Uplifts, Respite, Stress, and Marital Quality for Parents Raising Children With Down Syndrome or Autism.

Direct, indirect, and partner effects estimated among uplifts, respite care, stress, and marital quality across mothers and fathers of children with autism spectrum disorder (n = 102) and Down syndrome (n = 111) were examined in this cross-sectional study. Parents of children with ASD who reported more uplifts and less stress individually reported better marital quality; these wives reported better marital quality as their husbands reported more uplifts and less stress. Wives with children with DS who reported more uplifts, individually along with their husbands reported less stress and better marital quality. Respite was directly associated with marital quality for parents of children with ASD and indirectly associated with marital quality for parents of children with DS with reduced individual stress. Implications are discussed.

Support Group Value and Design for Parents of Children with Severe or Profound Intellectual and Developmental Disabilities.

The purpose of this study was to interview parents of children with severe or profound intellectual and developmental disabilities to determine the perceived value of support groups and identify recommendations for support group design based on their experiences and feedback. Despite varied experiences with support groups, most parents indicated the value of support groups is in providing a place where parents can feel understood and both share and gather information. Parents recommended support groups be targeted for parents of children with similar disabilities and needs, have flexible structures and qualified leaders, and offer a wide variety of content in various formats. Given parental recommendations for support group design varied, summary recommendations addressing a wide range of preferences are provided.

Reasons for Open and Closed Attitudes Regarding Type 1 Diabetes.

Thirty-one adults with type 1 diabetes participated in this qualitative study to explore reasons why they were willing (had an open attitude) or unwilling (had a closed attitude) to disclose diabetes-related information to others. Participants (61.3% female, mean age 38.48 years, mean duration of diabetes 21.94 years, 100% white) answered open-ended questions about living with type 1 diabetes. Interviews were transcribed verbatim and coded to identify major patterns that emerged in the data. Reasons for open attitudes included support from others, confidence and feeling comfortable, feeling normal despite diabetes, seeking to educate, and feeling that it was not a major concern to share information with others. Reasons for closed attitudes included fear of discrimination, misunderstanding from others, embarrassment and shame, and feeling that it was not a major concern to share information. A higher number of participants reported open attitudes after diagnosis than at initial diagnosis; a lower number of participants reported closed attitudes after diagnosis than at initial diagnosis. Professionals should consider effective forms of type 1 diabetes-related education to reduce diabetes misconceptions and discrimination against diagnosed individuals. This may help individuals feel more open and willing to adhere to and seek assistance with their diabetes-related self-care.

Lessons Learned From a Life With Type 1 Diabetes: Adult Perspectives.

Adults who have lived much of their life with type 1 diabetes have learned lessons that can benefit health care providers (HCPs), families, and young people who live with the condition. This study was undertaken to gain a better understanding of the challenges of growing up and living with type 1 diabetes from adults who have experienced those challenges and to recommend strategies for parents, caregivers, and HCPs who work with children or adolescents with type 1 diabetes. Thirty-five adults with type 1 diabetes participated in this qualitative study consisting of two in-depth interviews with each participant. Six themes emerged: 1) It's not who you are. 2) Don't let it limit you. 3) Get involved in diabetes support groups. 4) It's going to be OK. 5) Teach them; don't scare them. 6) Don't single kids out. Through hindsight and the more mature perspective of adulthood, study participants were able to share valuable insights that could inform the efforts of those who work with or care for younger people with type 1 diabetes.

Respite Care, Stress, Uplifts, and Marital Quality in Parents of Children with Down Syndrome.

Parents of children with disabilities are at risk for high stress and low marital quality; therefore, this study surveyed couples (n = 112) of children with Down syndrome (n = 120), assessing whether respite hours, stress, and uplifts were related to marital quality. Structural equation modeling indicated that respite hours were negatively related to wife/husband stress, which was in turn negatively related to wife/husband marital quality. Also, wife uplifts were positively related to both wife and husband marital quality. Husband uplifts were positively related to husband marital quality. Therefore, it is important that respite care is provided and accessible to parents of children with Down syndrome.

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.

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.

Parental adaptation to out-of-home placement of a child with severe or profound developmental disabilities.

Utilizing grounded theory qualitative research methods, a model was developed for describing parental adaptation after voluntary placement of a child with severe or profound developmental disabilities in out-of-home care. Interviews of parents from 20 families were analyzed. Parents' cognitive appraisals of placement outcomes were classified as either inducing emotional stress (i.e., guilt, sadness, fear and worry, anger and frustration, and uncertainty) or relief. Parental appraisals of responses to placement by children, extended family, and friends were identified as factors affecting the parents' adaptation to placement. The primary coping methods used by parents to decrease emotional stress and increase relief consisted of reappraisals regarding the necessity of placement, involvement in the child's life, psychotherapy, and the passage of time.

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.

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.

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.

Older couples' management of multiple-chronic illnesses: Individual and shared perceptions and coping in Type 2 diabetes and osteoarthritis.

Using data from interviews with 28 older couples in which 1 spouse was diagnosed with diabetes and osteoarthritis, we examined illness perceptions and coping activities as they relate to illness management and relationship resilience. Qualitative analysis of interview transcripts revealed categories of data related to perceptions, coping, and cross category comparisons. Findings suggest that couples experience both negative and positive perceptions of their illnesses, indicating a balance between the reality of their illness challenges and an optimistic outlook of the future. Coping activities included a variety of tasks and were performed by individuals, by both spouses in a shared effort, and by individuals and shared couple efforts. Findings highlight the complexity of individual and shared couple illness perception and couple efforts in managing multiple-chronic illnesses.

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.

Family photographs: expressions of parents raising children with disabilities.

The purpose of this qualitative, descriptive study was to capture the everyday lives of parents raising a child with a disability. Fifteen parental dyads raising a child with Down syndrome, developmental disabilities, visual impairments, or speech disorders used a disposable camera to photograph images important to them. Interviews about these photographs reflected everyday life. Four themes emerged from content analysis of the photos: active activities, quiet activities, activities of daily living, and care of the child with a disability. Six themes emerged when discussing photographs participants would have liked to take but did not. These themes were acceptance, concern for the future, joys, struggles, balance of good and bad times, and normalcy. Findings support the usefulness of photography as a method of obtaining information from parents raising a child with a disability through qualitative means and provide nurses with a beginning understanding of these parents' lives.