Numerous studies have been conducted on the psychological impact associated with the treatment of idiopathic scoliosis and kyphosis. The results of these studies are important to consider when developing a comprehensive, multidisciplinary approach to treatment.
Noonan et al.1 studied the long-term psychosocial characteristics of patients treated for scoliosis. Subjects were 95 female patients with scoliosis who were treated with the Milwaukee brace. Sixty-five of the subjects were treated with bracing alone, and 30 of the subjects also underwent arthrodesis for curve progression. Forty-nine healthy females served as control subjects. Five psychosocial areas were measured: depression, health locus of control, body image, perception of being discriminated against because of appearance, and satisfaction with overall appearance. Data were collected at an average follow-up of 7 years. No significant differences were found between the groups with regard to depression or health locus of control. Compared with the control group, patients with scoliosis recalled being significantly more discriminated against because of their appearance and having a significantly lower satisfaction with their overall appearance during their treatment period. However, as they aged, this difference became insignificant. With regard to body image, patients who underwent surgery had a more negative body image of the axial skeleton than did subjects in the braced and control groups. The authors concluded that transient psychological effects often are present during treatment, and a lower body image may persist for years in patients who undergo surgery.
MacLean et al.2 examined the psychological effects of coping with scoliosis on patients and their families. Subjects were 31 preadolescent and adolescent girls and their families (mean age, 13 years). Eighty-seven percent of the girls wore low-profile Boston braces, and the balance wore the Milwaukee brace. All subjects were on a part-time bracing schedule (13 to 16 hours/day) that allowed them some scheduling flexibility. A significant number of parents (84 percent) described the initial bracing period as stressful. Common stressors included soreness, skin irritation, concerns about fit, difficulty breathing and eating, torn clothing and bed sheets, and discomfort during physical activities. Forty-six percent of parents reported that their daughters experienced emotional distress, including anxiety, fear, social withdrawal, and depression. Many families indicated that establishing a daily routine was helpful in coping with the brace wearing treatment. Although there can be emotional benefits associated with the part-time bracing schedule (ie, allowing the patient some control over her situation and minimizing the social stigma associated with brace wearing), many of the subjects in this study reported the negotiating process inherent in the schedule to be stressful.
Using the Adolescent Health Survey, Payne et al.3 compared the psychological functioning of 685 adolescents with scoliosis with that of 528 control subjects. The authors found that male adolescents with scoliosis were 50 percent more likely to report being less healthy, 97 percent more likely to worry that their body was developing abnormally, had a 79 percent greater concern about the quality of peer relationships, had 94 percent greater alcohol consumption, and were more than 10 times more likely to have thoughts of suicide than were males without scoliosis. Females with scoliosis were three times more likely to consume alcohol, and had a 55 percent greater incidence of suicidal ideation than their peers without scoliosis.
Emotional functioning has also been studied in relation to the type of brace prescribed.4 Quality of life was measured in 102 adolescents using the Quality of Life Profile for Spine Deformities (QLPSD) instrument. Twenty-five adolescents wore the Milwaukee brace, 30 adolescents wore the Boston brace, 34 wore the Charleston bending orthosis, and 13 were prescribed other thoracolumbosacral orthoses. Areas measured by the instrument included psychosocial functioning, sleep disturbances, back pain, body image, and back flexibility. Results of the study found that, compared to the Milwaukee brace, the Charleston and Boston braces have a lower impact on overall quality of life and on the psychosocial functioning of adolescents with spine deformities. The impact of brace treatment on quality of life in patients with severe disease (ie, idiopathic scoliosis and Scheuermann's disease) was greater than in patients with less severe curves. Length of time wearing the brace was also a factor. Quality of life improved after the initial stressful bracing period but began to decline during the course of time. The authors speculate that the transition from childhood to adolescence may have played a role in these results.
Lindeman and Behm5 looked at the psychological factors that predict poor brace-wear compliance. Depending on patient curvature, either the Cuxhaven or Boston brace was used. Compliance was self-reported. The researchers found that girls who were noncompliant with the brace wearing were those who were anxious about the possibility of failure and did not expect to succeed in dealing with their scoliosis. They were also found to have low self-esteem and did not seek social support. However, boys who were noncompliant with brace wearing had high self-esteem, high expectations about the success of their bracing treatment, and sought social support. The only factor that predicted noncompliance across gender lines was sleeping problems; the more male and female patients experienced sleeping problems, the less they used their brace.
Gender differences were also found in a study conducted in Greece.6 The authors looked at perceptions of body image, happiness, and satisfaction in male and female adolescents wearing the Boston brace. Although all adolescent subjects with scoliosis were found to have a poorer body image perception than did the control group, boys with scoliosis were found to have a better body image perception than girls with scoliosis.
Kahanovitz and Weiser7 studied the psychological impact of adolescent idiopathic scoliosis and found that the mother's attitude about the child's diagnosis was strongly and positively related to the child's attitude. The more positively the mother viewed the scoliosis, the more positively the child did as well. Positive perceptions were correlated with higher self-esteem and less anger, depression, fatigue, and confusion than were negative perceptions.
Wickers et al.8 researched psychological factors related to noncompliance with full-time wear of the Milwaukee brace. Subjects completed a battery of psychological tests upon diagnosis. After a year of bracing, the primary orthopedic physicians divided the subjects into two groups. The Good group consisted of patients judged to have accepted their brace treatment program. The Bad group consisted of patients who refused to comply with requirements of the program or experienced overt adjustment difficulties. Criteria for group classifications consisted of self-report information, as well as corroborative information from parents, schools, x-rays, and physical examinations. Results from the earlier administered test battery were analyzed. Although there were no strong statistical differences between the two groups, three trends were identified.
Poor adjusters had lower IQs and reading abilities.
Poor adjusters showed more acting-out and rebellious behaviors and less tension related to physicians.
Poor adjusters were more physically active than good adjusters.
When considering the impact and relevance bracing for scoliosis and kyphosis has on patients, it is helpful to consider the developmental tasks they are facing. According to the developmental theory of Jean Piaget,9 during middle to late childhood, cognition is very concrete. Children consider laws and rules as absolute principles. When a rule is broken, punishment should be given. Progression from concrete to formal cognition occurs during early adolescence. As children become older, they begin to regard rules as the result of agreements among contemporaries and accept the idea that rules can be changed through negotiating. Moving from childhood to adolescence, individuals begin seeking emotional independence from parents and other adults and strive for acceptance and social approval from peers. A certain amount of rebellion is expected as adolescents search for achievement of identity.10 They begin questioning their parents' values as they begin searching for their own. Risk taking and the testing of limits are part of achieving independence and self-identity for the adolescent. There is a significant impact of hormones on mood and physical appearance, and changes in the body caused by puberty lead to uncertainty.
Based on the findings of the cited research, orthopedists, orthotists, and their staff should consider the following factors when developing a comprehensive treatment approach to scoliosis and kyphosis.
Be cognizant of childhood developmental factors and, as a result, stay attuned to potential changes in compliance and psychological functioning (both positive and negative) during the course of brace wearing.
Consider gender differences. Male and female patients may respond differently to the stressors of bracing. Research posits that although high self-esteem in female patients may suggest compliance, high self-esteem in male patients may suggest noncompliance. Research also indicates that male patients who seek social support are those who are noncompliant with bracing treatment. Additional research is needed, but this may suggest that male adolescents do not receive benefits from support groups.
The feelings of the parents, as well as the parent-child relationship, should be considered when treating the patient with scoliosis. Recognize that family dynamics can have a direct impact on treatment compliance.
The benefits of part-time versus full-time bracing schedules should be considered. Preadolescents likely will be more compliant with full-time bracing schedules than will adolescents.
As concluded by Climent and Sanchez,4 "In cases of different orthoses of proven similar effectiveness in controlling the scoliotic curves, the use of bracing with the lowest impact on the quality of life should be recommended."
When presenting information on the patient's diagnosis, the disease process, and the brace treatment program, cognitive levels and reading abilities should be considered. To ensure proper understanding, information should be provided in a variety of ways, such as verbally/auditorily, visually, and in printed handouts and videos.
Wickers et al.8 found that adolescents who adjusted poorly to bracing treatment tend to be rebellious and often were not overly impressed or influenced by what the physician has to say. Be mindful that rejection of authority and risk-taking tendencies are normal in adolescence and may include rejection of medical advice and medical treatment. With most adolescents, scolding, threatening and lecturing to increase cooperation and compliance are unlikely to be effective. Interpersonal styles that communicate warmth, caring, and genuine regard should be developed. Be empathic, but do not assume to understand how the patient feels (unless you, too, have worn a brace).
Faced with the developmental stressors and challenges described, it is not surprising that children, particularly adolescents, will struggle emotionally with bracing. Their adjustment difficulties may be minimal and transient or severe and long term. They can include depression, anger, anxiety, suicidal ideation, drug/alcohol abuse, low self-esteem, poor self-image, rebelliousness, and peer difficulties. It is important for orthopedists and orthotists to have resources in place to address these issues because poor adjustment typically equates with poor compliance.
When the patient is experiencing significant psychological distress, one-on-one psychological intervention is warranted. Given the importance of family dynamics, therapy likely will include a family component. For less severe adjustment problems, peer support groups often are used. However, the effectiveness of peer support groups for adolescents has been researched, and not all findings are positive. Wysocki et al.11 compared the perceived effectiveness of education/support groups to Behavioral Family Systems Therapy in the treatment of parent/adolescent conflicts. Behavioral Family Systems Therapy was rated significantly more positively by parents and adolescents. The effectiveness of education/support groups in decreasing repeat adolescent pregnancies has also been studied.12 The researchers found that the pregnancy rates for the young mothers who attended the support groups were no less than were those for mothers who received no educational/social support.
Telfair and Gardner13 studied the impact of support groups on the psychological well-being of adolescents with sickle cell disease, and their results were more positive. Psychological well-being was positively correlated with group satisfaction. The authors concluded that mental health professionals can enhance their effectiveness by understanding the role support groups play in the overall well-being of adolescents with sickle cell disease.
In general, peer support is believed to affect physical and mental health through its influence on emotions, cognitions, and behaviors.14 Membership provides patients reduction in isolation, normalization of their stressful experience, a sense of belonging, and validation of needs and feelings. The special advantages of support groups for adolescents appear rooted in the previously mentioned developmental tasks they are facing. Peer support groups offer opportunities for the development of peer attachments and empathy with others. The group provides a safe environment for adolescents to give and receive peer feedback concerning identity issues, life goals, and relationships with others.
Use professional facilitators trained in psychological counseling and group process.
Strive for a homogeneous group. Factors to consider include:a) Age (chronological and developmental)b) Genderc) Cognitive leveld) Level of psychological functioninge) Type of brace being worn
Assess each individual for group appropriateness.
Determine the goal of the group (compliance? improved psychological functioning?) so outcomes can be measured.
Provide a parent group in conjunction with the patient group.
Patient groups should combine aspects of education, emotional support, and socializing.
The brace-wearing patient is referred to the psychology department at Texas Scottish Rite Hospital by his or her orthopedist. Referrals typically are initiated at the request of the family or as a result of observations made by staff that suggest adjustment difficulties. The patient and parent(s) are seen by the psychologist for an intake appointment to assess psychological functioning and develop a plan of treatment. Treatment plans typically include individual and/or group therapy. Individual therapy is recommended when the patient is experiencing significant psychological problems, such as severe depression or anxiety that requires intensive psychological intervention. Group therapy is recommended for less severe adjustment difficulties.
The Brace Support Group at Texas Scottish Rite Hospital is an open-ended group. That is, patients can enter the group at any time, and there is no finite number of meetings. The group meets once a month for an hour and a half. The group currently consists of girls ages 11 to 15 years. Two of the members have attended the group for more than 2 years.
While the girls participate in their group activities, a group focusing on various educational topics specific to scoliosis is available to the parents. Topics for parent groups have included scoliosis genetic research, information on spinal fusions, psychosocial aspects of scoliosis and bracing, touring of the orthotics laboratory, and the history of Texas Scottish Rite Hospital. Parents also use the group time for informal socializing and support.
The Brace Support Group meeting is divided into two phases: the education/support phase, and the social phase (approximately 45 minutes each). During the education/support phase, introductions are made and group rules are discussed if new members are present. Group rules include confidentiality, respect, sharing, and taking turns.
During this phase, members are encouraged to share experiences, stressors, and feelings related to their brace wearing. Common themes include peer difficulties, frustrations with clothing, and physical discomfort. Group members are encouraged to be supportive and encouraging, and to offer ideas for problem solving. Barriers to compliance are also discussed. To encourage compliance, a small reward is given to the group member who, according to parent report, wore her brace the greatest percentage of time prescribed. The girls are provided brace-wear calendars to help document compliance. During the education/support phase, topics such as surgery and stress/anxiety management have also been addressed.During the social phase of the meeting, the girls are free to socialize with one another while participating in a craft or outdoor activity of their choice.
Before joining the group and at 6-month intervals thereafter, group members are administered the Piers Harris Children's Self Concept Scale15 and the Children's Depression Inventory16 to measure outcomes. Future studies on the effectiveness of support groups for this population are clearly needed.