Diabetes, child care, and performance of family functions

Introduction

According to the WHO definition, diabetes identifies “a group of metabolic diseases characterised by hyperglycaemia resulting from defective secretion and/or insulin action” [1]. Chronic hyperglycaemia leads to organ changes predominantly in the kidneys, eyes, blood vessels, and nervous system [2]. Type 1diabetes is due to destruction of the pancreatic β cells, typically leading to the complete deficit of insulin [3]. Despite the average rate of incidence among European countries, Poland is characterised by the high growth rate of type 1 diabetes incidence. It is estimated that it is a level exceeding 9% per year [4, 5]. In Poland, the problem of type 1 diabetes applies to 20,000 children, and the current incidence rate is 17.1 per 100,000 children aged 0–14 years [6].
The literature dealing with the social consequences of the disease in the family not only focuses on the patient, his/her place in the family, attitudes of family members, and their emotional ties, but also tries to answer the question of which family functions change due to the disease [7]. Illness of a child fundamentally changes the situation of the family, relationships, and structure. It may disturb its functioning and result in the need to introduce a variety of adaptive mechanisms [7].
The study results show that families with chronically ill children may experience problems with adjusting to the disease, the relationship with the child, family conflicts can be enhanced, and problem solving skills may be decreased [8]. In connection with worse metabolic control of diabetes in the child, the quality of married life can be deteriorated [9], while prolonged care can exacerbate burnout syndrome in parents [10]. Diabetes is characterised by sharp and unexpected complications causing practical and emotional problems in the patient and his/her family. Parents may experience a sense of guilt for the lack of due care; families quarrel more often than those with healthy children [11]. The treatment of children with diabetes requires daily self-control in blood glucose monitoring, nutrition, physical activity, and insulin administration [12]. Treatment at home can foster misunderstandings between children and parents and is time-consuming. The study findings emphasise, among others, the following difficulties in caring for a child with diabetes: following dietary rules, making the child independent, the need for treatment, and learning difficulties [13].
Parents caring for the child may experience a burden on both a practical and an emotional level. The literature gives many different definitions of burden; Pearlin et al. defines it as problems of a physical, mental, emotional, social, and financial nature accompanying families who take care of the sick [14]. According to Sales, burden is a summary of all experiences and difficulties faced by family members as a result of the illness of a loved one [15], it can “refer to the stress experienced by family, professional, and other providers when assisting others, especially individuals with disabling medical or psychiatric problems” [16]. Thus, the treatment of the disease cannot be limited only to medical intervention, but should also introduce social and mental actions in relation to the family.
In Poland we have not yet implemented research undertaking the issue of the burden experienced by a caregiver of a child suffering from diabetes and its importance in the performance of family functions. The world literature contains the results of studies relating to the impact of diabetes in a child on family functioning, but they are not considered in terms of changes in the intensity of the performance of family functions.

Aim of the research

The analysis of the correlations between the care burden level in a caregiver and the perceived influence of type 1 diabetes in a child on the performance of family functions.

Material and methods

Procedure

The implementation of the study was preceded by obtaining permission of the Bioethics Committee (KB/131) and the author of the Caregiver Burden Scale (CB-Scale) Elmståhl S. A previous study on reliability showed high internal consistency for the five factors with Cronbach’s  values between 0.70 and 0.87. The studies were carried out in 4 out of 12 randomly selected centres in Poland (random sample without replacement). The following inclusion criteria were used: a child being treated in the clinical hospital, full family, direct caregiver of a child suffering from diabetes, the child’s age 3–16 years, disease duration of at least 6 months, and no chronic diseases in siblings. Caregivers gave written, informed consent to participate in the study. Data for the analysis was collected during a follow-up visit of a caregiver with the child to the diabetic clinic. The data was obtained from the patient’s history (performance of family functions) and CB Scale.

Measurement

Interview questionnaire

The interview questionnaire contained blocks of scalable questions for the assessment of the impact of diabetes in children on the intensity of performance of eight family functions: cultural and social, consumer, religious, material-economic, nursing care, emotional-expressive, control-socialisation, sexual and procreative. Characteristic activities (tasks) were distinguished within each function. Specific numerical values (from –3 to 3) were assigned to different values on the scale. This analysis allowed for calculation of the average for all activities within the analysed features.

Caregiver Burden Scale – CB Scale

The Caregiver Burden Scale (CB Scale) was used for the measurement of the burden level. It is a standardised and reliable tool developed by Elmståhl [17]. The scale contains 22 questions, which are answered on a scale of 1 to 4. The questions form five subscales: general effort, social isolation, disappointment, emotional involvement, and environment. The average score of the items included in the scale is the result of the total scale and subscales. The higher the number of points received by a respondent, the higher the burden.

Statistical analysis

Statistical analyses were performed using the program Statistica 9.0 PL. Normality of distribution for the study-dependent variables was tested using Shapiro-Wilk test. Correlation analysis was performed using the Spearman correlation coefficient. The significance level was defined as p = 0.05.

Results

In the study group, 30.4% of caregivers lived in cities of over 50,000 residents, 28.6% of respondents lived in cities up to 50,000 residents, and 41.0% in rural areas. The average age of the people involved in the study was 39.6 years (SD = 6.8). 45.5% of respondents had secondary and technical education, 24.1% vocational and gymnasium, and 26.8% higher. 21.4% of caregivers had 1 child, 51.8% had 2 children, and 26.8% had more than 2 children. 47.3% of direct caregivers were unemployed. 59.8% of families were in a good financial situation, 30.4% in the average financial situation. The average age of children with diabetes was 11.3 years (SD = 3.6), children aged 14–16 years accounted for 34.8%, and 7–10 years of age – 26.8%. 46.4% of children suffered for up to 3 years and 53.6% for over 3 years. Seventy-five percent of children were treated with insulin pump and 25% took insulin using a pen (Table 1).
The total level of burden in the studied group was 2.1 points. The highest levels of burden were observed in the “general strain” (2.41 points) and “disappointment” (2.31 points) subscales. For these subscales, 23.2% of caregivers declared a high level of burden. A low level of burden was observed among 59.8% of participants in the “isolation” and “environment” subscales (Table 2).
Data analysis shows that the burden level is important in the perceived impact of diabetes in a child on the performance of family functions. Higher values in the level of the caregiver burden are accompanied by a decrease of the intensity of activities within the cultural-social function (Table 3).
Statistically significant correlations were demonstrated between an increase in value of the total burden level and a decrease in the intensity of performance of the following activities: visiting friends and relatives (R = –0.323; p < 0.001), inviting friends and relatives (R = –0.364; p < 0.001), free relaxation (R = –0.452; p < 0.001), passive participation in culture (R = –0.279; p = 0.002), and active participation in culture (R = –0.308; p < 0.001). A relationship was shown between the burden level and performance of activities within the material-economic function. Higher values of the total burden level are accompanied by a decrease in permanent job income (R = –0.280; p = 0.002) and a decrease in spending on clothing (R = –0.202; p = 0.032). A higher level of burden in the environment subscale was significantly associated with a decrease of self-hygiene and care of appearance in adults (R = –0.221; p = 0.018) as well as less involvement of the spouse in the care of a sick child (R = –0.192; p = 0.042). The analysis of the relationship between the level of caregiver burden and the performance of consumer function reveals a downward trend in the individual subscales of the scale. The level of significance between the total burden level and a decrease in the intensity of housework was: cleaning (R = –0.267; p = 0.004), washing (R = –0.281; p = 0.002), ironing (R = –0.307; p < 0.001), and washing dishes (R = –0.255; p = 0.006). An increase in the total burden level is accompanied by an increase in the intensity of time spent with a sick child (R = 0.329; p < 0.001) as part of emotional-expressive family function and an increase in disputes between parents (R = 0.408; p < 0.001) (Table 4). The caregiver burden level did not substantially affect the performance of activities within the control-socialisation function. There was a significant correlation between an increase in the burden level on the environment subscale and an increase in the intensity of the control over a sick child (R = 0.192; p = 0.041). Other variables showed no relationship on the statistically significant level. The level of caregiver burden has little effect on the intensity of activities within the religious function. An increase in the total burden level is accompanied by a decrease in the frequency of confession (R = –0.197; p = 0.036) and receiving Holy Communion (R = –0.197; p = 0.036).
The reduced frequency of sexual intercourse (R = –0.192; p = 0.042) and lower interest in sex (R = –0.209; p = 0.026) were significantly associated with a higher sense of burden on the general effort subscale. No significant correlations were demonstrated between the caregiver burden level on the subscales of social isolation, disappointment, and environment, and within the changes in the intensity of the procreative and sexual function.

Discussion

The study seems to be among the first determining the relationship between the caregiver burden level and the perceived influence of diabetes mellitus type l diagnosed in a child on family functioning.
It has been shown that the overall level of caregiver burden is on a medium level and is close to the overall burden level experienced by caregivers of stroke patients [18]. The high level of burden in the subscales of general effort and disappointment covers 25% of caregivers. The research conducted by Malerbi et al. shows that 63% of caregivers feel overwhelmed by caring for a child with diabetes [19]. Recommendations for the treatment of a child with type 1 diabetes impose a number of obligations on parents [3]. The intensive treatment can be tedious and stressful for direct caregivers. The huge involvement in child care and numerous sacrifices may in the long term lead to physical and emotional overload, and a feeling that everything is done badly. This can lead to so-called burnout syndrome [10, 20]. According to the study results, the above state in mothers is promoted, among others, by the lack of free time and financial problems [21]. The so-called financial stressors are situational elements associated with chronic disease in the family [22]. The research findings show that higher caregiver burden on the subscales of general overall, social isolation, and disappointment is related to the perceived impact of the disease in a child on a decrease of permanent job income in the family and limited possibility of free recreation. As was shown by the studies conducted by Lindley et al., families with lower socioeconomic status experience higher financial burden, also at the lower levels of expense arising from the nature of the disease [23]. In the study group, only four fathers declared that they were direct caregivers of a sick child. A higher level of burden on the environment subscale was associated with a decrease in the perceived level of involvement of the spouse in the care of a sick child. The studies show that usually mothers are direct caregivers of children with diabetes. They take responsibility for the conduct of care to a greater extent than other members of the family [10, 19, 24–26]. The withdrawal of fathers from care may weaken the communication between spouses [27].
This means that fathers should be encouraged and trained to play a greater role in child care, thereby relieving mothers. The research conducted by Cyranka et al. showed that mothers of healthy children experience greater support and commitment of their spouses than those of children with diabetes [28]. Parents of young children are concerned that other people: nannies, teachers, family members will not be able to provide the proper care for a child [29]. This does not favour sharing responsibilities between different people, which may result in greater burden. Our findings confirmed that caregivers overwhelmed by higher levels of burden on the CB subscales perceived limited participation of the family in maintaining cultural-social contacts and free leisure. According to the study conducted by Marshall et al., parents indicate lack of freedom and liberty as losses resulting from diabetes in a child [30].
Our study confirmed that the higher overall caregiver burden level correlated with an increase in the number of family disagreements perceived in connection with the illness of a child. This is also reflected in the results of other authors [31]. It seems to be related to parents taking responsibility for treatment and beliefs about the feasibility of the treatment regimen, self-efficacy, and the fear of hypoglycaemia [32, 33]. The analysis of the burden level carried by Haugstvedt et al. using the Family Burden Scale showed that the highest burden was due to the exercise of medical care, followed by physical and mental problems, disturbances in the family, and social constraints of a child [34]. It was noted that a higher level of burden on the individual subscales was significantly associated with the amount of time spent with a sick child. The studies of Greek families with diabetic children indicated that caregivers adjusted their lifestyle to the illness of a child, which in turn did not improve relations between parents [35]. Burden on the emotional involvement subscale was on the middle level in 23.1% of caregivers, and in 5.4% it was high. Behavioural changes of a sick child perceived by parents are factors influencing the emotional condition of a caregiver [36]. In the states of hypoglycaemia patients may experience: irritability, tantrums, inappropriate behaviour, restlessness, aggression, and a jocular attitude. Caregivers can be impatient because of oversensitivity in a child [13]. Other results show that parents of children treated using pumps experience less stress [32], which may protect them against feelings of anger and rage. 71.4% of patients demonstrated low burden in the emotional involvement subscale. This may be related to the fact indicated in the literature that diabetes as a chronic stressor, whose potency decreases with duration of the disease, becomes one of the so-called nuisances of everyday life. It serves as a strong traumatic stressor during periods of acute and chronic complications [37].
The level of caregiver burden on the environment subscale in 37.5% of caregivers was on the medium level. Higher values of burden were accompanied by greater control of a sick child. The complexity of problems experienced by caregivers also stemming from the environment outside the family and the resulting anxiety may manifest itself in excessive control, which in the future may impede the child in taking responsibility for the control of the disease.
To sum up, a caregiver of a child suffering from diabetes type 1 experiences high and medium burden on the subscale of general strain and disappointment. The higher burden level correlates on a statistically significant level, mainly with changes in the intensity of performance of the cultural-social, consumer, and emotional-expressive family function, perceived by a caregiver.
Our study proposes a range of studies conducted in families of children suffering from diabetes type 1. They have some limitations due to the impossibility to use an objective tool to measure the multi-dimensionality of changes that occur in the functioning of the family due to the illness of a child. Our study included only mothers.
The results suggest that future studies should seek to identify factors relevant to the caregiver burden level and realising that it may constitute an indirect threat to the functioning of the family of a child with diabetes mellitus type l. Care providers should consider developing strategies to reduce the caregiver burden level, which can contribute to a better functioning of the family and indirectly achieve better therapeutic effects in children.

Conclusions

The burden of caring for a child with type 1 diabetes encourages social isolation of the family, neglecting everyday tasks, and increased disagreements between the parents. Deterioration of financial situation due to a child’s sickness contributes to higher burden of care. Care disappointment experienced by careers is linked to reduced realisation of cultural, social, and consumptive family functions.

Recommendations

Preparing a family to care for a child with diabetes requires more education and stimulation of members of the family, other than the mother.
Families with a difficult financial circumstances created by a child’s illness should receive financial support.
Support and encouragement of a career’s active ability to deal with a child’s diabetes-related problems may reduce care disappointment and therefore make things easier for the family.

Acknowledgments

The authors would like to thank the caregivers who participated in the study and the author of the CB Scale for consent to use it.
The research was financed from the budget for science as research project No. 1940/B/P01/2010/39.

Conflict of interest

The authors declare no conflict of interest.

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Address for correspondence:

Ewa Kobos MD
Department of Social Nursing
Warsaw Medical University
ul. Ciołka 27, 01-445 Warsaw, Poland
Phone: +48 503 307 136
E-mail: kobewa@interia.pl