The aim was to examine depression and anxiety among parents of children with Cystic Fibrosis and the association between the parents’ symptoms and the child’s quality of life as rated by the parents. Parents completed HADS (Hospital Anxiety and Depression Scale), and CES-D (Center of Epidemiologic Studies Depression Scale), and assessed the children’s quality of life with CFQ-R (Cystic Fibrosis Questionnaire-Revised). Anxiety amongst the parents was higher than the general population (m = 6.55, SD = 3.54, p < 0.001). The level of depression does not differ from that of the general population. Mothers showed more anxiety symptoms than fathers (p < 0.001). Gender differences were not significant for depression symptoms. There is a strong association between the fathers’ self-rated depression and their rating of their child’s health. Both children and parents should be paid attention to in order to identify mental ill-health and take measures in good time.
Cystic fibrosis (CF) is one of the most common life-shortening, hereditary illnesses amongst western populations. Today there are a total of about six hundred patients in Sweden with CF and every year about twenty children are born with the illness [
CF is caused by a defect in the CF transmembrane conductance regulator, with secondary effects on many cellular functions. It leads to chronic pulmonary infection, pancreatic insufficiency and abnormal levels of electrolytes in sweat. The lung manifestations cause most of the CF related morbidity and mortality. There is no cure for the illness. The treatment is symptomatic, comprehensive and time-consuming for the patients. It consists of, amongst other things, respiratory physiotherapy and physical training, medicinal treatment, pancreatic enzyme supplementation, nutritional treatment as well as psychosocial support. The patients also require regular anti- biotic treatment due to chronic growth of bacteria in the lower airways. Even if patients with CF are living much longer than in the past they still have chronic pulmonary infections and other medical complications related to their disease, including diabetes, intestinal obstruction, cirrhosis, hemoptysis and pneumothorax.
Chronic illness in children not only affects the child, but also involves all the family members. As the CF- diagnosis is often established when the children are small, it is the parents who initially react to it [
Many studies have been carried out with the aim of examining anxiety, depression and quality of life in parents of children with CF [
In general the parents of children with CF are not more depressed or anxious than other adults. The crucial difference is due rather to the parents’ characteristics. It is the parents who blame themselves for their child’s illness, who do not set up goals for the child and who believe that things will go badly for the child in the future, who can be in the risk zone for anxiety and depression [
Anxiety and depression symptoms amongst parents of children with cystic fibrosis in contact with Stockholm’s CF-centre are in focus of this investigation. The correlation between the parents’ anxiety and depression symptoms and the children’s quality of life as rated by the parents is also studied. Important questions are: How large a proportion of the parents show anxiety and depression symptoms? Is there a correlation between the parents’ anxiety and depression symptoms and the children’s quality of life as rated by the parents? Are there differences between mothers and fathers in these aspects?
A multinational study conducted by professor Alexandra Quittner University of Florida, started in 2008 with the aim of examining depression, and anxiety amongst patients with CF as well as amongst parents of children with CF [
The response frequency of the parents was 64% (109 individuals). There were in all sixty-one mothers and forty-eight fathers and they were parents of seventy children.
The parents’ ages, civil status, education and employment status are shown in
Age, civil status and educational level do not differ from the corresponding percentage in the general population in Sweden [
The majority of the parents were in employment. One hundred and one (92.7%) parents worked full or part- time. The proportion of adults in employment in the whole country in 2008 was 76%.
Age of child | All parents | Only mother | Only father | Both mother and father |
---|---|---|---|---|
0 - 5 y | 34 | 2 | 32 | |
6 - 11 y | 38 | 6 | 32 | |
12 - 14 y | 15 | 5 | 10 | |
15 - 17 y | 22 | 3 | 3 | 16 |
0 - 17 y | 109 | 16 | 3 | 90 |
Variable | All parents (N = 109) | Mothers (N = 61) | Fathers (N = 48) |
---|---|---|---|
Age (years) | 24 - 56 | 24 - 52 | 24 - 56 |
M (SD) | 39.5 (6.8) | 38.8 (6.7) | 40.4 (7.0) |
Civil status (%) | |||
Single/never married | 1.8 | 1.6 | 2.1 |
Married | 53.2 | 50.8 | 56.3 |
Divorced | 13.8 | 16.4 | 10.4 |
Separated | 0.9 | 1.6 | - |
Remarried | 1.8 | 1.6 | 2.1 |
With a partner | 28.4 | 27.9 | 29.2 |
Education (%) (highest grade) | |||
Some high school or less | 1.8 | 1.6 | 2.1 |
High school diploma | 35.8 | 32.8 | 39.6 |
Vocational school | 14.7 | 14.8 | 14.6 |
Some college | 16.5 | 18.0 | 14.6 |
College degree | 30.3 | 32.8 | 27.1 |
Professional or graduate degree | 0.9 | - | 2.1 |
Employment status (%) | |||
Seeking work | 3.7 | 4.9 | 2.1 |
Working full or part time (either outside the home or at a home-based business) | 92.7 | 91.8 | 93.8 |
Fulltime homemaker | 1.8 | 1.6 | 2.1 |
Not working due to my health | 1.8 | 1.6 | 2.1 |
The patients and parents filled in the questionnaires at an ordinary visit at the centre. The parents completed the three questionnaires that were intended to measure anxiety and depression (HADS and CES-D) as well as their assessment of the child’s quality of life (CFQ-R).
The children’s health was here described in terms of lung capacity measured at the annual check-up. Lung function in percent of predicted was calculated from the reference values presented by Solymar et al. [
HADS is an easy to administer, self-assessment form intended to measure anxiety and depression symptoms respectively [
CES-D is a self-assessment form that is used to measure depression symptoms during the past week in adults [
CFQ-R is a Health Related Quality of Life instrument (HRQoL) specially developed for the CF population [
Max-value for each dimension is 100 (most positive, “healthy”) and the result is given in shares of 100 (%). This was filled in by thirty-two mothers and twenty-one fathers for thirty-five children age 6 - 14 y.
The statistical analyses were made in SPSS, version 15. Descriptive statistics (M, SD), t-values as well as calculations of the Pearson product-moment correlation coefficient were carried out.
The average for the children’s FEV1% is 89.14 per cent predicted which is to consider as normal. In the analyzed sample there was one child with CF in the age group 0 - 17 years that had CF-related diabetes. Two children had had hemoptysis (coughing blood) or pneumothorax (air in the pleura). Forty-five (64%) children had at one time (or more) received antibiotics intravenously. None of the children had been prescribed antidepressants.
The mean for HADS Anxiety amongst parents of children with CF in the age group 0 - 17 years is significantly higher than the average for a Swedish population sample (z = 5.6, p < 0.001). Forty-two (38.5%) parents reported anxiety symptoms above the cut-off value, fourteen (12.8%) at a clinical level. The results are higher than that expected amongst the general Swedish population, where 12% - 20% is at risk of suffering from an anxiety disorder at least once during their lifetime [
The average for HADS Depression in the same group does not differ significantly from the general population
Anxiety and depression | All parents | Mothers | Fathers | Diff mothers/ fathers | |||
---|---|---|---|---|---|---|---|
M | SD | M | SD | M | SD | ||
HADSA | 6.55 | 3.54 | 7.51 | 3.77 | 5.33 | 2.81 | t109 = 3.33 |
p < 0.001 | |||||||
HADSD | 3.77 | 3.02 | 3.79 | 3.23 | 3.75 | 2.78 | NS |
CES-D | 10.48 | 9.12 | 12.64 | 9.76 | 7.73 | 7.47 | t109 = 2.88 |
p < 0.005 |
(z = 0.39, p > 0.05). The results from the HADS Depression scale show that fifteen (13.7%) parents rated depression symptoms above the cut-off value and 3.7% at clinical level. The results show that the parents do not differ from the general population with regard to depression symptoms.
On the CES-D twenty-four (22%) parents were over the cut-off value (>15p). The probability of developing depression during their lifetime, up to 99 years, was 22.5% for men and 30.7% for women in Sweden during the period 1972-1997 [
The results regarding anxiety symptoms differed significantly between mothers and fathers. Thirty-two (52.5%) mothers reported anxiety symptoms within or above the cut-off values (19.7% at clinical level). The corresponding figures for fathers were ten (20.8%) individuals within or above the cut-off values (4.1% at clinical level). The gender difference was not significant for depression symptoms. Nine (14.7%) mothers and six (12.5%) fathers reported symptoms within or above the cut-off values. Only one (2.1%) father rated the values at a clinical level. Amongst the mothers there were six (9.8%) within the cut-off values and three (4.9%) rated results at a clinical level.
For the CES-D nine-teen (31.1%) mothers reported a result above the cut-off value (>15p) whereas amongst the fathers there were five (10.4%) who scored above.
According to the HADS Depression results there is no significant difference between fathers and mothers. HADS Anxiety shows that significantly more mothers than fathers show clear anxiety symptoms. CES-D that takes into consideration both somatic and cognitive depression symptoms also shows that significantly more mothers that fathers have clinically defined symptoms.
The correlation between the parents’ anxiety and depression symptoms (HADS and CES) and the children’s health rated by the parents is shown in
The table shows that there is a significant correlation between the fathers’ mental health and their ratings of their children’s health. Depression symptoms (HADSD) and a more general measure of depression symptoms (CES) appear to be the strongest. The strongest correlation is with Respiration. The mothers do not show any correlation between anxiety and depression symptoms and the children’s health but between Respiration and the more general measure (CES) of depression.
There is a certain correlation between the parents’ anxiety and depression symptoms and the children’s quality of life as rated by the parents. The correlation appears to be strongest with the fathers’ depression symptoms. The mothers, on the other hand, show almost no correlation at all.
According to the results the parents rated higher with regard to anxiety symptoms than the general Swedish population. Hardly 40% of all parents of children with CF rated symptoms within or higher than the cut-off values (8p - 11p - 16p) and approximately 13% have, according to the results, anxiety of clinical significance (>11p).
All parents (n = 53) | Fathers (n = 21) | Mothers (n = 32) | |||||||
---|---|---|---|---|---|---|---|---|---|
Variables | HADSD | HADSA | CES | HADSD | HADSA | CES | HADSD | HADSA | CES |
FEV1% | −0.16 | −0.13 | −0.08 | −0.30 | −0.33* | −0.21 | −0.07 | −0.02 | −0.01 |
Physical | −0.27* | −0.11 | −0.25 | −0.63** | −0.29 | −0.44* | −0.15 | −0.07 | −0.20 |
Emotion | −0.09 | −0.20 | −0.03 | −0.36 | −0.07 | −0.11 | −0.11 | 0.02 | −0.32 |
Vitality | −0.19 | −0.02 | −0.23 | −0.59** | −0.34 | −0.36 | 0.04 | 0.16 | −0.14 |
School | −0.26 | −0.10 | −0.17 | −0.54** | −0.41 | −0.33 | −0.14 | 0.03 | −0.07 |
Eat | −0.20 | 0.08 | −0.12 | −0.34 | −0.03 | −0.19 | 0.03 | 0.11 | −0.07 |
Body | −0.14 | 0.05 | −0.21 | −0.50* | −0.25 | −0.56** | 0.09 | 0.20 | 0.01 |
Treat | −0.14 | −0.17 | −0.29* | −0.42 | −0.52* | −0.59** | −0.03 | −0.05 | −0.16 |
Health | −0.28* | −0.19 | −0.35** | −0.56** | −0.27 | −0.53* | −0.13 | −0.15 | −0.24 |
Resp | −0.36** | −0.36** | −0.56** | −0.44* | −0.63** | −0.81** | −0.31 | −0.25 | −0.41* |
Digest | −0.26 | −0.23 | −0.36** | −0.29 | −0.46* | −0.54* | −0.24 | −0.15 | −0.27 |
Weight | −0.20 | −0.08 | −0.23 | −0.45* | −0.02 | −0.32 | −0.05 | −0.12 | −0.18 |
*p < 0.05; **p < 0.01.
The parents do not, appear to run any greater risk of becoming depressed compared to other Swedes. Approximately 14% rate depression symptoms within or above the cut-off values and approximately 4% have depression of clinical significance.
Compared with international results parents of children with CF in Stockholm are at a corresponding level with regard to anxiety symptoms [
Parents who are within or above the cut-off value on the anxiety scale reported chiefly worrying thoughts as well as fear, restlessness and strain. Those with values of clinical significance generally report that they are troubled by the above symptoms to a greater degree than those that are within the cut-off values. In addition there is a tendency to respond with “often” to the question about suffering from feelings of panic compared with those who were within the cut-off values who in turn, to a greater extent, answered, “sometimes”. Panic feelings are a type of undifferentiated anxiety that can be particularly difficult to control. Those with a clinical level on the depression scale seem above all to be troubled by joylessness regarding both the present and the future to a greater extent than other parents. These are also feelings that are relatively undifferentiated and therefore difficult to manage. Parents who suffer from panic feelings or joylessness are in general in need of psychological help. It is essential to pay attention to these risks within CF care and to offer psychological support to the parents. Psychological support of the parents is also important for the children’s well-being [
One result of this study is a clear gender difference amongst the parents’ ratings on the anxiety scale. The results show that mothers rated anxiety higher than fathers. The difference is significant. Every other mother rated anxiety within or above the cut-off values, and about 20% have anxiety of clinical significance. Corresponding figures for fathers were 20% within the cut-off values and approximately 4% at clinical level. The statistics show that women in general experience anxiety to a significantly greater extent than men. According to the latest Public Health Report [
With regard to depression symptoms, excluding physical symptoms, that could have a connection with a somatic condition (HADS Depression), there are no significant gender differences. If, on the other hand, questions concerning both somatic and cognitive depression symptoms are included, it appears that mothers rate depression symptoms significantly higher than fathers. This is an observation requiring further research.
On examination of the correlation between anxiety and depression symptoms amongst the parents and the children’s health as rated by their parents, another gender difference was found. Whereas the mothers showed barely any correlation, the fathers showed strong correlation with most of the self-rated variables regarding the children’s health. The correlation is smaller with regard to objective measures of the child’s health (FEV1%). It is most pronounced with regard to depression symptoms (HADS) as well as the more general assessment of anxiety and depression (CES).
The mothers’ anxiety symptoms do not appear to influence their assessment of the children’s health. It is not observable in the data whether the fathers gave the children’s health a low rating because they themselves felt low or whether they felt low because they considered the children to have poor health. This difference between mothers and fathers may indicate an underlying need of more support amongst the fathers and that they are more exposed to how they perceive the child’s health status than are the mothers. Another underlying cause may be that mothers are generally more worried about their children than fathers and therefore are not further affected by how they perceive the child’s health.
A limitation with the current sub-study is that comparisons have not been made with parents other than the general population. This means that the latter includes both parents of children in different age groups and persons without children. The results have not been followed up qualitatively which hampers the opportunity to make a deeper analysis. In contrast to many international studies, however, the current sub-study has a relatively even gender distribution amongst the parents and this is a strength. This has facilitated an insight into the difference between mothers and fathers’ way of managing chronic illness in their child/children.
Future studies should also include qualitative measures. From the above mentioned results, it is also important to pay attention to both children with CF and their parents at annual check-ups in order to identify mental ill-health and take measures in good time and also to be sensitive to the need for supportive interventions.