Health Care Professionals’ Views of Sharing Information with Families Who Have a Child with a Genetic Condition

The purpose of this study was to examine health care professionals’ views and strategies for individualizing information sharing in families who have a child with a genetic condition. The sample consisted of 37 health professionals from three clinical sites in the greater metropolitan area of a large Midwestern city. Qualitative content thematic analysis was used to analyze data from the health professionals’ semi-structured interviews. Four themes captured how health care professionals work with families around information management: Sharing Information with Parents, Taking into Account Parental Preferences, Understanding of the Condition, and Helping Parents Inform Others. These findings contribute to understanding the processes that health professionals use in sharing information with parents who have children with a genetic condition, and they provide guidance for clinical practice, professional training, and future research.     

Parents’ Communication with Siblings of Children Affected by an Inherited Genetic Condition

The objective of this study was to explore parents’ communication about risk with siblings of children affected by an inherited genetic condition, and to ascertain what level of support, if any, is required from health professionals. Semi-structured interviews were conducted with affected and unaffected children and their parents. Families were affected by one of six genetic conditions representing different patterns of inheritance and variations in age of onset, life expectancy and impact on families. Interviews were analysed using constructivist grounded theory and informed by models which focused on three different aspects of family communication. Interviews with 33 families showed that siblings’ information and support needs go largely unrecognized by health professionals and sometimes by parents. Some siblings were actively informed about the genetic condition by parents, others were left to find out and assimilate information by themselves. Siblings were given information about the current symptoms and management of the genetic condition but were less likely to know about its hereditary nature and their own potential risk. When siblings were fully informed about the condition and included in family discussion, they had a better understanding of their role within their family, and family relationships were reported to be more harmonious. The information and support needs of siblings can be overlooked. Parents with the responsibility for caring for a child affected by a genetic condition may require support from health professionals to understand and respond to their unaffected children’s need for more information about the genetic condition and its implications for the children’s own future health and reproductive decision-making.     

Patients’ and Parents’ Perceptions of Appearance in Scoliosis Treated with a Brace: A Cross-Sectional Analysis

The perspective of trunk deformity is a matter of special concern for adolescent idiopathic scoliosis (AIS) patients. No research group has ever reported interviewing patients and their parents regarding differences in perception of body appearance in the course of Cheneau brace treatment. We aimed to investigate the level of agreement in the field of concerns and perceptions of spinal appearance in relation to brace- and scoliosis-related data between parents and female patients with AIS, treated with a Cheneau brace, by means of the Spinal Appearance Questionnaire-pl (SAQ-pl). In this cross-sectional study forty-one pairs of parents and female patients with AIS were asked to separately complete the Polish versions of the Spinal Appearance Questionnaire-pl patient form (SAQ-pl patient form) and the SAQ-pl parent form. Age of patients was 13.60 years SD 1.60 (range 10–17). Patients scored 2.70 (SD 0.60) and parents scored 2.70 SD 0.60 in the total score of the SAQ-pl. The study groups do not differ significantly in regards to the SAQ-pl results. The percentage of consistent answers on SAQ-pl items ranges from 34.10 % (item 20) to 78 % (item 8). Height, age and brace-wearing time per day, were significantly related to the differences in the patient-parent General perception of body shape (r _s  = ?0.51, r _s  = ?0.34, r _s  = 0.36, respectively). Parents and female patients with AIS have similar concerns and perceptions of spinal appearance. The discrepancies in General perception of spinal appearance between parents and AIS females decrease with age of patient. Parental emotional support may contribute to minimizing the risk factors of psychological impairment, especially in late adolescents with AIS.     

Parents’ Experiences of Their Child’s Disclosure of Child Sexual Abuse

A child’s disclosure of sexual victimization is a difficult experience for parents and has been associated with traumatization, disbelief, denial, self-blame, and clinical difficulties. To date, most studies on parents’ responses have been quantitative assessments of the psychological impact of disclosure on parents. A paucity of research has qualitatively explored mothers’ experiences of their child’s disclosure of child sexual abuse (CSA) and fathers’ experiences have been even further neglected. The current study seeks to characterize parents’ experiences of their child’s disclosure of CSA and to uncover the process-oriented nature of parental responses. This qualitative study, using a grounded theory approach to analysis, involved interviews with 10 mothers and four fathers whose children (3–18 years) had experienced sexual abuse. Three themes emerged from the analysis. The first theme—making sense of the abuse in retrospect—captured the process through which parents sought to make sense of their child’s disclosure, focusing on why their child had not disclosed the abuse to them earlier, and how they had noticed something was wrong but misattributed their child’s behavior to other factors. The second theme—negotiating parental identity as protector—reflected how parents’ identity as a protector was challenged, their perception of their world had been forever altered, and they now experienced themselves as hypervigilant and overprotective. The final theme—navigating the services—pertained to parents’ struggle in navigating child protection and police services, and feelings of being isolated and alone. These findings highlight the need for empathy and parental support following child disclosure of sexual victimization.     

What Counts as Science? Families’ Perceptions of Science in a Natural History Museum

ABSTRACT

Natural history museums open their doors to millions of family visitors each year and are considered to have a valuable role to play in engaging these families with science. Yet little is known about whether or in what way families perceive such institutions to be connected with science. The current study set out to explore such perceptions via interviews with family visitors to a large natural history museum. Analyses reflected that families’ perceptions of the museum and of their own engagement with science were intertwined with their definitions and impressions of science. For these families, perceptions of the museum as fun, interesting, and educational at times counteracted impressions of it as a science-y institution. Moreover, some families also did not consider natural history to count as science, which further contributed to a reluctance to categorize the museum as science-y. Although such perceptions may challenge how natural history museums would like to portray themselves, they also represent an opportunity to broaden visitors’ definitions and images of science.     

Gendered Views of Ability in Parents’ Perceptions of Their Children’s Academic Competencies

The present study was designed to examine whether parents’ views of their child’s academic competencies are structured by gendered conceptions of abilities. In a longitudinal research design, a group of parents (N = 391) were asked to assess their third-grade child’s competence in mathematics and Finnish and to respond to a set of attitude statements; when the child reached the fifth grade, the parents were asked to reassess his/her competencies. It was found that the influence of the gender stereotype was partly domain-specific: The stereotype concerning Finnish organized the parental competence assessments as early as the child’s third grade and also predicted the assessments made about the child over the next two grades, whereas the stereotype concerning mathematics only predicted the assessments made as late as the fifth grade. In the Finnish competence assessments, the gender stereotype moderated the overall gender-of-the-child effect, whereas in the mathematics competence assessments, the gender-of-the-child effect was evinced only by the parent group that endorsed the gender stereotype. Culture-bound gender expectations and attitudes toward the expectations are significant, then, for parents’ assessments of their child’s competencies as early as the elementary school years.     

Parents’ Positive Interpersonal Coping After a Child’s Death

Despite the challenging context of grieving for the death of a child, evidence shows that it is possible for parents to manage and preserve their relationship. The aim of this study was to examine parents’ perceptions of positive interpersonal coping processes that helped their relationship after the death of their child. Individual semi-structured interviews with 17 bereaved maritally committed parents were conducted. The interview guide included questions covering themes such as parents’ coping together, relationship strengths and mutual support. Data were analyzed through constructivist grounded theory methods. Three main themes were identified: search for meaning (reframing of partners’ different coping processes and the changes/difficulties in the relationship, and development of shared beliefs); communication with the partner (direct and indirect feedback, and mutual learning); and care-in-relation (caring for the partner and the relationship). Dyad-level interventions should aim at promoting mutual empathy, development of shared appraisals, and the identification and consideration of each other’s boundaries.     

Perceptions of Familial Risk in those Seeking a Genetic Risk Assessment for Alzheimer’s Disease

Perceived risk is a complex concept that influences the genetic counseling process and can affect client coping and behavior. Although the association between family history and risk perception is well recognized in the literature, no studies have explored this relationship specifically in those seeking genetic susceptibility testing for a common chronic condition. REVEAL is a randomized trial assessing the impact of APOE disclosure and genetic risk assessment for Alzheimer’s disease (AD). Using baseline REVEAL data, we hypothesized that there would be a significant association between the degree of AD family history and risk perception of AD, and that this relationship would be stronger in those who believed that genetics is a very important AD risk factor. In our sample of 293 participants, we found that a higher self-perceived risk of AD was associated with strength of family history of AD (p < 0.001), belief in genetics as an important AD risk factor (p < 0.001), being female (p < 0.001) and being Caucasian (p = 0.02). These results are the first to demonstrate the association between family history and risk perception in persons volunteering for genetic susceptibility testing for a common complex disease.     

Exploring the Recovery of Non-offending Parents after a Child’s Sexual Abuse Event

A variety of factors influence a child’s recovery from a child sexual abuse (CSA) event including the non-offending parent’s role in the healing process of their child. The purpose of this study was to gain a better understanding of how non-offending parents recuperate from a CSA occurrence. By better understanding non-offending parents’ perspectives related to the healing process, health professionals can provide effective supports, programs, and services. We recruited and conducted in-depth qualitative interviews with 16 non-offending parents to explore their risk factors, protective factors, stressors, coping strategies, and perceptions of healing following their child’s sexual abuse event. We also invited parents to contribute specific ideas to improve programs and services offered to families of sexual abuse served by a child advocacy center located in an urban pediatric hospital. Our findings included five themes: (1) a variety of emotions are present; (2) family context influences recovery; (3) coping is different for everyone; (4) navigating the justice system is frustrating; and (5) healing is a process. The results of our study revealed that the non-offending parents that were managing their child’s sexual abuse event more productively were further along in the healing process (as compared with their counterparts) and had successfully processed their emotions, described less chaos in their family unit, employed positive coping strategies, and had found a way to move forward and accept a “new normal”. The findings of our study can be used to promote recovery and provide better services to non-offending parents following a CSA event.

     

Mothers’ and Adolescents’ Perceptions of Family Environment and Adolescent Social-Emotional Functioning

Research has emphasized the importance of the relationship between family functioning and adolescent behavioral development. The present study examines family environment and social-emotional functioning of primarily minority adolescents, viewed from both adolescents’ and mothers’ perspectives. Participants were a school-based sample of adolescents with and without risk for emotional and behavioral disabilities and their mothers (N = 86 dyads). Results suggested an association between the mothers’ views of their adolescent children’s problem behaviors and the adolescents’ self-ratings of risk-taking behaviors across 5 years. Overall, mothers of the at risk youth receiving special education services reported higher ratings of youth problem behaviors, but results also indicated that mothers of the at risk adolescent boys not receiving special education services perceived greater depressive symptoms in their children and more family conflict in their homes. Mothers of youth at risk but not receiving special education services experienced higher levels of stress associated with being a parent than mothers of the not-at-risk adolescents. The parent measures of adolescent behavior and depressive symptoms, family conflict, and parental stress were not predictive of the social-emotional functioning of these adolescents in the multilevel models. Implications of these findings for early identification and family focused intervention programs are discussed.     

Parents’ Perceptions of Autism Spectrum Disorder Etiology and Recurrence Risk and Effects of their Perceptions on Family Planning: Recommendations for Genetic Counselors

Knowledge about the etiology of Autism Spectrum Disorders (ASDs) is increasing, but causes remain elusive for most cases. Genetic counselors are positioned to help families that have children with ASDs despite uncertainty regarding etiology. To determine how genetic counselors might best provide services, an anonymous survey was conducted with 255 parents whose children were diagnosed on the autism spectrum. Questions concerned: 1) their perceptions of ASD cause(s) and 2) recurrence risk, 3) whether perceived risk affected family planning decisions, 4) whether parents had received genetic services, and 5) how genetic counselors might assist families. The most prevalent perceived cause was genetic influences (72.6%). Most parents’ recurrence risk perceptions were inaccurately high and significantly affected family planning. Only 10% had seen a genetic professional related to an ASD. Parents provided several suggestions for genetic counselor best practices. Findings indicate the importance of genetic counselor awareness of parent perceptions in order to best help families who have children with ASDs.     

Communication of Genetic Risk Information to Daughters in Families with Fragile X Syndrome: The Parent’s Perspective

Parental approaches to communicating information about genetic disorders to their children may be an important determinant in how the children manage stress as well as their adjustment and adaptation to that information. We explored communication patterns through structured interviews with 46 parents of daughters who learned about their genetic risk status as minors. Three different levels of knowledge about fragile X syndrome were explored: 1) informing that it has been diagnosed in the family and is an inherited disorder, 2) informing about the possibility of a daughter being a carrier, and 3) if testing had been done, informing the daughter of her actual carrier status. Additionally, parental perceptions of their daughter’s understanding of the information were explored along with frequency of discussions. We found that communication about genetic risk was initiated by the parents. Five disclosure patterns were identified with variations in style, content, and frequency of communication related to the information that was being disclosed. Aspects of resilient communication were present for all levels of disclosure; however, as the information became more personally relevant for the daughter such as disclosure about the possibility of “being a carrier” for fragile X syndrome and there was uncertainty regarding potential outcomes, the conversations included fewer resilient characteristics. Uncertainty about what and how to present information may negatively affect a parent’s ability to include elements of resilient communication when disclosing genetic risk information.     

Foster Parents’ Perceptions of Factors Needed for Successful Foster Placements

The purpose of the study was to describe the needs of foster parents for placement success. Sixty-three foster parents from a central Canadian province were asked the following question: “What do you need for a successful foster placement”? Foster parents grouped together all responses, which were analyzed using multidimensional scaling and cluster analysis procedures. Foster parents indicated that they needed the right personality and skills, information about the foster child, a good relationship with the fostering agency, individualized services, community support, linkages to other foster families, supportive immediate and extended families, as well as self-care skills. There were some differences between the existing literature and the needs identified by study participants. Differences included the need for information about policies and procedures, their treatment by professionals, and the need for formal foster parent organizations.     

Foster Parents’ Knowledge of Child Trauma: An Exploratory Study

To promote trauma-informed professional supports and services to maltreated youth, it is imperative that researchers explore foster parents’ knowledge of child trauma. However, there is a dearth in the literature related to this topic. This exploratory study utilizes a convenience sample (N = 219) of foster parents in one southeastern state. Variables of interest include actual and perceived knowledge about child trauma. After a terse review of background literature, this paper will explicate key results, discuss these findings, and identify salient practice and policy implications derived from this study. The paper will conclude by delineating apposite areas for future research.     

Impact of a Father Figure’s Presence in the Household on Children’s Psychiatric Diagnoses and Functioning in Families at High Risk for Depression

The consequences of living in single-parent households on children’s wellbeing are well documented, but less is known about the impact of living in single-mother households among children with high familial risk for depression. Utilizing data from an ongoing three-generation study of high-risk families, this preliminary study examined a sample of 161 grandchildren of probands diagnosed with major depressive disorder, comparing those in single-parent households to those in dual-parent households with household status defined as the full-time presence of a resident male in the home. High-risk children were compared across households in terms of psychiatric diagnoses (measured by Schedule for Affective Disorders and Schizophrenia for School-Age Children; K-SADS-PL) and global functioning (assessed by Global Assessment Scale, child version; C-GAS). Results indicated that high-risk children in single-parent households had 4.7 times greater odds for developing a mood disorder and had significantly lower mean C-GAS scores (p = 0.01) compared to those in dual-parent households. Differences remained significant when controlling for household income, child’s age, and either parent’s depression status. There were no significant differences between high-risk children across households when household status was instead defined as legal marital status. This study has several limitations: sample size was small, probands were recruited from a clinical population, and participants had not passed completely through the period of risk for adult psychiatric disorders. These findings point towards the importance of identifying and closely monitoring children at risk for depression, particularly if they reside in households without a resident father figure.     

Parents’ Grief in the Context of Adult Child Mental Illness: A Qualitative Review

Research indicates that parents and other family members often grieve their child or relative’s mental illness. This grief appears resultant from a profound sense of loss, which has been described as complicated and nonfinite (e.g., Atkinson in Am J Psychiatry 151(8):1137–1139, 1994; Davis and Schultz in Soc Sci Med 46(3):369–379, 1998; Jones in Br J Soc Work 34:961–979, 2004; MacGregor in Soc Work 39(2):160–166, 1994; Osborne and Coyle in Couns Psychol Q 15(4):307–323, 2002; Ozgul in Aust N Z J Fam Ther 25(4):183–187, 2004; Tuck et al. in Arch Psychiatric Nurs 11(3):118–125, 1997). This paper reviews existent research in this emerging field, with a focus on parents’ grief experience in relation to their adult child’s mental disorder. Studies that explore parents’ and family members’ grief, using both qualitative and quantitative methodologies, are considered. Research evidence for the association between parents’ and family members’ grief and other outcomes are discussed. Findings concerning the prediction of grief in parents and family members who have a child or relative with a mental disorder will be reviewed. Finally, this paper considers methodological and theoretical issues associated with existent research and presents options for further study.