Sibling Experiences: Living with Young Persons with Autism Spectrum Disorders.

Like other young people, those with autism spectrum disorder (ASD) have an impact on siblings in both positive and negative ways. Research indicates positive attributes include maturity and responsibility; positive self-concept; less quarrelling and competition; admiration for the person with ASD; and satisfactory sibling relationships. Negative attributes include fear of frightening or violent behavior, decreased sibling intimacy, and social and emotional difficulties. However, most research relies on information from parents/teachers, rather than from siblings. Therefore, this qualitative descriptive study explored experiences of 11 brothers and 11 sisters living with a young person with ASD through audiorecorded semi-structured interviews. Analysis revealed the overall theme was contradiction. Participants recognized difficulties (decreased parental attention, extra responsibility, bothersome behaviors, communication difficulties) and positive aspects (became empathetic, loved and appreciated the child, realized the experience was life-changing) of living with a young person with ASD. Younger siblings frequently reflected on childhood experiences, wished they could play together, and mentioned what the young person could do. Adolescent siblings learned life lessons from the experience, talked about life changes when ASD was diagnosed, and seemed introspective and protective toward the young person with ASD. Male siblings often wished they played more often while growing up with the young person, and frequently mentioned the child/adolescent's aggressive behaviors; female siblings focused on relationship and communication difficulties of the young person ASD. Interventions to help siblings provide positive behavioral support, engage in developmentally appropriate play, and communicate reciprocally are warranted. Nurses can help parents understand siblings' perceptions and can encourage parents to support siblings.

Respite Care for Single Mothers of Children with Autism Spectrum Disorders.

Single mothers of children with autism spectrum disorders are rarely studied, yet they may experience unique stressors. Researchers asked 122 single mothers to complete questionnaires concerning respite care, daily hassles/uplifts, depression, and caregiver burden. More than half (59.8%) accessed respite care, which was provided for 1 h per day, often by multiple sources (41%), such as grandparents and community agencies; most were satisfied with this care. Most mothers (77%) were at risk for clinical depression. While uplifts were negatively correlated with depression, hassles and caregiver burden were positively correlated with depression. Respite care was positively related to daily uplifts, and uplifts mediated the relationship between respite care and depression. Recommendations for researchers, policymakers, and school personnel are offered.

Sibling perceptions of living with a young person with Down syndrome or autism spectrum disorder: an integrated review.

PURPOSE: This integrative review synthesized current information from 28 research articles meeting inclusion criteria that examined sibling experiences when living with a young person with Down syndrome or autism spectrum disorder. CONCLUSIONS: Five themes emerged related to sibling experiences: their knowledge of the condition, relationships with others, perceptions of the condition, emotional reactions to the situation, and behavioral/personality outcomes. PRACTICE IMPLICATIONS: Nurses caring for families raising youth with Down syndrome or autism spectrum disorder can enhance sibling development by providing individual interventions reflecting siblings' perceptions of the experience.

Parent experiences raising young people with type 1 diabetes and celiac disease.

Authors of this qualitative descriptive study interviewed 30 parents concerning their experiences raising a child or adolescent with type 1 diabetes (T1D) and celiac disease (CD). Analysis revealed six themes: (a) health complications of T1D, (b) challenges of daily disease management, (c) financial concerns, (d) the young person's emotional/mental health, (e) experiences with healthcare providers, and (f) experiences with people outside the family and at school. Results suggest nurses need to be sensitive to challenges young people living with T1D and CD and their parents face, conduct ongoing assessments, and provide time during interactions to adequately address concerns.

Sibling cooperative and externalizing behaviors in families raising children with disabilities.

BACKGROUND: Raising a child with a disability (CWD) in the home is increasing across the globe. Because of caregiver burden and the complexity of care, there is growing concern for typically developing sibling (TDS) outcomes. OBJECTIVE: The aim of the study was to examine whether caregiver burden, parenting style, and sibling relationships in families raising a CWD are associated with cooperative and externalizing behaviors in TDS. METHODS: This correlational study included 189 families raising both a CWD and a TDS. Multilevel modeling was used to identify which variables were most predictive of TDS outcomes and if there were parent gender effects. RESULTS: Authoritative parenting was positively associated with cooperative behaviors. Authoritarian parenting was positively associated with externalizing behaviors. Multilevel modeling revealed caregiver burden was a significant predictor of sibling behaviors in the first model. When parenting style was added as a predictor, it was also significant. When sibling relationships were added as predictors, they were significant predictors for both cooperative and externalizing TDS behaviors; however, caregiver burden was no longer significant. Authoritarian parenting significantly predicted externalizing behaviors, and authoritative parenting was significantly related to cooperative behaviors. DISCUSSION: In families raising a CWD, positive sibling relationships may help negate the effects of caregiver burden and are more predictive of TDS outcomes than some parenting practices.

Caregiver burden and sibling relationships in families raising children with disabilities and typically developing children.

Using family systems theory as a theoretical framework, we investigated direct and indirect associations between type of disability, caregiver burden, and sibling relationships with structural equation modeling. We recruited 172 families raising typically developing children or a child with a disability. Participants volunteered at meetings and workshops for families of children with disabilities and were also recruited through snowball sampling. Mothers and fathers independently completed self-report questionnaires on caregiver burden and perceptions of the sibling relationship. Mothers experienced higher levels of caregiver burden than fathers. Parents of children with autism reported higher levels of caregiver burden than parents of typically developing children. Mothers of children with Down syndrome and multiple disabilities reported more positive sibling relationships than mothers of typically developing children. Mothers' and fathers' perceptions of caregiver burden were negatively related to their perceptions of the sibling relationship. Caregiver burden mediated the relationship between having a child with autism and positive sibling relationships. Results indicate the benefits of using a systems framework in examining families raising children with disabilities. Future research should focus on interventions for families of children with disabilities that help alleviate parental burden and foster positive sibling relationships.

Individual and family predictors of psychological control in parents raising children with type 1 diabetes.

The purpose of this research is to examine how metabolic control, parents' marital conflict, and parental caregiver burden are related to parents' use of psychological control in families raising a child with Type 1 diabetes (T1D). Differences between mothers and fathers are also considered. In this cross-sectional study, parents of 85 children with T1D independently completed self-report questionnaires; metabolic control levels were obtained through patient medical records. Structural equation modeling showed that better metabolic control is related to lower levels of fathers' caregiver burden, and marital conflict is positively related to both mothers' and fathers' ratings of caregiver burden. Mothers' caregiver burden is positively related to their psychological control (a type of parental behavior that threatens children's autonomous thoughts and feelings) and, similarly, fathers' caregiver burden is positively related to their psychological control. Paths in the model differed by parent gender, but there were no crossover effects. Future research is needed to develop new, effective interventions for children with diabetes and their parents, focusing not only on the child but on multiple family systems.

Identifying challenges of living with type 1 diabetes: child and youth perspectives.

AIMS AND OBJECTIVES: To identify challenges children and youth with type 1 diabetes encounter from their own perspectives. BACKGROUND: Type 1 diabetes requires lifestyle changes involving diet modification, monitoring blood glucose, counting carbohydrates and administering insulin. Learning self-care and developing positive attitudes can improve glucose management and promote long-term benefits. Therefore, understanding challenges of youth living with type 1 diabetes from their own perspective is an important first step in improving diabetes outcomes for this age group. DESIGN: Qualitative descriptive design using focus groups to identify the experiences and challenges of children and youth living with type 1 diabetes. METHODS: Six focus groups were held over a four-month period in 2010; each participant attended one focus group. A total of 16 children and youth with type 1 diabetes participated. The focus group discussions were audio recorded, transcribed verbatim and analysed for common themes according to qualitative methodology. To assure trustworthiness, investigators independently coded interviews and themes were refined and adjusted until consensus was reached. RESULTS: Three themes emerged after analysing transcripts from the focus groups that embody challenges children and youth with type 1 diabetes faced: (1) low blood glucose; (2) self-care activities; and (3) feeling different and/or alone. CONCLUSIONS: Data indicated type 1 diabetes is challenging for this age group. These challenges must be addressed to assist youth in learning to manage their disease and promote healthy outcomes. RELEVANCE TO CLINICAL PRACTICE: It is important for nurses to discuss challenges, understand perspectives of this age group, listen to their concerns, work with them to develop strategies promoting health, minimise complications, reduce or eliminate feeling different or alone and assist parents' efforts to be supportive.

Young people's experiences living with type 1 diabetes.

Young people with type 1 diabetes mellitus face a unique set of challenges: their own and their family's perspectives of the disease and treatment impact on how well they manage metabolic control. Hormonal changes, desire for autonomy and emotional distress can influence self-management. This study aimed to better understand the perspective of young people with diabetes and to find out whether metabolic rate affects how individuals' view the disease and treatment. The findings are used to make suggestions for treatment approaches.

A qualitative study of young people's perspectives of living with type 1 diabetes: do perceptions vary by levels of metabolic control?

AIM: To explore if young people with higher and lower levels of metabolic control of type 1 diabetes have different perceptions about their lives and illness. BACKGROUND: Adolescence through emerging adulthood is a developmental stage made more challenging when the person has type 1 diabetes. Little research has investigated if individuals with high and low levels of metabolic control in this age group perceive their disease differently. DESIGN: Qualitative descriptive. METHODS: In this study, 14 participants, ages 11-22 years were interviewed in 2008 about their perceptions of living with type 1 diabetes. Through a process of induction, major themes were identified. RESULTS/FINDINGS: Participants with high and low metabolic control levels reported similar themes related to reactions of others, knowledge about type 1 diabetes, and believed healthcare providers used authoritarian interactions. However, high metabolic control level participants believed type 1 diabetes would be cured; had negative initial responses to being diagnosed; rarely received parental support in managing their diabetes; and were negligent in self-care activities. Participants with low metabolic control levels did not believe a cure was imminent or have negative responses to being diagnosed; received parental support in managing diabetes; and were diligent in self-care activities. CONCLUSION: Nurses should give information to young people with type 1 diabetes beyond initial diagnosis and help and support this age group learn appropriate ways to manage their disease, develop positive relationships with healthcare professionals, and participate in interactions with others their age successfully managing type 1 diabetes.

Assessment, management, and prevention of childhood temper tantrums.

PURPOSE: To provide an overview of normal and abnormal temper tantrum behavior as well as give recommendations nurse practitioners (NPs) can use in counseling families. DATA SOURCES: Articles were identified from the following databases: CINAHL, HEALTH SOURCE: Nursing/Academic edition, Medline, Social Work Abstracts, Social Science Abstracts, Psych INFO, Psychology and Behavioral Science Collection. Textbook references were also identified using Stat!Ref. CONCLUSIONS: Temper tantrums are one of the most common behavior problems in children. Although most children will have tantrums, with NPs' support and guidance in primary care encounters, most children will not require further intervention. IMPLICATIONS FOR PRACTICE: NPs caring for children will need to identify normal and abnormal tantrum behavior as well as rule out other causes of tantrums in order to help parents handle the tantrum behavior. To obtain CE credit for this activity, go to http://www.aanp.org and click on the CE Center. Locate the listing for this article and complete the post-test. Follow the instructions to print your CE certificate.

Positive parenting of children with developmental disabilities: a meta-analysis.

Although a large body of literature exists supporting the relationship between positive parenting and child outcomes for typically developing children, there are reasons to analyze separately the relevant literature specific to children with developmental disabilities. However, that literature has not been synthesized in any systematic review. This study examined the association between positive parenting attributes and outcomes of young children with developmental disabilities through meta-analytic aggregation of effect sizes across 14 studies including 576 participants. The random effects weighted average effect size was r=.22 (SE=.06, p<.001), indicative of a moderate association between positive parenting attributes and child outcomes. Publication bias did not appear to be a substantial threat to the results. There was a trend for studies with more mature parents to have effect sizes of higher magnitude than studies with young parents. The results provide support for efforts to evaluate and promote effective parenting skills when providing services for young children with disabilities.

Integrating advanced writing content into a scholarly inquiry in nursing course.

Since there are few data examining methods to help students learn to write in a scholarly manner, the purposes of this project were to (1) evaluate students' learning of writing content integrated into a Scholarly Inquiry in Nursing course by examining differences in scores on a writing assessment taken at the beginning and end of the course; and (2) examine student confidence ratings relative to writing to see if it improved during the course. After obtaining IRB approval and informed consent, the CLIPS pre and post assessment mean scores of 82 students in a Scholarly Inquiry in Nursing course were compared using the Wilcoxon signed-rank test. Confidence ratings in formal and informal writing were also obtained from a subsample of 47 students. Mean scores improved in 12 out of 26 assessment categories related to punctuation, correct usage of words, and sentence construction. Student mean confidence ratings increased each month.

Perspectives of adolescent siblings of children with Down syndrome who have multiple health problems.

Authors of this qualitative descriptive study interviewed 21 adolescent siblings of children with Down syndrome (DS) who also had additional health problems rated as requiring extensive care by parents. Analysis revealed positive/negative aspects of the experience; however, participants emphasized the positive rather than negative experiences and focused more on the fact that the child had DS rather than health problems requiring additional care. Most said they would not change anything about their experience and did not believe the child with DS would ever live independently. They did, however, acknowledge their family was affected by the caregiving needs of the child which often required extra vigilance or specific care depending on the health problem. Information gained can help improve understanding of adolescent sibling perceptions about living with a child with DS who also requires additional care because of ongoing health problems so more appropriate and individualized nursing interventions can be provided.

Parental perceptions of sibling relationships in families rearing a child with a chronic condition.

This study examined sibling relationships in families raising children with autism, Down syndrome, orthopedic conditions, and diabetes. Parents from 108 families independently completed the 28-item Schaefer Sibling Inventory of Behavior. Parents rated siblings as very empathetic, fairly often kind and involved, and rarely avoidant. Mothers rated sibling empathy higher than fathers did and older siblings more avoidant than younger siblings. Fathers rated male siblings kinder than female siblings; they also rated siblings of children with Down syndrome or autism more kind and involved than siblings of children with orthopedic conditions or diabetes. Sibling intervention efforts should consider these findings and be individualized according to the need of each child and family.

Mild traumatic brain injury: are ED providers identifying which patients are at risk?

OBJECTIVE: To identify patients with specific ED discharge diagnoses reporting symptoms associated with a mild traumatic brain injury (MTBI), compare frequency/severity of MTBI symptoms by discharge diagnosis, investigate head injury education provided at ED discharge, and learn about changes made by MTBI patients after injury. METHODS: The Post Concussion Symptom Scale, a demographic questionnaire, and open-ended questions about the impact the injury had on patients' lives were completed by 52 ED patients, at least 2 weeks after injury, discharged with concussion/closed head injury, head laceration, motor vehicle crash (MVC), or whiplash/cervical strain diagnoses. RESULTS: Between 1 and 23 MTBI symptoms were reported by 84.6% of the participants. Headache and fatigue were the most common; female patients had almost twice as many symptoms on average as male patients. Of MVC patients, 83.3% reported moderate severity scores for all 4 Post Concussion Symptom Scale categories, and these represented the highest overall severity scores. Concussion/closed head injury diagnosis patients received the most head injury education. The majority of patients were more cautious after injury. CONCLUSION: Most participants reported having MTBI symptoms. Although MVC participants reported the most severe MTBI symptoms, they had the least head injury education. Emergency nurses need to be aware patients may have an MTBI regardless of their presenting symptoms or injury severity.

Religiosity, spirituality, and marital relationships of parents raising a typically developing child or a child with a disability.

In order to discover if differences or relationships exist between religiosity, spirituality, and marital relationships, 111 parents raising a child with a disability (CWD) and 34 parents raising typically developing children independently completed self-report questionnaires assessing religiosity, spirituality, and marital relationships. Parents raising typically developing children scored higher on private and public religiosity and marital satisfaction than parents raising a CWD; mothers scored higher on religiosity variables than fathers. Mothers' ratings of spirituality and family type (disability or typically developing child) predicted their ratings of marital conflict. Higher spirituality and raising typically developing children were associated with higher ratings of marital satisfaction for both mothers and fathers. However, spirituality also moderated the relationship between private/public religiosity and marital satisfaction only for fathers. This information helps improve interventions for families raising CWD and adds to the literature on the interplay of religiosity/spirituality/marital relationship.

Childhood educational experiences of women with cerebral palsy.

The purpose of this study was to examine the childhood experiences of women with cerebral palsy (CP), from the perspectives of these women. Using the feminist biographical method, eight women with CP participated in two in-depth interviews. Participants ranged in age from 22 to 55 years and had moderate to severe athetoid or spastic CP. Four themes emerged: (a) academic experiences, (b) experiences with teachers, (c) experiences with peers, and (d) coping methods, with both positive and negative subthemes for each theme. Participants with positive academic experiences and positive interactions with teachers and peers were able to develop better ways of dealing with the negative experiences they encountered in education and attained higher levels of education. Participants who primarily had poorer educational experiences developed negative coping mechanisms that continued to affect their lives. Findings support ways in which school nurses can support the educational experiences of students with CP.

Metabolic control, self-care behaviors, and parenting in adolescents with type 1 diabetes: a correlational study.

PURPOSE: The purpose of this pilot study was to explore relationships among metabolic control, self-care behaviors, and parenting in adolescents with type 1 diabetes. METHODS: Twenty-nine adolescents (mean age, 14.1 years) and their parents participated. Metabolic control was determined by an average of 4 A1C values taken prior to study enrollment; self-care behaviors were measured with a 12-item self-report questionnaire; parenting style was evaluated using the Parenting Practices Report. RESULTS: The mean for A1C values was 8.5%; the mean for overall self-care behaviors was 4.93 (5 = usually). Participants rated themselves highest on the self-care behaviors of giving insulin shots when indicated and adjusting insulin when eating a lot. They ranked themselves lowest on eating a low-fat diet and testing urine for ketones. Parents tended to be more authoritative in their approaches to parenting than either authoritarian or permissive. A significant relationship was found between authoritative mothering and adolescent self-care behaviors and metabolic control. Regression analyses controlling for age and length of time with diabetes confirmed the significance of these relationships. Authoritative fathering positively correlated with the self-care behaviors of monitoring blood glucose, taking insulin, and not skipping meals. A relationship was also noted between permissive parenting by mothers/fathers and poorer metabolic outcomes. However, the permissive parenting correlations did not remain significant when controlling for age and length of time with diabetes. CONCLUSIONS: Clinicians may help prevent declining participation in self-care behaviors and metabolic control in adolescents with type 1 diabetes by working with parents, particularly mothers, and encouraging authoritative parenting.