Defining the experiences of adolescent patients with multiple sclerosis in transition from pediatric care to adult care

Yılmaz, Didem Yüksel; Yardımcı, Figen; Erdemir, Firdevs; Karabudak, Rana

doi:10.1016/j.msard.2022.104123

Cited by 3 publications

(4 citation statements)

References 23 publications

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“…Similarly, to our study, adolescents in the study done by Boyd and MacMillan (2005) reported that maintaining a positive outlook on life and pursuing their goals were coping strategies to adjusting to a life with MS. Post‐traumatic growth commonly seen in individuals with chronic illnesses or other life‐altering events can be facilitated by providers by providing relevant resources and encouraging adolescents to cognitively revisit and process their diagnosis while emphasizing on their positive changes (Jones et al, 2020). In another qualitative study examining the transition process in pediatric MS, Yilmaz et al (2022) found that active participation in the decision‐making process and taking responsibility allowed patients to gain control over their lives. These findings appear to be common in other chronic inflammatory disorders as well (Ostlie et al, 2007).…”

Section: Discussionmentioning

confidence: 99%

“…Late transition, defined as greater than 18 years old, has been found to be associated with poor patient outcomes with lower follow‐up rates and medication compliance secondary to a lack of independence (Morsa, 2018; O'Mahony et al, 2019). Adverse transition processes can lead to increased stress, anxiety and dislike of the adult health care setting (Yilmaz et al, 2022). Frequently used transition guidelines focus on the importance of early transition conversations and building confidence during preventative visits (van Staa et al, 2011).…”

Section: Discussionmentioning

confidence: 99%

“…In another qualitative study examining the transition process in pediatric MS, Yilmaz et al (2022) found that active participation in the decision-making process and taking responsibility allowed patients to gain control over their lives. These findings appear to be common in other chronic inflammatory disorders as well (Ostlie et al, 2007).…”

Section: Assessing Current Medical Care Services and Preparedness For...mentioning

confidence: 99%

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No one really plans to have multiple sclerosis: Transition readiness and quality of life in paediatric multiple sclerosis

Thoby,

Veras,

Nallapati

et al. 2024

Child

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AimWe sought to explore the experiences and perceptions of the quality of life of adolescents with pediatric‐onset multiple sclerosis and assess their readiness for academic, employment and/or health care‐related transitions.BackgroundAdolescents with pediatric‐onset multiple sclerosis face unique challenges in managing a chronic illness while navigating future scholastic, social and occupational goals. We conducted a qualitative study with in‐depth, semi‐structured interviews from July 2017 to March 2019. Adolescents with pediatric‐onset multiple sclerosis were recruited from a pediatric neurology subspeciality practice until reaching data saturation. A total of 17 interviews were completed via telephone with participants ages 15 through 26.ResultsThrough content analysis of the interviews, we identified five major themes: (1) receiving a new diagnosis; (2) adapting to life with pediatric‐onset multiple sclerosis; (3) evaluating education/career transition preparedness; (4) adjusting within family life and establishing support systems; and (5) assessing current medical services and preparedness for adult medical care.ConclusionsAutonomy in health care management, adequate control of physical symptoms and sufficient family support impacted perceptions of quality of life. Implementing a dedicated transition visit, including the parent(s) of those with pediatric‐onset multiple sclerosis, early in adolescence may provide an avenue for appropriate anticipatory guidance regarding available services, independent medical management and continuity of care.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Assessing Current Medical Care Services and Preparedness For...mentioning

confidence: 99%

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No one really plans to have multiple sclerosis: Transition readiness and quality of life in paediatric multiple sclerosis

Thoby,

Veras,

Nallapati

et al. 2024

Child

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“…Çocuklar, bu dönemde belirsizliği kriz olarak görmekte ve baş etme yöntemlerine başvurarak bu krizi yönetmeye çalışmaktadır [8]. Ülkemizde çocuk MS hastaları ile yapılan nitel bir çalışmada, çocukluk döneminde yaşanılan uzun belirsizliklerin çocukların (n=17) büyüme ve gelişmelerini olumsuz etkilediği ve etkisiz baş etme yöntemlerine başvurduklarını göstermiştir [9]. Bu olgu sunumunda amaç; çocukluk çağında MS tanısı almış ve bu tanı ile büyümüş, şu anda 21 yaşında olan hastanın, tanı öncesi, tanı anı ve tanı konulduktan sonra yaşamış olduğu belirsizliği "Hastalıklarda Belirsizlik Kuramı"ı çerçevesinde ele almaktır.…”

Section: Introductionunclassified

Having Multiple Sclerosis from Childhood to Youth According to Uncertainty Theory: A Case Report

Yılmaz

2023

Celal Bayar Üniversitesi Sağlık Bilimleri Enstitüsü Dergisi

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Multiple skleroz hastalığı kronik ve dejeneratif bir hastalıktır. Multiple skleroz tanılı çocuk hastalarda bazı belirti ve bulguların ortaya çıkması ve bu bulguların hastalığa özgü olmaması, belirsizliğin öncüleri olarak görülmektedir. Sonucunun ne olacağını bilmeden bu belirsizlikle büyümek, çocuklarda ikincil sağlık problemlerine ve yetişkinlik döneminde bazı krizlerin ortaya çıkmasına neden olmaktadır. Bu çocuklar erken yaşlardan itibaren belirsizlik yaşamaya başlarlar ve yetişkinlik dönemine geldiklerinde bu belirsizliğin sonucu olarak karışıklık ve uyum problemleri yaşarlar. Bu karışıklığı gidermek için de değişime giderler ve yaşamdan anlam bulmaya çalışırlar. Böylece artan belirsizlikten adaptasyona doğru bir süreç yaşamış olurlar. 14 yaşında multiple skleroz tanısı alana ve şu anda 21 yaşında olan olgumuz ile iki kere derinlemesine bireysel görüşme yapılmıştır. Bu görüşmelerde yarı yapılandırılmış görüşme formu kullanılmıştır. Olgunun çocukluktan erişkinliğe yaşamış olduğu deneyimlerin ortaya çıkartılması ve bu deneyimlerin Hastalıkta Belirsizlik Kuramına göre açıklanması amaçlanmıştır. Görüşmeler sonucu ortaya çıkan veriler ile, nitel araştırma yöntemlerinden yorumlayıcı fenomenolojik kuramsal temelde, Maxqda Plus v10 nitel veri analiz programı kullanılarak tematik analiz yapılmıştır. Sonuç olarak, olgumuz, çocukluk döneminde belirsizliği tehlike olarak anlamlandırmış ve öfke, kaçınma, içe kapanma, uyumsuzluk gibi etkisiz baş etme stratejilerini kullanmıştır. Erişkin dönemine geldiğinde ise mevcut durumu büyüme fırsatı olarak görmüş ve hastalığı ve tedaviyi kabul ederek daha anlamlı bir yaşam sürmeye başlamıştır.

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Navigating liminal spaces together: a qualitative metasynthesis of youth and parent experiences of healthcare transition

South

DeForge

Celona

et al. 2023

Journal of Transition Medicine

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Transition from pediatric to adult care for adolescents and young adults (AYAs) with chronic illness affects the entire family. However, little research has compared AYA and parent experiences of transition. Using Sandelowski and Barroso’s method, the aim of this metasynthesis was to summarize findings of qualitative studies focusing on the transition experiences of AYAs and their parents across different chronic physical illnesses. PubMed, EMBASE and CINAHL were searched followed by forward and backward citation searching. Two authors completed a two-step screening process. Quality was appraised using Guba’s criteria for qualitative rigor. Study characteristics and second order constructs were extracted by two authors and an iterative codebook guided coding and data synthesis. Of 1,644 records identified, 63 studies met inclusion criteria and reflect data from 1,106 AYAs and 397 parents across 18 diagnoses. Three themes were synthesized: transition is dynamic and experienced differently (differing perceptions of role change and growth during emerging adulthood), need for a supported and gradual transition (transition preparation and the factors which influence it) and liminal space (feeling stuck between pediatric and adult care). While AYAs and parents experience some aspects of transition differently, themes were similar across chronic illnesses which supports the development of disease agnostic transition preparation interventions. Transition preparation should support shifting family roles and responsibilities and offer interventions which align with AYA and family preferences.

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Defining the experiences of adolescent patients with multiple sclerosis in transition from pediatric care to adult care

Cited by 3 publications

References 23 publications

No one really plans to have multiple sclerosis: Transition readiness and quality of life in paediatric multiple sclerosis

No one really plans to have multiple sclerosis: Transition readiness and quality of life in paediatric multiple sclerosis

Having Multiple Sclerosis from Childhood to Youth According to Uncertainty Theory: A Case Report

Navigating liminal spaces together: a qualitative metasynthesis of youth and parent experiences of healthcare transition

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