Parents’ Perceptions of Factors That Affect Successful Diabetes Management for Their Children
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《小儿科》
Division of Endocrinology The Craig-Dalsimer Division of Adolescent Medicine
Division of Biostatistics and Epidemiology, Department of Pediatrics, The Children’s Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania
ABSTRACT
Objective. To learn which factors parents perceive to be most influential in determining successful type 1 diabetes management.
Methods. A 4-stage mixed qualitative-quantitative method that consists of a series of focus groups, a survey, and in-depth interviews was used to ensure that parents generated, prioritized, and explained their own ideas. In each stage, parents offered a new level of insight into their perception of how children achieve good metabolic control while living as normal a life as possible. The survey responses were divided into statistically different ranks, and the Kruskal-Wallis test was used to compare the results between subgroups.
Results. A total of 149 parents participated in the formative qualitative phases, 799 families (66%) responded to the parent-generated survey, and 67 explanatory interviews were conducted. The families who responded to the survey had children of varied ages (mean: 11.9 years; SD: 4.44) and diabetes control (mean hemoglobin A1c: 8.22%; SD: 1.65); 84.1% of respondents were white, 12.3% were black, and 89% were privately insured. The 30 survey items were statistically discriminated into 8 ranks. The items cover a wide range of categories, including concrete ways of achieving better control, families’ or children’s traits that affect coping ability, actions of the health care team that support versus undermine families’ efforts, and the availability of community supports. No clear pattern emerged regarding 1 category that parents perceived to matter most.
Conclusions. Clinicians can affect many of the factors that parents perceive to make a difference in whether they can successfully raise a resilient child in good diabetes control. Future research needs to determine whether health care teams that address the concerns that parents raised in this study are more effective in guiding children to cope well with diabetes, to incorporate healthier lifestyles, and ultimately to achieve better metabolic control.
Key Words: child adolescent professional–patient relationships provider–parent relationships focus groups survey qualitative research diabetes patient satisfaction
Abbreviations: HbA1c, hemoglobin A1c CI, confidence interval NGT, nominal group technique SES, socioeconomic status
The challenge of managing childhood chronic illness often takes on a central theme in families with affected children and may create a great deal of stress for the family unit.1–8 In particular, type 1 diabetes strikes abruptly and instills fear in parents that their child may suffer life-threatening crises and serious lifelong complications if they do not remain vigilant.5 The family must quickly learn a rigorous diabetes regimen and integrate it into their daily life. This includes blood sugar testing, insulin administration, meal planning, and a constant consideration of the interplay among insulin, food, and activity. Families make these life changes while trying to adhere to published recommendations that suggest that children as young as 7 should be treated intensively to decrease their risk for long-term complications,5,9,10 but what may make type 1 diabetes particularly stressful is that mealtime is transformed from a routine pleasure to a time of testing and needles that reminds families that their child is no longer "normal."7
Parents influence how seriously diabetes will affect their children because they manage diabetes in the younger years and prepare their older children to care for themselves independently and incorporate lifelong health habits.11–13 Because clinicians’ effectiveness is mediated by the family, ideally they should consider how family issues and cultural context might have an impact on the family’s ability to successfully manage diabetes and use that knowledge to tailor a family-specific plan. Such a plan should support the family to understand that although diabetes management issues seem pervasive, their primary goal remains to ensure that their son or daughter meets the normal developmental tasks of childhood. There is no shortage of empirical studies with investigator-driven recommendations for how clinicians might work more effectively with families.14–17 However, few studies draw directly from families’ wisdom gained from the life experience of living with diabetes.
The objective of this study was to learn which factors parents perceive to be most influential in determining whether their child and family unit successfully manage diabetes. We defined "successful management" as achieving good blood sugar control while meeting the normal emotional and developmental needs of the child. Parents were asked to consider the effect of diabetes on the family’s well-being when they thought about "successful management," because children’s well-being is tightly linked with parents’ ability to manage the stresses of the disease.18–20 A parent-centered mixed qualitative-quantitative design was used to ensure that families at our diabetes center developed their own ideas rather than merely responded to ideas of interest to the investigative team.
METHODS
Study Population
The Diabetes Center of The Children’s Hospital of Philadelphia serves children and adolescents within a large urban children’s hospital as well as at 7 regional satellites that serve suburban and rural patients. A total of 1212 eligible families had a child with type 1 diabetes and a clinic visit within the previous 18 months. The families in the study population were 81.5% white, 14.1% black, and 4.4% from other backgrounds. Private insurance covered 85.6% of the patients; the remainder received medical assistance. The mean age of the affected child in the family was 12.1 years, and 52.9% were male. The children had varying degrees of diabetes control as measured by the child’s latest hemoglobin A1c value (HbA1c %); 46.4% were in excellent control (HbA1c <8), 34.4% were in fair control (HbA1c between 8 and 9.5), and 19.2% were in poor control (HbA1c >9.5). This represents a mean HbA1c of 8.4 ± 0.1 (95% confidence interval [CI]). The range of HbA1c values in our study population was similar to the range reported in other studies.21
Design
A mixed qualitative-quantitative method using a parent-centered approach ensured that parents generated, prioritized, and explained their own responses to the study question. The method closely approximates the "teen-centered method" used over the last decade to explore factors that have an impact on adolescents’ successful development or their interactions with health care.22–24 The parent-centered method that was used here consisted of a series of focus groups, a survey, and in-depth interviews. In each stage of the study, a new level of insight was added to the results of the previous stage to develop a knowledge base that genuinely reflected the parents’ perspective while limiting imposed bias from the investigative team. In each stage, the participants responded to a permutation of the question, "What makes a difference in whether a child and family will ‘live well’ with diabetes" in which living well was defined as achieving good metabolic control while living as normal a life as possible. The hospital’s Institutional Review Board approved the study protocol. Parents in each stage were informed that their thoughts were being collected as part of a research process. Formal written consent was waived, and their participation served as assent.
In stage 1, 44 parents participated in 7 open focus groups facilitated by 1 of 2 racially balanced pairs of facilitators who were not members of the research or health care team. The facilitators received training in group dynamics and in limiting imposition of their own biases. The focus groups followed an open discussion format in which the facilitators posed an opening question and then used follow-up questions to help parents generate a wide range of rich responses. Their responses led the investigative team to develop and pilot a single question that would generate the same variety of responses and be used in stage 2. Focus groups in each of the 4 subgroups proceeded until the point of "saturation," at which time no new ideas were being generated.
In stage 2, 105 parents participated in 16 nominal group technique (NGT) sessions to create a list of responses to the question, "What factors make a difference in whether your child does well with his or her diabetes" NGT is a technique designed to overcome the limitations of data collected in focus groups.25,26 Even in well-facilitated focus groups, the ideas discussed in greatest depth may represent the most interesting or controversial ideas, not necessarily those that best answer the study question(s). In contrast, this 1-question technique controls for group dynamics, allowing a broader range of ideas to be generated and then to be prioritized in terms of their importance. To generate priority scores, each participant selected 5 items from among all of the ideas that he or she believed best answered the study question. The participants then assigned each selected item a score of 1 through 5; the unselected items received a default score of 0. The investigative team collated the individuals’ ratings and assigned a mean priority score for each item among all of the groups as well as within each of the 4 subgroups.
NGT is a good technique to generate ideas and gather a preliminary view of which ideas are most important but has limitations relative to a survey. Because each NGT participant prioritizes only ideas that are generated within his or her group, one cannot be sure how he or she might view another idea. Therefore, we conducted NGT sessions until all ideas were repetitive and developed our survey on the basis of the responses that received the highest mean priority scores. This allowed survey respondents, in contrast to participants in the formative stages, to prioritize the top ideas that were generated from a variety of groups. In contrast to group sessions, surveys allow subgroup analyses, which can inform us how better to target care. In fact, several ideas that were of particular importance to a subgroup but whose mean priority score would not have earned inclusion were placed in the survey.
The subject-centered approach for item inclusion that was used to develop our survey differs from traditional survey design in which literature review informs the investigative team, who then designs the survey. In fact, the 30 survey items were worded in the precise language of the NGT participants. The survey was written to be nonacademic in tone and to be accessible even to people with low literacy so that respondents with a seventh grade reading level could complete it in 20 minutes. Respondents were asked to rate "how much of a difference" each item makes in a child’s and a family’s ability to "live well" with diabetes, using the following Likert scale: 1 = no difference; 2 = little difference, 3 = some difference, 4 = big difference, 5 = extreme difference. "Living well" was defined as having "good control while living as normal a life as possible."
A telephone call was made to each household both to request participation and to ensure anonymity. One survey was sent to each household. The initial mailing produced a 54% return rate, and a second mailing raised the return rate to 65%. Because families with children with higher HbA1c had a lower return rate, a third mailing targeted this subgroup, yielding 12 more surveys.
The survey results demonstrate how the overall population as well as subgroups prioritized their responses. Although knowledge of the most important factors may increase clinicians’ understanding of how best to care for children and support their families, the utility of a list of factors is limited. The fourth and final stage of this study, in-depth semistructured interviews, allowed participants to explain further highly prioritized concepts as well as to suggest strategies to address their concerns. The interviewers were members of the investigative team who avoided interviewing participants with whom they had a previous clinical interaction. After the first 40 interviews, it became apparent that representatives of subgroups who may feel marginalized within the health setting (racial minorities and parents with children in poor diabetes control) were not offering criticisms that paralleled those expressed in stage 1 and 2 focus groups. To afford these parents the safety that was inherent within a group that was led by facilitators who were not members of the investigative or health care team, 3 focus groups were held specifically to explore survey items that were critical of clinician–patient interactions. This article offers the results of stage 3 and draws some insight into the meaning behind survey items from stage 4 interviews. A future article will offer the results from the interviews and explanatory focus groups in much richer detail.
Statistical Analysis
We first compared families who responded to the survey with the nonrespondents (Table 2). Continuous variables, such as age of the child with diabetes and HbA1c value, were compared using a t test and analysis of variance. Categorical data such as gender, race, and insurance type (used as a proxy measure for socioeconomic status [SES]) were compared using Fisher’s exact test and 2 test. The Kruskal-Wallis test was used to compare items’ ranks between subgroups such as gender, race, insurance type, and HbA1c groups. Because this is a descriptive article, statistical significance was defined as P < .05, assuming that adjustment for type I error is not required. However, for 2 subgroups with >2 categories, the data are also presented using Bonferroni methods, with significance level set to P = .016 (.05/3) to adjust for the fact that we are making 3 pairwise comparisons. Statistical analysis was performed with SPSS (SPSS, Inc, Chicago, IL) and SAS (SAS Institute Inc, Cary, NC).
Statistical analyses focused on the survey. First, the mean Likert scores and 95% CI (mean ± 1.96 SE) were calculated for each of the 30 survey items. We ordered items’ mean responses in a descending way. To test whether the 30 items statistically and significantly differ from each other would require a large number of comparisons. To avoid the large number of comparisons, which requires adjusting type I error rate to a very small probability, we chose an alternative approach. We plotted the ordered means and the corresponding 95% CI. Second, we examined each mean starting from the highest, if the adjacent mean ± 95% CI overlapped with the first mean (highest mean), then we concluded that these 2 means were similar. If they did not, then the first mean was considered a rank itself. We repeated this approach with the second highest mean with adjacent lower mean and so on. By this method, the ordered means were organized into 8 groups or ranks (Table 3).
RESULTS
The results from the first 2 formative stages are embedded in the survey items. Stage 1 focus group participants helped to develop and pilot the question used in stage 2 NGT sessions to capture the variety of ideas expressed in the groups. The parents who participated in stage 2 generated a total of 139 different responses. Because the highest prioritized responses were included in the stage 3 survey, the reader can view stage 2 results by noting which items are included in the survey.
Of 1212 eligible families, 799 (66%) responded to the survey. Seventy-three percent of respondents were female, 97% described themselves as parents, and 1% were grandparents. Of the 799 parents who responded, 10% had a child with diabetes diagnosed for <1 year, 35% with diabetes for 1 to 3 years, 17% with diabetes for 3 to 5 years, and 38% with diabetes for >5 years. Respondents differed from nonrespondents by several sociodemographic variables (Table 2). Although efforts to recruit racial minorities and the parents of children in poor control did improve participation rates, Table 2 reveals that we did not achieve equal participation. Statistically significant differences were seen in regard to race, patient gender, insurance type, and diabetes control.
There was an association in this sample between race and SES (using insurance as a proxy measure) and between metabolic control (represented by HbA1c) and SES. Ninety-four percent of the white families who responded to the survey were covered by private insurance, as compared with 60% of the black families. Ninety-three percent of families with children in good metabolic control (HbA1c <8%) were covered by private insurance, whereas 77% of families with children in poor control (HbA1c >9.5%) had private insurance.
The Kruskal-Wallis test was used to examine the differences in Likert scale ratings among 8 subgroups: gender of survey respondent, gender of child, age of child (0–5 years, 6–10 years, 11–13 years, and 14 years or older), white and black, good versus poor diabetes control, public versus private insurance, families with a diagnosis for <1 year versus those with more experience, and families with a male versus female child with diabetes. Table 3 lists the Kruskal-Wallis P values for items for which ratings differed significantly (P < .05) among 5 subgroups, and differences among the other 3 groups are described in text. Because the parent-centered process was meant to be hypothesis generating rather than hypothesis testing, we had no a priori hypotheses on differences among these subgroups. The revealed differences may allow clinicians to consider how better to approach the concerns of different families.
The female respondents (73.3%) rated 12 items statistically different from the male respondents; in each case female respondents rated them higher. It is interesting that the gender of the affected child made little difference in how parents rated any of the items. Only whether people at school know how to manage diabetes approached a statistically significant difference in rating (P = .050), with parents of a male child rating the item lower than girls’ parents.
The age of the child made a difference in how parents rated 10 of the items. Generally, the parents of children who were 10 years and younger rated these 10 items higher than the parents of the pre- and early adolescents and rated them much higher than parents of adolescents. The only item that had the reverse trend was predictably, "If the child takes more responsibility for his/her diabetes as he/she gets older."
There was little difference between the ratings of the 14.4% of parents with <1 year since diagnosis versus those with more experience. The more experienced parents rated both whether a child has a regular schedule for eating (P = .022) and whether he or she can join a support group (P = .055) as significantly less important.
Families with only 1 adult to manage diabetes care rated 3 items as more important than did respondents who represented households with more adults to share responsibility: good communication between the family, diabetes team, and insurance company (P = .046); the diabetes team does not judge or blame the family for poor metabolic control (P = .002); and the diabetes team knows about the important issues in a family’s life (P = .005). Families with 2 or more adults responsible for diabetes care rated higher the importance of the child’s knowing which foods affect blood sugar (P = .010).
DISCUSSION
The parent-centered process facilitated parents’ response to the open-ended question, "What makes a difference in whether a child and family will ‘live well’ with diabetes" Their responses included a wide array of factors that have an impact on a parent’s ability to manage his or her child’s diabetes while creating a "normal" environment for the child to develop and the family to function. The parents’ responses included many items that seem unrelated but when viewed together illustrate the context in which parents care for their child. They also provide some insight into the family’s resilience in successfully adapting to the challenges of living with diabetes. The factors range from the concrete skills and knowledge base that they need to manage glucose levels to the interface that they must negotiate with an outside world that is often ignorant of the special needs of a child with chronic disease. Parents describe the sources of support, including the health professional team, from which they derive the strength to cope with the practical and emotional difficulties associated with caring for a child with diabetes. In parallel, some of their points illustrate the frustration and shame that they experience when not supported sensitively. Finally, they describe some of the family dynamic issues or inherent child traits that make a difference in dealing with the challenges of diabetes.
Although it is important for clinicians to understand the variety of factors that affect diabetes management, what matters more to families is the clinicians’ grasp of the life experience of raising a child with diabetes. The literature describing the diabetes professional–patient relationship suggests that well-intentioned professionals sometimes misjudge the perspective of families, thereby missing opportunities to be of greatest service.27–30 This discussion organizes the parents’ perspective into several themes, each of which describes an aspect of a multilayered approach that health professionals might use to optimize care for patients with diabetes. Qualitative insight from the preliminary analysis of the focus groups and interviews are included to describe the subtext behind some of the ideas.
Reinforcing the Importance of Education
Many of the items, including 4 of the top 9 items, deal with the skills and knowledge base that serve as the foundation of diabetes management.31,32 These items include the child’s knowing which foods affect blood sugar, maintaining a regular eating and testing schedule, and being well-informed of the benefits of good control and risks of poor control. The importance of the team’s keeping the family up to date was rated as the most important item by black families and was generally highly rated. Other adult-centered items included the importance of the adult’s being well informed about nutrition and being able to manage meals when eating out. The interviews reinforced that education begins at diagnosis and should remain the central theme of office visits. They suggested that older children must hear health messages reiterated from someone other than their parents, emphasizing direct communication between health professionals and children.
Making Clinicians, Good Treatment, Supplies, and Services Accessible
Parents repeatedly told us in interviews that they live with diabetes 24 hours a day, 7 days a week, reinforcing that much of what they cope with surfaces within their daily life outside the confines of routine scheduled visits. The high rating of the item, "If the adult in charge can talk to or see the diabetes team when needed," reflects how important immediate accessibility is to parents. Next, parents need help negotiating with the insurance industry to ensure that they get appropriate services and supplies. Table 4 reveals a sharp difference between how important this was considered by families who were covered by public insurance (rated 4 of 30 items) relative to those who were privately insured (rated 18 of 30 items). It was surprising that there was not a statistically meaningful difference between experienced families and families with a new diagnosis, perhaps suggesting that working with insurance does not become easier over time. Finally, there is a deeper meaning to keeping parents "up to date" beyond family education. Parents describe the anxiety of waiting for a cure and of desiring less invasive intervention techniques (eg, noninvasive blood glucose monitors, inhaled insulin). Parents reported that if their clinicians consistently shared new research and technology, then it would spare them the added responsibility of searching for new information.
Strengthening Community-Based Supports
Some of the parents’ ideas reflected the importance of their not feeling isolated as they handle diabetes. Although it is not realistic for the diabetes team to produce a supportive external environment for the family, the team certainly can explore and enhance existing supports. For example, survey respondents, particularly parents of younger children, rated highly the importance that people at the child’s school know how to handle diabetes. Parents explained that they worry that a diabetes crisis will happen with school personnel ill equipped to respond. Aware of this issue, the American Diabetes Association has published clinical practice recommendations to address the education and involvement of school personnel as essential to diabetes management.33,34
Another item described how important it was for the extended family to be able to support the family. Parents often described themselves as the sole caregivers, who cannot turn to family members or babysitters for respite because they are untrained or fearful about diabetes care. Consequently, they are less able to balance their own needs, increasing their general stress levels. Sullivan-Bolyai et al.5 reported mothers describing their mothering style as "constant vigilance." The intensity of this constant vigilance with lack of supports overburdened some mothers, who reported physical and/or emotional problems.
Finally, although the importance of faith and a faith community was not ranked highly by parents in general, it was rated higher by black parents and certainly is of central importance to many other families. Although it is not the health professional’s role to instill faith, it is worth exploring with families whether faith serves as an important support system for them.
Looking for the Strength in Families
Parents spoke of the disappointment and even shame that they feel when diabetes management is not going well or the child or adolescent becomes increasingly resistant to their management. Through the item, "If the diabetes team respects the strengths of the family," they expressed the importance of clinicians’ recognizing that much of what parents do is intended to be in the best interest of the child. They elaborated on how much easier it was to implement change when clinicians started from a point of understanding that they were building on existing family strengths.
The item, "If the diabetes team knows about the important issues in a family’s life," seemed to hold 2 polarized meanings. First, some people wanted the diabetes team to know their personal life issues so that the team might help to negotiate those challenges or at least understand that diabetes was not their only burden. Others felt as strongly that issues unrelated to diabetes were of no concern to the health team.
The interviewees offered different interpretations of the item that referred to the importance of the family working together. The first way of interpreting this item is straightforward; it recognizes the strength of families who work together and acknowledges how much easier diabetes care is to implement when it is not shouldered alone. A second point relates to how difficult it is when family members disagree on the level of vigilance in mealtime preparation, schedules, or testing. Some talked about how helpful it would be if the diabetes team offered a consistent message to both parents and provided a forum for parents to discuss and negotiate their different approaches.
Supporting Children and Adolescents
One of the greatest challenges of chronic illness is for parents and children to remain clear that the illness defines only a small part of the child. It must remain a priority for the child to meet all age-appropriate developmental tasks. Precisely because the office visit is designed to focus on the disease, it may serve as a particularly salient time to remind the family that the disease is only a small part of the child’s life.
Through several items, parents relate their concerns about the emotional and mental health of their children. First, parents indicate the importance of a child having a positive attitude and still feeling accepted even though they have diabetes. This merits direct discussion between children and their clinician on a routine basis. Health professionals can equip children with the skills to explain their illness to other children. Because children often tease about what they do not understand, children who are able to explain their illness to peers may eliminate the mystery and, perhaps, a source of isolation. The parents also stated that whether the child can cope with the stress and sadness associated with diabetes makes a significant difference to whether the child will ‘live well’ with the illness. Children with chronic disease are at greater risk for anxiety or depression that may merit referral to a mental health professional.35–37 To be most helpful, diabetes clinicians need to incorporate consistently into their care a biopsychosocial approach and have an appropriate referral network for when greater emotional needs arise.
Although availability of support groups for children was considered important enough to be included among the survey items, it was generally rated low. However, 8% of parents thought that it would make an extreme difference. This suggests that clinicians should ask individual families whether they think that a support group might be helpful. Additional research is warranted to explore for whom support groups would be most beneficial.
There is a wide body of research that addresses the special challenges that adolescents with diabetes face.13,38–40 During a time when young people are trying to fulfill the normal task of achieving independence, they must deal with parents who are worried that they will be incapable of caring for themselves and suffer dire consequences as a result. Furthermore, so much energy during adolescence is devoted to fitting in, to being "normal." In direct opposition to normalcy, they have to attend to their diabetes several times a day, each time reminding them of their difference. With this in mind, it is not surprising that adherence declines during adolescence.30,41
Hanna and Guthrie12 found that parental involvement in diabetes management decreased from early to middle to late adolescence. Anderson and colleagues42,43 reported that children and adolescents whose parents were more involved in diabetes management tested blood sugar more frequently and were in better glycemic control. The parents in our study reported wanting a diabetes team that "knows how to deal with a child’s emotions and attitudes when he/she is a teenager" and that could help to prepare their child to take more responsibility for diabetes care as he or she gets older. Parent interviewees believed that professionals might be better positioned to teach adolescents, precisely because adolescents are seeking independence from their parents.
Removing Inadvertently Offensive Interactions From the Health Care Setting
Many participants were not subtle when they spoke of interactions that they experienced as offensive. They described experiencing shame and anger when they felt blamed or judged for their child’s poor metabolic control. The relative ranking of this item was not dramatically higher among those in poor control, suggesting a widespread feeling that parents are held unduly responsible. Clinicians must remain aware that families may experience as recrimination the feedback that is intended to reinforce better control. Another item, "If the diabetes team treats all patients and families equally no matter what race or culture," indicates that some families perceive that they have not been treated fairly. A final item reflected the exasperation parents experienced when clinicians did not understand "that families live with diabetes 24 hours a day and 7 days a week." This item was explained in 2 different manners. First, it reflected the frustration that they feel when clinicians are condescending, failing to understand that parents hold an expertise earned through real-life experience. Second, some parents expressed resentment that clinicians did not understand that the level of constant vigilance expected of them was unrealistic in the context of their other responsibilities.
Study Limitations
The greatest strength of this study design is that it facilitated the parents to develop, prioritize, and explain their own perceptions rather than respond to specific interests of the investigative team. This allowed topics to arise that may have been uncomfortable for the center, including the perceptions that we judge patients and may not honor parents’ expertise. It also places each concern in the context of a wide variety of concerns that affect the patient’s and the family’s ability to succeed. However, there are limitations to this study. First, all participants are from a large diabetes center located within a children’s hospital or one of its outreach sites. Some of the ideas may reflect specifically on this center and may not generalize to other regions, centers, or primary or specialty care settings. Second, the two thirds of our families who participated in the survey differed in some ways from the nonparticipants. It is likely that a higher proportion of nonparticipants are from less organized families or families who are less pleased with our services. We acknowledge that we may be missing the view of precisely those families from whom we need to learn the most and to whom we are obligated to serve more effectively. Most important, this is a study that gathered perceptions; it is not an outcomes study. Therefore, we cannot draw conclusions about how best to act on the concerns that parents delineated.
Implications
Parents at our diabetes center shared their wisdom and experience and in doing so revealed a wide array of factors that make a difference in whether they can successfully raise a child who both is emotionally resilient and has good diabetes control. Many of the factors that they say influence their success can be affected by clinicians who are sensitized to their needs, especially if clinicians are willing to incorporate a biopsychosocial model of care that addresses issues beyond diabetes care in the office setting.
This mixed qualitative-quantitative database of parents’ wisdom and experience deserves additional analysis. Incorporating into clinical practice these data and the strategies suggested by parents will allow clinicians to anticipate and address more effectively the needs of their patients. Forthcoming publications will share the qualitative wisdom offered by parents regarding how best to address some of the concerns raised here. Ideally, other centers would perform similar patient-centered processes to determine whether these data generalize to other regions and populations. Ultimately, outcomes based research will need to determine whether health care teams that respond to the biopsychosocial and contextual needs of families result in better metabolic control and children who are emotionally and practically prepared to incorporate healthy lifestyles to be carried into adulthood.
ACKNOWLEDGMENTS
The Oberkotter Family Foundation supported this research.
We thank Malaka B. Jackson, MD; Cathy Jay, RN, BSN, CCM; Morris Johnson, MS, CSP; Maxine Johnson; Jane Kennedy, MSW; and Susan Dumser, RN, MSN for assistance with this study. Above all, we thank the families of our Diabetes Center for sharing their wisdom with us.
FOOTNOTES
Accepted Feb 4, 2005.
No conflict of interest declared.
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Anderson BJ, Vangsness L, Connell A, Butler D, Goebel-Fabbri A, Laffel LM. Family conflict, adherence, and glycemic control in youth with short duration type 1 diabetes. Diabet Med. 2002;19 :635 –642(Kenneth R. Ginsburg, MD, )
Division of Biostatistics and Epidemiology, Department of Pediatrics, The Children’s Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania
ABSTRACT
Objective. To learn which factors parents perceive to be most influential in determining successful type 1 diabetes management.
Methods. A 4-stage mixed qualitative-quantitative method that consists of a series of focus groups, a survey, and in-depth interviews was used to ensure that parents generated, prioritized, and explained their own ideas. In each stage, parents offered a new level of insight into their perception of how children achieve good metabolic control while living as normal a life as possible. The survey responses were divided into statistically different ranks, and the Kruskal-Wallis test was used to compare the results between subgroups.
Results. A total of 149 parents participated in the formative qualitative phases, 799 families (66%) responded to the parent-generated survey, and 67 explanatory interviews were conducted. The families who responded to the survey had children of varied ages (mean: 11.9 years; SD: 4.44) and diabetes control (mean hemoglobin A1c: 8.22%; SD: 1.65); 84.1% of respondents were white, 12.3% were black, and 89% were privately insured. The 30 survey items were statistically discriminated into 8 ranks. The items cover a wide range of categories, including concrete ways of achieving better control, families’ or children’s traits that affect coping ability, actions of the health care team that support versus undermine families’ efforts, and the availability of community supports. No clear pattern emerged regarding 1 category that parents perceived to matter most.
Conclusions. Clinicians can affect many of the factors that parents perceive to make a difference in whether they can successfully raise a resilient child in good diabetes control. Future research needs to determine whether health care teams that address the concerns that parents raised in this study are more effective in guiding children to cope well with diabetes, to incorporate healthier lifestyles, and ultimately to achieve better metabolic control.
Key Words: child adolescent professional–patient relationships provider–parent relationships focus groups survey qualitative research diabetes patient satisfaction
Abbreviations: HbA1c, hemoglobin A1c CI, confidence interval NGT, nominal group technique SES, socioeconomic status
The challenge of managing childhood chronic illness often takes on a central theme in families with affected children and may create a great deal of stress for the family unit.1–8 In particular, type 1 diabetes strikes abruptly and instills fear in parents that their child may suffer life-threatening crises and serious lifelong complications if they do not remain vigilant.5 The family must quickly learn a rigorous diabetes regimen and integrate it into their daily life. This includes blood sugar testing, insulin administration, meal planning, and a constant consideration of the interplay among insulin, food, and activity. Families make these life changes while trying to adhere to published recommendations that suggest that children as young as 7 should be treated intensively to decrease their risk for long-term complications,5,9,10 but what may make type 1 diabetes particularly stressful is that mealtime is transformed from a routine pleasure to a time of testing and needles that reminds families that their child is no longer "normal."7
Parents influence how seriously diabetes will affect their children because they manage diabetes in the younger years and prepare their older children to care for themselves independently and incorporate lifelong health habits.11–13 Because clinicians’ effectiveness is mediated by the family, ideally they should consider how family issues and cultural context might have an impact on the family’s ability to successfully manage diabetes and use that knowledge to tailor a family-specific plan. Such a plan should support the family to understand that although diabetes management issues seem pervasive, their primary goal remains to ensure that their son or daughter meets the normal developmental tasks of childhood. There is no shortage of empirical studies with investigator-driven recommendations for how clinicians might work more effectively with families.14–17 However, few studies draw directly from families’ wisdom gained from the life experience of living with diabetes.
The objective of this study was to learn which factors parents perceive to be most influential in determining whether their child and family unit successfully manage diabetes. We defined "successful management" as achieving good blood sugar control while meeting the normal emotional and developmental needs of the child. Parents were asked to consider the effect of diabetes on the family’s well-being when they thought about "successful management," because children’s well-being is tightly linked with parents’ ability to manage the stresses of the disease.18–20 A parent-centered mixed qualitative-quantitative design was used to ensure that families at our diabetes center developed their own ideas rather than merely responded to ideas of interest to the investigative team.
METHODS
Study Population
The Diabetes Center of The Children’s Hospital of Philadelphia serves children and adolescents within a large urban children’s hospital as well as at 7 regional satellites that serve suburban and rural patients. A total of 1212 eligible families had a child with type 1 diabetes and a clinic visit within the previous 18 months. The families in the study population were 81.5% white, 14.1% black, and 4.4% from other backgrounds. Private insurance covered 85.6% of the patients; the remainder received medical assistance. The mean age of the affected child in the family was 12.1 years, and 52.9% were male. The children had varying degrees of diabetes control as measured by the child’s latest hemoglobin A1c value (HbA1c %); 46.4% were in excellent control (HbA1c <8), 34.4% were in fair control (HbA1c between 8 and 9.5), and 19.2% were in poor control (HbA1c >9.5). This represents a mean HbA1c of 8.4 ± 0.1 (95% confidence interval [CI]). The range of HbA1c values in our study population was similar to the range reported in other studies.21
Design
A mixed qualitative-quantitative method using a parent-centered approach ensured that parents generated, prioritized, and explained their own responses to the study question. The method closely approximates the "teen-centered method" used over the last decade to explore factors that have an impact on adolescents’ successful development or their interactions with health care.22–24 The parent-centered method that was used here consisted of a series of focus groups, a survey, and in-depth interviews. In each stage of the study, a new level of insight was added to the results of the previous stage to develop a knowledge base that genuinely reflected the parents’ perspective while limiting imposed bias from the investigative team. In each stage, the participants responded to a permutation of the question, "What makes a difference in whether a child and family will ‘live well’ with diabetes" in which living well was defined as achieving good metabolic control while living as normal a life as possible. The hospital’s Institutional Review Board approved the study protocol. Parents in each stage were informed that their thoughts were being collected as part of a research process. Formal written consent was waived, and their participation served as assent.
In stage 1, 44 parents participated in 7 open focus groups facilitated by 1 of 2 racially balanced pairs of facilitators who were not members of the research or health care team. The facilitators received training in group dynamics and in limiting imposition of their own biases. The focus groups followed an open discussion format in which the facilitators posed an opening question and then used follow-up questions to help parents generate a wide range of rich responses. Their responses led the investigative team to develop and pilot a single question that would generate the same variety of responses and be used in stage 2. Focus groups in each of the 4 subgroups proceeded until the point of "saturation," at which time no new ideas were being generated.
In stage 2, 105 parents participated in 16 nominal group technique (NGT) sessions to create a list of responses to the question, "What factors make a difference in whether your child does well with his or her diabetes" NGT is a technique designed to overcome the limitations of data collected in focus groups.25,26 Even in well-facilitated focus groups, the ideas discussed in greatest depth may represent the most interesting or controversial ideas, not necessarily those that best answer the study question(s). In contrast, this 1-question technique controls for group dynamics, allowing a broader range of ideas to be generated and then to be prioritized in terms of their importance. To generate priority scores, each participant selected 5 items from among all of the ideas that he or she believed best answered the study question. The participants then assigned each selected item a score of 1 through 5; the unselected items received a default score of 0. The investigative team collated the individuals’ ratings and assigned a mean priority score for each item among all of the groups as well as within each of the 4 subgroups.
NGT is a good technique to generate ideas and gather a preliminary view of which ideas are most important but has limitations relative to a survey. Because each NGT participant prioritizes only ideas that are generated within his or her group, one cannot be sure how he or she might view another idea. Therefore, we conducted NGT sessions until all ideas were repetitive and developed our survey on the basis of the responses that received the highest mean priority scores. This allowed survey respondents, in contrast to participants in the formative stages, to prioritize the top ideas that were generated from a variety of groups. In contrast to group sessions, surveys allow subgroup analyses, which can inform us how better to target care. In fact, several ideas that were of particular importance to a subgroup but whose mean priority score would not have earned inclusion were placed in the survey.
The subject-centered approach for item inclusion that was used to develop our survey differs from traditional survey design in which literature review informs the investigative team, who then designs the survey. In fact, the 30 survey items were worded in the precise language of the NGT participants. The survey was written to be nonacademic in tone and to be accessible even to people with low literacy so that respondents with a seventh grade reading level could complete it in 20 minutes. Respondents were asked to rate "how much of a difference" each item makes in a child’s and a family’s ability to "live well" with diabetes, using the following Likert scale: 1 = no difference; 2 = little difference, 3 = some difference, 4 = big difference, 5 = extreme difference. "Living well" was defined as having "good control while living as normal a life as possible."
A telephone call was made to each household both to request participation and to ensure anonymity. One survey was sent to each household. The initial mailing produced a 54% return rate, and a second mailing raised the return rate to 65%. Because families with children with higher HbA1c had a lower return rate, a third mailing targeted this subgroup, yielding 12 more surveys.
The survey results demonstrate how the overall population as well as subgroups prioritized their responses. Although knowledge of the most important factors may increase clinicians’ understanding of how best to care for children and support their families, the utility of a list of factors is limited. The fourth and final stage of this study, in-depth semistructured interviews, allowed participants to explain further highly prioritized concepts as well as to suggest strategies to address their concerns. The interviewers were members of the investigative team who avoided interviewing participants with whom they had a previous clinical interaction. After the first 40 interviews, it became apparent that representatives of subgroups who may feel marginalized within the health setting (racial minorities and parents with children in poor diabetes control) were not offering criticisms that paralleled those expressed in stage 1 and 2 focus groups. To afford these parents the safety that was inherent within a group that was led by facilitators who were not members of the investigative or health care team, 3 focus groups were held specifically to explore survey items that were critical of clinician–patient interactions. This article offers the results of stage 3 and draws some insight into the meaning behind survey items from stage 4 interviews. A future article will offer the results from the interviews and explanatory focus groups in much richer detail.
Statistical Analysis
We first compared families who responded to the survey with the nonrespondents (Table 2). Continuous variables, such as age of the child with diabetes and HbA1c value, were compared using a t test and analysis of variance. Categorical data such as gender, race, and insurance type (used as a proxy measure for socioeconomic status [SES]) were compared using Fisher’s exact test and 2 test. The Kruskal-Wallis test was used to compare items’ ranks between subgroups such as gender, race, insurance type, and HbA1c groups. Because this is a descriptive article, statistical significance was defined as P < .05, assuming that adjustment for type I error is not required. However, for 2 subgroups with >2 categories, the data are also presented using Bonferroni methods, with significance level set to P = .016 (.05/3) to adjust for the fact that we are making 3 pairwise comparisons. Statistical analysis was performed with SPSS (SPSS, Inc, Chicago, IL) and SAS (SAS Institute Inc, Cary, NC).
Statistical analyses focused on the survey. First, the mean Likert scores and 95% CI (mean ± 1.96 SE) were calculated for each of the 30 survey items. We ordered items’ mean responses in a descending way. To test whether the 30 items statistically and significantly differ from each other would require a large number of comparisons. To avoid the large number of comparisons, which requires adjusting type I error rate to a very small probability, we chose an alternative approach. We plotted the ordered means and the corresponding 95% CI. Second, we examined each mean starting from the highest, if the adjacent mean ± 95% CI overlapped with the first mean (highest mean), then we concluded that these 2 means were similar. If they did not, then the first mean was considered a rank itself. We repeated this approach with the second highest mean with adjacent lower mean and so on. By this method, the ordered means were organized into 8 groups or ranks (Table 3).
RESULTS
The results from the first 2 formative stages are embedded in the survey items. Stage 1 focus group participants helped to develop and pilot the question used in stage 2 NGT sessions to capture the variety of ideas expressed in the groups. The parents who participated in stage 2 generated a total of 139 different responses. Because the highest prioritized responses were included in the stage 3 survey, the reader can view stage 2 results by noting which items are included in the survey.
Of 1212 eligible families, 799 (66%) responded to the survey. Seventy-three percent of respondents were female, 97% described themselves as parents, and 1% were grandparents. Of the 799 parents who responded, 10% had a child with diabetes diagnosed for <1 year, 35% with diabetes for 1 to 3 years, 17% with diabetes for 3 to 5 years, and 38% with diabetes for >5 years. Respondents differed from nonrespondents by several sociodemographic variables (Table 2). Although efforts to recruit racial minorities and the parents of children in poor control did improve participation rates, Table 2 reveals that we did not achieve equal participation. Statistically significant differences were seen in regard to race, patient gender, insurance type, and diabetes control.
There was an association in this sample between race and SES (using insurance as a proxy measure) and between metabolic control (represented by HbA1c) and SES. Ninety-four percent of the white families who responded to the survey were covered by private insurance, as compared with 60% of the black families. Ninety-three percent of families with children in good metabolic control (HbA1c <8%) were covered by private insurance, whereas 77% of families with children in poor control (HbA1c >9.5%) had private insurance.
The Kruskal-Wallis test was used to examine the differences in Likert scale ratings among 8 subgroups: gender of survey respondent, gender of child, age of child (0–5 years, 6–10 years, 11–13 years, and 14 years or older), white and black, good versus poor diabetes control, public versus private insurance, families with a diagnosis for <1 year versus those with more experience, and families with a male versus female child with diabetes. Table 3 lists the Kruskal-Wallis P values for items for which ratings differed significantly (P < .05) among 5 subgroups, and differences among the other 3 groups are described in text. Because the parent-centered process was meant to be hypothesis generating rather than hypothesis testing, we had no a priori hypotheses on differences among these subgroups. The revealed differences may allow clinicians to consider how better to approach the concerns of different families.
The female respondents (73.3%) rated 12 items statistically different from the male respondents; in each case female respondents rated them higher. It is interesting that the gender of the affected child made little difference in how parents rated any of the items. Only whether people at school know how to manage diabetes approached a statistically significant difference in rating (P = .050), with parents of a male child rating the item lower than girls’ parents.
The age of the child made a difference in how parents rated 10 of the items. Generally, the parents of children who were 10 years and younger rated these 10 items higher than the parents of the pre- and early adolescents and rated them much higher than parents of adolescents. The only item that had the reverse trend was predictably, "If the child takes more responsibility for his/her diabetes as he/she gets older."
There was little difference between the ratings of the 14.4% of parents with <1 year since diagnosis versus those with more experience. The more experienced parents rated both whether a child has a regular schedule for eating (P = .022) and whether he or she can join a support group (P = .055) as significantly less important.
Families with only 1 adult to manage diabetes care rated 3 items as more important than did respondents who represented households with more adults to share responsibility: good communication between the family, diabetes team, and insurance company (P = .046); the diabetes team does not judge or blame the family for poor metabolic control (P = .002); and the diabetes team knows about the important issues in a family’s life (P = .005). Families with 2 or more adults responsible for diabetes care rated higher the importance of the child’s knowing which foods affect blood sugar (P = .010).
DISCUSSION
The parent-centered process facilitated parents’ response to the open-ended question, "What makes a difference in whether a child and family will ‘live well’ with diabetes" Their responses included a wide array of factors that have an impact on a parent’s ability to manage his or her child’s diabetes while creating a "normal" environment for the child to develop and the family to function. The parents’ responses included many items that seem unrelated but when viewed together illustrate the context in which parents care for their child. They also provide some insight into the family’s resilience in successfully adapting to the challenges of living with diabetes. The factors range from the concrete skills and knowledge base that they need to manage glucose levels to the interface that they must negotiate with an outside world that is often ignorant of the special needs of a child with chronic disease. Parents describe the sources of support, including the health professional team, from which they derive the strength to cope with the practical and emotional difficulties associated with caring for a child with diabetes. In parallel, some of their points illustrate the frustration and shame that they experience when not supported sensitively. Finally, they describe some of the family dynamic issues or inherent child traits that make a difference in dealing with the challenges of diabetes.
Although it is important for clinicians to understand the variety of factors that affect diabetes management, what matters more to families is the clinicians’ grasp of the life experience of raising a child with diabetes. The literature describing the diabetes professional–patient relationship suggests that well-intentioned professionals sometimes misjudge the perspective of families, thereby missing opportunities to be of greatest service.27–30 This discussion organizes the parents’ perspective into several themes, each of which describes an aspect of a multilayered approach that health professionals might use to optimize care for patients with diabetes. Qualitative insight from the preliminary analysis of the focus groups and interviews are included to describe the subtext behind some of the ideas.
Reinforcing the Importance of Education
Many of the items, including 4 of the top 9 items, deal with the skills and knowledge base that serve as the foundation of diabetes management.31,32 These items include the child’s knowing which foods affect blood sugar, maintaining a regular eating and testing schedule, and being well-informed of the benefits of good control and risks of poor control. The importance of the team’s keeping the family up to date was rated as the most important item by black families and was generally highly rated. Other adult-centered items included the importance of the adult’s being well informed about nutrition and being able to manage meals when eating out. The interviews reinforced that education begins at diagnosis and should remain the central theme of office visits. They suggested that older children must hear health messages reiterated from someone other than their parents, emphasizing direct communication between health professionals and children.
Making Clinicians, Good Treatment, Supplies, and Services Accessible
Parents repeatedly told us in interviews that they live with diabetes 24 hours a day, 7 days a week, reinforcing that much of what they cope with surfaces within their daily life outside the confines of routine scheduled visits. The high rating of the item, "If the adult in charge can talk to or see the diabetes team when needed," reflects how important immediate accessibility is to parents. Next, parents need help negotiating with the insurance industry to ensure that they get appropriate services and supplies. Table 4 reveals a sharp difference between how important this was considered by families who were covered by public insurance (rated 4 of 30 items) relative to those who were privately insured (rated 18 of 30 items). It was surprising that there was not a statistically meaningful difference between experienced families and families with a new diagnosis, perhaps suggesting that working with insurance does not become easier over time. Finally, there is a deeper meaning to keeping parents "up to date" beyond family education. Parents describe the anxiety of waiting for a cure and of desiring less invasive intervention techniques (eg, noninvasive blood glucose monitors, inhaled insulin). Parents reported that if their clinicians consistently shared new research and technology, then it would spare them the added responsibility of searching for new information.
Strengthening Community-Based Supports
Some of the parents’ ideas reflected the importance of their not feeling isolated as they handle diabetes. Although it is not realistic for the diabetes team to produce a supportive external environment for the family, the team certainly can explore and enhance existing supports. For example, survey respondents, particularly parents of younger children, rated highly the importance that people at the child’s school know how to handle diabetes. Parents explained that they worry that a diabetes crisis will happen with school personnel ill equipped to respond. Aware of this issue, the American Diabetes Association has published clinical practice recommendations to address the education and involvement of school personnel as essential to diabetes management.33,34
Another item described how important it was for the extended family to be able to support the family. Parents often described themselves as the sole caregivers, who cannot turn to family members or babysitters for respite because they are untrained or fearful about diabetes care. Consequently, they are less able to balance their own needs, increasing their general stress levels. Sullivan-Bolyai et al.5 reported mothers describing their mothering style as "constant vigilance." The intensity of this constant vigilance with lack of supports overburdened some mothers, who reported physical and/or emotional problems.
Finally, although the importance of faith and a faith community was not ranked highly by parents in general, it was rated higher by black parents and certainly is of central importance to many other families. Although it is not the health professional’s role to instill faith, it is worth exploring with families whether faith serves as an important support system for them.
Looking for the Strength in Families
Parents spoke of the disappointment and even shame that they feel when diabetes management is not going well or the child or adolescent becomes increasingly resistant to their management. Through the item, "If the diabetes team respects the strengths of the family," they expressed the importance of clinicians’ recognizing that much of what parents do is intended to be in the best interest of the child. They elaborated on how much easier it was to implement change when clinicians started from a point of understanding that they were building on existing family strengths.
The item, "If the diabetes team knows about the important issues in a family’s life," seemed to hold 2 polarized meanings. First, some people wanted the diabetes team to know their personal life issues so that the team might help to negotiate those challenges or at least understand that diabetes was not their only burden. Others felt as strongly that issues unrelated to diabetes were of no concern to the health team.
The interviewees offered different interpretations of the item that referred to the importance of the family working together. The first way of interpreting this item is straightforward; it recognizes the strength of families who work together and acknowledges how much easier diabetes care is to implement when it is not shouldered alone. A second point relates to how difficult it is when family members disagree on the level of vigilance in mealtime preparation, schedules, or testing. Some talked about how helpful it would be if the diabetes team offered a consistent message to both parents and provided a forum for parents to discuss and negotiate their different approaches.
Supporting Children and Adolescents
One of the greatest challenges of chronic illness is for parents and children to remain clear that the illness defines only a small part of the child. It must remain a priority for the child to meet all age-appropriate developmental tasks. Precisely because the office visit is designed to focus on the disease, it may serve as a particularly salient time to remind the family that the disease is only a small part of the child’s life.
Through several items, parents relate their concerns about the emotional and mental health of their children. First, parents indicate the importance of a child having a positive attitude and still feeling accepted even though they have diabetes. This merits direct discussion between children and their clinician on a routine basis. Health professionals can equip children with the skills to explain their illness to other children. Because children often tease about what they do not understand, children who are able to explain their illness to peers may eliminate the mystery and, perhaps, a source of isolation. The parents also stated that whether the child can cope with the stress and sadness associated with diabetes makes a significant difference to whether the child will ‘live well’ with the illness. Children with chronic disease are at greater risk for anxiety or depression that may merit referral to a mental health professional.35–37 To be most helpful, diabetes clinicians need to incorporate consistently into their care a biopsychosocial approach and have an appropriate referral network for when greater emotional needs arise.
Although availability of support groups for children was considered important enough to be included among the survey items, it was generally rated low. However, 8% of parents thought that it would make an extreme difference. This suggests that clinicians should ask individual families whether they think that a support group might be helpful. Additional research is warranted to explore for whom support groups would be most beneficial.
There is a wide body of research that addresses the special challenges that adolescents with diabetes face.13,38–40 During a time when young people are trying to fulfill the normal task of achieving independence, they must deal with parents who are worried that they will be incapable of caring for themselves and suffer dire consequences as a result. Furthermore, so much energy during adolescence is devoted to fitting in, to being "normal." In direct opposition to normalcy, they have to attend to their diabetes several times a day, each time reminding them of their difference. With this in mind, it is not surprising that adherence declines during adolescence.30,41
Hanna and Guthrie12 found that parental involvement in diabetes management decreased from early to middle to late adolescence. Anderson and colleagues42,43 reported that children and adolescents whose parents were more involved in diabetes management tested blood sugar more frequently and were in better glycemic control. The parents in our study reported wanting a diabetes team that "knows how to deal with a child’s emotions and attitudes when he/she is a teenager" and that could help to prepare their child to take more responsibility for diabetes care as he or she gets older. Parent interviewees believed that professionals might be better positioned to teach adolescents, precisely because adolescents are seeking independence from their parents.
Removing Inadvertently Offensive Interactions From the Health Care Setting
Many participants were not subtle when they spoke of interactions that they experienced as offensive. They described experiencing shame and anger when they felt blamed or judged for their child’s poor metabolic control. The relative ranking of this item was not dramatically higher among those in poor control, suggesting a widespread feeling that parents are held unduly responsible. Clinicians must remain aware that families may experience as recrimination the feedback that is intended to reinforce better control. Another item, "If the diabetes team treats all patients and families equally no matter what race or culture," indicates that some families perceive that they have not been treated fairly. A final item reflected the exasperation parents experienced when clinicians did not understand "that families live with diabetes 24 hours a day and 7 days a week." This item was explained in 2 different manners. First, it reflected the frustration that they feel when clinicians are condescending, failing to understand that parents hold an expertise earned through real-life experience. Second, some parents expressed resentment that clinicians did not understand that the level of constant vigilance expected of them was unrealistic in the context of their other responsibilities.
Study Limitations
The greatest strength of this study design is that it facilitated the parents to develop, prioritize, and explain their own perceptions rather than respond to specific interests of the investigative team. This allowed topics to arise that may have been uncomfortable for the center, including the perceptions that we judge patients and may not honor parents’ expertise. It also places each concern in the context of a wide variety of concerns that affect the patient’s and the family’s ability to succeed. However, there are limitations to this study. First, all participants are from a large diabetes center located within a children’s hospital or one of its outreach sites. Some of the ideas may reflect specifically on this center and may not generalize to other regions, centers, or primary or specialty care settings. Second, the two thirds of our families who participated in the survey differed in some ways from the nonparticipants. It is likely that a higher proportion of nonparticipants are from less organized families or families who are less pleased with our services. We acknowledge that we may be missing the view of precisely those families from whom we need to learn the most and to whom we are obligated to serve more effectively. Most important, this is a study that gathered perceptions; it is not an outcomes study. Therefore, we cannot draw conclusions about how best to act on the concerns that parents delineated.
Implications
Parents at our diabetes center shared their wisdom and experience and in doing so revealed a wide array of factors that make a difference in whether they can successfully raise a child who both is emotionally resilient and has good diabetes control. Many of the factors that they say influence their success can be affected by clinicians who are sensitized to their needs, especially if clinicians are willing to incorporate a biopsychosocial model of care that addresses issues beyond diabetes care in the office setting.
This mixed qualitative-quantitative database of parents’ wisdom and experience deserves additional analysis. Incorporating into clinical practice these data and the strategies suggested by parents will allow clinicians to anticipate and address more effectively the needs of their patients. Forthcoming publications will share the qualitative wisdom offered by parents regarding how best to address some of the concerns raised here. Ideally, other centers would perform similar patient-centered processes to determine whether these data generalize to other regions and populations. Ultimately, outcomes based research will need to determine whether health care teams that respond to the biopsychosocial and contextual needs of families result in better metabolic control and children who are emotionally and practically prepared to incorporate healthy lifestyles to be carried into adulthood.
ACKNOWLEDGMENTS
The Oberkotter Family Foundation supported this research.
We thank Malaka B. Jackson, MD; Cathy Jay, RN, BSN, CCM; Morris Johnson, MS, CSP; Maxine Johnson; Jane Kennedy, MSW; and Susan Dumser, RN, MSN for assistance with this study. Above all, we thank the families of our Diabetes Center for sharing their wisdom with us.
FOOTNOTES
Accepted Feb 4, 2005.
No conflict of interest declared.
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