Original Article

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Inuence of Caregiver Stress and Coping on Glycemic Control of Young Children With Diabetes
Lynda Stallwood, PhD, RN, CPNP
ABSTRACT Introduction: The purpose of this research was to examine the inuence of caregiver stress, perceived stress and coping on home management and glycemic control of young children with type 1 diabetes. Method: A correlational design of 73 conveniently sampled caregivers of children younger than 9 years of age receiving routine care in an urban hospital diabetes clinic completed the Problem Areas in Diabetes Survey, the Appraisal of Diabetes Scale, the Coping Health Inventory for Parents, and the Diabetes Self-Management Prole. Data were analyzed using Pearson product-moment correlation. Results: Higher caregiver stress was associated with lower Hgb A1c levels. Higher levels of home management were associated with lower Hgb A1c. No signicant relationship was noted between caregiver coping and home management. Discussion: Caregivers managing their childs type 1 diabetes rated themselves as having stress, and those able to maintain their childs glycemic control indicated higher levels of perceived stress. It is essential that practitioners assess caregiver stress regardless of the childs apparent glycemic control. J Pediatr Health Care. (2005) 19, 293-300.

Each year more than 13,000 children in the United States are diagnosed with type 1 diabetes (National Institutes of Health, n.d.). According to Gale (2002), the global incidence of type 1 diabetes is expected to increase by 40% between 1998 and 2010, with the largest increase expected in children younger than 4 years. Type 1 diabetes mandates that numerous and specic activities be conducted on a daily basis. These activities, referred to as home management, include monitoring diet, levels of blood glucose, urine ketones, and physical activity, in addition to insulin injections (Plotnick & Henderson, 1998). The goal of home management is to reduce the short-term and long-term complications of the disease by maintaining blood glucose levels within healthy parameters, referred to as glycemic control. Parents and primary caregivers of young children bear the responsibility of providing home management activities because these children are unable to take care of themselves and their diabetes.

Lynda G. Stallwood University of Colorado-Health Sciences Center, Denver, Co. Funding for this research was provided in part by Sigma Theta Tau, Lambda Chapter. Reprint requests: Lynda Stallwood, PhD, RN, CPNP, 4601 S. Balsam Way, #1524 Littleton, Co 80123; e-mail: lstallwood@hotmail.com. 0891-5245/$30.00 Copyright 2005 by the National Association of Pediatric Nurse Practitioners. doi:10.1016/j.pedhc.2005.04.003

BACKGROUND Previous research has indicated that parents are extremely vulnerable to disparities in their childs health status and that the nature (e.g., benign, chronic, temporary) and timing (e.g., infancy, childhood, adolescence) of the illness guide the parental response and coping styles required to meet the challenges of caring for an ill child (Melnyk, Feinstein, Moldenhouer, & Small, 2001). Parental responses to their childs chronic illness diagnosis have included depression (Blankfeld & Holahan, 1996); stress (Coyne & Dip, 1997; Viner, McGrath, & Trudinger, 1996); shock, defensive retreat, and increased anxiety (Koizumi, 1992); overprotection (Holmbeck et al., 2002); exhaustion (Elliott & Luker,
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1997); and chronic sorrow (Lowes & Lyne, 2000). Diabetes-related Stress According to Polonsky and colleagues (1995a), diabetes-related stress is in itself a major contributor to less successful diabetes home management separate from general stress. Diabetes-related stress is the cluster of emotions experienced as a result of diabetes home management demands and the worry associated with the short-term and longterm effects of the disease. Coping Diabetes-related responsibilities are added to the routine duties of child rearing and subsequently affect and are affected by how parents cope in general with their childs di-

has been demonstrated in a number of studies, including the Diabetes Control and Complications Trial (DCCT), 1996, and the United Kingdom Prospective Diabetes Study (UKPDS), 1998. Glycemic control is accomplished on a daily basis by adhering to the prescribed diabetes home management regimen and is considered the outcome of diabetes management. The American Diabetes Association (ADA) has provided age-specic glycemic controls that address the unique needs of the developing child with diabetes (Silverstein et al., 2005). The DCCT (2002) and its follow-up study have shown that intensive diabetes management has signicant and long-lasting health benets. Interested in assessing parental responses to their childs diabetes

Another stress-related nding was the negative association between stress and age of the affected children, suggesting that families of younger children have higher levels of stress.
abetes (Grey, 2000). Such coping mechanisms may include family support, support from those outside the family, as well as relationships with health care providers and caregivers of chronically ill children (McCubbin, 1991). Parents and caregivers overwhelmed with the added pressures of their childs diabetes home management responsibilities may be unable to fulll their obligations as general caregiver as well as diabetes home manager, placing their childs short-term and longterm health at risk (Hatton, Canam, Thorn, & Hughes, 1995). Glycemic Control The importance of maintaining blood glucose levels within a target range to avoid the complications associated with suboptimum levels
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ing stress in preschoolers with type 1 diabetes. The sample included 40 children (ages 1 to 6 years) with type 1 diabetes in comparison with 40 other healthy children matched for age, sex, parental marital status, and socioeconomic status. Parental measures included the Behavioral Pediatrics Feeding Assessment Scale (BPFAS; Crist et al., 1994) and the Parenting Stress Index (PSI; Abidin, 1996). Higher scores on the BPFAS and PSI suggested maladaptive feeding behavior and higher stress, respectively. Without exception, parents of children with type 1 diabetes reported higher problem and frequency scores on the BPFAS and PSI when compared with healthy control subjects. In a study of 29 parents of chronically ill children, Ray and Ritchie (1993) found that parental perceptions of high caregiving burden were associated with greater stressfulness and the use of few coping strategies. Parents listed ensuring care was performed as one of the most helpful coping strategies. Summary The literature indicates that caregivers of children with a chronic illness are at risk for stress. Although studies examining caregiver stress resulting from chronic illness in general have been conducted, very few have focused on the unique needs of caregivers of young children with diabetes. In addition, fewer still have focused on the level and perception of diabetes-related stress of this group and the inuence these concepts have on diabetes home management and glycemic control. This purpose of this research was to assess diabetes-related stress, perception of stress, and coping in an attempt to discover their inuence on home management and glycemic outcomes. In so doing, meaningful interventions addressing specic caregiver needs may be developed to support parents as they provide home management and enhance the health outcomes of their young children.
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diagnosis, Landolt et al. (2002) interviewed parents of 38 children, ages 6.5 to 14 years, who were newly diagnosed with type 1 diabetes to assess for posttraumatic stress disorder (PTSD) 6 weeks after diagnosis. Of the sample, 24% of the mothers (n 9) and 22% of the fathers (n 8) met full Diagnostic and Statistical Manual, 4th edition (DSM-IV) criteria for current PTSD. An additional 19 mothers (51.4%) and 15 fathers (41.7%) met the criteria for partial or subclinical PTSD. PTSD symptom severity was not signicantly correlated with sociodemographic or medical variables. Powers et al. (2002) examined the diabetes-related tasks and subsequent parental stress related to nutrition management. They focused on mealtime behaviors and parent-

Research Question and Conceptual Framework As part of a larger project, this research focused on answering the question, What are the relationships of the caregivers diabetes-related stress, perceived stress, and coping with home management and glycemic control? The conceptual framework guiding this research was the Double ABCX Model of Family Adaptation (McCubbin & Patterson, 1983a, 1983b), which is an expanded form of Hills (1949) ABCX Model, which included the concepts of stress, resources, perception of stress, and adaptation. Based on their longitudinal research, McCubbin and Patterson viewed these concepts as occurring over time. As a result, they expanded Hills original model by

ties generated by the family to help manage the situation. The model shows coping as having a direct relationship with stress and perception of stress as well as acting as a mediator between stress and adaptation. Adaptation is the expansion of Hills (1949) original crisis concept and is viewed on a continuum of bon-adaptation to mal-adaptation depending on the familys outcome. These model concepts were measured in this research and were viewed in the context of occurring over time, which works well with a chronic illness such as diabetes. METHODS Design, Setting, and Sample This research used a cross-sectional correlational design and was

quired: (a) having type 1 diabetes for a minimum of 3 months, and (b) free of a major co-morbid chronic illness. All affected children were taking a combination of short-acting and long-acting insulin in two to four daily injections dependent upon their unique responses to their disease. Sampling plan. Potential participants were conveniently sampled from the clinic waiting room prior to being seen by the diabetes health care team. All but one participant chose to have the data collector read aloud and record their responses on the data collection instruments. The single participant who self-completed the data collection guide did so with the data collector sitting nearby available to answer any questions. Data Collection Instruments Concept of stress. The concept of stress, which is viewed as being independent of and a major contributor to the efcacy of diabetes home management apart from general emotional distress, was measured using the Problem Areas in Diabetes (PAID) scale (Polonsky et al., 1995b). This concept was dened as the pressures that accompany the stress of home management (LoBiondo-Wood, 2003). Questions were answered using a 5-point Likert type response, Not a problem to Serious problem, with higher scores indicating higher stress levels. Questions included Not having clear and concrete goals for your diabetes care? and Feeling unsatised with your diabetes physician? Pronoun exchanges in the instrument were necessary to accommodate its completion by caregivers rather than by the affected child. The Cronbachs for PAID using the pronoun exchange was .90 compared with the authors reported Cronbachs of .95 (Polonsky et al., 1995a). Polonsky et al. (1995b) reported that negative associations have been noted between PAID and diabetes home management activities. Validity of the instruSeptember/October 2005 295

This research suggests that allocation of support services also should include the assessment of families who are successful in their diabetes home management efforts because they tend to have higher levels of diabetes-related stress.
labeling it as the pre-crisis phase, which takes place at the time of the initial stressor, and added the postcrisis phase, describing adaptation to the stressor overtime. They also added the concept of coping to the postcrisis phase, which acts as a mediator between stress and adaptation. For the purposes of answering this research question, the model concepts of stress, perception of stress, coping, and adaptation were measured. According to this model, the postcrisis concept of stressor, known as pile-up, is activated by the initial stressor and the subsequent pressures of the stressor over time. Perception of the stressor is dened as the meaning the family assigns to the situation while coping is dened as the activiJournal of Pediatric Health Care

conducted during regular ofce hours in the waiting area of two outpatient diabetes clinics of a Midwestern childrens hospital. The sample included 73 primary caregivers of children younger than 9 years who were receiving medical treatment specic to diabetes at the clinics. According to Cohen (1988) and Polit (1996), 92 participants would have provided a mean effect size of a .13 and power of .80. Rationale for the change in sample size is provided in the discussion. Eligibility criteria. The caregiver inclusion criteria included being: (a) the primary caregiver of diabetes-related home management for a child younger than 9 years, and (b) able to speak and understand English. Child-specic criteria re-

TABLE 1. Results from diabetes and coping measures

ADS PAID DSMP CHIP

.60 .90 .42 .86

735 080 079 0135

15.9 25.4 59.1 95.4

3.8 14.8 4.4 16.5

ADS, Appraisal of Diabetes Scale; PAID, Problem Areas in Diabetes Scale; DSMP, Diabetes Self-Management Prole; CHIP, Coping Health Inventory for Parents.

ment with the pronoun exchange was not available and an analysis was not completed, because although the pronoun changes shifted the focus from the affected individual to the caregiver, the focus did not waiver between the two but remained on the caregiver. Subsequent instruments were revised for the identical reason. Perception of stress. Perception of the stressor was measured using a revised version of the Appraisal of Diabetes Scale (ADS; Carey et al., 1991) and is dened as the meaning the caregiver assigns to the situation (LoBiondo-Wood, 2003). The revision, which included a pronoun exchange, was necessary because the instrument was designed to be completed by the affected individuals rather than by caregivers. This seven-item questionnaire consisted of a 5-point Likert type response with a Cronbachs of .60 with the pronoun exchange. Questions included, How upsetting is your childs diabetes for you? and How much control over your childs diabetes do you have? Higher scores indicated higher levels of perceived stress. Coping. Coping was measured using the Coping Health Inventory for Parents (CHIP) scale (McCubbin, McCubbin, Nevin, & Cauble, 1979). The CHIP scale contained 45 selfreport items assessing the respondents perceptions of mechanisms currently being used to manage life with a chronically ill child and as such links closely with the middlerange theory concept of coping. The instrument examined three coping patterns by implementing
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questions about: (a) family life, for example, Trying to maintain family stability; (b) external relationships, for example, Concentrating on hobbies; and (c) relationships with health care providers and other caregivers of chronically ill children, for example, Talking with the medical staff when we visit the medical center. Each was measured using a 4-point Likert scale ranging from 4 extremely helpful to 0 not helpful. Scoring was accomplished with unweighted summing of caregiver ratings for each coping pattern (McCubbin, 1991). Higher scores indicated higher levels of coping. The total scale Cronbachs for this sample was .86. Measures of glycemic control and home management. Glycemic control was operationalized by hemoglobin A1c (Hgb A1c) levels. Certied phlebotomists employed by the hospital drew the childrens ngertip-derived assay in the Diabetes Clinics based on clinic visit protocol. Host clinic Hgb A1c target ranges were 7 mg/dL to 9 mg/dL. Home management was assessed with the Diabetes Self Management Prole (DSMP), a semi-structured interview developed by Harris et al. (2000) designed to assess ve domains of diabetes management for the preceding 3 months. These domains included questions regarding: (a) exercise frequency, (b) hypoglycemia awareness and preparedness, (c) food measurement and diet alterations based on activity and insulin administration, (d) frequency of blood glucose testing, and (e) timing and technique of insulin administration. Higher scores indicated more

meticulous management. Revisions to this scale consisted of adjusting the focus of the questions from self management to management of a young child with diabetes. Internal consistency for the DSMP was obtained following the instruments administration to 105 youths 6 to 15 years of age and their parents or caregivers and yielded an overall score of .76. Subscales were unreliable, less than .50, when used separately. The total scale Cronbachs a for this sample was .42. Harris et al. (2000) reported total score interrater agreement of .94 and .85 to .97 for a total score range. Possible score ranges for each research instrument as well as the reliabilities, means, and standard deviations specic to this sample are listed in Table 1.

Procedure for Data Collection and Statistical Analyses The investigator received approval of all research materials from the Human Investigation Committee of the research setting. All items in the data collection guide were read to the participants by the investigator. Only one participant preferred to self-read the documents. Hemoglobin A1c levels were obtained through chart review. Measures of central tendency, dispersion, and distribution were calculated to describe the sample, to check for violations of univariate and multivariate normality, and to determine the manner in which individual variables should be treated prior to further analysis (e.g., recoding, etc.). Data were analyzed using Pearson product-moment correlation.
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FINDINGS The sample consisted of 73 caregivers, 1 per child, from a database of approximately 100 children younger than 9 years of age with type 1 diabetes receiving routine outpatient care at the hospital. The participants ages ranged from 19 to 66 years (M 35.1, SD 8.6). Level of education ranged from 10 years (8.2%) to more than 16 years (6.9%). Fifty-seven (78.1%) of the participants reported an income. Of these, 43 (75.4%) reported an annual income less than $50,000. Time since diabetes diagnosis ranged from 3 months to more than 7 years (M 2.5, SD 1.9). Additional descriptive statistics are listed in Table 2. Research Question Results from the correlational analyses suggested that higher levels of diabetes-related stress, indicated by higher scores on the PAID scale, were signicantly associated with higher levels of perceived stress (ADS), r(73) .57, P .01. Signicant but modest negative relationships were found between perceived stress (ADS) and the Hgb A1c level at project enrollment, r(73) .27, P .05, as well as between home management (DSMP) and Hgb A1c, r(73) .31, P .01. Lastly, a negative association was noted between perceived stress (PAID) and age of affected child, r(73) .27, P .05 (see Table 3). Grouping variables. In the interest of more fully describing the correlational results, grouping variables were created for the variables Hgb A1c and perceived stress measured by the ADS. Hemoglobin A1c results were dichotomized into two groups based on the host clinic guidelines. Levels considered outside of the host clinic target range were those that were below 6.9 mg/dL and greater than 9.1 mg/dL. Levels that were at or between 7 mg/dL and 9 mg/dL were placed into the second group, those scores within the target range. The ADS scores were dichotomized into two groups, those scores greater than or
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TABLE 2. Descriptive sample characteristics

Age of participant 1930 years 3147 years 4866 years Level of education 1011 years 1214 years 1516 years 16 years Annual income $10,000$30,000 $30,000 $50,000 50,000 $80,000 80,000$200,000 Not reported Time since diagnosis 2.5 years 2.5 years Number of children 2 children 2 but 5 children 5 children Ethnicity White African American Hispanic Other Relationship Mother Father Other

35.1 22 46 5 10 45 13 5 24 19 8 6 16 39 34 1 child 24 23 6 37 29 3 4 62 8 3 28.4 60.8 6.8 17.0 8.2 61.6 17.8 6.9 $30,100 32.9 26.0 12.3 8.2 22.0 53.4 46.6 20 32.9 31.5 8.2 50.7 39.7 4.1 5.6 84.9 11.0 4.1 2.5

8.6

17.2

$37,700

1.9

27.4

equal to the total samples mean of 16 and those less than or equal to 15 with higher scores indicating higher levels of perceived stress. According to the ndings, the participants scored most often (n 21) in the within range category for Hgb A1c. Interestingly, these same individuals scored the highest percentage in the above mean category for perceived stress (28.8%). Additional results are presented in Table 4. DISCUSSION The participants were predominately female caregivers nearly equal in number in two major ethnic backgrounds, White and African American. The ethnic backgrounds of the participants mirrored that of the clinic as a whole, supporting the suggestion that the sample was a reasonable representation of the clinic population.

The correlation between level of diabetes-related stress (PAID) and perceived stress (ADS) identies a direct relationship between the concepts of stress and perception of diabetes-related stress. This direct relationship, however, is not delineated in the Double ABCX Model of Family Adaptation. This nding may indicate a reduced need to measure both concepts. It also may suggest if the two concepts remain in the model that a line of correlation between them be included in the model diagram. Another stress-related nding was the negative association between stress and age of the affected children, suggesting that families of younger children have higher levels of stress. It is reasonable to consider that caregivers of younger children provide more care and must solely rely on their personal assessments of the childrens health status rather
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TABLE 3. Pearson correlations for variables of interest and research scales (N

73)
8

PAID ADS CHIP Income Age Hgb A1c Time DSMP

1.0 .57** .00 .00 .27* .11 .18 .17

1.0 .08 .13 .04 .27* .18 .05

1.0 .11 .01 .17 .05 .06

1.0 .33* .31** .08 .06

1.0 .01 .24* .04

1.0 .01 .31**

1.0 .14

1.0

PAID, Problem Areas in Diabetes Scale; ADS, Appraisal of Diabetes Scale; CHIP, Coping Health Inventory for Parents; income, annual household income; age, that of affected child; time, length of time since diagnosis; DSMP, Diabetes Self-Management Prole.

TABLE 4. Grouping hemoglobin A1c levels and perceived stress

Target range Within Outside Target range Within Outside Missing 21 18 12 17 5 28.8 24.7

Above mean 30.1 26.5 Below mean 16.4 23.3 6.8 17.6 25.8 74.2 100.0 30.1 56.6

Hemoglobin A1c values within the target range mg/dL. Per-ceived stress scores above the mean stress.

7.0 mg/dL and 9.0 mg/dL and outside the target range 6.9 mg/dL and 9.1 16 and below the mean 15 with higher scores indicating higher levels of perceived

than receiving even minimal assistance or verbal feedback from them. The negative relationship between perceived stress (ADS) and Hgb A1c is contrary to the ndings of Parkerson, Broadhead, and Tse (1995), who found higher levels of patient-perceived family stress were associated with higher Hgb A1c levels. It may be that perceived family stress measured in their study is a different concept from diabetesrelated stress in this research, thus accounting for the inconsistent ndings. It also may be that perceived stress is a motivator for glycemic control. This nding places a positive spin on stress not previously discussed. The goal of diabetes-related home management activities is to manage the disease. This research suggests that allocation of support services also should include the assessment of families who
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are successful in their diabetes home management efforts because they tend to have higher levels of diabetes-related stress. The negative relationship between glycemic control (Hgb A1c) and home management (DSMP) suggests that children of caregivers with higher levels of home management are able to achieve lower Hgb A1c levels. This association supports the importance of diabetes-related activities recommended by the ADA (2004) that maintain safe levels of blood glucose, thereby reducing the risk of shortterm and long-term sequelae from the disease. It also emphasizes the importance of supporting families as they engage in their home management activities. Grouping Variables Hemoglobin A1c. Because the largest percentage of affected childrens Hgb A1c ranges were within

the target range and above the mean perceived stress score, it may be interpreted that more caregivers perceive higher levels of stress as a result of close adherence to the diabetes home management regimen. The second largest percentage of participants also fell above the mean perceived stress score but had scores outside the target range set by the clinic. This cumulative nding of high levels of perceived stress is consistent with previous research stating that caregivers of children with type 1 diabetes experience high levels of stress (Powers et al., 2002; Ray & Ritchie, 1993). Home Management and Coping Rather surprisingly, coping did not play an inuential role in home management or glycemic outcomes with this sample. The CHIP instrument used to measure coping had a high reliability for this sample (.86)
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and has been used successfully in samples similar to this research sample. It is unclear why coping had so few interrelationships in this research and did not support its role as a mediating variable between stress and adaptation as dened in the Double ABCX Model of Family Adaptation (McCubbin & Patterson, 1983a, 1983b). Strengths and Weaknesses Consistency in data collection was facilitated with the implementation of one data collector and one data entry individual. One-on-one interviewing provided the immediate availability of the data collector to answer any questions requiring clarication during the data collection phase. Additionally, the data

were viewed as a weakness. In an attempt to gain greater understanding of the reliabilities, a principal components factor analysis with Vaimax rotation was conducted on these scales. Two underlying components were noted in the DSMP, general behaviors and insulin administration, and in the ADS, emotional upset and control. Based on these ndings, these scales did not perform strongly in measuring the original concepts for this sample. Additionally, these instruments were originally designed to be completed by the affected individual rather than the caregiver, which may have inuenced their performance. The nal sample size (N 73) was slightly less than 91% of the 92 participants recommended by the

and denitions may require reorganization and/or clarication from those most recently published. Practice Perhaps one of the most important results from this research was the acknowledgement of high perceived stress in caregivers, especially in those with children with Hgb A1c levels within the target range. Diabetes education should include careful stress assessments of all families at time of diagnosis and periodically thereafter. In so doing, appropriate interventions based on the assessments should follow and be evaluated at each clinic visit. Additionally, resources to meet the myriad of practical as well personal needs of caregivers, for example, adequate child-care options and coping strategies, must be offered to encourage caregivers as they daily manage their childs diabetes and the stress associated with it. It is not enough to congratulate caregivers on their ability to maintain target Hgb A1c levels, but rather, acknowledging and supporting their efforts over time will provide them with the resources to continue to face their inevitable lifestyle of diabetes home management. In addition to the clinical evaluations stated above, additional research and scale development are strong contenders for future work. These efforts will more clearly dene the meaning, relationships, and role of concepts of importance to families adapting to the stress of diabetes home management and the development of interventions that will support these families over time. CONCLUSIONS Glycemic control is necessary to reduce the sequelae of diabetes. Caregiver stress and home management inuence glycemic control and must be the focus of care for families of young children with type 1 diabetes. Regular stress assessments of all caregivers should be implemented to identify those in need of intervenSeptember/October 2005 299

Perhaps one of the most important results from this research was the acknowledgement of high perceived stress in caregivers, especially in those with children with Hgb A1c levels within the target range.
collector read the interview guide to an overwhelming majority of the participants, reducing the risk of item misinterpretation. Many of the participants were comfortable participating in the research as a result of the positive relationship they have with the clinics health care providers. This type of relationship may have enhanced the reliability of the participant responses, thereby strengthening the quality of the research results. Having the sample reect the ethnic background of the clinic population strengthened its level of clinic representation and allows greater generalization of the results to the entire clinic. The rather low DSMP and ADS scale reliabilities for this sample
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power analysis. Data collection stopped at 73 participants as a result of correlational data analyses that suggested no additional signicance would be attained with recruitment of 92 participants. As a result, the inuence of the reduced sample size may be viewed as a marginal weakness of the research and may account for the modest signicance that was achieved. Due to the surprising inconsistencies between the models concept relationships and those detected in this research, it is possible the instruments used failed to measure the concepts consistent with the theoretical framework. It is also possible that caregiver interpretations of the model concepts have evolved over time so that concept relationships

tions to help them manage their stress and facilitate their ability to provide diabetes-related care for their children. REFERENCES
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