Condition Self-Management in Pediatric Spina Bifida: A Longitudinal Investigation of Medical Adherence, Responsibility-Sharing, and Independence Skills

Psihogios, Alexandra M.; Kolbuck, Victoria D.; Holmbeck, Grayson N.

doi:10.1093/jpepsy/jsv044

Cited by 47 publications

(52 citation statements)

References 36 publications

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“…Individuals with spina bifida tend to achieve lower levels of autonomy compared to their peers and have been shown to be non-adherent (up to 50%) to specific aspects of their medical regimen. 24 Our findings that repeated participation in a camp-based psychosocial intervention is associated with greater gains in both responsibility and competency for medical tasks are encouraging. Indeed, simultaneous growth in medical responsibility and mastery are necessary for optimal disease management.…”

Section: Discussionmentioning

confidence: 65%

“…Indeed, simultaneous growth in medical responsibility and mastery are necessary for optimal disease management . Medical adherence rates can rapidly decrease if the child assumes responsibility for a medical task without first demonstrating competency in this skill . Therefore, repeated participation in the intervention may not only be associated with increases in mastery and autonomy, but decreases in deleterious secondary health complications as well.…”

Section: Discussionmentioning

confidence: 99%

“…25 Medical adherence rates can rapidly decrease if the child assumes responsibility for a medical task without first demonstrating competency in this skill. [23][24][25] Therefore, repeated participation in the intervention may not only be associated with increases in mastery and autonomy, but decreases in deleterious secondary health complications as well. Further, camp participants who first participated at younger ages reported greater gains in health-related independence, which is consistent with recommendations to incorporate life skills training for children with disabilities in treatment plans to support health and functional outcomes through adolescence and adulthood.…”

Section: Discussionmentioning

confidence: 99%

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Camp‐based psychosocial intervention dosage and changes in independence in young people with spina bifida

Driscoll

Murray

Holbein

et al. 2019

Develop Med Child Neuro

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Aim To examine associations between camp‐based intervention dosage and changes in independence‐related skills for young people with spina bifida. Method Participants were 110 individuals (mean age [SD] 14y 7mo [6y 1mo], range 6–32y; 66 females, 54 males) who attended a summer camp for individuals with spina bifida between 2 to 6 times (mean 2.40; operationalized as ‘dosage’). Parents of young campers (e.g. those <18y) also participated in data collection. Campers and/or parents completed preintervention measures assessing campers’ level of medical responsibility, mastery over medical tasks, and social skills. Outcomes included change in preintervention scores from dose 1 to final dose. Results Hierarchical regression analyses with and without covariates (age, IQ, and lesion level at dose 1) revealed that increased dosage was significantly associated with greater parent‐reported improvements in campers’ medical responsibility and mastery over medical tasks. Increased dosage was also significantly associated with camper‐report of increased medical responsibility, but this relationship was no longer significant when including covariates. Intervention dosage was not associated with changes in campers’ social skills. Interpretation Repeated participation in a camp‐based intervention was associated with improvements in condition‐related independence. Future work may focus on the development of interventions to promote improvements in social skills for young people with spina bifida. What this paper adds Participating in an intervention over multiple summers is associated with increases in campers’ responsibility for spina bifida‐related tasks. Repeated summer camp intervention participation is associated with improved mastery over condition‐related tasks for campers with spina bifida. Repeated camp intervention participation is not associated with changes in social skills for campers with spina bifida.

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Section: Discussionmentioning

confidence: 65%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Camp‐based psychosocial intervention dosage and changes in independence in young people with spina bifida

Driscoll

Murray

Holbein

et al. 2019

Develop Med Child Neuro

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“…In most studies on adolescence and adolescents’ transitions into adulthood, separation and independence in receiving medications were emphasized in the process of adherence. 47 , 48 Independence can be related to family members or the health care team. 49 Self-care is an everyday responsibility that can improve the patient’s health.…”

Section: Discussionmentioning

confidence: 99%

Factors influencing health self-management in adherence to care and treatment among the recipients of liver transplantation

Moayed¹,

Ebadi²,

Mohammadi³

et al. 2018

PPA

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IntroductionLiver transplantation is the global treatment of end-stage liver diseases. Since the patients’ survival rate has been improved, the patient may experience reductions in physical, cognitive, and psychosocial functions after liver transplantation influencing their adherence to care and treatment. The transplant survival is complex and patients’ adherence to care and treatment should be considered when health care providers make decisions regarding treatment. This qualitative study aimed to explore factors influencing health self-management in adherence to care and treatment among the recipients of care and treatment.MethodsIn this study, 23 interview sessions were carried out with a total 18 patients, 2 family members and 3 transplantation team members from May to November 2017. The patients were selected using the purposive method from both genders, with a various age range and initial diseases leading to liver transplantation, and time passed from liver transplantation. A semi-structured interview guide was developed based on literature review and pilot interviews. The participants were asked to describe their experiences of self-management behaviors in adherence to treatment and care. The data were analyzed using a conventional content analysis method and managing via the MAXQDA-10 software.ResultsTwo themes were developed during data analysis as “self-regulation” and “self-care”. “Self-regulation” consisted of “intentionally changing”, “positively thinking”, “information seeking”, “problem-solving”, “past knowledge transferring”, and “self-controlling”. “Self-care” had three sub-themes “shift to independence”, “vigilance”, and “self-care support”.ConclusionThe participants perceived the health self-management in adherence to care as a set of factors related to “self-regulation” and “self-care” behaviors. “Self-regulation” is required to create a balance in life. Also, “self-care” efforts can help with maintaining and improving patients’ health.

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“…Unsurprisingly, these years can be more complex for those living with a long-term health condition (LTC). Adolescents with LTCs increasingly take on self-management responsibility, sometimes doing the majority of self-care tasks by the age of 13 [3][4][5][6][7]. However, self-management and health outcomes of patients with LTCs often decline during adolescence, which can lead to increased likelihood health complications and hospital admissions [7][8][9].…”

Section: Introductionmentioning

confidence: 99%

What adolescents living with long-term conditions say about being involved in decision-making about their healthcare: A systematic review and narrative synthesis of preferences and experiences

Jordan

Wood

Edwards

et al. 2018

Patient Education and Counseling

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Condition Self-Management in Pediatric Spina Bifida: A Longitudinal Investigation of Medical Adherence, Responsibility-Sharing, and Independence Skills

Abstract: This study highlights medical domains that are the most difficult for families to manage (e.g., skin checks). Although youth appear to gain more autonomy across time, ongoing parental involvement in medical care may be necessary to achieve optimal adherence across adolescence.

Cited by 47 publications

References 36 publications

Camp‐based psychosocial intervention dosage and changes in independence in young people with spina bifida

Camp‐based psychosocial intervention dosage and changes in independence in young people with spina bifida

Factors influencing health self-management in adherence to care and treatment among the recipients of liver transplantation

What adolescents living with long-term conditions say about being involved in decision-making about their healthcare: A systematic review and narrative synthesis of preferences and experiences

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