Emotional characteristics of mothers bringing up children with arthrogryposis

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Abstract


Introduction. Arthrogryposis is a congenital disease that can cause feelings of deprivation in parents of affected children. Mothers of children with the disease may experience emotional trauma, manifested as post-traumatic stress disorder (PTSD) (a term coined by N.V. Tarabrina), anxiety and depressive manifestations. Mothers with such emotional problems may hinder the effective rehabilitation treatment of their children.

Aims. To examine the emotional characteristics of mothers of children with arthrogryposis.

Material and methods. In this study, the following methods were used: a scale that assesses the level of reactive and personal anxiety (C.D. Spielberg and J.L. Hanina); the Beck Depression Inventory; and the Gorovits Impact of Event Scale-R (N.V. Tarabrina). Case histories were also examined. Data were analyzed using Student's t-test. The study involved 58 mothers with children aged from 1 to 8 years old. Among these, 28 mothers had children suffering from arthrogryposis; the children of the remaining 30 mothers were apparently healthy.

Results. There was no difference in level of personal anxiety between the mothers of children with arthrogryposis and those with healthy children. The mothers of children with arthrogryposis suffered from severe situational anxiety and PTSD (including symptoms of intrusive invasion, avoidance, and hyper-arousal); the mothers of healthy children did not experience such emotional trauma. Mothers with negative emotional states of this kind may hinder the effective rehabilitation of their children with arthrogryposis. In such situations, the participation of a clinical psychologist who can provide the necessary psychological assistance on the basis of individual psychological diagnosis is required.


Introduction

The parents of a child with a severe musculoskeletal disorder are full-fledged participants in the clinical rehabilitation process that the child must undergo. The emotional and behavioral problems of the parents may present serious obstacles for effective treatment of the child. Psychological evaluation and follow-up of children admitted for surgery at a children’s hospital have shown that emotional and behavioral difficulties manifested by the child are directly linked to the emotional problems of that child’s parents. Children whose parents have emotional or psychological problems will often exhibit difficulties adapting to the hospital environment and the medical staff, may have problems sleeping, and will exhibit fear of surgical or other rehabilitative procedures. The mothers of these patients often will exhibit physical and affective symptoms, such as feeling sick, jittery, or depressed, or may show asthenic or other psychosomatic symptoms. The emotional trauma associated with giving birth to a child with a serious disability as well as events related to raising a chronically ill child may be the initial trigger for the development of a parent’s negative affective state [1–5].

The measures related to treatment of a sick child, be it surgical interventions or other medical manipulations, cause a heavy emotional stress. In situations wherein a child is born with a significant physical defect, negative emotional states may arise because of the impact that having a disabled child to care for has on the parents’ career plans or lifestyle [1, 4]. Parents who give birth to and must bring up a child who is chronically ill or disabled experience feelings of loss—loss of the hope of having a healthy child who will grow up to be a successful adult, loss of their view of the child as a source of pride, and loss of their self-image as being a careful mother or a successful father. In other words, the expectations that parents have with regard to their child and how they will raise that child, which are formed even before the child is born, are broken [2, 4]. This loss manifest in various ways—as refusal to accept the reality of the situation, as despair, as hostility or anger, as aggression towards others, as guilt, or as depression and/or anxiety [1, 2]. The child in turn subconsciously replicates the emotional state of the parents and will manifest the same 
symptoms [6].

Both domestic and foreign researchers have pointed out that the emotional state of the mother in particular has a significant impact on the child [1, 5, 9]. The phenomenon of a child’s dependence on the emotional state of its mother is explained by the attachment theory framework [7–9], in studying the phenomenon of the transmission of psychic trauma from generation to generation [6], and the mechanisms of mental development, for example, the mechanism of identification [6].

Arthrogryposis is a congenital disease in children that can invoke feelings of loss in parents. Arthrogryposis is a defect of the musculoskeletal system presenting as contractures of two and more joints along with muscular atrophy or hypotrophy and damage to the motor neurons in the spinal cord [10]. The disease requires long-term rehabilitative therapy and even a staged surgical treatment in some cases. Practically all children with arthrogryposis are physically disabled [10]. The mothers of these children can experience emotional states that can be classified as psychic trauma, manifesting as anxiety [4] or even as post-traumatic stress disorder (PTSD) [6]. Under PTSD, we consider the continuum of human response to stressor of high intensity, accompanying with the feeling of an intense fear or helplessness. With that, high PTS indicators may be comparable to the clinical presentation of a post-traumatic stress disorder (PTSD). The severity of psychic trauma and thus the extent to which symptoms manifest as PTSD depends on the degree of the child’s physical disability and the woman’s psychological constitution, social status, and ability of taking care of the child [3].

The goal of this study was to examine the emotional status of mothers of children with arthrogryposis.

Materials and Methods

The study was conducted in the Department of Arthrogryposis at The Turner Scientific and Research Institute for Children’s Orthopedics, where the children receive conservative and surgical treatment aimed at restoring of their self-sufficiency and movement. The children are accompanied by their mothers during the entire period of their hospital stays.

The emotional and psychological attributes of 28 mothers of children with arthrogryposis were compared to a control group of 30 mothers with healthy children. The children ranged in age from 1 to 8 years, and among the 28 children with arthrogryposis, 42% of them were affected primarily in their upper extremities, 29% primarily in their lower extremities, and 29% were affected in both their upper and lower extremities. All women signed an informed consent to participate in the study.

The following instruments were used for assessing the emotional and psychological attributes of the mothers: the Spielberg-Hanin State and Trait Anxiety scale, the Beck Depression Inventory, and the Impact of Event Scale. Demographic and personal data were abstracted from the participants’ medical charts.

The Spielberg-Hanin scale was used to assess anxiety level as an inherent characteristic of a person (trait anxiety) and as a mental status (state anxiety). Trait anxiety is manifested in a person as the tendency to perceive a large variety of different situations as threatening and to be in a constant state of anxious arousal. State anxiety is characterized by the development of tension, anxiety, and nervousness in response to concrete real-life situations.

Depressive symptoms were detected using the Beck Depression Inventory based on clinical observations. The generalized manifestations of depressiveness were assessed and included sadness, pessimism, feeling unlucky, discontentment, sense of guilt, punishment fantasy, abnegation, self-condemnation, suicidal thoughts, tearfulness, irritation, feelings of social disengagement, hesitation, symptoms of insomnia, fatigue, loss of appetite, reduced sexual drive, and weight loss. Higher scores are indicative of a depressed 
mood.

To determine whether the mothers had symptoms that fulfilled the criteria for a diagnosis of PTSD as described in the DSM-4, the Impact of Event Scale was used (M.Gorowitz, N.V. Tarabrina). This scale assessed whether an individual has experienced any of the following symptoms that are indicators of obsessive intrusion of a traumatic event, persistent avoidance of a stimuli that triggers recall or recounting of the event, or of an increased state of affective arousal: nightmares, obsessive feelings, images or thoughts attempts to attenuate or avoid feelings related to the traumatic event, reduction of responsiveness, hyperexcitability, irritability, fury, hypertrophic startle reaction, or psychophysiological excitement caused by recollections that lead to insomnia. For each woman in the arthrogryposis group, the inventory was completed by mothers by recalling an event pertaining to her child’s arthrogryposis. Each woman in the control group was asked to recall an event related to the most severe illness her child ever had. These were typically infectious diseases commonly occurring at an early age that did not lead to serious consequences or require long-term management.

Fisher’s exact test and the Student’s t test were used to analyze categorical and continuously distributed data, respectively.

Results and Discussion

The mean age of the women bringing up children with arthrogryposis was 30 years, and that of mothers of healthy children was 34.1 years. All examined women had no severe chronic mental or somatic disease and were of comparable social status regardless of the group they belonged to. All women in the control group and 90% of the women in the arthrogryposis group had a secondary or higher level of education. With regard to familial status, 86% of the women in the arthrogryposis group and 90% of the women in the control group were raising their child with a spouse or partner. The rest of the women were either not married or divorced.

The two groups of women did differ significantly from each other with respect to employment. In the arthrogryposis group, only 18% of the mothers were career professionals, whereas in the control group, 76% of the women were career professionals (Fisher test ϕ =17.90, p < .0001).

Table 1 shows the mean trait anxiety scores for the two groups of women. The groups did not differ significantly from each other. The scores in both groups correspond to relatively high levels of trait anxiety. (Trait anxiety is regarded as being high for scores greater than 45.) The mean group values of trait anxiety in the two groups of examined mothers were compared against the rated parameters. Based on this, the manifestations of trait anxiety in the mothers of the experimental and control group were found to correspond to average–high values (the trait anxiety indicator is regarded as high at values of more than 45 points). These results may indicate that there is an optimal level of trait anxiety for mothers raising children, regardless of whether the children are healthy 
or ill.

Table 1

Trait anxiety scores of women in the arthrogryposis and control groups

Experimental group

Control group

t

p

М ± S

М ± S

44.18 ± 7.97

45.55 ± 10.99

0.55

> 0.05

Note: M — mean value, S — standard deviation, t — Student’s test, p — difference significance level.

Table 2 shows the mean state anxiety scores for the two groups. On comparing against the standard indicators, the mean values between the two groups were significantly different. The mean value for the women raising children with arthrogryposis corresponds to a state of high anxiety (> 45). The mean score for the control group falls with the range of what is considered moderate anxiety (31–45). Thus, the indicators of state anxiety in the main group significanlty differed from the similar indicators in the control group (Table 2). These results indicate that the mothers of sick children experience feelings of personal discomfort, tension, and anxiety, possibly because accompanying a sick child to the hospital is energetically and psychologically draining.

Table 2

State anxiety scores of mothers in the arthrogryposis and control groups

Main group

Control group

t

p

М ± S

М ± S

47.04 ± 9.83

37.36 ± 11.75

3.43

< 0.01

Note: M — mean value, S — standard deviation, t — Student’s test, p — difference significance level.

Table 2 shows the mean scores of the two groups for the Beck Depression Inventory. For this instrument, a score in the range of 9–18 corresponds to a moderate level of depression. The arthrogryposis group’s mean score indicated that these mothers were moderately depressed compared to those in the control group, whose mean score fell below the cutoff point for the presence of depressed mood.

Table 3

Beck Depression Inventory Scores of mothers in the of the arthrogryposis and control groups

Main group

Control group

 

t

 

p

М ± S

М ± S

 

9.68 ± 8.03

4.84 ± 3.84

1.86

 

Note: M — mean value, S — standard deviation, t — Student’s test, p — diff erence signifi cance level.

Table 4 shows the subscores for Criteria B, C, and D that are required for a diagnosis of PTSD as described in the DSM-4. Symptoms of obsessive intrusion (Criterion В DSM-4), symptoms of avoidance (Criterion С DSM-4), and symptoms of an increased state of arousal (Criterion D DSM-4) 
occurred more often among women in the arthrogryposis group than in those in the control group. The results indicate that mothers of the children with arthrogryposis more frequently suffer severe emotional effects related to thoughts, recollections, and images related to their children’s illness than do women bringing up healthy children. The mother of a child with arthrogryposis may repeatedly have nightmares about events related to her child’s disease. She may avoid discussing any events related to the disease of her child. She may also experience severe feelings of isolation, distance herself from others, and be unable to express positive emotions toward others, including her own child. She may also exhibit decreased interest or involvement in the rehabilitative treatment of her child.

Under these circumstances, the maternal role gets distorted, and conditions arise for the formation of a parental attitude akin to emotional denial, distancing, and disregard of the child’s needs. Negative emotional state of the mother can enhance the traumatic experiences of the child and have a disruptive effect on the child’s emotional state and behavior. In turn, traumatic manifestations (fears, behavioral disorders) in the child can then serve to bolster the mother’s disconnection, thereby creating a vicious cycle in which the parent and child continually reinforce each other’s negative emotions and response to the  situation.

Table 4

Assessment for the presence of symptoms associated with post-traumatic stress disorder in mothers

in the arthrogryposis and control groups

Post-traumatic stress disorder

according to DSM-4 criteria

Main group

Control group

 

t

 

p

М ± S

М ± S

 

Intrusion (criterion B)

19.97 ± 7.94

11. 61 ± 7.62

4.11

< 0.001

Avoidance (criterion C)

15.58 ± 4.92

10.89 ± 8.18

2.63

< 0.05

Aff ectability (criterion D)

12.35 ± 7.20

8.61 ± 7.24

1.98

< 0.05

Summary index of

traumatization

44.74 ± 14.54

 

31.18 ± 19.55

2.99

< 0.01

Note: M — mean value, S — standard deviation, t — Student’s test, p — diff erence signifi cance level.

Mothers of children with arthrogryposis may experience emotional difficulties; this creates a risk for the development of conflicts during the child’s stay at the clinic for orthopedic treatment. These conflicts may affect the outcomes of surgeries and subsequent rehabilitation. They can also create difficulties for the medical staff who may experience stress, burnout, and recollection of their own emotional problems as they deal with the parents of the children they are treating. In these situations, the involvement of a clinical psychologist becomes necessary. The psychologist can perform psychological evaluations of parents and the child and provide medical staff information concerning the peculiarities of the parent–child dynamics. A psychologist can also provide necessary psychological support to mothers bringing up children with arthrogryposis.

Conclusions

1. Trait anxiety scores (stable individual and psychological characteristics) of mothers of children with arthrogryposis and mothers of conditionally healthy children do not significantly differ from each other and both correspond to a level of high anxiety.

2. State anxiety is higher in mothers of children with arthrogryposis than in mothers with healthy children and corresponds to a level of what is considered pronounced anxiety. This level of anxiety is likely due to the energetically and psychologically draining effort of accompanying a sick child to a surgical clinic for complicated treatments and rehabilitation.

3. Mothers of children with arthrogryposis are moderately depressed.

4. The manifestations of PTSD, such as obsessive intrusion, avoidance, and hyperarousal are more pronounced in mothers of children with arthrogryposis than in mothers with healthy children.

5. The mothers of children with arthrogryposis are at risk for the development of PTSD.

Information on Funding and Conflict of Interest

The work was undertaken with support from the The Turner Scientific and Research Institute for Children’s Orthopedics. The authors declare no conflicts of interest.

Galina V Pyatakova

The Turner Scientific and Research Institute for Children’s Orthopedics; Saint Petersburg State University

Author for correspondence.
Email: pyatakova@yandex.ru
MD, PhD (psychology), senior research associate psychologist of the department of infantile cerebral palsy. The Turner Scientific and Research Institute for Children’s Orthopedics, assistant professor of the chair of psychology extreme and crisis situations of the faculty of psychology of the Saint Petersburg State University.

Olga E Agranovich

The Turner Scientific and Research Institute for Children’s Orthopedics

Email: olga_agranovich@yahoo.com
MD, PhD, professor, head of the department of arthrogryposis. The Turner Scientific and Research Institute for Children’s Orthopedics

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