Factors affecting the level of burden of caregivers of children with type 1 diabetes Ewa Kobos, Jacek Imiela PII: DOI: Reference:
S0897-1897(14)00144-X doi: 10.1016/j.apnr.2014.09.008 YAPNR 50595
To appear in:
Applied Nursing Research
Received date: Revised date: Accepted date:
12 May 2014 11 September 2014 19 September 2014
Please cite this article as: Kobos, E. & Imiela, J., Factors affecting the level of burden of caregivers of children with type 1 diabetes, Applied Nursing Research (2014), doi: 10.1016/j.apnr.2014.09.008
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ACCEPTED MANUSCRIPT Factors affecting the level of burden of caregivers of children with
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type 1 diabetes
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Ewa Kobos,1 Jacek Imiela1
Social Nursing Institute, Health Education Faculty, Warsaw Medical University, ul. Ciołka
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27, 01-445 Warszawa, Poland
Corresponding author: Ewa Kobos
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phone/fax +48 22 877 35 97
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ul. Ciołka 27, 01-445 Warszawa, Poland
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e-mail: [email protected]
ACCEPTED MANUSCRIPT Abstract Aim: To analyze the correlations between factors associated with the family and child and the level of
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burden involved in care.
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Background: The management of diabetes places substantial demands on families and direct
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caregivers.
Methods: 112 direct caregivers of children with type 1 diabetes from 4 clinics in Poland evaluated
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their level of burden using the Caregiver's Burden Scale. The additional data were collected through interviews.
Results: The highest level of burden was associated with general strain and disappointment. The level of burden correlated with the child’s age and the professional status and level of education of the
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parents, and also with the number of glycemic tests at nighttime, the frequency of hyperglycemic
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episodes, and the number of hospitalizations.
Conclusions: Measuring the impact of factors influencing the level of burden in care makes it possible
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to develop effective programs supporting parents in providing care for children with type 1 diabetes.
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Key words: type 1 diabetes, caregiver burden, children.
Poland, despite the average incidence rate among European countries, is characterized by a high rate of growth in the incidence of type 1 diabetes in children (Jarosz-Chobot et al., 2011). It is estimated that this level exceeds 9% per year (Patterson et al., 2009). Cases of new onset as well as difficult-totreat acute complications of diabetes require hospitalization in a specialized unit of pediatric diabetology, and subsequently the child remains under the care of the diabetes clinic. The frequency of visits to the clinic is not limited, they are recommended every 6-8 weeks, at least four times a year (Recommendations of the Polish Diabetes Association, 2014).
ACCEPTED MANUSCRIPT Previous studies emphasize that the perception of burden is a complex issue. It may be defined, among other things, as the strain experienced by people responsible for supporting patients suffering from medical or psychological conditions (Encyclopaedia of Public Health, 2008). Type 1 diabetes in
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children involves sudden and acute complications that lead to development of practical and emotional problems for patients and their families. Parents may experience 3 types of stress factors associated with the disease: low-level stress in the form of everyday difficulties; medium-level stress, where
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diabetes is an element permanently present in the family profile and must be considered in most life
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situations; and traumatizing stress, which appears, among other times, during situations that endanger the life of the child (acute complications of diabetes) or at the time of diagnosis of acute complications (Cyranka, 2012). Many parents have concerns associated with chronic complications, low glycemic levels, and their child's stays away from home (Mellin et al., 2004). It has been demonstrated that the perception of burden resulting from caregiving to patients with diabetes is significantly correlated with
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the level of anxiety/depression in parents of children with diabetes (Malerbi et al., 2012). The
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correlation between expenses of medical care and the level of financial burden for the family in relation to the child's condition, place of residence, and insurance status was researched by Lindley
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and Mark (2010). Parents of children with diabetes may experience feelings of guilt about not providing appropriate care, which may lead to conflicts occurring more frequently in these families
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than in those with healthy children (Coffey, 2006). Treatment for patients with diabetes requires everyday self-testing of glycemic indices, nutrition, physical activity, and administration of insulin (Fichna et al., 2005). Parents may experience the feeling of constant burden with responsibility for providing care (Mellin et al., 2004). Treatment provided at home may also lead to misunderstandings between children and parents, which may prove very time-consuming. The results of studies indicate the following difficulties associated with providing care for children with diabetes: adhering to dietary restrictions, children becoming more independent, the need for conducting procedures, and learning difficulties (Gawłowicz and Krzyżaniak, 2009). Research shows that families of chronically ill children may experience problems in adjusting to the disease, possibly straining relations with the child and leading to increased conflicts
ACCEPTED MANUSCRIPT in the family, and difficulty in solving problems (McClellan and Cohen, 2007). Long-term provision of care may intensify burnout syndrome in parents (Nitka-Siemińska et al., 2008). Low levels of social activity, financial difficulties, and the notion that the child's disease has an impact on everyday life are
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associated with burnout syndrome (Lindström et al., 2011).
The purpose of this study was to evaluate the perceived level of burden among caregivers of children
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with diabetes via analysis of correlations between factors associated with parents and children and the level of burden of care. This study plays an important role in planning holistic care for families of
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children with diabetes, both in a hospital environment and in a family’s residence. Methods Procedure
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The study was conducted in 2010 at four randomly selected diabetes clinics in Poland (Figure 1). Interviews were conducted in the polyclinics during follow-up visits of caregivers and children. The
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caregivers completed the Caregiver's Burden Scale (CB Scale) forms at home and sent them back via
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post. Fifty caregivers were selected at each clinic. The groups of patients consisted of children with clinically diagnosed type 1 diabetes, diagnosed at least 6 months before the beginning of the study,
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aged 3-16 years, from complete families (not reconstructed), with siblings, without any chronic illnesses. The study involved a total of 200 caregivers who met the following criteria: declared themselves a direct caregiver for the child, lived with the child, devoted the largest amount of time and attention to the child in comparison to other family members, and submitted written consent to participate in the study. The return rate of CB Scale forms reached 56% (n=112) (Figure 1). Measurement Interview. A survey was used to collect data for analysis of the child’s and parent’s suffering from the disease. The survey consisted of 11 questions regarding the sick child, covering: age, type of education and special purpose center which the child attends, duration of the disease, methods of insulin therapy, frequency of glycemic indices blood tests, metabolic control of diabetes, number of hospitalizations,
ACCEPTED MANUSCRIPT type of monitoring of blood glucose levels, and the occurrence of acute and chronic complications of diabetes. The survey included five questions regarding the family and caregivers of the child, covering: place of residence, financial situation, family structure, number of generations of the family,
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and age, education, health condition, and professional situation of the parents.
Caregiver’s Burden Scale. With the author's written consent, the Caregiver's Burden Scale (CB
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Scale) was used to evaluate level of burden. The scale is used to measure the subjective perception of the level of burden. The scale consists of 22 questions and 5 subscales: general strain, social isolation,
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environment, emotional involvement, and disappointment. Each question was rated on a scale of 1 to 4 (not at all, seldom, sometimes, or often). The total score was calculated as a mean score of items constituting scales 1-4 and the 5 subscales. The higher the total score for a caregiver, the higher the level of burden. The following levels of burden have been assumed: low-level (1.00-1.99), medium-
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level (2.00-2.99), and high-level (3.00-4.00). A previous study on reliability showed high internal consistency for the five factors with Cronbach’s alpha values between 0.70 and 0.87, except for the
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environment factor. A reproducibility study showed kappa values between 0.89 and 1.00, except for
Data analysis
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the environment factor with a kappa value of 0.53 (Elmståhl et al., 1996).
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Statistica 9.0 PL software was used for conducting statistical analysis. Normal distribution of the analyzed variables (CB Scale) was tested using the Shapiro-Wilk test. For the purpose of statistical description, the author used percentages, arithmetic means, and standard deviations. The analysis of correlations and comparative analysis was conducted using non-parametric methods: Spearman’s correlation coefficient (correlations) and the Mann-Whitney U-test (significance of differences). The level of significance was set as p=0.05. Results
Study sample
ACCEPTED MANUSCRIPT The study involved 112 direct caregivers. All direct caregivers were married women. Of the total participants, 41.1% percent lived with their families in rural areas and 59% in urban
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areas. As judged by the caregivers, 59.8% of the families had a good financial situation,
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30.4% had an average financial situation, and only 2.7% described their financial situation as bad. There were two children in 51.8% of the families and one child in 21.4%. The majority
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of families (79.5%) had multigenerational households. The mean age of mothers equaled 39.6 years (SD=6.8) and the mean age of fathers was 43.2 years (SD=7.6). Thirty-four percent of
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mothers were aged less than 35 years, and 34.8% of fathers were aged above 45. Forty-two percent of caregivers had a secondary school education, 21.9% had some form of higher education, and vocational and middle school education accounted for 32.1%. An education level of no more than primary school was declared by 4.0%. Up to 47.3% of mothers were
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unemployed, whereas for fathers, the rate of unemployment equaled 8.0%. Chronic disease
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was reported in 9.8% of mothers and 14.3% of fathers (Table 1). The child patients were aged 3-16 years old. The mean age was 11.3 years (SD=3.6). The
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largest group of children consisted of children of primary school age (49.1%), then middle
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school age (34.8%), and then children of nursery age (16.1%). The group of patients consisted of 52.7% girls and 47.3% boys. Disease occurrence before the age of 3 was found in 46.4% of the children, occurrence between the ages of 3 and 6 in 32.2%, and occurrence after the age of 6 in 21.4%. The mean value of glycated hemoglobin among A1C children equaled 7.5% (SD=1.5%). For 46.4% of the children, metabolic control of diabetes was good (A1C up to 7%), it was average for 28.6% (A1C >7 ≤ 8), low for 15.2% (A1C >8 ≤10), and very low for 7.1% (A1C >10%). The majority of the children (75.0%) had insulin administered using an insulin pump, while 25% used an insulin pen. The parents declared a high frequency of glycemic tests in children during the daytime: 42.9% at 6-8 times, 20.5% at more than 8 times, and 36.3% at up to 5 times a day. Administration of one glycemic test at nighttime was
ACCEPTED MANUSCRIPT reported by 22.3% of the caregivers, 33.0% conducted two tests per night, and 5.4% conducted 4 or more. The children showed tendencies for increased glycemic levels in the last
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3 months. For 37.5% of the patients, glycemic levels exceeding 200mg/dL were observed
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more than a few times a week, and for 26.8%, they were observed daily. Glycemic levels below 60mg/dL were observed among 20.4% of the children a few times a week, almost
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every week for 17.9%, and for 7.1%, they were observed daily. More than one hospitalization (including yearly follow-up) from the time of onset of disease was reported in 21.4% of the
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children. The level of burden
In the studied group of caregivers, the total level of burden equaled 2.1 points.
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For separate subscales of the CB Scale, the levels of burden ranged from 1.6-2.41 points. The highest level of burden was observed in the "General strain" subscale and equaled 2.41 points. For
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this subscale, 23.2% of caregivers declared a high level of burden, 49.1% declared an average level of
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burden, and 27.7% declared a low level. Lower levels of burden were observed in the "Disappointment" subscale at 2.31 points. The rates of average and high levels of burden in the
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"Disappointment" subscale were comparable to the levels of burden in the "General strain" subscale and equaled 46.4% and 23.2%, respectively. A high level of burden was observed among 11.6% of participants in the "Isolation" subscale. An average total level of burden was declared by 51.8% of caregivers and a high level was declared by 7.1%.
The level of burden and factors associated with children Statistically significant negative correlations between the age of the sick child and the total score for level of burden (p=0.047) were determined using Spearman’s correlation coefficient (Table 2). A higher level of burden among caregivers of younger children with diabetes was observed in the following subscales of the CB Scale: Isolation (p=0.013), Disappointment (p=0.039), and Environment (p=0.004). No correlation was found between the age of the
ACCEPTED MANUSCRIPT child and the level of burden in the "General strain" subscale (p=0.173) or the "Emotional involvement" subscale (p=0.989). A positive correlation was found between the number of
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glycemic tests at nighttime and the level of burden in the "Emotional involvement" subscale
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(p=0.029). There is also a correlation between the number of hospitalizations of a child and the level of burden for a caregiver in the "Emotional involvement" subscale (p=0.024). It was
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determined that a higher frequency of hyperglycemic episodes leads to the perception of higher level of burden in the "Environment" subscale (p=0.048). No correlation was found
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between the level of burden for separate subscales and the duration of the disease, metabolic control of diabetes, number of glycemic tests during daytime, and the frequency of hypoglycemic episodes.
Statistically significant differences between the method of administration of insulin and the
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perceived level of burden for the caregiver in the "Emotional involvement" subscale (Z=-2.2;
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p=0.029) were found using the Mann-Whitney U-test (Table 3). Caregivers of children administering insulin using pens declared the highest level of burden in the "Emotional
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involvement" subscale. No statistically significant differences were found between the gender
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of the child and the level of burden in separate subscales of the CB Scale (p=0.622). Occurrence of complications did not influence the level of burden for caregivers in separate subscales of the CB Scale. The interpretation of correlations between these variables can be seen as unequivocal, since the number of children experiencing chronic complications was very low (n=2). The level of burden and factors associated families Analysis of variables (Table 2) showed negative correlations (Spearman's coefficient) between the mother's level of education and the level of burden for the caregiver in the "Disappointment" subscale (p=0.040). Better educated mothers declared lower levels of burden. In the "Emotional involvement" subscale, the level of burden for the caregiver correlated with the father's level of education (p=0.022).
ACCEPTED MANUSCRIPT Statistical analysis of data did not show correlations between the place of residence of the family, their financial situation, and number of children in the household and the level of burden (p>0.05). The variables, "father's age" and "mother's age", are not correlated with the level of burden declared in
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subscales of the CB Scale.
The main factor associated with the parents influencing the level of burden for caregivers was the
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professional status of the parents, as determined in the Mann-Whitney U-test (Table 3). Statistically significant differences between comparable groups declaring certain professional statuses were found
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in the "General strain" subscale. Stay-at-home mothers achieved higher scores in the "General strain" (Z=-2.2; p=0.025), "Isolation" (Z=-3.1; p=0.001), and "Disappointment" (Z=-3.4; p=0.000) subscales. The father's professional status influences the perception of burden among caregivers in the "General strain" (Z=-2.5; p=0.011) and "Disappointment" (Z=-2.1; p=0.031) subscales. In households with
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unemployed fathers, the caregivers declared higher levels of burden in the above-mentioned subscales. Statistical analysis of data did not show significant differences between the parents' health conditions,
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number of generations in the family, and the level of burden in separate subscales of the CB Scale.
burden.
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Discussion
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Other socio-demographic variables were not found to be significantly correlated with the level of
The purpose of the analysis of variables conducted in this study was to gain a better understanding of the correlations between the level of burden for direct caregivers to children with diabetes and factors associated with children, families, and caregivers. Studies on the issues of burden associated with providing care to children with diabetes and factors influencing the subjectively perceived levels of burden have not been conducted in Poland before. In the studied group of direct caregivers, no fathers were reported as direct caregivers, which confirms that the burden of providing care falls primary on the mothers, who, as shown in previous studies, assume greater responsibility for providing care than other members of families and experience higher levels of burden than fathers (Nitka-Siemińska et al., 2008; Rodrigues and Patterson, 2007).
ACCEPTED MANUSCRIPT According to studies conducted by other authors, the role of fathers is often marginal in solving practical problems arising from everyday treatment of children (Dashiff, Morrison and Rowe, 2008; Dashiff et al., 2011), despite the fact that research emphasizes how crucial the involvement of fathers
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in caregiving for children is in the context of improving the functioning of the family and providing a buffer for the perception of burden (Gavin and Wysocki, 2006; Swallow et al., 2011). Caregivers for young children fear that other people will not be able to provide appropriate care, which makes it
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difficult to share responsibilities between different persons and may lead to higher levels of burden.
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This study has shown that the overall level of burden is higher among caregivers for younger children. Overburdening of parents of younger children may be more evident, as these parents must assume most of the responsibilities associated with the disease (Monaghan et al., 2009). Diabetes was found to increase the amount of time devoted to childcare considerably, and it also restricted the professional
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activity of parents with children attending school (Katz et al., 2012). Previous studies have also demonstrated the impact of age of the child with diabetes on the level of stress experienced by the
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parents. Parents of younger children experience more stress (Streisand et al., 2005), which may lead to higher overall levels of burden. According to the study conducted by Awadalla et al. (2006), there is a
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correlation between the age of the child, duration of the disease, health condition of the caregivers, and
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the level of education of the caregivers and the perceived quality of life of caregivers. Contrary to expectations, no significant correlation was found between the clinical factors associated with the child and the perceived level of burden. It is therefore possible to assume that the level of burden may be a consequence of not only the actual health condition of a child, but also of concerns about further progression of the disease. Analysis of the level of burden conducted by Haugstvedt using the family burden scale demonstrated that the highest levels of burden were associated with long-term health problems the child was suffering from (Haugstvedt et al., 2011). This could mean that, for example, stable glycemic levels do not relieve us from the responsibility to support these families. Better control may result from higher levels of stress experienced by the caregivers (NitkaSiemińska et al., 2008; Stallwood, 2005). The frequency of occurrence of hypoglycemic episodes did not show a significant correlation to the level of burden, which was not consistent with the results
ACCEPTED MANUSCRIPT obtained by Haugstvedt et al. (2011) who determined that episodes of hypoglycemia were significant factors influencing the level of burden. Our study did not confirm those findings, which could have resulted from the fact that the caregivers failed to indicate instances of problematic hypoglycemic
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episodes. Also, the frequency of hyperglycemic episodes did not affect the subjective sense of burden, even though the impact of negative BGM on diabetes-specific family conflict has been reported (Gray et al., 2013). The study involved too few children with diabetes complications, and this did not allow
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for an unambiguous determination of the correlation between this variable and the burden intensity.
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The results of studies conducted by Awadalla et al. (2006) demonstrate that in cases of children experiencing complications of diabetes, the caregivers feel their social activity is limited, increasing the level of tension in the household, which may negatively influence the quality of life of caregivers. The correlation between the caregiver's burden and the values of glycated hemoglobin, claimed by
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Cunningham et al. (2011), was not confirmed in our study.
The conducted analyses showed that the level of burden was the highest in the "General strain"
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subscale, including, among other things, experiencing physical and psychological exhaustion due to activities associated with providing care, occurrence of difficult problems, time required to provide
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care, and the feeling of responsibility resulting from caregiving. The analysis of level of burden
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conducted by Haugstvedt et al. (2011) using the family burden scale showed that a high level of burden was correlated (in descending order) with physical and psychological problems, disturbances in family life, and social limitations experienced by the child. The level of burden in the "General strain" scale was higher in families where mothers and fathers were unemployed and among parents whose income from paid employment was reduced due to health problems of the child. Results obtained in the study by Lindley and Mark (2010) showed correlations between the end of employment of the caregiver, a lower income of the family, and the notion of financial burden. However, the study did not confirm the correlation between the health condition of the child and financial burden. Financial burden may lead to long-term effects on the family’s quality of life (Miedema et al., 2008). The results of studies confirm the importance of socio-economic factors in experienced levels of stress among caregivers of children with diabetes (Streisand et al., 2005), which
ACCEPTED MANUSCRIPT may intensify the notion of burden. The results published by Yotani et al. (2014) confirm that the family situation may play a greater role in the sense of burden than the type of care required in a group
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of younger children.
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Contrary to expectations, a high level of burden in the "Emotional involvement" subscale was only observed for a small percentage of participants, and the mean level was observed for approximately ¼.
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Questions included in the subscale make it possible to collect data on feelings of confusion resulting from the child's behavior experienced by caregivers, as well as feelings of anger and resentment
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towards the child. Taking into account the results of previous studies, it is possible to hypothesize that assuming the role of a caregiver does not only cause burden, but also has positive effects, which may, to some extent, balance out the perceived burden: parents and children have a closer relationship and spend more time together, the children are more mature and responsible, and the family leads a
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healthier lifestyle (Mellin et al., 2004). In the studied group, the level of burden in the "Emotional involvement" subscale points to the importance of number of nighttime glycemic tests, number of
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hospitalizations, and method of insulin administration. The studied caregivers declared a high frequency of conducting of glycemic tests. The total number of tests was not significantly correlated
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with an increased level of burden; however, the nighttime tests were significantly correlated. The
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results of our study, as well as the results obtained by Haugstvedt et al. (2011), indicate the great importance of nighttime care. Research has shown that 55% of caregivers regularly measure glycemic levels and 1/3 conduct each test twice. Analyses conducted by other authors show that nighttime glycemic tests are associated with a higher level of experienced fear and stress (Haugstvedt et al., 2011, Monaghan et al., 2009), which may lead to higher levels of perceived burden. The caregivers participating in our study did not indicate the reasons for nighttime glycemic tests and we do not know if they may result from difficulties with coping with caregiving. The possible causes for nighttime test include symptoms of hypoglycemia, maintaining balance between hypo- and hyperglycemia, and the desire to strictly control glycemic levels. It has been shown that greater psychological control and better metabolic control are associated with higher level of burden (Jubber et al., 2013). As the number of nighttime glycemic tests and the number of hospitalizations increase, the observed level of burden
ACCEPTED MANUSCRIPT for caregivers was also higher. Previous studies show that parents of children treated using insulin pumps experience less stress (Müller-Godeffroy et al., 2009; Streisand et al., 2005), and less problems with children during meals and that their concerns about hypoglycemia decrease (Müller-Godeffroy et
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al., 2009), which may protect them from experiencing feelings of anger and resentment. Our study demonstrated a significant difference in the level of burden in the "Emotional involvement" subscale depending on the method of insulin administration. The study conducted by Horsch et al. (2007)
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shows that one of the more stressful factors associated with a child's diabetes reported by mothers is
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the need to inject the child with drugs.
The only significant factor associated with families influencing the level of burden for caregivers in the "Emotional involvement" subscale was the father's level of education. The higher the level of education, the lower the level of burden to the caregivers. Paid employment and higher levels of
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education of the caregiver and spouse are significant factors protecting caregivers from experiencing burden in the "Disappointment" subscale. This correlation may confirm the validity of the hypothesis
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that employment serves as a buffer which provides opportunities for self-fulfillment, maintaining social relationships, and increasing the perception of happiness. Education is also an important
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resource for the family, which has a significant effect on the perception of stress factors, the ability to
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solve problems, and psychological resilience. Almost 1/3 of the participants declared medium levels of burden in the "Isolation" subscale. Providing care to a child with diabetes limits the scope of social activities of the caregiver, often makes it impossible to fulfill plans, and leads to avoiding friends due to problems experienced with the child. Caregivers limit their social relationships, as they wish to avoid confrontation due to the quantity and quality of food available in many situations, and are unable to leave the child with grandparents, who fear the responsibility, for long periods of time (Tsamparli and Kounenou, 2004). Also, in the "Environment" subscale, only a small percentage of caregivers declared a high level of burden. Medium levels of burden were observed in almost 40% of the participants. This could indicate that the difficulties experienced by the parents outside of home are minor, which does not confirm the
ACCEPTED MANUSCRIPT importance of factors mentioned in previous studies, such as: lack of support from teachers, lack of or inappropriate training in care of school nurses, and the need for accompanying children at school and on school trips. Fear experienced by grandparents and their lack of involvement in care (Tsamparli and
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Kounenou, 2004) are problematic, as well as difficulties with finding a babysitter for the child (Coffrey, 2006). Training in providing care for children with diabetes for teachers is mentioned multiple times in previous studies, which may directly improve the way the caregivers function, and,
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simultaneously, may decrease the perception of burden (Urbańska-Kosińska and Marcinkowski,
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2006). Parents tend to believe that teachers should be trained and have certain expectations of them: they should be able to provide help in cases of hypoglycemic and hyperglycemic episodes and with glycemic testing, maintain dietary restrictions, administer insulin at suitable times, understand the child's problems, and have knowledge of issues associated with diabetes (Urbańska-Kosińska et al., 2009). Parents are concerned with low and high glycemic levels and do not trust the schools'
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capabilities in providing appropriate care (Jacquez et al., 2008; Hayes-Bohn et al., 2004). Many
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caregivers are worried when their child is alone outside of home or among people who do not have appropriate knowledge about diabetes (Mellin et al., 2004; Dashiff et al., 2011). Currently, in Poland,
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there are no systemic programs aimed at providing care to children with diabetes at schools and nurseries or at increasing the teachers' involvements in treatment and providing help (Urbańska-
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Kosińska et al., 2009). The higher level of burden observed for this subscale was associated with the higher frequency of hyperglycemic episodes among children. This may be due to a constant feeling of burden and responsibility resulting from the disease (Gawłowicz et al., 2009).
Conclusions and practical implications When planning clinical and outpatient diabetes care for a small child, diabetic nurse educators should involve more than one caregiver in diabetes education to a greater extent than previously. These include both parents and people looking after the child until now, e.g. babysitters, grandparents, and tutors from educational institutions to which the child attends. This may facilitate sharing responsibilities arising from the disease in the household and may facilitate providing care for caregivers when the child is not at home. When only one person is
ACCEPTED MANUSCRIPT fully responsible for treatment and care, the situation may lead to overburdening and, as a consequence, to difficulties in providing care. The tasks of the therapeutic team in the clinic
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include the organization of education concerning care of a child with diabetes in educational
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institutions and cooperation with teaching staff. Social and economic status is an important factor contributing to the level of burden experienced by caregivers; therefore, it should not be
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overlooked in nursing diagnosis allowing for setting goals of therapeutic education concerning psychosocial aspects. Nurses should recognize the important role of cooperation
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with the social worker, as well as possess and provide to caregivers updated information on existing forms of support for families of children with chronic diseases, especially those who are in a difficult financial situation.
During follow-up visits at the diabetes clinic current evaluation of the caregivers’ skills of
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dealing in the states of hypo- and hyperglycemia should be made. Re-education should
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include development of skills with regard to the optimization of the number of nighttime glycemic tests and knowledge of procedures in cases of hyperglycemic episodes.
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Acknowledgements
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The authors would like to thank the caregivers who agreed to participate in the study. The authors would also like to thank Proper Medical Writing for language support. The study was financed from the budget allocated to general scientific activities between 2010 and 2012 as part of research project No. 1940/B/P01/2010/39.
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family outcomes in families with children with chronic illness. J Pediatr Psychol 2006;31:481-9. Gawłowicz K, Krzyżaniak A. The influence of the type 1 diabetes in a child on the family functioning [in Polish]. Probl Hig Epidemiol 2009;90:72-7. Gawłowicz K, Miechowicz I, Krzyżaniak A. The role of parents taking of a child with chronic disease [in Polish]. Ginek Prakt 2009;17:45-9. Gray WN, Dolan LM, Hood KK. Impact of blood glucose monitoring affect on family conflict and glycemic control in adolescents with type 1 diabetes. Diabetes Res Clin Pract 2013;99:130-5. Haugstvedt A, Wentzel-Larsen T, Rokne B, Graue M. Perceived family burden and emotional distress: Similarities and differences between mothers and fathers of children with type 1 diabetes in a population-based study. Pediatr Diabetes 2011;12:107-14.
ACCEPTED MANUSCRIPT Hayes-Bohn R, Neumark-Sztainer D, Mellin A, Patterson J. Adolescent and parent assessments of diabetes mellitus management at school. J Sch Health 2004;74:166-9.
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Horsch A, McManus F, Kennedy P, Edge J. Anxiety, depressive, and post-traumatic stress symptoms
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in mothers of children with type 1 diabetes. J Trauma Stress 2007;20:881-91.
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diabetes management in schools. Diabetes Educ 2008;34:996-1003.
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Jarosz-Chobot P, Polanska J, Szadkowska A, Kretowski A, Bandurska-Stankiewicz E, Ciechanowska M, Deja G, Mysliwiec M, Peczynska J, Rutkowska J, Sobel-Maruniak S, Fichna P, Chobot A, Rewers M. Rapid increase in the incidence of type 1 diabetes in Polish children from 1989 to 2004, and predictions for 2010 to 2025. Diabetologia 2011;54:508-15.
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Jubber AP, Olsen Roper S, Yorgason JB, Poulsen FO, Mandleco BL. Individual and family predictors of psychological control in parents raising children with type 1 diabetes. Fam Syst Health
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2013;31:142-55.
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Katz ML, Laffel LM, Perrin JM, Kuhlthau K. Impact of type 1 diabetes on the family is reduced by
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the medical home, care coordination and family centered care. J Pediatr 2012;160:861-7. Lindley LC, Mark BA. Children with special health care needs: impact of health care expenditures on family financial burden. J Child Fam Stud 2010;19:79-89. Lindström C, Aman J, Norberg AL. Parental burnout in relation to sociodemographic, psychosocial and personality factors as well as disease duration and glycaemic control in children with type 1 diabetes mellitus. Acta Paediatr 2011;100:1011-7. Malerbi FE, Negrato CA, Gomes MB; Brazilian Type 1 Diabetes Study Group (BrazDiab1SG). Assessment of psychosocial variables by parents of youth with type 1 diabetes mellitus. Diabetol Metab Syndr 2012;4:48.
ACCEPTED MANUSCRIPT McClellan CB, Cohen LL. Family functioning in children with chronic illness compared with healthy controls: a critical review. J Pediatr 2007;150:221-3.
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Mellin AE, Neumark-Sztainer D, Patterson JM. Parenting adolescent girls with type 1 diabetes:
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parents' perspectives. J Pediatr Psychol 2004;29:221-30.
Miedema B, Easley J, Fortin P, Hamilton R, Mathews M. The economic impact on families when a
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child is diagnosed with cancer. Curr Oncol 2008;15:173-8.
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Monaghan MC, Hilliard ME, Cogen FR, Streisand R. Nighttime caregiving behaviours among parents of young children with Type 1 diabetes: associations with illness characteristics and parent functioning. Fam Syst Health 2009;27:28-38.
Müller-Godeffroy E, Treichel S, Wagner VM; German Working Group for Paediatric Pump Therapy.
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Education and psychological aspects investigation of quality of life and family burden issues during insulin pump therapy in children with Type 1 diabetes mellitus – a large-scale multicentre pilot
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study. Diabet Med 2009;26:493-501.
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Nitka-Siemińska A, Myśliwiec M, Landowski J, Balcerska A, Wolnik B. Burnout syndrome in parents of children with type 1 diabetes mellitus [in Polish]. Diabet Prakt 2008;9:76-81.
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Patterson CC, Dahlԛuist GG, Gyürüs E, Green A, Soltèsz G and the EURODIAB Study Group. Incidence trends for childhood type 1 diabetes in Europe during 1989-2003 and predicted new cases 2005-20: a multicentre prospective registration study. Lancet 2009;373:2027-33. Recommendations of the Polish Diabetes Association [in Polish]. Diabetologia Kliniczna 2014;tom 2 (suppl.A):1-72. Rodrigues N, Patterson JM. Impact of severity of a child`s chronic condition on the functioning of two-parent families. J Pediatr Psychol 2007;34:417-26. Stallwood L. Influence of caregiver stress and coping on glycaemic control of young children with diabetes. J Pediatr Health Care 2005;19:293-300.
ACCEPTED MANUSCRIPT Streisand R, Swift E, Wickmark T, Chen R, Holmes SC. Pediatric parenting stress of parents with type 1 diabetes: the role of self-efficacy, responsibility and fear. J Pediatr Psychol 2005;30:513-21.
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Swallow V, Macfadyen A, Santacroce SJ, Lambert H. Fathers’ contributions to the management of
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their child’s long‐term medical condition: a narrative review of the literature. Health Expect 2011;15:157-75.
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Tsamparli A, Kounenou K. The Greek family system when a child has diabetes mellitus type 1. Acta
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Paediatr 2004;93:1646-53.
Urbańska-Kosińska M, Czapracka A, Marcinkowski JT. The teachers’ care of children ill with IDDM at a school and a kindergarten in the context of legally binding acts – a doctor’s and lawyer’s point of view [in Polish]. Diabet Dośw Klin 2009;9:1-7.
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Urbańska-Kosińska M, Marcinkowski J. Education of teachers who teach children suffering from insulin dependent diabetes mellitus (IDDM) as a prophylactics of complications [in Polish]. Probl
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Hig Epidemiol 2006;87(suppl):160-5.
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Yotani N, Ishiguro A, Sakai H, Ohfuji S, Fukushima W, Hirota Y. Factor-associated caregiver burden
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in medically complex patients with special health care needs. Pediatr Int 2014 [Epub ahead of print].
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Figure 1. Selection of clinics (A) and caregivers (B) to study
ACCEPTED MANUSCRIPT Table 1. Demographic data of the study group Analyzed characteristic
Characteristic type
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Data on the parents of an ill child mother father Number Percentage Mean Number Percentage Mean n % n % Up to 35 years 39 34.8% 15.2% 15.2% 39.6 43.2 (SD=6.8) (SD=7.6) 26.8% 26.8% 36-40 years 29 25.9% Age 41-45 years 22 19.6% 23.2% 23.2% 34.8% 34.8% over 45 years 22 19.6% primary and lower 4 3.6% 4.5% 4.5% basic/gymnasium 27 24.1% 40.2% 40.2% Education general secondary and 51 45.5% 38.4% 38.4% technical higher 30 26.8% 17.0% 17.0% working 59 52.7% 92.0% 92.0% Professional activity not working 53 47.3% 8.0% 8.0% healthy 101 90.2% 85.7% 85.7% Health status unhealthy 11 9.8% 14.3% 14.3% Data on the family of an ill child Number Percentage n % country 46 41.1% Place city < 50 thousand 32 of residence of the 28.6% family city > 50 thousand 34 30.4% very good 8 7.1% Material good 67 59.8% conditions of the standard 34 30.4% family bad 3 2.7% 1 24 21.4% Number of 2 58 51.8% children in the 3 19 17.0% family 4-5 11 9.8% two generational family 89 79.5% Number of generations in the multigenerational family 23 20.5% family Demographic characteristics of ill children Number Percentage n % pre-school (3-6 years) 18 16.1% primary school (7-10 30 26.8% years) Age middle school (11-13 25 22.3% years) high school (14-16 years) 39 34.8% male 53 47.3% Sex female 59 52.7%
ACCEPTED MANUSCRIPT Table 2. Factors associated with children/families and the level of burden for caregivers.
General strain
Isolation Disappointment
R
-0.129
-0.231
-0.194
p
0.173
0.013*
0.039*
Duration of the disease
R
-0.034
-0.149
p
0.715
Number of glycemic tests daytime Number of glycemic tests nighttime
R
-0.001
-0.264
-0.187
0.989
0.004*
0.047*
-0.035
-0.132
-0.068
-0.083
0.115
0.709
0.165
0.470
0.380
0.028
0.049
0.060
-0.047
0.035
0.035
p
0.762
0.604
0.526
0.619
0.707
0.710
R
-0.089
-0.021
-0.120
0.205
-0.045
-0.061
p
0.347
R
0.101
p
0.286
R
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0.204
0.029*
0.633
0.518
0.120
0.036
0.212
-0.019
0.103
0.206
0.699
0.024*
0.838
0.275
-0.043
-0.113
-0.121
0.118
-0.175
-0.094
p
0.656
0.238
0.209
0.220
0.068
0.328
R
0.083
0.011
0.027
0.069
0.187
0.081
0.382
0.907
0.776
0.469
0.048*
0.395
-0.160
-0.056
-0.125
0.028
-0.112
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Factors associated Number of with hospitalizations children Metabolic control of diabetes Frequency of hyperglycemic episodes Frequency of hypoglycemic episodes
Total score
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Age of the child
Emotional Environment involvement
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CB Scale
-0.069
p
0.090
0.465
0.555
0.187
0.765
0.238
R p R p R
0.080 0.400 -0.115 0.223 -0.038
-0.045 0.635 -0.131 0.168 0.050
0.009 0.924 -0.130 0.170 -0.079
-0.034 0.720 -0.015 0.867 0.072
-0.038 0.687 0.043 0.648 -0.028
0.032 0.737 -0.127 0.180 -0.019
p
0.684
0.594
0.402
0.450
0.766
0.841
R 0.087 0.065 -0.028 0.116 -0.075 p 0.358 0.494 0.764 0.219 0.426 R -0.106 0.029 -0.193 -0.164 0.123 p 0.265 0.755 0.040* 0.082 0.193 R 0.155 0.135 0.046 0.160 -0.068 Father's age p 0.101 0.154 0.623 0.091 0.469 R -0.086 0.043 -0.089 -0.215 0.086 Father's education p 0.366 0.650 0.348 0.022* 0.363 p - level of significance Spearman p; R - strength of correlation between variables; *p
S0897-1897(14)00144-X doi: 10.1016/j.apnr.2014.09.008 YAPNR 50595
To appear in:
Applied Nursing Research
Received date: Revised date: Accepted date:
12 May 2014 11 September 2014 19 September 2014
Please cite this article as: Kobos, E. & Imiela, J., Factors affecting the level of burden of caregivers of children with type 1 diabetes, Applied Nursing Research (2014), doi: 10.1016/j.apnr.2014.09.008
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ACCEPTED MANUSCRIPT Factors affecting the level of burden of caregivers of children with
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type 1 diabetes
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Ewa Kobos,1 Jacek Imiela1
Social Nursing Institute, Health Education Faculty, Warsaw Medical University, ul. Ciołka
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27, 01-445 Warszawa, Poland
Corresponding author: Ewa Kobos
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phone/fax +48 22 877 35 97
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ul. Ciołka 27, 01-445 Warszawa, Poland
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e-mail: [email protected]
ACCEPTED MANUSCRIPT Abstract Aim: To analyze the correlations between factors associated with the family and child and the level of
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burden involved in care.
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Background: The management of diabetes places substantial demands on families and direct
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caregivers.
Methods: 112 direct caregivers of children with type 1 diabetes from 4 clinics in Poland evaluated
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their level of burden using the Caregiver's Burden Scale. The additional data were collected through interviews.
Results: The highest level of burden was associated with general strain and disappointment. The level of burden correlated with the child’s age and the professional status and level of education of the
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parents, and also with the number of glycemic tests at nighttime, the frequency of hyperglycemic
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episodes, and the number of hospitalizations.
Conclusions: Measuring the impact of factors influencing the level of burden in care makes it possible
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to develop effective programs supporting parents in providing care for children with type 1 diabetes.
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Key words: type 1 diabetes, caregiver burden, children.
Poland, despite the average incidence rate among European countries, is characterized by a high rate of growth in the incidence of type 1 diabetes in children (Jarosz-Chobot et al., 2011). It is estimated that this level exceeds 9% per year (Patterson et al., 2009). Cases of new onset as well as difficult-totreat acute complications of diabetes require hospitalization in a specialized unit of pediatric diabetology, and subsequently the child remains under the care of the diabetes clinic. The frequency of visits to the clinic is not limited, they are recommended every 6-8 weeks, at least four times a year (Recommendations of the Polish Diabetes Association, 2014).
ACCEPTED MANUSCRIPT Previous studies emphasize that the perception of burden is a complex issue. It may be defined, among other things, as the strain experienced by people responsible for supporting patients suffering from medical or psychological conditions (Encyclopaedia of Public Health, 2008). Type 1 diabetes in
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children involves sudden and acute complications that lead to development of practical and emotional problems for patients and their families. Parents may experience 3 types of stress factors associated with the disease: low-level stress in the form of everyday difficulties; medium-level stress, where
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diabetes is an element permanently present in the family profile and must be considered in most life
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situations; and traumatizing stress, which appears, among other times, during situations that endanger the life of the child (acute complications of diabetes) or at the time of diagnosis of acute complications (Cyranka, 2012). Many parents have concerns associated with chronic complications, low glycemic levels, and their child's stays away from home (Mellin et al., 2004). It has been demonstrated that the perception of burden resulting from caregiving to patients with diabetes is significantly correlated with
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the level of anxiety/depression in parents of children with diabetes (Malerbi et al., 2012). The
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correlation between expenses of medical care and the level of financial burden for the family in relation to the child's condition, place of residence, and insurance status was researched by Lindley
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and Mark (2010). Parents of children with diabetes may experience feelings of guilt about not providing appropriate care, which may lead to conflicts occurring more frequently in these families
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than in those with healthy children (Coffey, 2006). Treatment for patients with diabetes requires everyday self-testing of glycemic indices, nutrition, physical activity, and administration of insulin (Fichna et al., 2005). Parents may experience the feeling of constant burden with responsibility for providing care (Mellin et al., 2004). Treatment provided at home may also lead to misunderstandings between children and parents, which may prove very time-consuming. The results of studies indicate the following difficulties associated with providing care for children with diabetes: adhering to dietary restrictions, children becoming more independent, the need for conducting procedures, and learning difficulties (Gawłowicz and Krzyżaniak, 2009). Research shows that families of chronically ill children may experience problems in adjusting to the disease, possibly straining relations with the child and leading to increased conflicts
ACCEPTED MANUSCRIPT in the family, and difficulty in solving problems (McClellan and Cohen, 2007). Long-term provision of care may intensify burnout syndrome in parents (Nitka-Siemińska et al., 2008). Low levels of social activity, financial difficulties, and the notion that the child's disease has an impact on everyday life are
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associated with burnout syndrome (Lindström et al., 2011).
The purpose of this study was to evaluate the perceived level of burden among caregivers of children
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with diabetes via analysis of correlations between factors associated with parents and children and the level of burden of care. This study plays an important role in planning holistic care for families of
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children with diabetes, both in a hospital environment and in a family’s residence. Methods Procedure
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The study was conducted in 2010 at four randomly selected diabetes clinics in Poland (Figure 1). Interviews were conducted in the polyclinics during follow-up visits of caregivers and children. The
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caregivers completed the Caregiver's Burden Scale (CB Scale) forms at home and sent them back via
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post. Fifty caregivers were selected at each clinic. The groups of patients consisted of children with clinically diagnosed type 1 diabetes, diagnosed at least 6 months before the beginning of the study,
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aged 3-16 years, from complete families (not reconstructed), with siblings, without any chronic illnesses. The study involved a total of 200 caregivers who met the following criteria: declared themselves a direct caregiver for the child, lived with the child, devoted the largest amount of time and attention to the child in comparison to other family members, and submitted written consent to participate in the study. The return rate of CB Scale forms reached 56% (n=112) (Figure 1). Measurement Interview. A survey was used to collect data for analysis of the child’s and parent’s suffering from the disease. The survey consisted of 11 questions regarding the sick child, covering: age, type of education and special purpose center which the child attends, duration of the disease, methods of insulin therapy, frequency of glycemic indices blood tests, metabolic control of diabetes, number of hospitalizations,
ACCEPTED MANUSCRIPT type of monitoring of blood glucose levels, and the occurrence of acute and chronic complications of diabetes. The survey included five questions regarding the family and caregivers of the child, covering: place of residence, financial situation, family structure, number of generations of the family,
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and age, education, health condition, and professional situation of the parents.
Caregiver’s Burden Scale. With the author's written consent, the Caregiver's Burden Scale (CB
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Scale) was used to evaluate level of burden. The scale is used to measure the subjective perception of the level of burden. The scale consists of 22 questions and 5 subscales: general strain, social isolation,
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environment, emotional involvement, and disappointment. Each question was rated on a scale of 1 to 4 (not at all, seldom, sometimes, or often). The total score was calculated as a mean score of items constituting scales 1-4 and the 5 subscales. The higher the total score for a caregiver, the higher the level of burden. The following levels of burden have been assumed: low-level (1.00-1.99), medium-
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level (2.00-2.99), and high-level (3.00-4.00). A previous study on reliability showed high internal consistency for the five factors with Cronbach’s alpha values between 0.70 and 0.87, except for the
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environment factor. A reproducibility study showed kappa values between 0.89 and 1.00, except for
Data analysis
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the environment factor with a kappa value of 0.53 (Elmståhl et al., 1996).
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Statistica 9.0 PL software was used for conducting statistical analysis. Normal distribution of the analyzed variables (CB Scale) was tested using the Shapiro-Wilk test. For the purpose of statistical description, the author used percentages, arithmetic means, and standard deviations. The analysis of correlations and comparative analysis was conducted using non-parametric methods: Spearman’s correlation coefficient (correlations) and the Mann-Whitney U-test (significance of differences). The level of significance was set as p=0.05. Results
Study sample
ACCEPTED MANUSCRIPT The study involved 112 direct caregivers. All direct caregivers were married women. Of the total participants, 41.1% percent lived with their families in rural areas and 59% in urban
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areas. As judged by the caregivers, 59.8% of the families had a good financial situation,
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30.4% had an average financial situation, and only 2.7% described their financial situation as bad. There were two children in 51.8% of the families and one child in 21.4%. The majority
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of families (79.5%) had multigenerational households. The mean age of mothers equaled 39.6 years (SD=6.8) and the mean age of fathers was 43.2 years (SD=7.6). Thirty-four percent of
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mothers were aged less than 35 years, and 34.8% of fathers were aged above 45. Forty-two percent of caregivers had a secondary school education, 21.9% had some form of higher education, and vocational and middle school education accounted for 32.1%. An education level of no more than primary school was declared by 4.0%. Up to 47.3% of mothers were
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unemployed, whereas for fathers, the rate of unemployment equaled 8.0%. Chronic disease
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was reported in 9.8% of mothers and 14.3% of fathers (Table 1). The child patients were aged 3-16 years old. The mean age was 11.3 years (SD=3.6). The
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largest group of children consisted of children of primary school age (49.1%), then middle
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school age (34.8%), and then children of nursery age (16.1%). The group of patients consisted of 52.7% girls and 47.3% boys. Disease occurrence before the age of 3 was found in 46.4% of the children, occurrence between the ages of 3 and 6 in 32.2%, and occurrence after the age of 6 in 21.4%. The mean value of glycated hemoglobin among A1C children equaled 7.5% (SD=1.5%). For 46.4% of the children, metabolic control of diabetes was good (A1C up to 7%), it was average for 28.6% (A1C >7 ≤ 8), low for 15.2% (A1C >8 ≤10), and very low for 7.1% (A1C >10%). The majority of the children (75.0%) had insulin administered using an insulin pump, while 25% used an insulin pen. The parents declared a high frequency of glycemic tests in children during the daytime: 42.9% at 6-8 times, 20.5% at more than 8 times, and 36.3% at up to 5 times a day. Administration of one glycemic test at nighttime was
ACCEPTED MANUSCRIPT reported by 22.3% of the caregivers, 33.0% conducted two tests per night, and 5.4% conducted 4 or more. The children showed tendencies for increased glycemic levels in the last
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3 months. For 37.5% of the patients, glycemic levels exceeding 200mg/dL were observed
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more than a few times a week, and for 26.8%, they were observed daily. Glycemic levels below 60mg/dL were observed among 20.4% of the children a few times a week, almost
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every week for 17.9%, and for 7.1%, they were observed daily. More than one hospitalization (including yearly follow-up) from the time of onset of disease was reported in 21.4% of the
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children. The level of burden
In the studied group of caregivers, the total level of burden equaled 2.1 points.
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For separate subscales of the CB Scale, the levels of burden ranged from 1.6-2.41 points. The highest level of burden was observed in the "General strain" subscale and equaled 2.41 points. For
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this subscale, 23.2% of caregivers declared a high level of burden, 49.1% declared an average level of
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burden, and 27.7% declared a low level. Lower levels of burden were observed in the "Disappointment" subscale at 2.31 points. The rates of average and high levels of burden in the
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"Disappointment" subscale were comparable to the levels of burden in the "General strain" subscale and equaled 46.4% and 23.2%, respectively. A high level of burden was observed among 11.6% of participants in the "Isolation" subscale. An average total level of burden was declared by 51.8% of caregivers and a high level was declared by 7.1%.
The level of burden and factors associated with children Statistically significant negative correlations between the age of the sick child and the total score for level of burden (p=0.047) were determined using Spearman’s correlation coefficient (Table 2). A higher level of burden among caregivers of younger children with diabetes was observed in the following subscales of the CB Scale: Isolation (p=0.013), Disappointment (p=0.039), and Environment (p=0.004). No correlation was found between the age of the
ACCEPTED MANUSCRIPT child and the level of burden in the "General strain" subscale (p=0.173) or the "Emotional involvement" subscale (p=0.989). A positive correlation was found between the number of
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glycemic tests at nighttime and the level of burden in the "Emotional involvement" subscale
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(p=0.029). There is also a correlation between the number of hospitalizations of a child and the level of burden for a caregiver in the "Emotional involvement" subscale (p=0.024). It was
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determined that a higher frequency of hyperglycemic episodes leads to the perception of higher level of burden in the "Environment" subscale (p=0.048). No correlation was found
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between the level of burden for separate subscales and the duration of the disease, metabolic control of diabetes, number of glycemic tests during daytime, and the frequency of hypoglycemic episodes.
Statistically significant differences between the method of administration of insulin and the
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perceived level of burden for the caregiver in the "Emotional involvement" subscale (Z=-2.2;
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p=0.029) were found using the Mann-Whitney U-test (Table 3). Caregivers of children administering insulin using pens declared the highest level of burden in the "Emotional
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involvement" subscale. No statistically significant differences were found between the gender
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of the child and the level of burden in separate subscales of the CB Scale (p=0.622). Occurrence of complications did not influence the level of burden for caregivers in separate subscales of the CB Scale. The interpretation of correlations between these variables can be seen as unequivocal, since the number of children experiencing chronic complications was very low (n=2). The level of burden and factors associated families Analysis of variables (Table 2) showed negative correlations (Spearman's coefficient) between the mother's level of education and the level of burden for the caregiver in the "Disappointment" subscale (p=0.040). Better educated mothers declared lower levels of burden. In the "Emotional involvement" subscale, the level of burden for the caregiver correlated with the father's level of education (p=0.022).
ACCEPTED MANUSCRIPT Statistical analysis of data did not show correlations between the place of residence of the family, their financial situation, and number of children in the household and the level of burden (p>0.05). The variables, "father's age" and "mother's age", are not correlated with the level of burden declared in
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subscales of the CB Scale.
The main factor associated with the parents influencing the level of burden for caregivers was the
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professional status of the parents, as determined in the Mann-Whitney U-test (Table 3). Statistically significant differences between comparable groups declaring certain professional statuses were found
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in the "General strain" subscale. Stay-at-home mothers achieved higher scores in the "General strain" (Z=-2.2; p=0.025), "Isolation" (Z=-3.1; p=0.001), and "Disappointment" (Z=-3.4; p=0.000) subscales. The father's professional status influences the perception of burden among caregivers in the "General strain" (Z=-2.5; p=0.011) and "Disappointment" (Z=-2.1; p=0.031) subscales. In households with
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unemployed fathers, the caregivers declared higher levels of burden in the above-mentioned subscales. Statistical analysis of data did not show significant differences between the parents' health conditions,
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number of generations in the family, and the level of burden in separate subscales of the CB Scale.
burden.
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Discussion
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Other socio-demographic variables were not found to be significantly correlated with the level of
The purpose of the analysis of variables conducted in this study was to gain a better understanding of the correlations between the level of burden for direct caregivers to children with diabetes and factors associated with children, families, and caregivers. Studies on the issues of burden associated with providing care to children with diabetes and factors influencing the subjectively perceived levels of burden have not been conducted in Poland before. In the studied group of direct caregivers, no fathers were reported as direct caregivers, which confirms that the burden of providing care falls primary on the mothers, who, as shown in previous studies, assume greater responsibility for providing care than other members of families and experience higher levels of burden than fathers (Nitka-Siemińska et al., 2008; Rodrigues and Patterson, 2007).
ACCEPTED MANUSCRIPT According to studies conducted by other authors, the role of fathers is often marginal in solving practical problems arising from everyday treatment of children (Dashiff, Morrison and Rowe, 2008; Dashiff et al., 2011), despite the fact that research emphasizes how crucial the involvement of fathers
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in caregiving for children is in the context of improving the functioning of the family and providing a buffer for the perception of burden (Gavin and Wysocki, 2006; Swallow et al., 2011). Caregivers for young children fear that other people will not be able to provide appropriate care, which makes it
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difficult to share responsibilities between different persons and may lead to higher levels of burden.
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This study has shown that the overall level of burden is higher among caregivers for younger children. Overburdening of parents of younger children may be more evident, as these parents must assume most of the responsibilities associated with the disease (Monaghan et al., 2009). Diabetes was found to increase the amount of time devoted to childcare considerably, and it also restricted the professional
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activity of parents with children attending school (Katz et al., 2012). Previous studies have also demonstrated the impact of age of the child with diabetes on the level of stress experienced by the
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parents. Parents of younger children experience more stress (Streisand et al., 2005), which may lead to higher overall levels of burden. According to the study conducted by Awadalla et al. (2006), there is a
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correlation between the age of the child, duration of the disease, health condition of the caregivers, and
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the level of education of the caregivers and the perceived quality of life of caregivers. Contrary to expectations, no significant correlation was found between the clinical factors associated with the child and the perceived level of burden. It is therefore possible to assume that the level of burden may be a consequence of not only the actual health condition of a child, but also of concerns about further progression of the disease. Analysis of the level of burden conducted by Haugstvedt using the family burden scale demonstrated that the highest levels of burden were associated with long-term health problems the child was suffering from (Haugstvedt et al., 2011). This could mean that, for example, stable glycemic levels do not relieve us from the responsibility to support these families. Better control may result from higher levels of stress experienced by the caregivers (NitkaSiemińska et al., 2008; Stallwood, 2005). The frequency of occurrence of hypoglycemic episodes did not show a significant correlation to the level of burden, which was not consistent with the results
ACCEPTED MANUSCRIPT obtained by Haugstvedt et al. (2011) who determined that episodes of hypoglycemia were significant factors influencing the level of burden. Our study did not confirm those findings, which could have resulted from the fact that the caregivers failed to indicate instances of problematic hypoglycemic
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episodes. Also, the frequency of hyperglycemic episodes did not affect the subjective sense of burden, even though the impact of negative BGM on diabetes-specific family conflict has been reported (Gray et al., 2013). The study involved too few children with diabetes complications, and this did not allow
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for an unambiguous determination of the correlation between this variable and the burden intensity.
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The results of studies conducted by Awadalla et al. (2006) demonstrate that in cases of children experiencing complications of diabetes, the caregivers feel their social activity is limited, increasing the level of tension in the household, which may negatively influence the quality of life of caregivers. The correlation between the caregiver's burden and the values of glycated hemoglobin, claimed by
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Cunningham et al. (2011), was not confirmed in our study.
The conducted analyses showed that the level of burden was the highest in the "General strain"
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subscale, including, among other things, experiencing physical and psychological exhaustion due to activities associated with providing care, occurrence of difficult problems, time required to provide
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care, and the feeling of responsibility resulting from caregiving. The analysis of level of burden
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conducted by Haugstvedt et al. (2011) using the family burden scale showed that a high level of burden was correlated (in descending order) with physical and psychological problems, disturbances in family life, and social limitations experienced by the child. The level of burden in the "General strain" scale was higher in families where mothers and fathers were unemployed and among parents whose income from paid employment was reduced due to health problems of the child. Results obtained in the study by Lindley and Mark (2010) showed correlations between the end of employment of the caregiver, a lower income of the family, and the notion of financial burden. However, the study did not confirm the correlation between the health condition of the child and financial burden. Financial burden may lead to long-term effects on the family’s quality of life (Miedema et al., 2008). The results of studies confirm the importance of socio-economic factors in experienced levels of stress among caregivers of children with diabetes (Streisand et al., 2005), which
ACCEPTED MANUSCRIPT may intensify the notion of burden. The results published by Yotani et al. (2014) confirm that the family situation may play a greater role in the sense of burden than the type of care required in a group
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of younger children.
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Contrary to expectations, a high level of burden in the "Emotional involvement" subscale was only observed for a small percentage of participants, and the mean level was observed for approximately ¼.
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Questions included in the subscale make it possible to collect data on feelings of confusion resulting from the child's behavior experienced by caregivers, as well as feelings of anger and resentment
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towards the child. Taking into account the results of previous studies, it is possible to hypothesize that assuming the role of a caregiver does not only cause burden, but also has positive effects, which may, to some extent, balance out the perceived burden: parents and children have a closer relationship and spend more time together, the children are more mature and responsible, and the family leads a
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healthier lifestyle (Mellin et al., 2004). In the studied group, the level of burden in the "Emotional involvement" subscale points to the importance of number of nighttime glycemic tests, number of
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hospitalizations, and method of insulin administration. The studied caregivers declared a high frequency of conducting of glycemic tests. The total number of tests was not significantly correlated
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with an increased level of burden; however, the nighttime tests were significantly correlated. The
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results of our study, as well as the results obtained by Haugstvedt et al. (2011), indicate the great importance of nighttime care. Research has shown that 55% of caregivers regularly measure glycemic levels and 1/3 conduct each test twice. Analyses conducted by other authors show that nighttime glycemic tests are associated with a higher level of experienced fear and stress (Haugstvedt et al., 2011, Monaghan et al., 2009), which may lead to higher levels of perceived burden. The caregivers participating in our study did not indicate the reasons for nighttime glycemic tests and we do not know if they may result from difficulties with coping with caregiving. The possible causes for nighttime test include symptoms of hypoglycemia, maintaining balance between hypo- and hyperglycemia, and the desire to strictly control glycemic levels. It has been shown that greater psychological control and better metabolic control are associated with higher level of burden (Jubber et al., 2013). As the number of nighttime glycemic tests and the number of hospitalizations increase, the observed level of burden
ACCEPTED MANUSCRIPT for caregivers was also higher. Previous studies show that parents of children treated using insulin pumps experience less stress (Müller-Godeffroy et al., 2009; Streisand et al., 2005), and less problems with children during meals and that their concerns about hypoglycemia decrease (Müller-Godeffroy et
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al., 2009), which may protect them from experiencing feelings of anger and resentment. Our study demonstrated a significant difference in the level of burden in the "Emotional involvement" subscale depending on the method of insulin administration. The study conducted by Horsch et al. (2007)
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shows that one of the more stressful factors associated with a child's diabetes reported by mothers is
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the need to inject the child with drugs.
The only significant factor associated with families influencing the level of burden for caregivers in the "Emotional involvement" subscale was the father's level of education. The higher the level of education, the lower the level of burden to the caregivers. Paid employment and higher levels of
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education of the caregiver and spouse are significant factors protecting caregivers from experiencing burden in the "Disappointment" subscale. This correlation may confirm the validity of the hypothesis
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that employment serves as a buffer which provides opportunities for self-fulfillment, maintaining social relationships, and increasing the perception of happiness. Education is also an important
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resource for the family, which has a significant effect on the perception of stress factors, the ability to
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solve problems, and psychological resilience. Almost 1/3 of the participants declared medium levels of burden in the "Isolation" subscale. Providing care to a child with diabetes limits the scope of social activities of the caregiver, often makes it impossible to fulfill plans, and leads to avoiding friends due to problems experienced with the child. Caregivers limit their social relationships, as they wish to avoid confrontation due to the quantity and quality of food available in many situations, and are unable to leave the child with grandparents, who fear the responsibility, for long periods of time (Tsamparli and Kounenou, 2004). Also, in the "Environment" subscale, only a small percentage of caregivers declared a high level of burden. Medium levels of burden were observed in almost 40% of the participants. This could indicate that the difficulties experienced by the parents outside of home are minor, which does not confirm the
ACCEPTED MANUSCRIPT importance of factors mentioned in previous studies, such as: lack of support from teachers, lack of or inappropriate training in care of school nurses, and the need for accompanying children at school and on school trips. Fear experienced by grandparents and their lack of involvement in care (Tsamparli and
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Kounenou, 2004) are problematic, as well as difficulties with finding a babysitter for the child (Coffrey, 2006). Training in providing care for children with diabetes for teachers is mentioned multiple times in previous studies, which may directly improve the way the caregivers function, and,
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simultaneously, may decrease the perception of burden (Urbańska-Kosińska and Marcinkowski,
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2006). Parents tend to believe that teachers should be trained and have certain expectations of them: they should be able to provide help in cases of hypoglycemic and hyperglycemic episodes and with glycemic testing, maintain dietary restrictions, administer insulin at suitable times, understand the child's problems, and have knowledge of issues associated with diabetes (Urbańska-Kosińska et al., 2009). Parents are concerned with low and high glycemic levels and do not trust the schools'
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capabilities in providing appropriate care (Jacquez et al., 2008; Hayes-Bohn et al., 2004). Many
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caregivers are worried when their child is alone outside of home or among people who do not have appropriate knowledge about diabetes (Mellin et al., 2004; Dashiff et al., 2011). Currently, in Poland,
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there are no systemic programs aimed at providing care to children with diabetes at schools and nurseries or at increasing the teachers' involvements in treatment and providing help (Urbańska-
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Kosińska et al., 2009). The higher level of burden observed for this subscale was associated with the higher frequency of hyperglycemic episodes among children. This may be due to a constant feeling of burden and responsibility resulting from the disease (Gawłowicz et al., 2009).
Conclusions and practical implications When planning clinical and outpatient diabetes care for a small child, diabetic nurse educators should involve more than one caregiver in diabetes education to a greater extent than previously. These include both parents and people looking after the child until now, e.g. babysitters, grandparents, and tutors from educational institutions to which the child attends. This may facilitate sharing responsibilities arising from the disease in the household and may facilitate providing care for caregivers when the child is not at home. When only one person is
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include the organization of education concerning care of a child with diabetes in educational
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institutions and cooperation with teaching staff. Social and economic status is an important factor contributing to the level of burden experienced by caregivers; therefore, it should not be
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overlooked in nursing diagnosis allowing for setting goals of therapeutic education concerning psychosocial aspects. Nurses should recognize the important role of cooperation
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with the social worker, as well as possess and provide to caregivers updated information on existing forms of support for families of children with chronic diseases, especially those who are in a difficult financial situation.
During follow-up visits at the diabetes clinic current evaluation of the caregivers’ skills of
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dealing in the states of hypo- and hyperglycemia should be made. Re-education should
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include development of skills with regard to the optimization of the number of nighttime glycemic tests and knowledge of procedures in cases of hyperglycemic episodes.
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Acknowledgements
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The authors would like to thank the caregivers who agreed to participate in the study. The authors would also like to thank Proper Medical Writing for language support. The study was financed from the budget allocated to general scientific activities between 2010 and 2012 as part of research project No. 1940/B/P01/2010/39.
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family outcomes in families with children with chronic illness. J Pediatr Psychol 2006;31:481-9. Gawłowicz K, Krzyżaniak A. The influence of the type 1 diabetes in a child on the family functioning [in Polish]. Probl Hig Epidemiol 2009;90:72-7. Gawłowicz K, Miechowicz I, Krzyżaniak A. The role of parents taking of a child with chronic disease [in Polish]. Ginek Prakt 2009;17:45-9. Gray WN, Dolan LM, Hood KK. Impact of blood glucose monitoring affect on family conflict and glycemic control in adolescents with type 1 diabetes. Diabetes Res Clin Pract 2013;99:130-5. Haugstvedt A, Wentzel-Larsen T, Rokne B, Graue M. Perceived family burden and emotional distress: Similarities and differences between mothers and fathers of children with type 1 diabetes in a population-based study. Pediatr Diabetes 2011;12:107-14.
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Horsch A, McManus F, Kennedy P, Edge J. Anxiety, depressive, and post-traumatic stress symptoms
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Jacquez F, Stout S, Alvarez-Salvat R, Fernandez M, Villa M, Sanchez J, et al. Parent perspectives of
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Jarosz-Chobot P, Polanska J, Szadkowska A, Kretowski A, Bandurska-Stankiewicz E, Ciechanowska M, Deja G, Mysliwiec M, Peczynska J, Rutkowska J, Sobel-Maruniak S, Fichna P, Chobot A, Rewers M. Rapid increase in the incidence of type 1 diabetes in Polish children from 1989 to 2004, and predictions for 2010 to 2025. Diabetologia 2011;54:508-15.
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Jubber AP, Olsen Roper S, Yorgason JB, Poulsen FO, Mandleco BL. Individual and family predictors of psychological control in parents raising children with type 1 diabetes. Fam Syst Health
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Katz ML, Laffel LM, Perrin JM, Kuhlthau K. Impact of type 1 diabetes on the family is reduced by
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the medical home, care coordination and family centered care. J Pediatr 2012;160:861-7. Lindley LC, Mark BA. Children with special health care needs: impact of health care expenditures on family financial burden. J Child Fam Stud 2010;19:79-89. Lindström C, Aman J, Norberg AL. Parental burnout in relation to sociodemographic, psychosocial and personality factors as well as disease duration and glycaemic control in children with type 1 diabetes mellitus. Acta Paediatr 2011;100:1011-7. Malerbi FE, Negrato CA, Gomes MB; Brazilian Type 1 Diabetes Study Group (BrazDiab1SG). Assessment of psychosocial variables by parents of youth with type 1 diabetes mellitus. Diabetol Metab Syndr 2012;4:48.
ACCEPTED MANUSCRIPT McClellan CB, Cohen LL. Family functioning in children with chronic illness compared with healthy controls: a critical review. J Pediatr 2007;150:221-3.
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Patterson CC, Dahlԛuist GG, Gyürüs E, Green A, Soltèsz G and the EURODIAB Study Group. Incidence trends for childhood type 1 diabetes in Europe during 1989-2003 and predicted new cases 2005-20: a multicentre prospective registration study. Lancet 2009;373:2027-33. Recommendations of the Polish Diabetes Association [in Polish]. Diabetologia Kliniczna 2014;tom 2 (suppl.A):1-72. Rodrigues N, Patterson JM. Impact of severity of a child`s chronic condition on the functioning of two-parent families. J Pediatr Psychol 2007;34:417-26. Stallwood L. Influence of caregiver stress and coping on glycaemic control of young children with diabetes. J Pediatr Health Care 2005;19:293-300.
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Swallow V, Macfadyen A, Santacroce SJ, Lambert H. Fathers’ contributions to the management of
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Urbańska-Kosińska M, Marcinkowski J. Education of teachers who teach children suffering from insulin dependent diabetes mellitus (IDDM) as a prophylactics of complications [in Polish]. Probl
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Hig Epidemiol 2006;87(suppl):160-5.
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Yotani N, Ishiguro A, Sakai H, Ohfuji S, Fukushima W, Hirota Y. Factor-associated caregiver burden
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Figure 1. Selection of clinics (A) and caregivers (B) to study
ACCEPTED MANUSCRIPT Table 1. Demographic data of the study group Analyzed characteristic
Characteristic type
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Data on the parents of an ill child mother father Number Percentage Mean Number Percentage Mean n % n % Up to 35 years 39 34.8% 15.2% 15.2% 39.6 43.2 (SD=6.8) (SD=7.6) 26.8% 26.8% 36-40 years 29 25.9% Age 41-45 years 22 19.6% 23.2% 23.2% 34.8% 34.8% over 45 years 22 19.6% primary and lower 4 3.6% 4.5% 4.5% basic/gymnasium 27 24.1% 40.2% 40.2% Education general secondary and 51 45.5% 38.4% 38.4% technical higher 30 26.8% 17.0% 17.0% working 59 52.7% 92.0% 92.0% Professional activity not working 53 47.3% 8.0% 8.0% healthy 101 90.2% 85.7% 85.7% Health status unhealthy 11 9.8% 14.3% 14.3% Data on the family of an ill child Number Percentage n % country 46 41.1% Place city < 50 thousand 32 of residence of the 28.6% family city > 50 thousand 34 30.4% very good 8 7.1% Material good 67 59.8% conditions of the standard 34 30.4% family bad 3 2.7% 1 24 21.4% Number of 2 58 51.8% children in the 3 19 17.0% family 4-5 11 9.8% two generational family 89 79.5% Number of generations in the multigenerational family 23 20.5% family Demographic characteristics of ill children Number Percentage n % pre-school (3-6 years) 18 16.1% primary school (7-10 30 26.8% years) Age middle school (11-13 25 22.3% years) high school (14-16 years) 39 34.8% male 53 47.3% Sex female 59 52.7%
ACCEPTED MANUSCRIPT Table 2. Factors associated with children/families and the level of burden for caregivers.
General strain
Isolation Disappointment
R
-0.129
-0.231
-0.194
p
0.173
0.013*
0.039*
Duration of the disease
R
-0.034
-0.149
p
0.715
Number of glycemic tests daytime Number of glycemic tests nighttime
R
-0.001
-0.264
-0.187
0.989
0.004*
0.047*
-0.035
-0.132
-0.068
-0.083
0.115
0.709
0.165
0.470
0.380
0.028
0.049
0.060
-0.047
0.035
0.035
p
0.762
0.604
0.526
0.619
0.707
0.710
R
-0.089
-0.021
-0.120
0.205
-0.045
-0.061
p
0.347
R
0.101
p
0.286
R
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0.204
0.029*
0.633
0.518
0.120
0.036
0.212
-0.019
0.103
0.206
0.699
0.024*
0.838
0.275
-0.043
-0.113
-0.121
0.118
-0.175
-0.094
p
0.656
0.238
0.209
0.220
0.068
0.328
R
0.083
0.011
0.027
0.069
0.187
0.081
0.382
0.907
0.776
0.469
0.048*
0.395
-0.160
-0.056
-0.125
0.028
-0.112
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Factors associated Number of with hospitalizations children Metabolic control of diabetes Frequency of hyperglycemic episodes Frequency of hypoglycemic episodes
Total score
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Age of the child
Emotional Environment involvement
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CB Scale
-0.069
p
0.090
0.465
0.555
0.187
0.765
0.238
R p R p R
0.080 0.400 -0.115 0.223 -0.038
-0.045 0.635 -0.131 0.168 0.050
0.009 0.924 -0.130 0.170 -0.079
-0.034 0.720 -0.015 0.867 0.072
-0.038 0.687 0.043 0.648 -0.028
0.032 0.737 -0.127 0.180 -0.019
p
0.684
0.594
0.402
0.450
0.766
0.841
R 0.087 0.065 -0.028 0.116 -0.075 p 0.358 0.494 0.764 0.219 0.426 R -0.106 0.029 -0.193 -0.164 0.123 p 0.265 0.755 0.040* 0.082 0.193 R 0.155 0.135 0.046 0.160 -0.068 Father's age p 0.101 0.154 0.623 0.091 0.469 R -0.086 0.043 -0.089 -0.215 0.086 Father's education p 0.366 0.650 0.348 0.022* 0.363 p - level of significance Spearman p; R - strength of correlation between variables; *p
