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Psychology in Diabetes Care, 2nd Ed., Part 10

Edited by Frank J. Snoek and T. Chas Skinner

Diabetes in Adolescents

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2.2 Familial Interventions (Part 1) 

First, the descriptive literature of the family environment in supporting the young person with diabetes is probably the most extensively researched area on adolescent and childhood diabetes.

To provide a means of integrating the very disparate operationalizations used in the research, two dimensions that family researchers, reviewers and theorists have consistently identified will be used. The labels more usually used for these dimensions are family support and family control. Family support comprises behaviors that foster in an individual feelings of comfort and belonging, and that he or she is basically accepted and approved of as a person by the parents and family. Family control reflects an environment that directs the behavior of an individual in a manner desirable to the parents, to the power base in the family.44

Although the dimension of family support generates inconsistent results in relation to glycated hemoglobin, with roughly equal numbers of cross-sectional studies supporting an association 49,52–58 and failing to support this association, 45,46,59–67 and longitudinal studies also producing mixed results.23, 55, 63, 71 In contrast, most support a significant association between family support and psychological adjustment,45–49 although two smaller studies report no significant association between family support and adjustment.50,51 In relation to self-care the literature consistently supports an association,46,53,54,62,68–73 with no identified studies failing to find an association between some aspect of family support and self-care behavior. The inconsistent results for family support and glycemic control are probably a result of its effect being mediated by self-care, whereas other variables have direct effects, 54 such as stress, which may mask the indirect targeted increasing support with the family.

However, family conflict, a concept related to support, has been targeted in a recent intervention program. The fact this has been done remains curious, given the inconsistent results in the published literature.55,61,70 with prospective data71 reporting that changes in conflict were not associated with changes in adherence over the four years of their prospective longitudinal study. This may be a result of conflict over minor issues being common and even normative in adolescence, with some commentators arguing that conflict in the family is essential for the development of young people’s interpersonal skills.74–76 However, it is important to remember that extreme levels of conflict and/or conflicts that remain continually unresolved are likely to disrupt the family and impact on poor control. Therefore, communication and conflict resolution may be a more critical issue as highlighted by Bobrow and colleagues,77 who examined the interaction between mothers and adolescent daughters with diabetes.

However, if conflict resolution is the key problem then interventions designed to provide families with the skills and strategies to resolve conflicts with resulting benefits for the family as a whole and for the management of diabetes would be helpful. One research group has attempted this using Behavioral–Family Systems Therapy (BFST).78–81 The program involves four therapy components. (i) Problem-solving training provides families with a behavioral contracting approach to conflict resolution with training in problem definition; generation of alternative solutions; group decision-making, planning, implementation and monitoring of the selected solution and renegotiation or refinement of the ineffective solutions. (ii) Communication skill training includes instructions, feedback, modeling and rehearsal, targeting common parent–adolescent communication problems. (iii) Cognitive restructuring methods were used to identify and change family members’ irrational beliefs, attitudes and attributions that may have impeded effective parent adolescent communication and conflict resolution. (iv) Functional and structural family therapy interventions targeted anomalous family systemic characteristics (e.g. weak parental coalitions or cross-generational coalitions) that may have impeded effective problem solving and communication. The psychologists used standard behavior therapy techniques of instruction, feedback, modeling and rehearsal along with behavioral homework (i.e. encouraging families to practice targeted skills at home). Although the program resulted in significant improvements in parent–adolescent relationships and adherence, there were no gains in psychological adjustment or metabolic control.79–81 These mixed results pose more questions than they answer on the role of conflict and diabetes outcomes. All that can be said for certain at the moment is that the research on family conflict continues to generate conflicting, contradictory and confusing results.

Research on the dimension of family control also generates inconsistent results, with some studies reporting a significant association46,48,49,51,58–62,66,82–84 whilst others do not support an association.45,46,52,53,55,60,62–65,70,85–90 This inconsistency may be a result of researchers looking for linear effects, when non-linear effects are more probable.84 Alternatively, the lack of consistency in results may be a consequence of the lack of specificity in the measures of family control measures. Research that has looked at the degree of parental involvement in diabetes care has produced noticeably consistent results. The greater the responsibility for diabetes care activities (e.g. injecting insulin, deciding on insulin dose, remembering to monitor blood glucose values) taken by the adolescent with diabetes, and the less the parental involvement, the worse the control.5,58,64,66,91–94 More detailed examination of parent and child perceptions of responsibility indicated that where no-one was taking responsibility for diabetes care tasks the young person with diabetes was in worse diabetes control.95 This handing over of responsibility not only needs to be negotiated and managed, but also needs to match the maturity of the individual and their ability to take responsibility.7,94

These hypotheses have now been tested with intervention studies that specifically targeted this process of negotiating responsibility, combined with self-management education. 96–98 These studies have demonstrated that this is an issue that could be readily integrated into normal diabetes care and consultations without increasing diabetes-related conflict, and can be delivered in a group or individual format and support improved glycemic control and self-care. This approach has now been replicated by a second research group in the UK.99,100   FACTS (Families, Adolescents and Children’s Teamwork Study), developed in response to the need for a family-centered, skills-based education program without parents and their children having to attend the hospital for any more visits. There are three or four families in each group with separate sessions for children (11 years or less) and young people (12–16 years). The sessions are fully integrated into routine clinical care and occur at the diabetes center on the same day as the child’s usual 3 monthly appointment. There are four sessions per year, which allows time to consolidate new information and put it into practice before new topics are raised. This approach also helps to include those who may not otherwise volunteer for extra-curricular activities or find attending for additional visits difficult. Each session is facilitated by a health care professional who has had expert training in the delivery of group education by a health psychologist. This has enabled a structured program to be delivered by local staff while making effective use of the limited health psychologist resources available in the UK.

Session 1 (Food enjoyment with carbohydrate counting) is facilitated by a pediatric diabetes specialist dietitian. Carbohydrate counting is not presented as an all or nothing tool, or as a tool exclusively for those on pumps or multiple injections, but rather as a tool that those on less intensive insulin regimes may also wish to consider. We use real foods eaten by the children and focus on snacks, which contribute significantly to the calorie intake of young people taken either as treats, before sports or to prevent/treat hypos.

To establish what carbohydrate counting is all about and how it may be useful the group is asked what is already known about this topic. They discuss why they feel this may be of benefit in managing diabetes. Once the group has identified that carbohydrate counting may be helpful to them, the next step is for them to identify which foods contain carbohydrate. These are listed on a flip chart and divided into two columns to distinguish sugars and starches as shown. This allows for discussion and recognition of the different types of sugar, e.g. fructose, lactose, sucrose and glucose.

The children write what they have eaten for breakfast that morning on a flip chart. They identify the carbohydrate sources and discuss how these may be counted by using food labels, weighing or using handy measures to work out their portion size. Food reference tables are introduced and used as required. Children are encouraged to choose their favorite snacks from a variety of healthy and sweeter options and work out which ones are suitable snacks. The fact that 15g of carbohydrate has the same effect on blood sugar whether it comes from an apple, a Shredded Wheat or a mini Mars bar is of great interest to the children. The use of snacks before sports and to treat/prevent hypos is discussed.

The practicalities of estimating the carbohydrate content of individual portions of rice or pasta are discussed. The carbohydrate content of 100 g dry basmati rice is calculated and compared to the cooked portion. Families work together to read the labels, weigh their portion and work out the carbohydrate content of their own portion size. They are introduced to handy measures to avoid this messy process at each meal! Those who wish to continue with this at home are given food diaries and asked to calculate their average daily CHO intake. Computer analysis of their results revealed that this simple practical session resulted in effective estimation of CHO content with minimal differences between computer and parent estimates. This indicates that carbohydrate counting can be effectively taught in small groups using real life examples and practical interactive activities. The session is effective in providing accurate dietary knowledge but of course this does not prove that it results in improved insulin dose adjustment or lasting behavioral change.

Session 2 (Blood sugar testing, HbA1c and insulin dose adjustment) builds on the carbohydrate counting session through initially reviewing learning from the first session and the group’s experiences with carbohydrate counting with all efforts praised, followed by an outline of the current session contents. Thereafter, a card game is played to explore the facts and fictions of blood sugar monitoring. Individuals are encouraged to think about their own blood glucose targets and comment on how easy or difficult these are to achieve. Factors that raise and lower blood glucose are written on a flip chart, with an emphasis that although food is important it is not the only factor leading to out of range values. 

Parents and children are asked whether they know what their HbA1c value was at today’s clinic visit. Those who wish to share their results are asked what this means to them in terms of blood sugar control. A practical demonstration follows where the children pour a small amount of granulated sugar into a clear container and a larger amount of sugar into the next. Red blood cells are simulated by making small balls of red playdough, demonstrating that at greater sugar concentrations there is more sugar stuck to the red cells, giving higher levels of HbA1c. 

Basic facts about common types of insulin and injection techniques are discussed. Participants are asked to find the names of their own insulins and with help from their parents match these to the time frame over which they work using sticky labels on the flip chart. This simple exercise always reveals a surprising number of common misconceptions. Insulin absorption from different sites and the need for site rotation are discussed. 

A pattern of high blood sugars before the evening meal is written on the flip chart. Participants are then asked to come forward and circle those values that are out of range such that they can identify the pattern. The group discusses the likely causes for this pattern. They then suggest a range of solutions, which are offered to each child/young person, who then determines which one will work best for them. Regular review of diaries or blood glucose memories is encouraged at home to encourage parents to elicit their child’s opinions and to gain confidence in problem solving as a team. 

Session 3 (Teamwork and communication to support blood glucose monitoring) begins with an ice-breaker exercise as the topic moves away from more traditional education to more psychological issues. The group is asked to arrange themselves in order of height with eyes closed, or they are asked hold hands in a circle, drop hands, hold hands with two different people, while staying in same spot and then go back to your original position. Once the task is completed the group is asked, “What did you need to do?” The answers are written onto the flipchart and form the basis of this session:

  • teamwork
  • getting out of a mess
  • rely on someone else to co-operate
  • have a laugh
  • getting to know people
  • how to work out a problem with each other
  • trust each other
  • there are lots of solutions, always a way out
  • cannot always get it perfect.

Thereafter children and parents are both asked to draw a picture of doing a blood sugar test in their home. They are encouraged to share their pictures with the group:

Michael (grumpy face) – Please do I have to? 

Mom – Yes. 

Michael – Can I do it later? 

Mom – It’s always come on, come on, come on until in the end I get a grumpy face too. Once he starts doing it, it’s OK.

After sharing these pictures and describing what is happening, the group are to draw ‘what happens in your house when your blood sugar is 399’. This provides an opportunity to discuss how families react to out of range blood glucose values. The issues raised by this are discussed, with many parents and children gaining new insights into each other’s behaviors and how these affect each other’s feelings and thoughts about themselves. Throughout, no one is criticized or judged; rather, individuals views are all valued and everyone is just given time to share their views in an honest but gentle way. 

Session 4 (Interdependence: sharing responsibility and letting go) also begins with another ice breaking exercise, before asking the group to ‘Draw a train representing your diabetes team’. Everyone is again gently persuaded to share their drawings, and some specific questions are asked of both adolescents and parents, such as ‘Who’s driving the train?’; ‘In which carriage do you sit?’; ‘How do you feel about where you are?’; ‘How can you see this changing in the future?’; ‘What needs to happen to help these changes happen?’

There tends to be more agreement between the pictures drawn by the parents and adolescents in this session, compared to session 3, but here the discussion is focused on the future, and negotiating changing roles as the young person gets older. Any key points raised in the discussion are noted on a flip chart. There is no direct teaching or instruction in the session, just valuing the insights brought to the group by the participants.

The FACTS program aims to improve diabetes self-management skills, increase teamwork and reduce diabetes-related family conflict. A randomized waiting-list-controlled trial is currently underway to assess the effects of the program on quality of life and glycemic control of young people with type 1 diabetes. The preliminary data from this project are promising. With more families attending the group requesting to go on more intensive insulin regimens, although this is not the aim of the educators, the intervention group show increased agreement between parents and adolescents on diabetes management tasks, more adolescent and more parental involvement in care and improved glycemic control in the short term. 

The results of these studies replicates the data on general adolescent development, which also implicates parental involvement as the single most important predictor of positive adolescent outcomes.101 The key to understanding this approach is to acknowledge that the major developmental task of adolescence is movement away from dependence on the family, not toward complete independence but rather interdependence. Interdependence does not require the adolescents to distance themselves emotionally from parents, but requires a reorganization in which the family members renegotiate and redistribute responsibilities and obligations. 

Next Week: Individual Interventions

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