Breast cancer risk assessment: Evaluation of screening tools for genetics referral.

BACKGROUND AND PURPOSE: The United States Preventative Services Task Force (USPSTF) recommends breast cancer risk-screening tools to help primary care providers determine which unaffected patients to refer to genetic specialists. The USPSTF does not recommend one tool above others. The purpose of this study was to compare tool performance in identifying women at risk for breast cancer. METHODS: Pedigrees of 85 women aged 40-74 years with first-degree female relative with breast cancer were evaluated using five tools: Family History Screen-7 (FHS-7), Pedigree Assessment Tool, Manchester Scoring System, Referral Screening Tool, and Ontario Family History Assessment Tool (Ontario-FHAT). Sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV) were calculated to describe each tool's ability to identify women with elevated risk as defined by Claus Model calculations (lifetime risk ≥15%). Receiver operating curves were plotted. Differences between areas under the curve were estimated and compared through logistic regression to assess for differences in tool performance. CONCLUSIONS: Claus calculations identified 14 of 85 women with elevated risk. Two tools, Ontario-FHAT and FHS-7, identified all women with elevated risk (sensitivity 100%). The FHS-7 tool flagged all participants (specificity 0%). The Ontario-FHAT flagged 59 participants as needing referral (specificity 36.2%) and had a NPV of 100%. Area under the curve values were not significantly different between tools (all p values > .05), and thus were not helpful in discriminating between the tools. IMPLICATIONS FOR PRACTICE: The Ontario-FHAT outperformed other tools in sensitivity and NPV; however, low specificity and PPV must be balanced against these findings. Thus, the Ontario-FHAT can help determine which women would benefit from referral to genetics specialists.

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.

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.

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.

Postpartum depression in immigrant Hispanic women: a comparative community sample.

PURPOSE: To determine whether a high rate of postpartum depression (PPD), previously found in immigrant Hispanic women at a community clinic, would also be found in a community sample. DATA SOURCES: Sixty women from local community settings were given the PPDS-S instrument and the General Acculturation Index to screen for PPD symptoms. Data were then compared with previously published community clinic data. CONCLUSION: Sixty percent of the immigrant Hispanic women showed significant PPD. The only statistically significant positive predictive factor for increased PPD symptoms was having a previous history of depression. In addition, 54% had an elevated symptom content profile score for suicidal thinking. IMPLICATIONS FOR PRACTICE: Health practitioners should be aware of a potentially high rate of PPD in this population, especially in light of previously studied increased rates of suicide attempts in Latinas. If a prior history of depression is predictive of PPD, it is possible that many of the mothers in our sample suffered from depression prior to the postpartum period, but were not appropriately diagnosed or treated. Recommendations for outreach and further research are discussed. In particular, further research regarding the prenatal prevalence of depression in immigrant Hispanic women is recommended in order to further understand the high incidence of PPD.

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.

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.

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.

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.

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.

Experiences of mistreatment among women with cerebral palsy.

Abuse and mistreatment of women with disabilities is a complex problem that affects their health and well-being. Previous studies have focused on heterogeneous groups of women with disabilities, with only small numbers of women with cerebral palsy included, but different disabilities may play specific roles in relation to abuse. Exploring mistreatment of women with cerebral palsy is important in determining the relationship between mistreatment and a specific disability. The aim of this article was to describe experiences and meanings of mistreatment among women with cerebral palsy. The feminist biographical method was used to provide an in-depth exploration of women's storied lives, uncover the meaning of women's lives from their own perspective, and provide understanding of women whose stories are seldom told. A sample of eight participants participated in two in-depth, audio-recorded interviews. Two major themes and five subthemes emerged. The meaning of mistreatment included participants' definition of mistreatment and their explanation for mistreatment. Outcomes of mistreatment were divided into emotional, social, and physical outcomes. Health care providers need to understand the meaning and outcomes of mistreatment in their patients' lives to begin to address mistreatment, listen to patients, advocate when needed, and provide appropriate health care.

Dutch women's perceptions of childbirth in the Netherlands.

PURPOSE: To explore the lived experience of childbirth in Dutch women who had given birth at home in the Netherlands. METHODS: Qualitative study using audiotaped interviews with 14 women. RESULTS: Themes included the advantages of giving birth in the home, where the women felt more in control of their environment; the difficulty and normalcy of the pain associated with giving birth; the feelings of fulfillment and empowerment that come with childbirth and motherhood; and the importance of the supportive role of the midwife-caregiver. NURSING IMPLICATIONS: Women in a culture different from that of the United States who gave birth at home felt fulfilled and empowered by the experience. These results can help U.S. nurses more fully understand the meaning of childbirth in a different culture and may help identify possible improvements in the design of care for women and newborns in the United States.

Social support needs of families adopting special needs children.

A grounded theory begins to explain parental practices in seeking social support. Interviews with 20 parents who had adopted children with special needs and 5 health care providers indicated that parents lacked awareness of available resources; preferred informal support systems; sought help only when "failing" to solve problems; and perceived that health care providers lacked knowledge of adoption issues, family dynamics, and common health issues. Parents preferred informal to formal supports, and felt upset when formal supports were judged ineffective or non-existent.