Kalsoom Akhter,1 Triece Turnbull,2 David Simmons3
1 Department of Psychology, City University London, London, UK
2 Faculty of Health and Society, University of Northampton, Northampton,UK
3 School of Medicine, Western Sydney University, Campbell town, New South Wales, Australia
Address for correspondence: Dr Kalsoom Akhter
School of Arts and Social Sciences, Department of Psychology, City
University London, Northampton Square, London EC1V 0HB, UK
E-mail: kalsoom.akhter.1@city.ac.uk
https://doi.org/10.15277/bjd.2018.177
Objective: Although interventions which provide psychosocial support can have a positive impact on diabetes self-care, the impact of family/peer- and theory-based interventions has not yet been clearly identified. This systematic review investigates the randomised controlled trials (RCTs) employing family/peer-based interventions (based on theoretical/ therapeutic frameworks) which aim to improve adolescents’ glycaemic control, psychosocial and/or behavioural functioning.
Methods: The Cochrane Library, database of systematic reviews, database of abstracts of reviews of effectiveness and Health Technology Assessment database were searched (from start date until February 2016) for any previously conducted systematic reviews. Seventeen RCTs/interventions were included. The literature was also identified by contacting the leading researchers. Glycaemic control was measured by HbA1c and psychosocial functioning by measures of self-care, knowledge and communication, collaboration/teamwork, quality of life, problem solving, social functioning and family functioning. Only those interventions which reported the use of theories/therapies to manage type 1 diabetes and other psychosocial issues among adolescents (aged 12–17) were included in the present review. Data summarising the key features of the interventions was extracted from each article. Where possible, the effect sizes were calculated.
Results: The effect sizes could be computed for HbA1c in six of the 17 interventions. The overall outcomes indicated that interventions including parents have a small to large effect size on a variety of diabetes management and psychosocial outcomes. This review identified interventions, mostly including parents and rarely including peers.
Conclusion: The results of this systematic review demonstrate that multicomponent interventions may be more successful for adolescents than ones that just focus on one aspect. Effectiveness is also greater if they demonstrate inter-relatedness with the various aspects of diabetes management. Short-term behavioural approach-based interventions promote improvements in parent/adolescent relationships. Outreach home-based interventions could be a more accessible alternative for intervening with families than office/hospital-based interventions. This approach may also be more acceptable to adolescents and their families. There is a need to develop evaluated interventions for adolescents involving parents. Development should involve stakeholders (ie, adolescents, their families and healthcare professionals) to co-design potentially cost-effective and feasible interventions in the context of NHS diabetes services.
Br J Diabetes 2018;18:51-65
Key words: family/peer-based interventions, psychosocial and behaviouraltheories/therapies, diabetes and psychosocial functioning, type 1 diabetes, adolescents
Type 1 diabetes requires managing an intensive and challenging regimen. This includes integration of daily medical tasks (insulin injections, frequent blood glucose tests) and lifestyle modifications (close monitoring of food intake and regular exercise) in everyday life.1,2 Although near-normal blood glucose control may decrease the risk of several long-term diabetes complications in individuals with type 1 diabetes,3,4 adolescents often have difficulty juggling all aspects of such a demanding treatment regimen. Parents and other family members are especially important for adolescents with type 1 diabetes5 to encourage and provide support for treatment-related behaviours.2 Anderson and colleagues6 showed that a low-intensity office-based family intervention for youths with type 1 diabetes increased parental involvement, while decreasing diabetes-related family conflict.6,7
Research has highlighted that, during adolescence, young adults strive for autonomy and parents' attempts to monitor/control their children’s treatment may be viewed as intrusive or nagging. Such attempts may result in adolescents becoming resistant, defiant and non-compliant.8,9 Research supports the need for adolescents and parents to work cooperatively, with open communication and flexible problem-solving skills, in order to negotiate shared responsibility for treatment management.10–12
On the other hand, research has shown that age needs to be considered and that support needs to occur at both home and school. Consequently, both family members and peers can facilitate optimal diabetes management.2 Support from peers has been rated as important by adolescents with type 1 diabetes13; peers are more likely than family members to provide companionship and emotional support in relation to diabetes care.14 In one structured group intervention, adolescents and their friends demonstrated higher levels of knowledge about diabetes and support, as well as a higher ratio of peers to family support. In addition, parents reported a decrease in diabetes-related conflict.15 Nonetheless, the shift from parental to peer support is not absolute, as adolescents continue to seek guidance and advice from their parents.16 Numerous theoretical and therapeutic frameworks have been devised to explain and adapt the relationship between patients’ perceptions and their behaviour (see Box 1 for a brief overview).17
No systematic review exists relating to the currently explored area. Therefore, the purpose of this systematic review is to investigate the effects of family/peer-based interventions (involving theoretical frameworks) on type 1 diabetes management and psychosocial functioning among adolescents.
The Self-Regulation Model of Illness (SRMI) provides a framework for understanding how individual symptoms and emotions experienced during a health threat or diagnosis influence perception of illness and guide subsequent coping behaviour.18,19 The SRMI may be useful to further understanding of type 1 diabetes patients’ behaviours related to their condition and psychosocial functioning. The SRMI theory suggests that individuals search to understand their illness or disease threat by developing an understanding of what the illness is, what it means, its causes, its consequences, how long it will last, and whether it can be cured or controlled. This understanding (or illness representation) is not necessarily scientifically or medically validated, but formulated from personal experience (physical symptoms and emotions), social influences, and/or interaction with healthcare providers. Individuals are thought to reduce their health risk or change their health behaviour in ways consistent with their own illness representation.20
The goal of patient empowerment is to build up the capacity of patients to help them to become active partners in their own care, to enable them to share in clinical decision making, and to contribute to a wider perspective in the healthcare system.21 Empowerment is a positive concept that refers to the patient's facilities, abilities and surrounding environment.21 Power is an inner feeling of self-awareness and self-education.22 Empowerment is achieved through interaction between people and causes interpersonal and intrapersonal communications.23 It is a practical strategy in improving health conditions,24 which includes skills (eg, solving problems, boosting self-confidence and creating strategies to create mutual trust).25 The empowerment process begins with providing the patient with information and education and ends when he/she can actively participate in making ‘smart’ decisions about his/her disease.26 With this approach, health professionals facilitate patients to make informed decisions regarding their particular conditions. Patients are encouraged to fully participate in their treatment process by sharing their knowledge and experiences and making decisions through mutual assistance. Empowerment discovers and expands one's inner capacity to accept responsibility towards their health. It is an intervention or a strategy to help people change their behaviour in order to adhere to the treatment plan.27
Self-efficacy (SE) was first proposed by Albert Bandura, who suggested that self-efficacy is a belief of individuals in their abilities to carry out a successful practice and is a theory in itself, as well as a structure of the social cognitive theory. The self-efficacy theory argues that people will take action when they believe they are able to do it and will avoid actions when they believe they may fail. Self-efficacy is the prerequisite of a behaviour and should be considered as an independent part of basic skills.28 In total, Bandura believes that self-efficacy (or ‘mastery’) is the main structure in predicting individuals’ behaviour change and usually the ones that show a high level of behavioural changes have higher efficacy.29 Self-efficacy has a prominent role in diabetes self-management and predicts its outcome.30
Social Cognitive Theory (SCT) started as the Social Learning Theory (SLT) in the 1960s by Albert Bandura and it was developed into the SCT in 1986. SCT is based on the concept that learning is affected by cognitive, behavioural and environmental factors.31 In contrast to the traditional psychological theories that emphasised learning through direct experience, Bandura posited that virtually all learning phenomena can occur by observing other people’s behaviour and its consequence.32
Positive psychology suggests understanding the role of positive traits, experiences and environmental factors that contribute to wellness. Given the wide variability in how patients with chronic illness are able to manage their daily behaviours needed to maintain physical and mental well-being, positive psychology has provided a particularly useful framework to identify the factors that promote successful disease management.33
Social ecology theory underlying Multi-Systemic Therapy (MST)
Bronfenbrenner's theory of social ecology34 serves as the conceptual foundation of MST. Youth are viewed as nested within multiple systems (eg, family, peer, school, neighbourhood) that have direct (eg, parenting practices) and indirect (eg, neighbourhood context affects parenting practices) influences on behaviour and interactions among individuals are reciprocal in nature. On a clinical level, several relatively compatible theoretical perspectives have influenced the development of interventions used in MST. These include Minuchin's structural formulations (eg, attention to boundaries and repeated patterns of interaction that regulate family members' behaviours),35 Haley's strategic formulations (eg, importance of understanding recursive sequences of behaviour and family hierarchy),36 social learning theory (eg, importance of modelling and reinforcement in influencing behaviour) and cognitive behavioural theory (eg, problem solving skills). Interventions derived from these approaches are integrated into the broader social ecological framework that underlies MST.37
Two predominant models of family functioning are the behavioural and systems models. Behaviourally oriented theorists have explained family processes in terms of molecular contingency arrangements, social learning principles and behaviour exchange theory.38–40 Family systems theorists have explained these same processes in terms of circular cybernetic systems with an emphasis on molar-level structural analysis.41,42 While there are definite differences between these two theoretical approaches, they both share a common emphasis on observable regularities in interpersonal processes. Robin and Foster43 have integrated concepts from both schools in building a comprehensive behavioural systems theory of family functioning, adding notions of contingency arrangements, social learning principles and cognitive behavioural theory to the analysis of the family as a circular system with a definite structural configuration.
Eligibility criteria
Studies were included if they were RCTs, used any theoretical/therapeutic frameworks and included adolescents with type 1 diabetes (age <18 years), their peers or friends and parents or families. Two domains of outcome measures were extracted: diabetes functioning/medically performing/HbA1c and psychosocial functioning. Studies were excluded if they involved improving education alone, had no explicit theoretical background,6,7,44–46 were not a RCT,15,46–50 included children only51,52 or adults53 and did not involve parents or peers.
Search strategy and data extraction
A systematic computerised search was performed in CINAHL, E-journals, Econlit library, Information Science and Technology abstracts, Psycharticles, Socindex, Medline, PsychInfo, Embase, Psychological and Behavioural Sciences Collection, Socindex and Cochrane Central Register of Controlled Trials (from their start date to February 2016). The National Research Register database was searched for unpublished literature and information on unpublished or in-progress research was requested via contacting leading authors. The reference lists of the retrieved studies and other key reviews (eg, Hampson et al,54) were checked in order to capture other relevant publications (see Appendix A for search terms at www.bjd-abcd.com).
The first researcher independently reviewed all titles and abstracts in two phases. First, the retrieved titles and abstracts were reviewed to identify relevant studies. The full texts of retrieved studies were then read to determine eligibility. A second researcher reviewed all the articles in order to determine the inter-rater reliability in inclusion/exclusion of studies. Any discrepancies or differences in opinion were resolved by consensus. Information from the included articles was extracted using a standardised form. The extraction process identified the following areas from each article: study and country, study population, theoretical frame work, time to follow-up, outcome measures and results.
Quality assessment
A tool to assess the methodological quality of quantitative studies was used, which was developed and tested by the Effective Public Health Practice Project.55 Each study was appraised according to the six criteria and rated as ‘strong’, ‘moderate’ or ‘weak’. The reviewers independently scored all relevant articles for methodological quality. Any discrepancies were resolved through discussion. Ten studies were strong and seven were moderate,58,59,63–65,70,71 with none being weak in terms of their quality (see Table 1).
Search results
The search of the databases retrieved 3,074 records. Following broad and narrow screening, 17 papers were considered suitable for inclusion in the review.56–72 A study flow diagram of included and excluded studies is provided in Figure 1.
Included studies also differed with regard to the theories, durations and outcome measures (see Table 2). Due to this heterogeneity, it was not possible to perform a meta-analysis. Instead, findings are presented in a narrative format.
Study characteristics
The selected studies varied considerably with regard to their study characteristics (see Appendix B at www.bjd-abcd.com). Studies were conducted between 1985 and 2014, but the majority were published after 2000.
Efficacy of theory-based interventions on diabetes and psychosocial functioning
The majority of the reviewed studies involved parents/families except two involving peers.62,70 The reviewed studies were group-based except the one by Newton and Ashley,70 which was a web-based intervention. This section will draw attention towards the efficacy of the interventions based on various theories/therapies mentioned in Box 1. These theories/therapies were used to understand the behaviours influencing the diabetes and psychosocial functioning of the trial participants.
Social learning and self-efficacy theory (involving peers and adolescents)
Two studies used and evaluated the value of both theories.62,70 The study by Kaplan et al62 was based on social learning and self- efficacy theory29 to improve social learning skills and resist peer pressure. Training based on theoretical frameworks produced better glycaemic control at 4 months compared with the control group. There were positive (but non-significant) correlations between social support satisfaction and HbA1c, as well as knowledge and HbA1c. Similarly, there was a positive and significant correlation between the Mean Ends Problem Solving test (MEPS) and HbA1c (p<0.01). These correlations suggest that those who were most satisfied with their networks of social support actually had the poorest glycaemic control. The results of this study also highlight the importance of behaviour in the management of type 1 diabetes rather than just focusing upon knowledge.
Similarly, Newton and Ashley70 conducted a web-based intervention using self-efficacy theory to improve compliance with treatment protocols and psychosocial functioning. This website seemed to provide problem-solving activities, knowledge about diabetes and a source of social support as well. Self-efficacy was significantly correlated with positive outcome expectations, diabetes self-management and quality of life for youths. In an exit survey, 90% of participants indicated that they were more willing to comply with their treatment protocol after participating in the intervention.
Empowerment approach (involving parents and adolescents)
The study by Viklund and colleagues63 aimed to determine the effects of an empowerment programme on glycaemic control and empowerment and to study the role of parental involvement. Overall, this empowerment programme showed no beneficial glycaemic or empowerment effects 6 and 12 months after the intervention.
Social cognitive theory, self-regulation model (families and adolescents)
Nansel and colleagues61 designed a multicentre group study grounded in social cognitive and self-regulation theories to help families improve diabetes management by facilitating problem-solving skills, communication skills and appropriate responsibility sharing. A significant improvement in glycaemic control was seen in the 12–14-year age group from baseline at the 24-month interval, but not in adherence.61
Positive psychology (involving parents and adolescents)
Jaser and colleagues71 focused on testing the feasibility and acceptability of a positive psychology intervention to improve adherence. No main effects for treatment were observed at the 6-month follow-up. However, there was a significant association between adolescents’ levels of positive effect and measures of adherence, including self-report and meter downloads of glucose monitoring. Overall, the high levels of participation and retention indicate that adolescents and their parents were receptive to a positive psychology approach,10 which places an emphasis on positive emotions and strengths rather than problems.71
Behavioural systems theory (of family functioning) underlying Behavioural Family Systems Therapy (families and adolescents)
This theory is a combination of behavioural and family systems models (see Box 1) and its efficacy is demonstrated through Behavioural Family Systems Therapy (BFST). Seven studies59,64–69 evaluated the application of BFST for families of adolescents with diabetes. BFST is based on psychosocial principles of targeting family communication and problem-solving factors.43 Harris and colleagues59 examined whether home-based BFST produced clinically significant changes in family conflict in a sample of adolescents with poorly controlled diabetes and their families. The findings of this study suggested improvements in mothers’ and adolescents’ reported diabetes-specific conflict, as well as parent-reported general parent/adolescent conflict.
Wysocki et al64 compared the social validity of the BFST and Education Support (ES) group interventions as treatments for communication, problem-solving and conflict-resolution skills. The results indicated that adolescents and their mothers who had experienced BFST rated it as significantly more acceptable, applicable and effective in terms of improving family communication, problem-solving and conflict-resolution skills than did those who experienced the ES intervention. Furthermore, Wysocki and his associates68 demonstrated that 10 sessions of BFST improved family communication and problem-solving based on parent and adolescent reports65 and direct observation of family interactions.73 These benefits persisted for 12 months.66 Wysocki and co-workers conducted another randomised controlled trial implementing a modified version of BFST-D.67,68 The results demonstrated significant improvements in glycaemic control, treatment adherence and diabetes-related family conflict immediately post-treatment. These effects were maintained over a 12-month follow-up period.69
Theory of social ecology underlying Multi-Systemic Therapy (families and adolescents)
This theory has been used as a conceptual framework of Multi- Systemic Therapy (MST; see Box 1). MST is an intensive home-based treatment model, designed to target adherence-related problems within the family system, schools, peer network, healthcare system and broader community systems. Ellis and colleagues56 demonstrated that adolescents who received MST had significantly improved adherence to blood glucose testing and metabolic control (compared with standard care) at 6 months post-test. In general, parents in the treatment condition reported high levels of satisfaction with MST. Adolescents who received MST had a significantly decreased number of hospital admissions during the 6-month study period.
Following the findings of this study, Ellis and colleagues conducted a study in 2005, which demonstrated that participation in MST was associated with significant improvements in the frequency of blood glucose testing and 24-hour recall interviews.57 The MST group also had a decreased number of inpatient admissions whereas the number of inpatient admissions increased among control group participants. Furthermore, the findings of their study in 2007 demonstrated that MST increased support for diabetes care from both primary and secondary caregivers in two-parent but not in single-parent families. However, MST had the strongest effects on blood glucose testing and metabolic control in single-parent families.
Following the review of the MST and BFST, Kichler et al72 developed the ‘Kicking in Diabetes Support’ project, which aimed to provide both peer group and family-based interventions to adolescents with type 1 diabetes and their parents. Although there were no statistically significant changes in HbA1c and healthcare utilisation frequency at 6 months post-treatment, other psychosocial changes were documented, such as increases in parent responsibility and parents reported improved youth diabetes-specific quality of life. Therefore, this intervention appears to be a treatment modality that is feasible, acceptable and adaptable in a clinical setting by licensed psychologists and trainees (to improve the psychosocial functioning of youths with type 1 diabetes).72
Family systems theory underlying multi-family group intervention plus parent simulation (parents and adolescents)
Family systems approach is applied within a group therapy format (mentioned above). One study60 evaluated the impact of a 6-week multi-family (MF) group intervention and parent simulation (S) on adolescents' metabolic control and psychosocial and family functioning. The results demonstrated significant improvements/decrements in metabolic control in the MF and S groups in comparison with the control group in the first, second and third cycle of the study. In terms of perception/attitude, improvement was noted in adolescents’ attitudes towards a teenager with diabetes for those in the MF and MF+S groups relative to the controls. Overall, it is important for parents and their child to gain a better insight into each other’s views. Asking parents to simulate diabetes management for 1 week was a novel way of trying to achieve this.74
Please see the supplementary material in Appendix C (see www.bjd-abcd.com) for a brief description about effect sizes.
Seventeen studies were included in this review, but few studies included the same comparisons and outcomes and therefore a meta-analysis was not conducted. The initial studies by Wysocki and colleagues65,66 reported that BFST compared with current therapy and ES yielded more improvements in parent/adolescent relationships. However, in 2006 they reported non-significant findings related to the same measure (all subscales of the Parent-Adolescent Relationship Questionnaire= NS).67 In 2000 it was indicated that their intervention had no effect on treatment adherence at post-treatment.65 This was contrary to the results reported by them in 2001, in which the BFST group showed significantly improved treatment adherence at 6 and 12 months follow-up.66 In their 2000 study Wysocki et al included 3-month follow-up but, unlike other studies, they did not measure outcomes at 6 and 12 months.65 It may be that short-term behavioural approach-based interventions promote improvements in parent/adolescent relationships. However, treatment adherence can be improved and maintained by a prolonged change in family interaction patterns.
Although Viklund et al tailored their intervention to support adolescents through the empowerment programme, no positive glycaemic or empowerment effects were found for teenagers with diabetes.63 One interpretation was that perhaps the teenagers (<14 years) were too young to incorporate the described components of empowerment.75 Additionally, among teenagers who invited their parents to participate in the intervention, HbA1c did not increase, which was in accordance with the literature, suggesting the importance of family support to facilitate coping with everyday management and demands of diabetes.6,76,77
In this review, a variety of interventions which resulted in significant reductions in HbA1c56,57,67,68 involved parents and had beneficial effects on diabetes management. The parental simulation approach used by Satin and colleagues60 also resulted in a large beneficial effect on HbA1c. Research has suggested that the frequency of blood glucose monitoring is increased with parental involvement which, in turn, is associated with better metabolic control.78 Furthermore, a high level of support from family members leads adolescents to better adhere to their diabetes regimen.14,79
A variety of other interventions indicate that family-based behavioural approaches such as goal-setting, self-monitoring, positive reinforcement, behavioural contracts, supportive parental communications and appropriately shared responsibility for diabetes management have improved regimen adherence, parent/adolescent relationships and glycaemic control.6,80 However, low levels of family support and increased family conflict have been consistently associated with poor diabetes self-management, metabolic control, psychosocial adaptation and quality of life in adolescents with type 1 diabetes.2,11,81
On the other hand, peer group interventions indicate that peer group support and problem solving can improve short-term glycaemic control.44,62 Group coping skill training improved glycaemic control and quality of life for adolescents involved in intensive insulin regimens.82 Stress management, problem solving and coping skill training, delivered in small groups, has reduced diabetes-related stress,83 improved social interaction,84 increased glucose monitoring and improved glycaemic control.85
In the current review, the importance of integrating medical, behavioural and psychosocial components into the interventions were underscored by at least six of the RCTs.56,67–69,71–72 The results suggest that multi-component interventions may be more successful for adolescents than those that just focus on one aspect – for example, psychological in the study by Newton and Ashley.70
Home-based interventions, although more time consuming for healthcare professionals (HCPs), appear to be a viable and accessible alternative for intervening with many of the families.56 Such interventions provide an ecologically valid family-centered means of engaging adolescents and their parents in treatments.86 In addition, they may also allow the HCPs to better understand the ‘real-world’ barriers to regimen adherence. It is also important to note that the home-based intervention by Ellis et al57 demonstrated high rates of recruitment (70%) as well as high retention rates (75%) in a treatment that lasted >5 months on average. This suggests that, when such interventions are provided in a way that increases access, they have a high likelihood of being accepted by such adolescents and their families.57 Cost-effectiveness studies are needed to assess whether the greater uptake and effects offset the costs of staff travel.
Strengths of the study
This review was not limited to one geographical area or one country. Furthermore, to the best of our knowledge, no systematic review has evaluated family/peer- and theory-based interventions involving adolescents and families/peers. Studies included in the review were RCTs, which reduced evaluation of interventions with recruitment and other study design bias eliminated by randomisation.
Limitations of the study
It is acknowledged that this review includes a relatively small number of studies with rather small sample sizes, which makes it difficult to draw conclusions from the results. Interventions developed in the USA require modification and re-evaluation for application in the UK.87 This review exposed interventions, mostly including parents and rarely including peers, which were evaluated by assessing widely differing outcomes. Due to the heterogeneity of the studies, it was not possible to perform a meta-analysis.
The heterogeneity of young people with diabetes was generally not reflected in the RCTs undertaken to date, although some did select those with poor glucose control. A patient group at high risk are those with repeated hospitalisations, who are particularly likely to have a high prevalence of psychosocial issues and among whom a combined outreach diabetes specialist–mental health team approach might be able to reduce admissions and length of stay and improve glycaemic control.88
Overall, interventions including parents have small- to large-sized beneficial effects on a variety of diabetes management outcomes. Studies identified here addressing the issue of parental involvement support the evidence that developmentally appropriate and negotiated responsibility has beneficial outcomes. Narrative analysis suggests that interventions are more likely to be effective if they demonstrate the inter-relatedness of the various aspects of diabetes management. The evaluation of interventions needs to be by well-designed theory-based RCTs, of sufficient size, over a long-term period, which report results in such a way that effect sizes can be calculated. Home-based interventions could be more viable and accessible alternatives for intervening with many of the families than office- or hospital-based interventions. Future studies should estimate the costs associated with delivering such interventions involving families and also clarify the theoretically guided design of the intervention and the selection of the outcomes. The development process should involve stakeholders (ie, adolescents, their families and HCPs) to co-design a potentially cost-effective and feasible intervention in the context of NHS diabetes services. Such interventions need to be understood and accepted by the HCPs and managers as key and integral parts of diabetes care.
Conflict of interest None.
Funding None.
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