Palestinian children's narratives about living with spina bifida: Stigma, vulnerability, and social exclusion

Nahal, Maha Sudki; Axelsson, Åsa; Imam, Asma; Wigert, Helena

doi:10.1111/cch.12625

Cited by 35 publications

(40 citation statements)

References 105 publications

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“…, 16 , 17 , 18 , 19 , 20 , 21 , 22 Saudi Arabia (n = 5), 23 , 24 , 25 , 26 , 27 Jordan (n = 4), 28 , 29 , 30 , 31 and 3 studies each were conducted in the USA 32 , 33 , 34 and Qatar. 35 , 36 , 37 Two studies were conducted in Palestine, 38 , 39 and one study each was conducted in Canada, 40 Sweden 41 and Turkey. 42 …”

Section: Resultsmentioning

confidence: 99%

“…Empirical data collection methods were either interviews (n = 12) 13 , 18 , 20 , 21 , 23 , 25 , 26 , 28 , 32 , 34 , 39 , 41 or focus groups (n = 14). 12 , 14 , 15.…”

Section: Resultsmentioning

confidence: 99%

“…, 16 , 27 , 28 , 30 , 31 , 32 , 33 , 34 The explanation given for using this method was that some of the authors were English-speaking and the translation enabled them to access the data. 13 , 14 , 30 , 31 , 32 , 33 , 39 Authors mitigated any potential effects of translation on the quality of the analysis by involving bilingual researchers in the coding verification process, 14 retaining key words in Arabic, 36 , 37 or by having translators add notations to help ensure that the meaning of cultural idioms was not lost. 16 …”

Section: Resultsmentioning

confidence: 99%

“…Others described some aspects of data validation. 23 , 35 , 39 Thirteen studies used qualitative analysis computer packages for their data analysis, while 2 studies used pen and paper, Microsoft word, and excel.…”

Section: Resultsmentioning

confidence: 99%

See 3 more Smart Citations

Qualitative research in the Arabic language. When should translations to English occur? A literature review

Aloudah

2022

Exploratory Research in Clinical and Social Pharmacy

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Section: Resultsmentioning

confidence: 99%

“…Empirical data collection methods were either interviews (n = 12) 13 , 18 , 20 , 21 , 23 , 25 , 26 , 28 , 32 , 34 , 39 , 41 or focus groups (n = 14). 12 , 14 , 15.…”

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

Qualitative research in the Arabic language. When should translations to English occur? A literature review

Aloudah

2022

Exploratory Research in Clinical and Social Pharmacy

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“…During adolescence, physical and intellectual disabilities manifest more noticeably as social dynamics become increasingly complex, resulting in impaired social competence and limited social contacts or quality friendships [12,19,22]. The available literature predominantly focuses on the risk factors, challenges and inhibitory aspects of living with SB [21,23,24]. As a result, little is known about the positive contexts and experiences of living with SB globally and in the SA context, especially from the perspectives of both adolescents and their primary caregivers [12,21].…”

Section: Introductionmentioning

confidence: 99%

South African adolescents living with spina bifida: contributors and hindrances to well-being

Page

Coetzee

2019

Disability and Rehabilitation

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Background: Spina bifida myelomeningocele is a major cause of disability among adolescents. However, little research is available in low-income nations such as South Africa. Investigating the contributors and hindrances to well-being in adolescents with spina bifida myelomeningocele may yield novel insights. In this study we included both adolescents and their primary caregivers to examine their perspectives on caring for and facilitating improvements in the life of the adolescents living with spina bifida myelomeningocele. Objectives: To identify and document the perceptions of adolescents with spina bifida myelomeningocele and their primary caregivers on the factors that contribute to and hinder the well-being of adolescents living with spina bifida myelomeningocele in South Africa. Method: An explorative qualitative research design was utilized, guided by a positive psychology theoretical framework. Fourteen participants, consisting of seven adolescent-primary caregiver dyads, were interviewed. Data were analyzed using thematic analysis and coded inductively using ATLAS.ti software. Results: We identified eight themes describing participants' perceptions on contributors and hindrances to the well-being of adolescents with spina bifida myelomeningocele. Contributing factors included: family support, social groups, special needs education, sport participation, striving for independence, and finding meaning in life. Hindrances included: structural (lack of resources, medical care and mobility challenges) and social (bullying and harmful friendships, secrecy about the condition, social isolation and unhappiness) hindrances to well-being. Conclusion: Acknowledging the contributors and hindrances to the well-being of adolescents with spina bifida myelomeningocele is crucial for guiding informed positive interventions and preventing blind spots. Given the limited number of positive contexts, concentrated effort is required to facilitate opportunities for growth in a range of environments. Primary caregivers lack insight into the positive and negative aspects of the adolescents' lives. We suggest families prioritize bonding time and open communication.Exploring the perspectives of adolescents living with spina bifida and their parents regarding wellbeing is important to develop appropriate interventions. Adolescents living with spina bifida value social support and social interaction as ways to maintain well-being. Special needs education institutions with curriculums tailored to adolescents with spina bifida promote comfort, acceptance, and personal excellence. Sport contributes to the mental, social and physical well-being of adolescents with spina bifida. Sport inspires and offers opportunities for success, it improves school attendance, increases positive affect, and provides opportunities for close relationships with friends and family. Finding ways to mitigate the stigma around spina bifida is necessary to improve adolescents' wellbeing within South Africa.

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Using a health observance event to raise awareness: An assessment of World Birth Defects Day

Kleven,

Mai,

Bermejo‐Sánchez

et al. 2023

Birth Defects Research

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World Birth Defects Day (WorldBDDay), observed annually on March 3, was launched in 2015 to advocate for public health surveillance, research, and prevention of birth defects, along with improved care and treatment for affected individuals. Following its fifth observance in 2019, we assessed WorldBDDay by analyzing: (a) engagement and content of over 2000 WorldBDDay posts on Facebook, Twitter, and Instagram; (b) interview responses from 9 WorldBDDay charter (founding) organizations on their perceptions of strengths and areas for improvement for WorldBDDay; (c) survey responses from 61 WorldBDDay 2019 partner (participating) organizations on their WorldBDDay 2019 activities; and (d) post-2019 social media engagement. Most social media posts (60%) occurred from organizations using Twitter (80% vs. 14% for Instagram and 6%for Facebook), although posts from individuals had higher levels of engagement (e.g., likes and comments). The highest engagement occurred for posts focused on general awareness, prevention, or events. Charter organizations reported the need for existing and new partner engagement, including a designated WorldBDDay contact for regular communication and coordination of activities and prepared prevention-focused messaging. Partner organizations

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Palestinian children's narratives about living with spina bifida: Stigma, vulnerability, and social exclusion

Cited by 35 publications

References 105 publications

Qualitative research in the Arabic language. When should translations to English occur? A literature review

Qualitative research in the Arabic language. When should translations to English occur? A literature review

South African adolescents living with spina bifida: contributors and hindrances to well-being

Using a health observance event to raise awareness: An assessment of World Birth Defects Day

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