Using Photovoice to Explore the Unique Life Perspectives of Youth With Sickle Cell Disease

Stegenga, Kristin; Burks, Lisa M.

doi:10.1177/1043454213493508

Cited by 17 publications

(28 citation statements)

References 20 publications

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“…The photovoice methodology has been adapted according to the participants' age and the circumstances of data collection. Instead of keeping a journal of their photographs, the children completed a qualitative interview, which proved to be a useful methodology with children aged 6 to 14 years (Stegenga & Burks 2013). In the present study, additional adaptation of the methodology has been conducted.…”

Section: Designmentioning

confidence: 99%

‘Through my eyes’: health‐promoting factors described by photographs taken by children with experience of cancer treatment

Einberg

Nygren

Svedberg

et al. 2015

Child

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Section: Designmentioning

confidence: 99%

‘Through my eyes’: health‐promoting factors described by photographs taken by children with experience of cancer treatment

Einberg

Nygren

Svedberg

et al. 2015

Child

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“…All used qualitative methods to capture the views and experiences of the participants. Erskine (2011), Valenzuela et al (2013), Dyson et al (2012) and Stegenga & Burks (2013) all took place in the last five years. Conversely Atkin & Ahmad (2001) and Thomas & Taylor (2002) studies occurred in the last 15 years.…”

Section: Resultsmentioning

confidence: 99%

“…All of the studies examined used a qualitative approach, although differed in how they collected the data. Stegenga & Burks (2013) & Valenzuela et al (2013 used photovoice which "is often valued for its ability to uncover rich descriptive information" (Catalani & Minkler, 2010;pp.441). Erskine (2011) used Interpretative phenomenological analysis (IPA) which uses a psychological focus to help explore participant's experiences, understandings, perceptions and views (Brocki & Wearden, 2006).…”

Section: Methodmentioning

confidence: 99%

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Sickle cell anaemia and the experiences of young people living with the condition

Foster¹,

Ellis²

2018

Nursing Children and Young People

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Sickle cell anaemia (SCA) is a life-threatening haemoglobin disorder acknowledged for its unpredictability and painful episodes. The aim of this qualitative literature review was to explore the experiences of young people living with SCA and its effect on their lives. The objective was to critically review selected primary research and make recommendations for practice, education and research. After reviewing potential articles using EBSCOhost, inclusion and exclusion criteria were devised and six appropriate studies were found with most participants in the 10-25 years age range. These studies were conducted in the UK and the United States. The Critical Appraisal Skills Programme qualitative research checklist was used to evaluate the articles. Thematic analysis identified three themes: acceptance, support and unpredictability, with sub-themes of spirituality and discrimination. It was clear that SCA affected multiple areas of young people's lives. Recommendations are made for practice, education and research.

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“…It is well known that heme biosynthesis is one of the most important metabolic pathways in mammals, and defective heme biosynthesis will give rise to severe metabolic disorders, such as erythropoietic porphyria and sideroblastic anemia [21]. SCD is a group of genetic blood disorders, and patients with SCD possess sickle hemoglobin, an oxygen-transport protein in the red blood cells [22,23]. With the increase regulated genes and 44 up-regulated genes.…”

Section: Changed Percentage Of Disturbed Pathwaysmentioning

confidence: 99%

Individualized identification of disturbed pathways in sickle cell disease

Wang

Huang

et al. 2017

Open Life Sciences

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Abstract:Background: Sickle cell disease (SCD) is one of the most common genetic blood disorders. Identifying pathway aberrance in an individual SCD contributes to the understanding of disease pathogenesis and the promotion of personalized therapy. Here we proposed an individualized pathway aberrance method to identify the disturbed pathways in SCD. Methods: Based on the transcriptome data and pathway data, an individualized pathway aberrance method was implemented to identify the altered pathways in SCD, which contained four steps: data preprocessing, gene-level statistics, pathway-level statistics, and significant analysis. The changed percentage of altered pathways in SCD individuals was calculated, and a differentially expressed gene (DEG)-based pathway enrichment analysis was performed to validate the results. Results: We identified 618 disturbed pathways between normal and SCD conditions. Among them, 6 pathways were altered in > 80% SCD individuals. Meanwhile, forty-six DEGs were identified between normal and SCD conditions, and were enriched in heme biosynthesis. Relative to DEGbased pathway analysis, the new method presented richer results and more extensive application. Conclusion: This study predicted several disturbed pathways via detecting pathway aberrance on a personalized basis. The results might provide new sights into the pathogenesis of SCD and facilitate the application of custom treatment for SCD.

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Using Photovoice to Explore the Unique Life Perspectives of Youth With Sickle Cell Disease

Cited by 17 publications

References 20 publications

‘Through my eyes’: health‐promoting factors described by photographs taken by children with experience of cancer treatment

‘Through my eyes’: health‐promoting factors described by photographs taken by children with experience of cancer treatment

Sickle cell anaemia and the experiences of young people living with the condition

Individualized identification of disturbed pathways in sickle cell disease

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