Family-centered interventions for children and adolescents with type 1 diabetes mellitus: an integrative review

Article information

Child Health Nurs Res. 2023;29(1):7-23

Publication date (electronic) : 2023 January 31

doi : https://doi.org/10.4094/chnr.2023.29.1.7

Aloysia Ispriantari¹, Rismia Agustina², Kennedy Diema Konlan³, Hyejung Lee^,4

¹Graduate Student, College of Nursing ․ Mo-Im Kim Nursing Research Institute, Yonsei University, Seoul, Korea ․ Assistant Professor, Department of Nursing, Institute of Technology and Health Science, Malang, Indonesia

²Graduate Student, Department of Nursing, College of Medicine, National Cheng Kung University, Tainan, Taiwan ․ Assistant Professor, School of Nursing, Faculty of Medicine, Lambung Mangkurat University, Banjarbaru, Indonesia

³Graduate Student, College of Nursing ․ Mo-Im Kim Nursing Research Institute, Yonsei University, Seoul, Korea ․ Lecturer, Department of Public Health Nursing, School of Nursing and Midwifery, University of Health and Allied Sciences, Ho, Ghana

⁴Associate Professor, College of Nursing ․ Mo-Im Kim Nursing Research Institute, Yonsei University, Seoul, Korea

Corresponding author Hyejung Lee College of Nursing, Yonsei University, 50-1 Yonsei-ro, Seodaemun-gu, Seoul 03722, Korea TEL: +82-2-2228-3345 FAX: +82-2-392-5440 E-MAIL: hlee26@yuhs.ac

Received 2022 September 13; Revised 2022 October 24; Accepted 2022 December 26.

Abstract

INTRODUCTION

Children and adolescents are particularly vulnerable to the sequelae of type 1 diabetes mellitus (T1DM) because they have underdeveloped bodies and emotions with which to meet the rigorous requirements for medication and everyday monitoring [1]. The International Diabetes Federation has estimated that the number of children and adolescents (0-19 years) with T1DM was 1.2 million globally in 2021, with about 184,100 new cases being diagnosed annually [2]. T1DM is a serious condition where the blood glucose level is too high because the body cannot produce the hormone insulin for sugar control [3]. T1DM usually occurs when pancreatic beta-cells are destroyed, or cannot produce sufficient insulin to meet the body's demands [2]. This resultant lack or insufficient insulin production leads to high blood glucose levels. Increased blood glucose leads to microvascular and macrovascular complications, and increases in glycated hemoglobin (HbA1c), and indicator of glycemic control [2].

To control the adverse effects of T1DM on children and adolescents, a concerted effort must be tailored towards reducing complications, promoting recovery, reducing blood glucose levels, and improving HbA1c [3]. The guidelines of the International Society for Pediatric and Adolescent Diabetes (ISPAD) indicate that the management of T1DM in children is aimed at maintaining HbA1c <7% [3]. Interventions to reduce the complications of diabetes in children and adolescents must include insulin management, nutrition, exercise, education, and self-monitoring [4]. These measures for children require continuous support and monitoring from parents and caregivers. Therefore, it is essential for a patient's family to play an active, optimal role in ensuring proper diabetes management during childhood and adolescence [5]. Parents' premature withdrawal from their diabetes management role has been found to worsen children's health outcomes, whereas their constant support and monitoring improve health outcomes [1]. Families play an important, unique role in caring for children with T1DM at home. Family-centered care as a philosophy in pediatric nursing supports and promotes the physical and physiological health development of families of children with special needs, including T1DM [6]. Family-centered interventions on children with T1DM are aimed at delaying the onset of complications by controlling glycemic levels and promoting children's health [7]. The specified method in these interventions is the participation and supervision of family members, especially parents, at home [7].

Increasing focus has been given to family-centered interventions to support patients' families in improving their physical and psychological health outcomes and overall experience during T1DM management [8]. Family-centered interventions refer to parental participation in care, the development of respectful and trusting partnerships, and information sharing between family members who provide and receive care [9]. Family-centered interventions are an acceptable healthcare approach and constitute an effective method of improving the quality of health outcomes and bringing satisfaction to both families and health professionals [10]. Reviews of family-centered interventions have reported positive outcomes among families having children with special conditions, including cancer [11], asthma [12], special needs [13], and T1DM [14]. This review focuses on family-centered interventions aimed at improving health outcomes for children/adolescents and parents, especially regarding diabetes management and glycemic control.

A previous systematic review of randomized controlled trials (RCTs) on family-centered interventions in children with T1DM reported varied outcomes for HbA1c, family relationships, and family conflict [14]. However, that systematic review by McBroom and Enriquez [14] was conducted over a decade ago. Family interventions may since have been influenced by the current fast-growing use of technology to manage chronic diseases. Therefore, it is critical to identify and appropriately situate the factors that currently influence family interventions among children with T1DM. This review shows the current development of family-centered interventions for children with T1DM, while noting the effectiveness of those interventions in improving the outcomes of diabetes management for both children with T1DM and their parents.

METHODS

3. Search Results and Screening

From the six databases (EMBASE=436, Medline=112, CEN TRAL=1,441, CINAHL=204, Scopus=11, Web of Science=542), 2,746 article results were imported and merged into the End-Note reference manager. Afterward, duplicate articles were removed either automatically (n=799) or manually (n=23), resulting in 1,947 articles. Two authors independently assessed the titles and abstracts retrieved to identify potential papers for inclusion. The total number of excluded articles was 1,911. After retrieving 36 articles, the authors examined the full-text papers. Any disagreements among the authors were resolved through discussions until consensus was reached. Finally, the authors included 9 studies. The selection process for this review is shown in a PRISMA flow diagram (Figure 1).

Figure 1.

PRISMA flow diagram of the screening process.

5. Quality Appraisal

The authors used the Joanna Briggs Institute (JBI) critical appraisal tool for RCTs to assess the quality and eligibility of the studies included in this integrative review. This appraisal tool is specified for RCTs to evaluate the methodological quality and the risk of bias for each included study. It has 13 items: 1) Was true randomization used for assignment of participants to treatment groups? 2) Was allocation to treatment groups concealed? 3) Were treatment groups similar at the baseline? 4) Were participants blind to treatment assignment? 5) Were those delivering treatment blind to treatment assignment? 6) Were outcome assessors blind to treatment assignment? 7) Were treatment groups treated identically, other than the intervention of interest? 8) Was follow-up complete and if not, were differences between groups in terms of their follow-up adequately described and analyzed? 9) Were participants analyzed in the groups to which they were randomized? 10) Were outcomes measured in the same way for treatment groups? 11) Were outcomes measured in a reliable way? 12) Was appropriate statistical analysis used? 13) Was the trial design appropriate, and any deviations from the standard RCT design (individual randomization, parallel groups) accounted for in the conduct and analysis of the trial? We can identify each item with the answer "yes", "no", "unclear", or "N/A (not applicable)". The decision to include each selected study was based on a minimum of 50% of the cut-off score, of which at least 7 out of 13 scores were "yes" from the JBI checklist. If the study has a minimum score of 70% (10 out of 13 "yes" scores), it is said to have good quality. A score range of 50%-69% (7-9 out of 13 "yes" scores) is moderate quality, and a score of less than 50% (fewer than 7 out of 13 "yes" scores) is considered to indicate poor quality. Two authors independently evaluated each study for methodological quality. Discrepancies in evaluation results were resolved through consensus. The results of the quality appraisal of the studies are shown in Table 1.

Table 1.

Results of Critical Appraisal of the Studies Using the Joanna Briggs Institute (JBI) Critical Appraisal Tool for Randomized Controlled Trials (RCTs) (N=9)

RESULTS

1. Study Characteristics

Out of the nine RCTs included in this integrative review, six studies were conducted in the United States (US) (66.7%) [24-29], two in the United Kingdom (UK) [30,31], and one in Denmark [32]. All the studies targeted families with children under the age of 18 years. Four studies (44.4%) included adolescents [27,29,31,32], and four (44.4%) included both children and adolescents [24,26,28,30]. Only one study targeted families with children aged 1 to 12 years, and this intervention only included the parents [25]. The number of participant families ranged from 32 [26] to 390 [28]. Seven studies reported that diabetes duration was more than 4 years, but two studies did not report data regarding duration since diagnosis [25,26]. Eight studies reported that the children had an uncontrolled glycemic status (A1C >7.5%), while one reported that their glycemic control had improved [25]. Five studies reported that most of the caregivers involved in the interventions were mothers, with a percentage range of 69%-97% [24,26,27,29,30]. The remaining four studies did not report the caregivers' demographic characteristics [25,28,31,32]. The extracted information from the selected studies is shown in Table 2.

Table 2.

Analysis of Research Articles According to General Characteristics (N=9)

3. Key Findings

Using thematic data analysis, two broad themes were identified 1) the type of interventions, and 2) the effectiveness of interventions. These themes identified as related to familycentered interventions in children and adolescents with T1DM were appropriate, as integrative reviews allow the formation of research themes [20,21].

1) Type of interventions

Family-centered interventions have evolved and integrated different approaches and models to maximize their benefits. In this review, all studies had more than one method of intervention. To facilitate identification, the authors classified the types of interventions based on the main method used. The results are shown in Table 3. The key interventions were categorized into three groups: non-technology-based interventions (n=4), technology-based interventions (n=2), and combined technology- and non-technology-based interventions (n=3). Each intervention type is described in detail below.

Table 3.

Analysis of Family-Centered Interventions for Children and Adolescents with T1DM(N=9)

(1) Non-technology-based interventions (n=4)

In this category, we identified two different approaches of non-technology-based interventions: skills training interventions (n=2) and educational interventions (n=2).

① Skills training interventions (n=2)

The term "skills training" in this study refers to programs that teach coping, problem-solving, and stress management techniques for children and adolescents with T1DM [33]. The goal of diabetes skills training is to develop an extensive skill set for managing diabetes in challenging situations [33]. In this review, two skill training interventions were identified: guided self-determination youth (GSD-Y) and coping skills training (CST) [25,32].

GSD-Y was delivered individually, and CST was delivered in groups [25,32]. GSD-Y focused on the patient's ability to recognize barriers to managing diabetes and communicate these to health professionals. Meanwhile, CST helped parents cope well in problematic situations, increased their self-efficacy, and promoted positive behavior. GSD-Y was delivered when the families made regular clinic visits, and sessions were mostly given to the child only. CST consisted of two to six families, and both parents and children participated in the sessions, with both parents being advised to participate. However, in the CST study, data from only one parent per child was included in the analysis, from which we assumed that the authors considered both parents as one unit. GSD-Y had eight 60-minute sessions, and CST had six 90-minute sessions [25,32].

② Educational interventions (n=2)

Diabetes education is an essential key for understanding and improving diabetes management skills for families with children who have T1DM [34]. In this review, the authors identified two interventions based on education: the Families and Adolescents Communication and Teamwork Study (FACTS) and the Child and Adolescents Structured Competencies Approach to Diabetes Education (CASCADE) intervention [30,31].

The FACTS combined conventional diabetes self-management education and family communication training focused on improving parental involvement and glycemic control. CASCADE used a modified psychology-led intervention through motivational interviewing and solution-focused brief therapy, focused on improving behavior changes in children and families regarding diabetes management. Both interventions organized the families into small groups (three to six families per group), who each attended four sessions. The FACTS and CASCADE had the same themes in their modules regarding food/blood glucose, including counting carbohydrates and blood glucose checks in the first two sessions. CASCADE included adjusting insulin doses in the third module, followed by a module focusing on living with diabetes. However, in the FACTS, adjusting insulin doses was discussed in the second module (along with blood glucose checking), followed by teamwork/communication, interdependence/sharing responsibility, and letting go in the last two sessions [30,31]. This difference was because the FACTS program focused on providing not only diabetes self-management education, but also family communication; therefore, the program included family communication training [31].

2) Technology-based interventions (n=2)

The use of technology in family-centered interventions for children with T1DM has garnered varying interest over the years. In this review, the authors identified two interventions based on technology and the following skills training approaches: Telehealth Behavior Therapy (TBT) and Web-Delivered Multicomponent Intervention (WebRx) [26,29].

TBT used telephone calls as a medium to improve parent-child relationships, decrease familial conflict, and address four primary barriers to adherence to diabetes management, while WebRx used web conferencing to improve selfmonitoring and working memory in adolescents and improve parents' monitoring of their children's diabetes management. In TBT, both the parent and child participated in each session together. In WebRx, the child attended almost all sessions, while the parent was included for a few sessions only. The parent only attended some sessions because WebRx primarily focused on diabetes self-management in adolescents. Therefore, the parent was responsible only for supervising the child's development and managing child-parent relationships to reduce family conflict. TBT had 36 sessions, which were 15 to 20 minutes long, while WebRx had 15 sessions that were each 20 minutes long [26,29].

3) Combined technology- and non-technology-based interventions (n=3)

Interestingly, aside from using technology and media to deliver interventions, we found that technology can support the implementation of non-technological-based interventions. In this category, we identified three studies combining technology- and non-technology-based interventions. All were based on skills training approaches, which were Flexible Lifestyles Empowering Change (FLEX), WE-CAN Manage Diabetes, and Family-Centered Tailoring Diabetes Self-Management (FCT) [24,27,28].

FLEX aimed to promote self-management and improve blood glucose control, WE-CAN Manage Diabetes aimed to improve diabetes management through family collaboration and a problem-solving approach, and FCT aimed to provide solutions to eliminate the barriers to self-management associated with worsening glycemic control and quality of life in both parents and children with T1DM. In WE-CAN Manage Diabetes and FLEX, the intervention was delivered when the families made regular clinic visits. However, in WE-CAN Manage Diabetes, the parent and child were included together in each session. In FLEX, sessions were mostly given to the child only, with the parent only participating in some parts of the sessions. FCT was delivered using groups consisting of two to six families, and both the parent and child participated in the sessions. WE-CAN Manage Diabetes had six to seven 30-minute sessions, FLEX had four 40-to 60-minute sessions, and FCT had four 75-minute sessions. WE-CAN Manage Diabetes used technology to conduct assessment interventions and health advisor weekly conferences by telephone. FLEX used technology as a reminder or motivational booster (text messaging, alarms, and calendar), and FCT used video conferencing technology during the facilitators' initial training and meetings through communication technology [24,27,28].

DISCUSSION

This integrative review assessed family-centered interventions incorporated into the care of families with children and adolescents with T1DM. The main themes of emerging family-centered interventions involved skills training, health education, and integrating technology in the care of children and adolescents with T1DM. The critical factor identified in this review that differentiates it from that conducted by McBroom and Enriquez [14] over a decade ago is the use of technology in family-centered interventions for children and adolescents with T1DM. Technological advances have been critical tools, especially in the last two decades, and have been used in health and chronic disease management for diagnosing, monitoring prognosis, issuing reminders for medication and treatment, and promoting the general well-being of people with chronic diseases. Family-centered interventions have received considerable attention and have effectively improved how people with diabetes are managed at home and within health facilities. Healthcare professionals must leverage this growing trend in technological advancement by incorporating simple internet-based or tools-based interventions that will promote family involvement and monitoring of children and adolescents with T1DM. These measures can also be used as reminders for children and adolescents to take their medications or to keep their hospital follow-up appointments.

The authors identified considerable variation and complexity in the methods used to implement family-centered interventions in terms of the outcome variables, measured variables, measurements, and methods adopted. This poses a challenge for conducting a meta-analysis of study outcomes due to the heterogeneity of the measured variables for each intervention. Due to these challenges, an integrative review of family-centered interventions on children and adolescents with T1DM was deemed appropriate.

The authors found that family-centered interventions for families with children and adolescents with T1DM had satisfactory results regarding decreased HbA1c as a primary outcome in three studies. The results in each study were different and ranged from significant differences between the intervention and control groups [24,28,29], and pre- and post-intervention changes [26] to no significant changes at all [25,27, 30-32]. The differences in the results regarding HbA1c, the primary indicator of successful management of diabetes in children, are influenced by many factors, including failure to attend interventions [30-32], insulin dosing behavior (as insulin deficiency causes persistent hyperglycemia in T1DM) [27], and participants' heterogeneity regarding the intervention response and HbA1c [24,27]. Grey et al. [25] and Husted et al. [32] argued that because adolescents' HbA1c tends to worsen from the age of 10 to 16-17 years, an increase in insulin resistance related to puberty can influence HbA1c outcomes. Therefore, the worsening of HbA1c during puberty must be considered as a major focus when managing children's T1DM [25,32]. Hopefully, earlier interventions will improve the likelihood of preventing an exacerbation of HbA1c during puberty [30].

According to the American Diabetes Association, family involvement in diabetes management is an integral part of optimizing diabetes mellitus control indices during childhood and adolescence. Therefore, a family-centered approach should be applied to improve the quality of diabetes care [35]. Children with T1DM depend entirely on family involvement for effective management. As children become adolescents, the role of family members decreases, and adolescents begin to take responsibility for managing their diabetes [7]. In this family situation, pediatric nurses have additional duties, extending beyond simple care to advocacy for the other family members, especially parents, to supervise and follow-up on their children's diabetes management at home [7]. Therefore, as these children grow, they must be empowered to self-manage and monitor their blood sugar levels independently.

The authors also noted that in addition to improving diabetes management, family-centered interventions improved parent-child relationships and reduce miscommunications [26,27,29,32]. Adolescence is a vulnerable period for adolescents with T1DM. During this period, adolescents start learning diabetes self-management, but parents and adolescents have different expectations. Parents feel their children cannot do all these tasks, while children think their parents control them too much. This disconnect leads to miscommunication and family conflict [36]. The family-centered interventions in this review had effects on diabetes management, such as increased adherence [26,27], increased motivation [32], increased diabetes self-management behaviors [27,31], decreased diabetes-related family conflict [27,29], increased self-monitoring of blood glucose frequency in adolescents, and increased frequent parental reviews of adolescents' glucometers [29]. It is possible that these effects result from improved knowledge and acceptance of the disease and its management process. The results of these combined outcomes facilitate positive outcomes in terms of blood glucose levels, along with improved living conditions for children with T1DM [26,29]. This further emphasizes the need to use collaborative means to provide interventions to families of children with T1DM. Improving families' knowledge and acceptance of diabetes interventions for children is therefore essential when planning family interventions.

Furthermore, family-centered interventions had significant effects on children, including improved quality of life and increased cognitive, affective, and behavioral abilities to resolve problems in everyday living [27]. However, children's quality of life improvement only increased according to self (children's) reports. Nonetheless, self-reported improvement in children's emotional support and improvement in health is a more reliable measure than reports from parents [37]. In addition, the parents of children with T1DM may have trouble distinguishing between normal and diabetes-related behavior, making it difficult to assess well-being accurately [38]. One study reported this improvement [27], while three other studies reported no improvement in children's quality of life [24,30,31]. This may have been due to the low participation rate, as only 50%-53% of participants attended all sessions [30,31]. The intervention period also had an effect because interventions held only once in 3 to 4 months are likely to be less effective compared to weekly interventions [24]. Diabetes management interventions involving the families of children with T1DM can significantly improve their health. Parents of children with T1DM are more likely to experience physical and psychological problems and tend to be more stressed and worried, as well as have more family conflict and less social interaction [39]. Only two studies reported outcomes regarding parents and found positive effects on improving parents' quality of life and coping skills [24,25].

Family-centered interventions are critical in the care of children and adolescents with diabetes. These interventions must be integrated into appropriate nursing-based theories for effective implementation while providing a basis for the continuous monitoring of the impact of such interventions. These integrations affect glycemic control, diabetes management, and quality of life for children with T1DM and their families [28]. One of these integrations included up-to-date developments in technology. Since the early 1990s, technology has been applied to diabetes management interventions. Early interventions were based on telephone communication, which in later years began to evolve [40]. Technology-based interventions may be the solution to overcoming the difficulties of face-to-face interventions because of the improved geographical and economic conditions and efficient implementation [26,29]. Five studies in this review integrated technology into their interventions. Two integrated a telehealth and web-based approach to implement their primary interventions [26,29], and three used technology for telephonic follow-ups and health advisors' weekly conferences, communication of reminders or motivational boosters, and video conferencing during the facilitators' initial training sessions and meetings [24,27,28]. Using technology to assist clients at home without scheduling face-to-face consultations can promote high completion rates and low costs, which will improve glycemic control; therefore, these methods should be integrated into regular diabetes care [26,29].

This review highlighted several issues requiring further attention regarding family-centered intervention implementation with children and adolescents with T1DM. First, limitations include insufficient staff skill levels following short and insufficient training periods before the intervention [30], the length of time taken by the staff to deliver the interventions [28], factors that hindered the staff from completing all intervention sessions [27], and a lack of staff to deliver the interventions [30]. Second, the interventions, especially those with technology integration, were expensive and complex; therefore, such interventions were only accessible to the middle class [29]. Third, there were issues regarding the participants. These included the heterogeneity of participants, as the interventions implemented only targeted specific needs [31]. In addition, the lack of data in incomplete participant evaluation sheets inhibited the evaluations of intervention effects [32]. There was insufficient support for empowerment and enduring motivation during the interventions [31]. One intervention was delivered in coordination with routine clinic visits, which were only conducted once every 3 to 4 months. This led to the results not being as visible compared to interventions delivered once a week or over several weeks [24]. Familycentered interventions should be designed to integrate technology such as continuous glucose monitoring and hybrid closed-loop insulin pumps, which can be vital to future interventions. moreover, the ongoing coronavirus disease 2019 situation has highlighted opportunities for communication technology to increase intervention efficiency, especially regarding health care for families who live far from clinics and cannot make routine check-up visits.

This integrative review has the following limitations. First, the literature search only included English-language studies; therefore, this review did not include studies in other languages that described family-centered interventions. As a result, the studies in this review only came from three countries on two continents, and differences in culture and values between the countries may have affected the outcomes of the interventions. Second, the findings of this review covered a wide range of variation in methods, measurements, and outcomes, which led to difficulties in synthesizing. However, the use of integrative design methods was critical in incorporating all the different facets of the themes generated from the data [20,21]. To overcome this challenge, the authors were meticulous and consulted each other often to be confident of the integrated results. Where discrepancies existed in authors' opinions, a third person was consulted to arbitrate, and decisions were arrived at using consensus. Finally, the development and usage of templates for quality appraisal and data extraction were critical in integrating all study findings.

CONCLUSION

This review identified the effects of family-centered interventions on children and adolescents with T1DM. Familycentered interventions have improved the health outcomes of children and parents, especially regarding diabetes management. One critical and significant finding of this study is the use of technology to promote family-centered interventions in children with diabetes and improve their health outcomes. With the increasing development of technology, family-centered interventions integrating technology may create good opportunities for positive outcomes in children and adolescents with T1DM. Therefore, future research should focus on testing the efficacy and cost-effectiveness of technology-based family-centered interventions for improving the health outcomes of children and adolescents with T1DM. Additionally, nursing-based family-centered interventions must integrate other approaches, theories, or models in development and testing. This will ensure that those interventions address the individual families' cultural, socioeconomic, and geographical characteristics in order to achieve better health outcomes.

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