S Bolu, A Aşık, F Bolu

Abstract

Purpose: The purpose was to compare anxiety and depression levels in parents of children with type 1 diabetes mellitus (T1DM) with those of healthy controls and to reveal the stress coping methods employed. Methods: Parents of both groups were assessed with the Beck Anxiety Inventory, the Beck Depression Inventory, the Coping Orientation to Problems Experienced (COPE) Scale and the Quality of Life (QoL) Scale. Findings: Patient group parents scored higher on the anxiety and depression inventories. Mothers in the patient group registered significantly higher scores than fathers. The psychosocial health score on the QoL was lower in the study group. COPE acceptance subscale scores were higher in the patient group. Conclusion: Parents of children with T1DM are at risk of developing anxiety and depression. Parents should therefore be followed-up, the objective being to reduce stress and anxiety by providing these parents with the requisite education and psychosocial support.

Introduction

Type 1 diabetes mellitus (T1DM) is a chronic metabolic disease resulting in the breakdown of insulin-producing pancreatic beta cells, insulin deficiency, and blood sugar elevation under the influence of environmental factors in individuals with genetic dispositions.¹ There are two forms of the disease, Type 1A (70-90%) emerging after autoimmune-mediated breakdown of beta cells, and Type 1B, the pathogenesis of which is uncertain.² Regular blood sugar measurements, together with insulin therapy and diet and exercise, are essential in the management of T1DM.^1,3 The parents of children and adolescents with T1DM undertake the day-to-day management of the disease, and this parental responsibility impacts significantly on family life.⁴ Although technological advances have facilitated the observation and management of children with T1DM, parents are still exposed to high levels of stress, and such stress is reported to be capable of affecting parental mood and to increase the risk of anxiety and depression development.5 These psychological problems occurring in parents have been shown to increase intrafamilial conflict, to affect family communication, to have adverse impacts on children, and to impair the parenting skills of mothers and fathers.⁵

The purpose of this study was to compare depression, anxiety, and methods of coping with stress among mothers and fathers of children with T1DM with a group of parents of children with no chronic disease.

Methods

This study was performed with the parents of 55 patients aged between four and 18 years bring followed-up due to T1DM at the Adıyaman Education and Research Hospital Pediatric Endocrinology Clinic, Turkey, between 2016 and 2019. A control group made up of 62 parents of children matched with the members of the patient group in terms of age, gender, and monthly household income was also established.

Parents were interviewed face-to-face, at which time the scales were explained to them. They were asked questions about the family's sociodemographic characteristics and children diagnosed with T1DM, and the data were recorded on information forms. The Beck Anxiety Inventory (BAI), the Beck Depression Inventory (BDI), the Coping Orientation to Problems Experienced (COPE) Scale, and the Quality-of-Life Scale were also completed.

Beck Depression Inventory (BDI): This scale developed by Beck et al in 1961 was adapted into Turkish by Hisli et al in 1988.^6,7 Higher total scores from the 21 items in the scale indicate greater severity of depression. Scores on the inventory range between 0 and 63. Scores of 0-9 are interpreted as minimal depressive symptoms, 10-16 as mild, 17-29 as moderate, and 30-63 as severe. Individuals scoring 17 or more can also be regarded as an at-risk group.⁷

Beck Anxiety Inventory (BAI): This scale was developed by Beck et al in order to measure anxiety-related emotional and somatic symptoms within the previous week.⁸ It was adapted into Turkish by Ulusoy et al.⁹ Possible total scores range between 0 and 63. The scale differentiates the clinical anxiety group from other pathology groups. Based on their BAI scores, patients are classified as having low anxiety (scores 0-17), moderate anxiety (scores 18-24), or high anxiety (scores of 25 or more).

Coping Orientation to Problems Experienced (COPE) Scale: Developed by Carver and Scheier in 1989, this scale contains 15 sub-dimensions intended to measure different methods of coping.¹⁰ COPE was adapted into Turkish by Ağargün et al.¹¹ The sub-dimensions of the scale are Positive Reinterpretation and Development, Mental Disengagement, Focus on and Venting Emotions, Emotional Social Support, Active Coping, Denial, Humor, Turning to Religion, Behavioral Disengagement, Instrumental Social Support, Restraint, Substance Use, Acceptance, Suppression of Competing Activities, and Planning. Possible scores on each sub-dimension range between 4 and 16. The scores obtained from the sub-dimensions indicate which coping methods are most employed by the individual.

Quality of Life (QoL) Scale for Children: This scale was developed by Varni et al for the purpose of measuring health-related quality of life in the paediatric population aged 2-18.¹² The validity and reliability of the Turkish-language version were confirmed by Üneri for the 2-7 age group and by Çakın Memik for the 8-12 and 13-18 age groups.^13,14 It consists of 23 items. The scale results are generally interpreted based on three main scores: the total score, the total physical health score, and the total psychosocial health score. The items are scored between 0 and 100, and quality of life is interpreted as being directly proportional to the score achieved. This scale consists of two forms: one filled out by children and the other by parents, assessing the parent's perception of the child's quality of life. There are four parental forms for ages 2-4, 5-7, 8-12, and 13-18, and three child/adolescent forms for ages 5-7, 8-12, and 13-18. It consists of 23 items investigating physical and psychosocial (emotional, social, and school) functioning. The child form used between the ages of five and seven is a three-point Likert-type scale, while the other forms are five-point Likert-type. In our study, only the parental form was used to assess the quality of life of children aged 2-7 years, while both child and parental forms were used for older children.

Statistical Analysis

Statistical analysis was carried out on SPSS 23.0 software. Categorical data were compared by means of the chi-square test. The Kolmogorov-Smirnov test was applied for evaluating normality of distribution of continuous variables. The independent Samples t test was employed to compare normally distributed continuous variables, the data being expressed as mean±standard deviation (SD) (minimum-maximum). The Mann-Whitney U test was applied to compare non-normally distributed continuous variables, the data being expressed as median (minimum-maximum) values. The chi-square test was applied for intergroup comparisons of categorical variables. When quantitative variables were compared with each other, Spearman correlation analysis was used. p values below 0.05 were regarded as statistically significant.

Results

This study was conducted with the parents of 55 children diagnosed with T1DM and 62 children without chronic diseases as the control group. The patient group included 32 girls (58.2%) and 23 boys (41.8%), while the control group included 36 healthy girls (58.1%) and 26 healthy boys (41.9%). No significant gender difference was observed between the patient and control groups (p=0.99). The mean age±SD was 12.17±3.68 years in the patient group and 12.06±3.60 years in the control group, with no significant difference between the two groups (p=0.870). The parents of the patient group comprised 41 mothers (74.5%) and 14 fathers (25.5%), while the parents of the control group comprised 37 mothers (59.7%) and 25 fathers (40.3%). The type of parent participating in the study and parents' education levels were similar in both groups (p=0.08, p=0.356, p=0.149) (Table 1). The mean±SD duration of diagnosis among children in the study group was 3.72±2.78 years (minimum: 4 months, maximum: 10.83 years). Median (range) BAI scores were 8 (0-49) among the parents of patients and 3 (0-23) among control group parents. Median (range) BDI scores were 9 (0-32) in the parents of patients and 4 (0-19) in control group parents. BDI and BAI values were significantly higher in the patient group parents (Table 2). Among patient group mothers, the median (range) BAI and BDI scores were 10 (0-49) and 11 (0-32), respectively, while among fathers, they were 6 (1-10) and 4 (0-16). Mothers' BAI scores were significantly higher than those of fathers. No significant difference was found in BAI and BDI scores between control group mothers and fathers (Table 3). COPE analysis revealed no significant differences between the two groups in terms of problem-based coping, focus on and venting emotions, or non-functional coping (p>0.05). No differences were found in other COPE sub-dimensions, except for acceptance, which was significantly higher in the parents of the study group compared to those of the control group (Table 4).

The Quality-of-Life Scale parental forms were evaluated across all age groups, while the QoL child forms were assessed in children aged 7-18. Physical health scores were similar between the two groups, whereas psychosocial health and total scale scores were significantly higher in the control group than in the study group (Table 5). A correlation analysis was performed between age, duration of diagnosis, and HbA1c levels of children with Type 1 DM and the QoL Parent/Child Forms, as well as the BAI/BDI scores of parents. It was found that only the Psychosocial Score and Total Score of the QoL Parent Form exhibited a weak negative correlation with HbA1c levels (r=-0.317, p=0.018; r=-0.269, p=0.047, respectively) (Table 6).

Discussion

The treatments administered to children with T1DM, blood pressure monitoring, dietary restrictions, and occasional clinical controls are all problematic in terms of their social lives. In addition, T1DM affects parents as well as children.¹⁵ A study from the USA using the Parenting Stress Index showed that greater stress among parents of children with T1DM than in a control group.¹⁶ Studies investigating the psychological experiences of parents of children with T1DM have reported rates of anxiety symptoms between 21% and 59%, and rates of depressive symptoms between 10% and 74%.⁵ The highest rates of anxiety and depression were reported in research concerning parents of children recently diagnosed with T1DM.¹⁷ Rates of moderate and severe depression of 17-22% have been reported in different studies of the mothers of children newly diagnosed with T1DM.¹⁸ The higher BAI and BDI scores among parents of patients with T1DM compared to the control group in the present study shows that these parents are adversely affected by their children's disease, and this was compatible with the previous literature. Mild depressive symptoms were identified in 36.3% of parents of children with T1DM using the BDI, moderate symptoms in 9%, and severe symptoms in 3.6%. The lower rate of parents exhibiting severe depressive symptoms in the present research compared to other studies may be associated with the fact that all children under monitoring by our clinic were included, irrespective of age at diagnosis. Stallwood indicated that parental stress increased as the age of children with T1DM decreased.¹⁹ However, we determined no association between parents' anxiety and depression scores and the age of their children. This finding suggested that the stress observed in parents of children with T1DM is independent of the child's age. Various studies have reported greater psychological problems in the mothers of children with T1DM compared to fathers.^20,21 Similarly in the present study, anxiety levels were higher in the mothers of diabetic children than in fathers. However, we determined no significant difference between the sexes in terms of depressive symptoms.

The relationship between the duration of diabetes and quality of life in Type 1 diabetic children has been evaluated in various studies. Some studies have reported a negative relationship between the duration of diabetes and quality of life.^22,23 On the other hand, Emmanouilidou et al did not find a significant relationship between the duration of diabetes and quality of life in Type 1 diabetic children of Northern Greek origin.²⁴ Another study by Caferoğlu et al reported that children who have had diabetes for at least one year perceive their quality of life similarly to non-diabetic children, attributing this to diabetic children adapting to the disease over time.²⁵ Similarly, in our study, we did not find a significant relationship between the QoL scores of Type 1 DM children and their parents' anxiety and depression levels with the duration of diabetes. Metabolic control of diabetes in children and adolescents with Type 1 DM is considered an important factor affecting quality of life.²⁶ Studies have reported that children with lower HbA1c levels have better quality of life.^22,27 Wagner et al demonstrated that children with Type 1 diabetes supported by an experienced diabetes team have a similar perception of quality of life as their healthy peers.²⁸ In our study, we did not find a significant relationship between HbA1c levels and children's quality of life. However, it was observed that as HbA1c levels increased, the QoL Parent Form Psychosocial and Total Scores decreased. This finding suggests that problems in metabolic control of diabetes may primarily negatively affect the parent's perception of quality of life.

Ensuring appropriate nutrition for children with T1DM, frequent blood sugar controls, and insulin administration represents a significant burden for parents and raises their stress levels. Studies investigating anxiety and stress levels in the parents of diabetic children have revealed that difficult and constant daily care and complications of diabetes also contribute to this state of affairs.^29,30 Studies have shown that diet, blood sugar monitoring, and insulin therapy applied to one member of the family can restrict the lives of all members and give rise to anxiety in parents.³¹ Persistent anxiety and stress can lead to the development of parental anxiety and depression. Depressive symptoms observed in parents can adversely affect children's behaviours, bonds between parent and child, and the management of T1DM.³² High parental anxiety has been shown to lead to increased maternal control and overprotection. In addition, high parental anxiety can result in a desire for a more powerful role in the management of the diabetes, and can reduce learning about the management of the condition.³³ Studies have reported that psychological problems in the parents of children with T1DM also lead to depressive symptoms in children, behavioural problems, and low quality of life perception.^34,35 When the parental scale evaluating quality of life was applied in the current research, parents in the patient group perceived poorer quality of life in psychosocial terms than the parents of healthy children, and increasing depressive symptoms and anxiety levels in parents were negatively correlated with children's quality of life. Similarly, comparison of quality-of-life scales applied to children yielded a markedly lower mean psychosocial score in the T1DM group than in the controls. Our study findings show that children diagnosed with diabetes and their families need support and guidance from professional teams during the therapeutic process.

Coping methods employed by parents in case of chronic disease can facilitate adaptation to the disease on the part of both the family and the child.²⁰ A study from Iceland involving the parents of adolescents with T1DM reported that mothers used more coping methods such as greater reading about the disease and talking with the diabetes team than fathers, and that the coping mechanism most commonly employed by both parents was maintenance of family stability.³⁶ Another study reported that the use of acceptance, positive thinking, and distraction among mothers of adolescents with T1DM increased their diabetes-related stress management skills and can also reduce anxiety and depression symptoms.³⁷ In the present study, analysis of the stress-coping attitudes of parents of patients with T1DM showed that acceptance was more commonly employed by these parents than by the parents in the control group. Acceptance means acknowledging difficult and adverse circumstances and coping with it in a constructive manner. Acceptance has also been described as a beneficial reaction emerging in the face of immutable conditions.³⁸ Acceptance of the disease on the part of parents and their adoption of a planned approach to it may be regarded as a functional coping approach in diabetes, as in all chronic diseases.

In conclusion, the mothers and fathers of paediatric patients with T1DM are at an enhanced risk of developing anxiety and depression. Therefore, parents should be monitored for symptoms of both conditions, and the necessary information and psychosocial support should be provided to reduce familial stress and anxiety. Acceptance, one of the coping methods that parents will employ during this process, can facilitate adaptation to the disease on the part of both the family and the child.

Declaration of Interest

The authors declare no conflict of interest.

Funding

No specific funding was received from any bodies in the public, commercial or not-for-profit sectors to carry out the work described in this article.

Ethical Committee Approval

Ethical approval was obtained from Adiyaman University Ethics Committee (dated October 23, 2018, and decision number 2018/7-8).

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