Visual Narratives of the Pediatric Illness Experience: Children Communicating with Clinicians Through Video

Rich, Michael; Polvinen, Julie; Patashnick, Jennifer

doi:10.1016/j.chc.2005.02.013

Cited by 14 publications

(13 citation statements)

References 24 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Parents of participants expressed concerns for their child's current or future sexual and romantic lives, as well as hopes for future childbearing possibilities. Although conversations specific to sexuality do not often occur between patient and parent (Blum et al 1991), caregivers have been shown to play an important role in supporting adolescents with SB in becoming independent adults (Rich et al, 2005b). As has been recommended for adolescents with cystic fibrosis (Frayman & Sawyer, 2015), parents of young people with SB need support in educating and empowering their children early and often on issues of conditionspecific sexual health, so that they are appropriately prepared to discuss these issues as the child matures.…”

Section: Discussionmentioning

confidence: 99%

“…Patients aged 13 to 28 years with all levels of SB and abilities were eligible; mobility of included participants ranged from using crutches and leg braces to wheelchairs. After enrolling and consenting (or assenting with parental consent if under 18 years), participants were loaned a video camcorder for a period of 8 to 12 weeks and trained to shoot visual narratives (Rich et al, 2005b). Participants were encouraged to record any and all aspects of their lives that they wanted to share, with the knowledge that the videos would be used to educate the medical community about their experience living with SB.…”

Section: Methodsmentioning

confidence: 99%

See 1 more Smart Citation

What young people with spina bifida want to know about sex and are not being told

Akré

Light

Sherman

et al. 2015

Child

View full text Add to dashboard Cite

Objective To examine sexual knowledge, concerns, and needs of youth with spina bifida (SB) to inform the medical community on ways to better support their sexual health. Methods As part of the Video Intervention/Prevention Assessment (VIA) – Transitions, a prospective cohort study, 309 hours of video data were collected from 14 participants (13–28 years) with SB. Participants were loaned a video camcorder for 8–12 weeks to shoot visual narratives about any aspects of their lives. VIA visual narratives were analyzed with Grounded Theory using NVivo. Results Out of 14 participants, 11 (6 females) addressed issues surrounding romantic relationships and sexuality in their video clips. Analysis revealed shared concerns, questions, and challenges regarding sexuality gathered under 4 main themes: romantic relationships, sexuality, fertility and parenthood, and need for more talk on sexuality. Conclusions Youth with SB reported difficulties in finding answers to questions regarding their sexuality, romantic relationships, and fertility. This study revealed a need for help from the medical community to inform and empower youth with SB in the area of sexual health. Through sexual and reproductive health education with patients and parents starting at an early age, medical providers can further encourage healthy emotional and physical development in adolescents transitioning into adulthood.

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

What young people with spina bifida want to know about sex and are not being told

Akré

Light

Sherman

et al. 2015

Child

View full text Add to dashboard Cite

show abstract

“…These approaches involve using the arts in any phase of the research process (Knowles & Cole, 2008). Evidence suggests that common arts media in research include theatre, dance, visual arts, poetry, and installation art (e.g., Angus, et al, 2009;Boydell, 2011;Carless & Douglas, 2009;Cox, Kazubowski-Houston, & Nisker, 2009;Faulkner, 2007;Fraser & al Sayah, 2011;Lahman, et al, 2010;Radley & Taylor, 2003;Rich, Polvinen, & Patashnick, 2005;Richardson, 2002;Rossiter, et al, 2008;Stuckey, 2009;Stuckey & Tisdell, 2010). Although the arts have been increasingly incorporated into healthcare research over the last decade, they have well-established roots in education and sociology (Boydell, et al, 2012;Knowles & Cole, 2008).…”

mentioning

confidence: 99%

Knowledge Translation Capacity of Arts-informed Dissemination: A Narrative Study

Lapum

Liu

Church

et al. 2016

Art/Research International

View full text Add to dashboard Cite

Background: Arts-informed dissemination is an expanding approach to enhancing knowledge translation in the health sciences. Problematic is the minimal evaluation studies and the rare reporting of the influencing factors of knowledge translation. “The 7,024th Patient” is a research-derived art installation created to disseminate findings about patients’ experiences of heart surgery and the importance of humanistic patient-centred care approaches. The current study’s purpose was to explore how arts-informed dissemination (i.e., “The 7,024th Patient”) influenced healthcare practitioners’ delivery of care.Methods: An arts-informed narrative study was guided by the Promoting Action on Research Implementation in Health Services framework. The sample included a multi-disciplinary group of 19 individuals who worked with patients undergoing and recovering from heart surgery. Two interviews were conducted with each participant at the time of viewing the installation and 6 months later. A narrative analysis was conducted using Pictorial Narrative Mapping techniques.Results: Study findings indicated that the arts as a form of evidence provide an experiential and aesthetic encounter, which stimulated reflective practice. Participants’ accounts reflected cognitive and behavioral modifications related to empathy, holistic approaches and relational care. However, the complexities associated with the interpretive process and the influencing knowledge translation elements indicated a need to dialogue about the translation process, including deconstructing the evidence within the context of one’s own practice.Conclusions: Art is not just works of beauty or eccentric paintings. There is an imaginative and aesthetic capacity that can be cultivated with diligence, creativity, and rigour in the world of healthcare research and knowledge translation. Next steps require the examination of the knowledge translation capacity of different art forms with a range of populations and disciplines. Additionally, this study suggests the need to explore arts-informed dissemination that draws upon a more dialogical intervention in which knowledge users are involved in the interpretive processes of knowledge translation.

show abstract

“…The Video Intervention/Prevention Assessment (VIA) methodology was originally developed twenty years ago at Boston Children's Hospital. 23,36 The VIA program has recently expanded to the University of Florida Pediatric Pulmonary Center in Gainesville. With the VIA method, we loan video camcorders to patients and ask them to: "teach us about your life outside of the hospital and what you would like your doctors to know about living with CF."…”

Section: Methodology Video Intervention/prevention Assessmentmentioning

confidence: 99%

Hearing the patient voice: Using video intervention/prevention assessment to understand teens with cystic fibrosis

Lscw¹,

Msw²,

Polvinen³

et al. 2014

Patient Experience Journal

Self Cite

View full text Add to dashboard Cite

This qualitative study asked two questions: 1) How do teens with cystic fibrosis (CF) feel about their treatments; and 2) What factors lead teens to adhere, or not adhere, to treatments. To answer these questions we used an innovative approach (Video Intervention/Prevention Assessment or VIA), to learn about the experiences of teens with CF. We loaned video camcorders to teens with CF and asked them to create visual narratives of their lives. Researchers logged and coded videotapes, identifying themes that arose from the material. A primary theme was "Doctors don't understand." Participants also highlighted the value of routines and parental support in consistently doing treatments. We identify and discuss themes that emerged and discuss how findings can be used to help providers improve care, develop partnerships with patients and increase adherence.

show abstract

Visual Narratives of the Pediatric Illness Experience: Children Communicating with Clinicians Through Video

Cited by 14 publications

References 24 publications

What young people with spina bifida want to know about sex and are not being told

What young people with spina bifida want to know about sex and are not being told

Knowledge Translation Capacity of Arts-informed Dissemination: A Narrative Study

Hearing the patient voice: Using video intervention/prevention assessment to understand teens with cystic fibrosis

Contact Info

Product

Resources

About