Self-management and spina bifida: A systematic review of the literature

Sawin, Kathleen J.; Margolis, Rachel; Ridosh, Monique M.; Bellin, Melissa H.; Woodward, Julie; Brei, Timothy J.; Logan, Lynne Romeiser

doi:10.1016/j.dhjo.2020.100940

Cited by 21 publications

(26 citation statements)

References 71 publications

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“…Although clinicians recognize the importance of promoting self-care in CYAs with chronic conditions, they need standardized approaches and psychometrically sound tools ( 78 ). Measuring a patient’s level of self-care using an assessment instrument represents, for the clinician, the first step to identifying educational gaps and factors hindering the engagement process ( 82 ). Healthcare providers play an important role in fostering autonomy using educational strategies that take into consideration developmental stages and family support ( 83 – 85 ).…”

Section: Discussionmentioning

confidence: 99%

Instruments Measuring Self-Care in Children and Young Adults With Chronic Conditions: A Systematic Review

et al. 2022

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Children and young adults (CYAs) with chronic conditions need to engage in self-care to improve their quality of life. This study aimed to retrieve the literature on instruments to assess self-care in CYAs living with chronic conditions and evaluate the psychometric proprieties of the instruments retrieved. A systematic literature review was conducted on six databases to identify peer-reviewed papers that described or used an evaluation instrument of self-care in CYAs with chronic conditions. Twenty-three articles describing 11 instruments of self-care were identified. Five instruments (45.45%) were developed for specific diseases, while six (54.54%) for various chronic illnesses. Most of the instruments were focused on treatment adherence within self-care maintenance (i.e., behaviors to maintain illness stability), excluding the monitoring of clinical parameters or the management of exacerbations. This review provides an overview of available instruments that measure self-care in CYAs with chronic conditions, which health professionals could use for patient education.

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Section: Discussionmentioning

confidence: 99%

Instruments Measuring Self-Care in Children and Young Adults With Chronic Conditions: A Systematic Review

et al. 2022

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“…This is supported by a recent study demonstrating that self-management was a precursor for the transition to adulthood for adolescents with SB [ 7 ]. Many qualitative and quantitative studies have suggested that acquiring disease-specific self-management skills and performing them independently is key to a successful transition [ 7 , 34 – 37 ]. In addition, self-management is essential to maintaining normality in the daily life of adolescents with SB [ 34 ].…”

Section: Discussionmentioning

confidence: 99%

“…Adolescents often experience tension between being cared for by their parents and being independent, and they worry about their future, particularly as they become adults and prepare to transition to an independent life [ 34 ]. As suggested by previous studies [ 6 , 31 , 34 , 35 , 37 , 38 ], to prompt the transition of adolescents with SB, it is necessary to encourage desirable parenting styles for parents raising children with SB.…”

Section: Discussionmentioning

confidence: 99%

Factors affecting the transition to adulthood of Korean young adults with spina bifida: a qualitative study

et al. 2023

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Background Transition to adulthood to live independently while self-managing health and daily life without parental help is crucial for young adults with chronic conditions. Despite its importance as a precursor to effectively managing lifelong conditions, little is known about the experiences of young adults with spina bifida (SB) in transition to adulthood in Asian countries. This study aimed to explore the experiences of Korean young adults with SB to identify the facilitators or barriers to the transition from adolescence to adulthood from their perspectives. Methods This study used a qualitative descriptive design. The data were collected in South Korea through three focus group interviews with 16 young adults with SB, aged 19–26, from August to November 2020. We conducted a qualitative content analysis using a conventional approach to identify the factors that facilitated and hindered the participants’ transition to adulthood. Results Two themes emerged as facilitators and barriers to the transition to adulthood. a) Facilitators: understanding and acceptance of SB, acquiring self-management skills, parenting styles encouraging autonomy, parents’ emotional support, school teachers’ thoughtful consideration, and participation in self-help groups. b) Barriers: overprotective parenting style, experience of being bullied by peers, damaged self-concept, concealing one’s chronic condition from others, and the lack of privacy in school restrooms. Conclusions Korean young adults with SB shared their experiences of struggling to properly manage their chronic conditions on their own, particularly concerning regular bladder emptying, during the transition from adolescence to adulthood. To facilitate the transition to adulthood, education on the SB and self-management for adolescents with SB and on parenting styles for their parents are important. To eliminate barriers to the transition to adulthood, improving negative perceptions of disability among students and teachers and making school restrooms CIC-friendly are needed.

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“…According to Copp et al 3 , self-care can reduce the risk of complications and secondary conditions and can improve the results sought through treatment in populations with spina bifida. For children and adolescents with SB, the study by Peterson et al 18 and the systematic review by Sawin et al 19 showed that performing self-care behaviors helps in self-management of health, helps in social participation, and combats vulnerability, stigma, and discrimination. Our intention with the booklet was to promote self-care, improve quality of life and optimize and assist the participation of patients and their families in rehabilitation.…”

Section: Discussionmentioning

confidence: 99%

Validação de conteúdo e análise da adesão ao uso da cartilha “Orientações para a Manutenção da Qualidade de Vida – Espinha Bífida” em crianças e adolescentes deambuladores e não deambuladores com espinha bífida

Franco

Martins

Davoli

et al. 2022

Rev. Med. (São Paulo)

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Objetivo: A partir da produção de uma cartilha de exercícios domiciliares “Orientações para a Manutenção da Qualidade de Vida – Espinha Bífida”, objetivou-se validar o conteúdo, realizar a avaliação do material (cartilha) pelos cuidadores, e analisar a adesão ao uso da cartilha. Métodos: Para validação do conteúdo, 8 juízes especialistas avaliaram a cartilha por meio de um questionário adaptado e foi estabelecido o índice de validade de conteúdo (IVC) para cada aspecto abordado. Na avaliação do material realizada pelos cuidadores e na análise da adesão ao uso da cartilha, participaram 10 crianças e adolescentes com espinha bífida e seus cuidadores. O pesquisador leu a cartilha e treinou os exercícios na presença do paciente e de seu cuidador, indicando como deveriam ser realizados em domicílio. Após a entrega foi marcado um retorno presencial, em 15 dias, para que os cuidadores pudessem relatar sobre a avaliação do material assim como, descrever sobre a adesão desses participantes ao uso da cartilha. Por fim, foi agendado um segundo encontro - follow-up – para analisar a adesão em longo prazo. Resultados: Dos 27 aspectos abordados na validação do conteúdo, 24 destes receberam pontuação acima do índice aceitável (IVC = 1,00). A maior parte dos cuidadores responderam “concordo” ou “concordo totalmente” para todos os itens analisados referente à avaliação do material. Em curto prazo foi observada uma taxa de adesão de 25% dos participantes e em longo prazo de 12,5%. Conclusão: A cartilha “Orientações para a Manutenção da Qualidade de Vida – Espinha Bífida” por apresentar clareza dos itens apresentados, facilidade de leitura e adequada compreensão, segundo a avaliação dos juízes especialistas e dos cuidadores, mostrou ser um ótimo recurso para incrementar o tratamento fisioterapêutico de criança e adolescentes com espinha bífida, porém evidenciou uma moderada/baixa adesão por parte dos participantes.

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Self-management and spina bifida: A systematic review of the literature

Cited by 21 publications

References 71 publications

Instruments Measuring Self-Care in Children and Young Adults With Chronic Conditions: A Systematic Review

Instruments Measuring Self-Care in Children and Young Adults With Chronic Conditions: A Systematic Review

Factors affecting the transition to adulthood of Korean young adults with spina bifida: a qualitative study

Validação de conteúdo e análise da adesão ao uso da cartilha “Orientações para a Manutenção da Qualidade de Vida – Espinha Bífida” em crianças e adolescentes deambuladores e não deambuladores com espinha bífida

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