Psychiatric Symptomatology and Family Functioning in Children and Adolescents with Spina Bifida

The purpose of this study was to (a) examine the occurrence of psychiatric symptomatology in children and adolescents with spina bifida, (b) investigate the relationship between psychiatric features and aspects of disability, and (c) explore the impact of spina bifida and psychiatric status on family functioning. Fifty-four children and adolescents ages 6 to 18 years (M = 12.94, SD = 3.59) were examined. Parents completed the Child Symptom Inventory (CSI) and the Family Assessment Device (FAD). Using the CSI, a psychiatric diagnostic screen, 43% of the sample obtained one, and 13% obtained two or more screening cutoff scores reflective of psychiatric diagnoses. The two most prevalent diagnostic categories were Attention-Deficit/Hyperactivity Disorder (33%) and Oppositional Defiant Disorder (13%). The sample as a whole exhibited elevated levels of clinical symptoms, with internalizing symptoms more prominent than externalizing symptoms. No differences in diagnostic categories or overall symptomatology were found based on age, gender, ambulation status, or lesion level. Overall symptom counts were positively correlated with scales on the FAD reflecting problematic family functioning (.42–.65). Results suggest that psychiatric symptomatology occurs at a high rate in children and youth with spina bifida. Although ADHD was the modal diagnostic category, the sample as a whole exhibited extensive psychiatric symptoms independent of specific diagnostic categories. Psychiatric symptoms were also associated with increased problematic functioning in families.     

Postural Stability in Children with High Sacral Level Spina Bifida: Deviations from a Control Group

Abstract

Objective: To assess static and dynamic postural stability changes in children with high sacral level spina bifida.

Methods: Thirty-five children with high sacral level spina bifida and 35 age-matched healthy controls were enrolled. Their lower extremity muscle strengths and static and dynamic postural stability parameters were measured with the use of a dynamometer and the NeuroCom Balance Master^® device, respectively. Functional gait and balance were evaluated using the five times sit-to-stand test (5STS) and the 6-minute walk test (6MWT). Spinal, hip, and ankle deformities of the patient group were measured by radiologic evaluation.

Results: In comparison with controls, patients were found to have lower ankle dorsiflexion and plantar-flexion strength, increased 5STS duration, and decreased 6MWT distance while both static and dynamic postural stability parameters were significantly different. Bilateral ankle muscle strengths were found to be negatively correlated with postural stability parameters. The presence of hydrocephalus or meningomyelocele in the patient group was found to have negative effects on static postural stability.

Conclusion: Static and dynamic postural stability is affected even in children with high sacral level spina bifida who are expected to have best condition in this patient population. The ankle muscle strength is the main factor influencing these changes.     

Embodied Knowledge and Making Sense of Prenatal Diagnosis

Open-ended, qualitative interviews with women to whom amniocentesis was offered were analyzed to understand how women made sense of these tests. We found that women, whether tested or not, negotiated with biomedical information. They transformed it through identifiable processes, then wove it with their own instincts and beliefs and with their personal experiences, thereby creating embodied knowledge on which their decisions were based. Women who were and were not tested may have differed from each other when categorized on the basis of a final, binary choice, but they were more alike than unalike in reaching this point. The apparent importance of embodied knowledge suggests the critical role of the listening activities of the genetic counselor and of awareness of the validity and importance of women's complementary ways of knowing and doing in understanding the uses and meanings of prenatal genetic testing.     

To Use or Not to Use: Male Partners' Perspectives on Decision Making About Prenatal Diagnosis

We conducted an exploratory, qualitative pilot study investigating the use of genetic counseling and prenatal genetic technologies between women and their male partners for two referral groups: pregnant women 35 years of age and over (AMA) at the time of delivery and pregnant women with an abnormal maternal serum triple screen (MSAFP3). The convenience sample consisted of 25 semistructured interviews and 50 observations of genetic counseling sessions. Male partners' styles of decision making and the way they viewed prenatal diagnosis decision making were examined. We defined three decision-making styles based on our interpretation of the data: (1) domain, (2) joint-delegated, and (3) saliency. The male partners also seemed to view prenatal diagnosis as either an information decision or an action decision and appeared to take a more active role in decision making when the decision was viewed as an action decision.     

Continuation of Pregnancy Following the Diagnosis of a Fetal Sex Chromosome Abnormality: A Study of Parents' Counseling Needs and Experiences

Parents who decide to continue a pregnancy diagnosed with a sex chromosome abnormality (SCA) experience a variety of emotions as they deal with complex medical and genetic information. To better understand these individuals' psychosocial, educational, and support needs, 26 parents who received prenatal diagnosis of an SCA after 1989 and who had decided to continue their pregnancy were interviewed by telephone. Twenty (77%) reported they initially had a poor understanding of the predicted syndrome. All parents later met with a genetics professional. Twenty-two (92%) parents considered sterility and underdevelopment of secondary sexual characteristics to be the most negative aspects of SCAs. Contact with other parents of children with SCAs and with support organizations were generally viewed as helpful experiences. Insight gained from this study should be useful for genetic counselors and other health care providers involved with patients who have received abnormal prenatal diagnosis results.     

The Decision to Continue a Pregnancy Affected by Down Syndrome: Timing of Decision and Satisfaction with Receiving a Prenatal Diagnosis

In order to provide the best genetic counseling possible for women who learn of a diagnosis of Down syndrome prenatally, we sought to assess the timing of the decision to continue a pregnancy and the satisfaction these women had with learning this information. Fifty-six mothers of children with Down syndrome diagnosed prenatally between 2007 and 2010 completed a survey regarding their experience with decision-making after prenatal diagnosis. Approximately one third (17/56) of participants reported they knew before getting pregnant that they would not terminate for any reason, and almost half of the participants (24/56) reported they did not decide to continue their pregnancy until after the diagnosis. Many participants (82 %; 42/56) stated that learning the diagnosis during pregnancy increased their anxiety. The majority (88 %; 45/56) also reported that if they could do it over again, they would undergo prenatal testing for preparation purposes, despite increased anxiety. Religious and spiritual beliefs as well as feeling attached to the baby were the personal factors that had the greatest impact on most women’s decision-making. Despite increased anxiety caused by learning the diagnosis prenatally, most women favored prenatal diagnosis as it allowed them time to process the information and prepare for the birth of their child.     

Parent Perspectives of Support Received from Physicians and/or Genetic Counselors Following a Decision to Continue a Pregnancy with a Prenatal Diagnosis of Trisomy 13/18

Families that choose to continue a pregnancy with a prenatal diagnosis of Trisomy 13/18 are a minority that present unique challenges for those in charge of their care. This study investigated the extent to which these patients felt supported by their healthcare providers, and any differences in the perceived level of support experienced by those working with a physician versus those working with a genetic counselor. Two online support groups, SOFT and Hope for Trisomy, distributed an online survey to their members. Means, standard deviations and chi-square analysis were calculated to describe their responses. One-hundred fourteen surveys were included in the final analysis. Respondents were more likely to agree that genetic counselors provided unbiased information in a way that they understood, compared to physicians. Review of qualitative responses found that portrayal of Trisomy 13/18 by healthcare providers used directive language when describing the lethality, morbidity and burden of the condition. Language included terms such as “incompatible with life” and comments on burden to other family members. Healthcare providers can assist families that receive a prenatal diagnosis of Trisomy 13 or 18 by providing up-to-date written resources and connecting them with support groups for parents who have received a similar diagnosis. Our study found that involving genetic counselors in the prenatal care of these patients is likely beneficial.     

Hopeful struggling for health: Experiences of participating in computerized cognitive training and aerobic training for persons with stress-related exhaustion disorder

It is important to understand how people with exhaustion disorder (ED) perceive interventions aiming to facilitate cognitive functioning. Therefore, the overall aim of this study was to explore experiences from persons with ED after participating in a 12-week intervention of either computerized cognitive training or aerobic training. Both interventions were performed in addition to a multimodal rehabilitation programme. Thirteen participants, 11 women and 2 men, were interviewed about pros and cons with participating in the training. The interviews were analysed with Qualitative Content Analysis. The analyses resulted in the theme hopeful struggling for health and the categories support, motivation and sensations. It was hard work recovering from ED. Support from others who are in the same situation, family members, and technology and routines for the training were strongly emphasized as beneficial for recovery. Timing, i.e., matching activities to the rehabilitation programme, getting feedback and perceiving joy in the training were important for motivation. Participants in both interventions experienced positive sensations with improved memory performance, everyday life functioning and increased faith in the prospect of recovery. However, it is important to consider various aspects of support and motivation in both computerized cognitive training and aerobic training to enable participants to pursue their participation.     

From Resistance to Buy-In: Experiences of Clinicians in Training Using Feedback-Informed Treatment

In this qualitative research study, the authors use grounded theory analysis to examine the experiences of clinicians in training and use client feedback to inform treatment. Twenty-six marriage and family therapy graduate students in their first or second semester of clinical practicum participated in this study. Participants were trained in eliciting and responding to client feedback at the end of every therapy session. At the end of the semester, participants reflected on their learning experience. Participant experiences reflected a developmental learning process beginning with significant challenges followed by positive clinical changes and positive clinician changes, culminating in overall buy-in regarding the importance of client feedback for nearly all clinicians. The results support the literature that client feedback directly informs the therapeutic process while suggesting important recommendations for training new clinicians in learning to use client feedback.     

Stress and Coping: A Comparison of Self-Report Measures of Functioning in Families of Young Children with Cerebral Palsy or No Medical Diagnosis

We analyzed data from 87 mothers of children ages 15 to 44 months with cerebral palsy (CP) or no diagnosis, who completed the Dyadic Adjustment Scale, Parenting Stress Index, Support Functions Scale, and Inventory of Social Support. Principal components analysis of the 15 subscales from the 5 measures revealed few cross-measure loadings. Mothers of children with CP (severe or mild) reported higher levels of parenting stress than did mothers of controls. However, cluster analysis of self-report measures yielded a 5-cluster solution, with no diagnostic group differences across clusters. That is, there were no overall differences in self-reported family functioning according to presence or severity of the child's disability. The results are discussed in terms of the organization of family systems and their relationship to child diagnosis. Clinical implications for assessing and working with families are noted.