Consequently, goal-setting has become a core component of many diabetes selfmanagement programmes such as the ‘Dose Adjustment for Normal Eating (DAFNE) programme’. Within DAFNE, people with Type-1 Diabetes (T1D) develop their own goals along with action-plans to stimulate goal-achievement. While widely implemented, limited research has explored how goal-setting strategies are experienced by people with diabetes.Therefore, this study aims to explore the perspectives of people with T1D on theimplementation and value of goal-setting strategies within DAFNE and follow-up diabetes care. Furthermore, views on barriers and facilitators to goal-attainment are explored.Methods. Semi-structured interviews were conducted with 20 people with T1D who attended a DAFNE-programme. Following a longitudinal qualitative research design, interviews took place 1 week, and 6-8 months after completion of DAFNE. A recurrent cross-sectional approach is applied in which themes will be identified at each time-point using thematic analyses.Expected results. Preliminary identified themes surround the difference in value that participants place on goal-setting strategies, and the lack of support for goal-achievement within diabetes care.Current stage. Data collection complete; data-analysis ongoing.Discussion. Goal-setting strategies are increasingly included in guidelines for diabetes support and have become essential parts of many primary care improvement schemes. Therefore, exploring the perspectives of people with T1D on the value and implementation of goal-setting strategies is vital for their optimal application

Physical Activity Promotion for Emerging Adults with Intellectual and Developmental Disabilities Transitioning from High School into the Community: A Virtual Intervention Grounded in Self-Determination Theory

People with intellectual and developmental disabilities (IDD) engage in lesser physical activity (PA) and more time in sedentary activities as compared to those without disabilities. A subset of people with IDD who are most vulnerable to develop habits detrimental to health is the emerging adults who are transitioning from adolescence into adulthood. Therefore, this age is an important time to promote healthy behaviors, including PA. This dissertation focuses on promoting PA for emerging adults with IDD. Three emerging adults completed this study that was community-engaged and grounded in the self-determination theory (SDT). The study consisted of a baseline, an intervention, and a follow-up phase. The intervention consisted of components to enhance the basic psychological needs of autonomy, competence and relatedness in PA. Participants were expected to wear a Fitbit for the entire duration of the study. This dissertation has two manuscripts. The objective of Manuscript 1 was to assess the feasibility and effectiveness of the virtual intervention grounded in SDT on three basic psychological needs and six levels of motivations and on PA behavior. Findings indicate that a virtual intervention to promote PA for emerging adults with IDD is feasible. Participants also increased their goal gradually through the course of the intervention. There were no significant differences noted in the participants’ basic psychological needs or six levels of motivation at four different time points during the course of the study. The second manuscript sought to understand the perspectives of emerging adults with IDD on the components of the virtual PA intervention. Findings indicate that Fitbit could be used effectively to motivate emerging adults with IDD to set goals and engage in regular PA. Participants in this study had a greater sense of autonomy in PA and in setting PA goals while also depending on their caregivers for engaging in PA outdoors. Overall findings from the study add to the limited literature that focuses on PA promotion for emerging adults with IDD. This dissertation lays a foundation to develop and implement a larger study recruiting more participants, conducting the intervention for a longer period and follow-up with the participants for more months following the withdrawal of the intervention. More mixed methods studies need to move away from conducting questionnaires for people with IDD but focus more on seeking perspectives from them through qualitative methods including using semi-structured interviews, focus groups and photovoice

Hidden Strains: Understanding Schizophrenia's Impact on Families and Communities

"Hidden Strains: Understanding Schizophrenia's Impact on Families and Communities" examines the challenges family caregivers of schizophrenia patients face in Romania. This study uncovers the socio-economic burdens and limited psychiatric support, particularly in rural areas, compounded by societal stigma. A significant finding is the caregivers' knowledge gap about schizophrenia, underscoring the need for mental health education for early detection and stigma reduction. The research stresses the vital roles of family and community in schizophrenia care, advocating for more community resources. It introduces innovative care models like the "Open Dialogue Approach" from Scandinavia, suggesting solutions for Romania's mental health challenges. Broadening its view, "Hidden Strains" contrasts Romanian mental health issues with global trends, emphasizing the urgency of mental health reforms. Concluding with recommendations for worldwide application, this work offers insights for professionals, caregivers, and policymakers, and resonates universally despite its Romanian foundation

Families learning about toothbrushing: developing a scalable intervention

Background: Dental caries in children is a preventable condition. In Pakistan, despite high prevalence, there have been minimal efforts to address this public health problem. Aim: To develop and test feasibility of a behavioural intervention aimed at parents, delivered by Lady Health Workers (LHWs) for oral health promotion of children in Pakistan. Methods: The PhD used mixed methods approach following MRC guidance on developing and evaluating complex health interventions. The theoretical domains framework (TDF) provided theoretical underpinnings and COM-B model helped analyse drivers for behaviour change. Study 1: systematic review and meta-analysis for effectiveness of behaviour change interventions delivered by non-dental health workers for children's oral health promotion, to identify behaviour change techniques (BCTs). Study 2: focus groups to identify barriers & facilitators for children's toothbrushing and oral health promotion. Study 3: compilation and finalisation of intervention through identification of modifiable behavioural determinants, and patient and public involvement (PPI) to finalise the intervention materials. Study 4: feasibility study for feasibility assessment of intervention (LHW training, intervention delivery and fidelity), and evaluation methods (recruitment strategy, and data collection). Acceptability of intervention and perceived impact/sustainability explored using semi-structured interviews. Results: Systematic review identified 23 effective studies from which 18 individual BCTs were finalised to form the PROviding Support to Parents for Engaging in their Children's Toothbrushing (PROSPECT) intervention. The feasibility study recruited 7 LHWs and 34 mothers (>100% recruitment), and trained all LHWs who then delivered the intervention during home visits (n=34) with high fidelity. The data collection showed 91% response rate. An overall positive response reported by mothers and LHWs regarding intervention's acceptability, and perceived impact/sustainability. Conclusion: The results suggest incorporating toothbrushing advice as part of LHWs routine home visits as feasible and acceptable means to promote children's oral health in Pakistan. A definitive trial is needed to test intervention's effectiveness

Using Foresight to develop eHealth intervention implementation strategy

One of the key focus areas of the National Dementia Strategy, released by the Canadian government in 2019, is improving informal caregivers' quality of life through better support. While an array of services are available to support them, it’s usually up to caregivers to find them and navigating through a fragmented health and social support system can be challenging, time-consuming, frustrating, and often ineffective. Innovative approaches and eHealth interventions that can provide easy, timely, and need-based access to knowledge resources, enhances and safeguards care capacity among informal caregivers, reducing stress and depression levels, delaying nursing home placements, improving mood and their quality of life (Brodaty & Donkin, 2009). Innovations in technology are becoming a crucial element in improving support for and the well-being of family caregivers but a number of social, cultural, ethical, and technical issues complicate the rapid emergence of new technologies which affects its adoption, implementation, and scalability. Using a participatory foresight approach, this research project speculates futures, 15 years from now, to explore and envision an implementation model for eHealth services for informal Dementia caregivers in Ontario. At a time when technology innovations present significant challenges and opportunities, the purpose is to identify leverage points that will inspire and inform organizations, developers, researchers, healthcare providers, and innovators interested in translating knowledge into practice by designing sustainable and resilient eHealth interventions. This has been accomplished by understanding the needs of informal caregivers, implications of emerging technologies, and factors affecting implementation of eHealth solutions that support informal caregivers