The use of digital storytelling of patients' stories as an approach to translating knowledge: a scoping review.

BACKGROUND: A growing interest has centered on digital storytelling in health research, described as a multi-media presentation of a story using technology. The use of digital storytelling in knowledge translation (KT) is emerging as technology advances in healthcare to address the challenging tasks of disseminating and transferring knowledge to key stakeholders. We conducted a scoping review of the literature available on the use of patient digital storytelling as a tool in KT interventions. METHODS: We followed by Arksey and O'Malley (Int J Soc Res Methodol 8(1):19-32, 2005), and Levac et al. (Implement Sci 5(1):69, 2010) recommended steps for scoping reviews. Search strategies were conducted for electronic databases (Medline, CINAHL, Web of Science, ProQuest dissertations and theses global, Clinicaltrials.gov and Psychinfo). The Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) was used to report the review process. RESULTS: Of 4656 citations retrieved, 114 full texts were reviewed, and twenty-one articles included in the review. Included studies were from nine countries and focused on an array of physical and mental health conditions. A broad range of interpretations of digital storytelling and a variety of KT interventions were identified. Digital storytelling was predominately defined as a story in multi-media form, presented as a video, for selective or public viewing and used as educational material for healthcare professionals, patients and families. CONCLUSION: Using digital storytelling as a tool in KT interventions can contribute to shared decision-making in healthcare and increase awareness in patients' health related experiences. Concerns centered on the accuracy and reliability of some of the information available online and the impact of digital storytelling on knowledge action and implementation.

Digital storytelling is a multi-media presentation of a story, often in the form of a narrated video. The use of digital storytelling of patient experiences with healthcare has gained attention in recent years, as a tool for sharing and understanding information among patients, caregivers, healthcare professionals and policy makers. A summary of the findings reported in studies looking at digital storytelling as a way of sharing information in healthcare is needed.We searched literature that included the use of digital storytelling of patients' healthcare experiences as a means of sharing and translating information, also referred to as knowledge translation or knowledge mobilization. There were 21 studies found from nine countries that used digital stories to look at experiences related to different physical and mental health conditions. A broad range of interpretations of digital storytelling and a variety of knowledge translation approaches were identified. The most common use of patients' digital stories was educational material for healthcare professionals and other patients.Using digital storytelling to translate knowledge can contribute to patients, caregivers, healthcare professionals and policy makers sharing the best available evidence when faced with making a health decision. Digital storytelling can help us understand patients' health related experiences. Further work is needed to test the accuracy and reliability of some online information and how to best measure the impact of digital storytelling on knowledge translation activities.

Preparing for the future: multi-stakeholder perspectives on autonomous goal setting for adolescents with autism spectrum disorders.

PURPOSE: Self-determination is linked to numerous positive outcomes including improved social inclusion and quality of life for adolescents with autism spectrum disorder. Autonomous participation in therapeutic goal setting is an important component of self-determination. This study examined perceptions of, and barriers to, autonomous goal setting as perceived by: (1) adolescents with autism spectrum disorder, (2) parents of adolescents with autism spectrum disorder, and (3) interdisciplinary professionals. METHOD: Three focus groups (one with each of the key stakeholders) and one joint parent and child interview were conducted. All discussions were audio-recorded, transcribed verbatim and thematically analyzed based on the methods outlined by Braun and Clarke (2006). RESULTS: A total of 7 parents (6 mothers, 1 father), 4 youth with autism spectrum disorder, and 10 professionals participated in the study. Three themes related to current experiences with goal setting emerged: (1) purpose, (2) barriers, and (3) types. CONCLUSIONS: Currently, adolescents with autism spectrum disorder are rarely active participants in the goal setting process. This study provides novel data, from the perspectives of multiple stakeholders, about barriers, perceptions, and actualities related to autonomous goal setting for adolescents with autism spectrum disorder. Implications for rehabilitation Adolescent participation in autonomous goal setting is an important component of self-determination. Rehabilitation professionals, parents, and adolescents with autism spectrum disorder identified similar barriers to autonomous goal setting. Adolescents with autism spectrum disorder described goals as short-term, concrete tasks, whereas parents perceived involvement in goal setting as a gateway to long-term self-determination. Rehabilitation professionals and parents acknowledged the benefits and advocated for increased involvement of adolescents with autism spectrum disorder in the goal setting process. Similar to the paradigm shift toward family-centered care, rehabilitation professionals need to shift to include the involvement and participation of individuals with autism spectrum disorder.

Preparing for the future: a review of tools and strategies to support autonomous goal setting for children and youth with autism spectrum disorders.

PURPOSE: Despite recognized benefits, current clinical practice rarely includes direct input from children and youth with autism spectrum disorder (ASD) in setting rehabilitation goals. This study reviews tools and evidence-based strategies to assist with autonomous goal settings for children and youth with ASD. METHOD: This study included two components: (1) A scoping review of existing tools and strategies to assist with autonomous goal setting in individuals with ASD and (2) a chart review of inter-disciplinary service plan goals for children and youth with ASD. RESULTS: Eleven data sources, evaluating five different tools to assist with autonomous goal setting for children and youth with ASD, were found. Three themes emerged from the integration of the scoping review and chart review, which are discussed in the paper: (1) generalizability of findings, (2) adaptations to support participation and (3) practice implications. CONCLUSIONS: Children and youth with ASD can participate in setting rehabilitation goals, but few tools to support their participation have been evaluated, and those tools that do exist do not align well with current services foci. Visual aids appear to be one effective support, but further research on effective strategies for meaningful engagement in autonomous goal setting for children and youth with ASD is warranted. Implications for rehabilitation Persons with ASD are less self-determined than their peers. Input into one's own rehabilitation goals and priorities is an important component of self-determination. Few tools exist to help engage children and youth with ASD in setting their own rehabilitation goals. An increased focus on identifying, developing and evaluating effective tools and strategies to facilitate engagement of children and youth with ASD in setting their own rehabilitation goals is warranted.

Suicidal Ideation Among Adults with Disability in Western Canada: A Brief Report.

This study investigated prevalence and risk factors for suicidal ideation among adults with self-reported disability in Western Canada. The method was secondary data analysis utilising the Canadian Community Health Survey. The odds of 12-month suicidal ideation are 3.5 times greater for adults with self-reported disability compared with non-disabled adults, controlling for age, sex, ethnicity, and psychiatric morbidity. The heightened risk of ideation among adults with self-reported disability is partially explained by social adversity, including food insecurity and low sense of community belonging. Reducing suicide risk among adults with disability requires a broad-spectrum approach, including mental health care, and strategies to ameliorate social and economic hardship.

Ameliorating Psychosocial Risk Among Mothers with Intellectual Impairment.

The purpose of this study was to pilot a flexible, group-based program designed to strengthen the social connections and enhance the psychological well-being of mothers with intellectual impairment. A multi-site, mixed-method, pretest-posttest design was employed. To obtain rich process and outcome data, the evaluation incorporated measures of psychosocial well-being, goal achievement scaling, and interviews with group facilitators and participants. A total of 18 mothers completed the program. Participation was associated with a meaningful reduction in psychological distress with effect sizes ranging from .57 for depression to .71 for anxiety. Participating in the group program gave the mothers something to look forward to each week, opportunities to learn from and support others, and the feeling of "being a part of society". Further research is needed to determine whether these promising results can be replicated, and to evaluate the long-term impact of the program on mothers and their children.

Association of a common complement receptor 2 haplotype with increased risk of systemic lupus erythematosus.

A genomic region on distal mouse chromosome 1 and its syntenic human counterpart 1q23-42 show strong evidence of harboring lupus susceptibility genes. We found evidence of linkage at 1q32.2 in a targeted genome scan of 1q21-43 in 126 lupus multiplex families containing 151 affected sibpairs (nonparametric linkage score 2.52, P = 0.006). A positional candidate gene at 1q32.2, complement receptor 2 (CR2), is also a candidate in the murine Sle1c lupus susceptibility locus. To explore its role in human disease, we analyzed 1,416 individuals from 258 Caucasian and 142 Chinese lupus simplex families and demonstrated that a common three-single-nucleotide polymorphism CR2 haplotype (rs3813946, rs1048971, rs17615) was associated with lupus susceptibility (P = 0.00001) with a 1.54-fold increased risk for the development of disease. Single-nucleotide polymorphism 1 (rs3813946), located in the 5' untranslated region of the CR2 gene, altered transcriptional activity, suggesting a potential mechanism by which CR2 could contribute to the development of lupus. Our findings reveal that CR2 is a likely susceptibility gene for human lupus at 1q32.2, extending previous studies suggesting that CR2 participates in the pathogenesis of systemic lupus erythematosus.