Two-Step Integrative Education Program and mHealth for Korean Children with Spina Bifida: A Quasi-Experimental Pre-Post Study

Highlights

• mHealth was combined with an intervention program to enhance self-management skills.

• School-aged children with spina bifida participated in this novel study.

• Integrative education and mHealth are potentially effective for self-management.

• mHealth intervention could be acceptable for school-aged children with spina bifida.

• Psychosocial factors should be considered when developing an intervention.

Abstract

Purpose

Self-management of the daily tasks associated with condition management is an important goal for children with spina bifida (SB)to achieve for adolescence. This study investigated the effects of a two-step self-management improvement program including an onsite, integrative education program and mHealth on children with SB based on the Individual and Family Self-Management Theory.

Design and methods

We used a pretest-posttest, quasi-experimental design with a nonequivalent control group. Open-ended questions were administered to obtain the opinions of the participants and their parents on the intervention program. The intervention effectiveness was evaluated by repeated-measures ANOVA using factors such as school adjustment, self-management knowledge, self-efficacy, self-management behavior, and quality of life measurement in 35 children with SB aged 7–12 years and their parents from July 2018 to October 2018.

Results

This intervention program did not result in a significant difference in quantitative outcomes between the experimental and control groups, but qualitatively, the children participating in this study and their parents responded positively to the self-management program.

Conclusion

The current study demonstrated the potential effectiveness of this self-management program in children with SB.

Practice implications

When healthcare providers develop an intervention for school-going children who are the digital native generation, up-to-date technological interventions, level of motivation of children, and intervention dosage should be taken into consideration.

Introduction

Spina bifida (SB) is the most frequently occurring neural tube condition worldwide (Sawin et al., 2015; Wiener et al., 2017). The prevalence of SB among children is approximately 3.5 per 10,000 in the United States (Sawin et al., 2015) and 2.6 per 10,000 in Korea (Choi et al., 2009). In general, neurosurgery soon after delivery is essential for children born with SB; this condition involves complex disabilities, including varying degrees of paralysis, bowel and bladder dysfunction, and for many slower cognitive development (Ulus et al., 2012). With improved medical and surgical care, the survival of children with SB has improved remarkably over recent decades; virtually all children born with SB survive into adulthood (Wiener et al., 2017).

This dramatic increase in life expectancy for individuals with SB has prompted both service providers and researchers to pay greater attention to self-management behaviors in these children. Particularly, researchers have emphasized the development of self-management competence among school-age children with SB (Greenley, 2010; Swanson, 2010; Yun & Kim, 2017).

The development of cognitive and fine motor functioning in the school-age years enables children in this period to better understand their condition and its management (Silverstein et al., 2005). Swanson (2010) stated that the development of enhanced self-management is especially critical for children with SB because of the projected need to manage their health issues associated with SB in adulthood, along with the lack of adult healthcare providers who are knowledgeable about SB. Inadequate efforts to develop enhanced self-management skills during the school age years could contribute to poor self-management related to SB in adulthood (Im, 2017).

Despite the importance of self-management skills among children with SB, studies have indicated that they exhibit less favorable levels of basic self-management behaviors. A study comparing the performance skills for daily living between 50 children with SB aged 6 to 14 years, and the international age norms, found that most of the children with SB showed marked deficiency in performing well-known everyday activities related to motor and process skills compared to the norm population (Peny-Dahlstrand, Åhlander, Krumlinde-Sundholm, & Gosman-Hedström, 2009). Another study reported the delayed accomplishment of basic self-management behaviors (e.g., independent toileting) by children with SB compared to typically developing (TD) peers (Davis, Shurtleff, Walker, Seidel, & Duguay, 2006).

More importantly, children with SB have been observed to have limited skills required for independent management regarding SB. The study of Choi, Im, and Han (2017) including 173 children with SB (mean age 7.83 years, range 1–17 years) showed that their bowel management was primarily performed by their parents (86.1%). In a study of 81 children with SB (mean age 6.83 years, range 1–18 years) and their mothers (Kanaheswari, Razak, Chandran, & Ong, 2011), 46 children with SB needed clean intermittent catheterization, and 88.9% of their mothers performed catheterization for their children. Only five children were able to perform self-catheterization; four aged 7–12 years, and one older than 12 years (Kanaheswari et al., 2011).

Considering the aforementioned findings, it is imperative to develop interventions to support enhanced self-management skills in school-aged children with SB. Prior camp-based intervention studies have reported that youths with SB who participated in intervention programs showed improved self-management (Driscoll et al., 2019; Holbein et al., 2013; Zimmerman et al., 2019). These studies, however, emphasized a critical issue, i.e., the positive effects of interventions wane over time indicating the need to maintain the intervention effect.

Mobile health (mHealth) is a promising method to preserve the long-term effectiveness of interventions by facilitating greater patient engagement and interaction with nurses or other healthcare providers (Niksch, 2015; Wang, Xue, Huang, Huang, & Zhang, 2017). mHealth refers to the virtual world of mobile computing and wireless devices that expands healthcare for chronic conditions beyond the healthcare provider's office (Eng & Lee, 2013). mHealth seems primed to serve young patients, complementing existing healthcare education that was not designed to teach or interact with today's technologically savvy young population. Nowadays, children and adolescents, so-called ‘digital natives,’ are most comfortable with mobile devices and are natural explorers of applications (apps) and other platforms (Niksch, 2015).

However, investigations into the effects of mHealth solutions on children are limited; much of the existing research concerning mHealth appears to concentrate on adults rather than children (Dicianno et al., 2016; Yu, Parmanto, Dicianno, Watzlaf, & Seelman, 2017). Besides, available prior intervention studies adopting mHealth for a young population have focused primarily on TD adolescents. For example, Jimoh et al. (2018) performed an intervention program using a smartphone app to facilitate diet and exercise monitoring among TD adolescents.

The number of children with chronic illness, including asthma, diabetes, and sickle cell disease, is increasing gradually; >1 in 4 children are living with a chronic condition (Van Cleave, Gortmaker, & Perrin, 2010). However, minimal efforts have been made to adapt mHealth solutions for children with chronic conditions, and no published studies have demonstrated the effects of mHealth on children with SB to date. Children with SB and other chronic conditions could benefit from interventions combined with mHealth to enhance self-management skills.

Korea is known as a highly wired country, and Korean children are likely to be exposed to mobile devices from an early age. According to the Korea National Panel Data (Korean Media Panel Survey Research, 2018), 81.2% of Korean elementary school children in upper grades were reported to have smartphones. Interventions using mHealth are expected to have positive effects on Korean children with SB. Responding to the issues from prior studies, we conducted an intervention program incorporating mHealth that aimed to improve self-management skills among Korean children with SB.

Overall, the current study and the core elements of the intervention program were grounded in the Individual and Family Self-Management Theory (IFSMT) (Ryan & Sawin, 2009). According to the IFSMT, self-management is a multidimensional and complex phenomenon including risk and protective factors within the context of condition-specific physical and social environments and characteristics of individuals/family members as well as the process of self-management, specifically, knowledge and beliefs, self-regulation skills and abilities, and social facilitation. The IFSMT also notes that self-management affects short- and long-term outcomes (Ryan & Sawin, 2009). Interventions targeting the context can reduce risk or foster conditions that support enhanced self-management while interventions aimed at the process can improve knowledge and beliefs, an individual's use of self-regulation behaviors, or social facilitation (Ryan & Sawin, 2009).

Based on the IFSMT, the contents of the current intervention program were developed to diminish possible risks and strengthen protective factors experienced by children with SB within the home and school environment (context), as well as improve self-management knowledge regarding SB (process). Moreover, we measured context (school adjustment), process (self-management knowledge and self-efficacy), and outcome variables (self-management behaviors and health-related quality of life) to identify the effects of the intervention on the children.