Sheila Judge Santacroce

Uncertainty, Anxiety, and Symptoms of Posttraumatic Stress in Parents of Children Recently Diagnosed with Cancer:

The purpose of the study was to describe relationships between uncertainty, anxiety, and symptoms of posttraumatic stress (PTS) in parents of children recently diagnosed with cancer. The study was guided by the Uncertainty in illness Theory. The setting was a childrens hospital. Participants were 15 parents of 12 children recently diagnosed with cancer. Anxiety was measured by the State-Trait Anxiety Inventory. Uncertainty was measured by the Parent Perception of Uncertainty Scale. Symptoms of PTS were measured by the Reaction Index. Total scale scores were calculated and psychometrics estimated. Differences in uncertainty, anxiety, and symptoms of PTS by parent race were assessed using analysis of variance. The correlation matrix was estimated to assess relationships between variables. The level of uncertainty was lower than expected, but was significantly higher for black parents (p < .001). The level of anxiety was comparable to that for hospitalized persons with anxiety disorders. The level of symptoms of PTS was higher than reported for parents of childhood cancer survivors. The relationship between anxiety and symptoms of PTS was significant (r = .56, p < .02). Pediatric oncology nurses should offer parents interventions to relieve high levels of anxiety and symptoms of PTS; some parents could also benefit from interventions that target uncertainty.

Fathers’ contributions to the management of their child’s long-term medical condition: a narrative review of the literature

Context  Fathers’ contributions to the management of long‐term childhood medical conditions are under‐represented in the literature; therefore, the full extent of their involvement is poorly understood by practitioners and researchers, so strategies for promoting their involvement have not yet been fully considered.

Uncertainty, posttraumatic stress, and health behavior in young adult childhood cancer survivors.

Background: Young adult survivors of childhood cancer are at risk for medical late effects, some of which can be managed through health promotion behaviors. However, chronic uncertainty about the future can lead to the development of posttraumatic stress symptoms (PTSS) that can interfere with health promotion behaviors. Objectives: To test a mediating model for the relationships among uncertainty, PTSS, and health promotion behaviors in young adult survivors of childhood cancer. Methods: The design was cross-sectional correlational. A convenience sample was used, and the data were collected using a mailed survey. Study measures included the Mishel Uncertainty in Illness Scale-Community Form, the Posttraumatic Stress Disorder Index, and the Health Promoting Lifestyle Profile II. Results: Forty-six (51.1%) of the eligible survivors responded to the invitation to participate in the study. The analysis was based on data from 45 survivors. The results show that the relationship between PTSS and health promotion behaviors was mediated by uncertainty. Discussion: Uncertainty is a suitable target for theory-based nursing interventions used to boost health promotion behaviors in young adult survivors of childhood cancer.

Feasibility and Preliminary Outcomes From a Pilot Study of Coping Skills Training for Adolescent—Young Adult Survivors of Childhood Cancer and Their Parents

Uncertainty is a central feature of long-term childhood cancer survivorship during which time it principally has to do with late effects. Therefore, the purposes of this article are (a) to assess feasibility of a randomized clinical trial of a telephone-delivered coping skills training (CST) intervention in terms of recruitment, retention, and timeline, as well as the performance of the study measures; and (b) to demonstrate trends in change on outcomes within the context of a small pilot study. The results of this pilot study suggest that HEROS PLUS CST has clinical relevance and that in-person long-term follow-up plus telephone-delivered psychosocial care is a practical way to deliver integrated care to adolescent—young adult childhood cancer survivors and their parents.

Involving fathers in research

Scientific Inquiry provides a forum to facilitate the ongoing process of questioning and evaluating practice, presents informed practice based on available data, and innovates new practices through research and experimental learning.

Cardiovascular Late Effects

This integrative literature review focuses on (1) the spectrum of cardiovascular late effects; (2) the factors that can influence the development of cardiovascular late effects; and (3) the role of the pediatric oncology nurse in minimizing the risks of cardiovascular late effects and associated disabilities in childhood cancer survivorship. The results showed that survivors who have been treated with radiation therapy, especially when the field includes the heart or the hypothalamic-pituitary axis (HPA), and specific chemotherapies are at increased risk for developing particular cardiovascular risk factors and/or cardiovascular disease. Younger age at diagnosis, longer time since treatment, and family history of early heart disease can further heighten the risks. The role of pediatric oncology nurses in the promotion of cardiovascular health for children with cancer across the illness trajectory is discussed.

Bone mineral density decrements and children diagnosed with cancer.

This integrative literature review is focused on (1) the prevalence of bone mineral density (BMD) decrements in children treated for acute lymphoblastic leukemia (ALL), and when these decrements are observed; (2) the risk factors associated with the development of decreased BMD and resultant complications in children treated for ALL; (3) the role, if any, that corticosteroids play in decreasing BMD in children treated for ALL; (4) interventions that can potentially manage bone loss in people treated for ALL during childhood or adolescence. The results showed that people who have been diagnosed with ALL can have decrements in BMD. The etiology of BMD decrements can be attributed to multiple factors including genetic endowment, lifestyle behaviors, the leukemia disease process, and treatment exposures especially to corticosteroids and cranial radiotherapy. Male gender, age greater than 10 years, and physical inactivity are associated with BMD decrements in ALL survivors. The role of pediatric oncology nurses in the management of bone disease in children with cancer across the illness trajectory is discussed.

Secondary Analysis of Qualitative Data: A Means of Collaboration in HIV-Related Research

Although the need for research pertaining to the care of HIV-seropositive women and children is considerable, obstacles to accomplishing this work are abundant. Notable among these obstacles are difficulties in gaining access to clinical populations and enrolling a large enough sample to permit meaningful analysis (Demi & Warren, 1995; Regan-Kubinski & ShartsHopko, 1997; Sherwen & Tross, 1995). ReganKubinski and Sharts-Hopko (1997) suggested that collaboration between clinicians and academic researchers is essential to conducting high-quality HIV-related research. This article will discuss one means of collaboration in research concerning women and children with HIV infection: secondary analysis of qualitative data. Examples from a study that entailed secondary analysis of qualitative data will be used to illustrate how such a collaboration was formed and some potential methodological challenges that were taken into account prior to beginning the secondary analysis. Issues of particular significance in HIVrelated research will also be presented.

Designing a web-application to support home-based care of childhood CKD stages 3-5: Qualitative study of family and professional preferences

BackgroundThere is a lack of online, evidence-based information and resources to support home-based care of childhood CKD stages 3-5.MethodsQualitative interviews were undertaken with parents, patients and professionals to explore their views on content of the proposed online parent information and support (OPIS) web-application. Data were analysed using Framework Analysis, guided by the concept of Self-efficacy.Results32 parents, 26 patients and 12 professionals were interviewed. All groups wanted an application that explains, demonstrates, and enables parental clinical care-giving, with condition-specific, continously available, reliable, accessible material and a closed communication system to enable contact between families living with CKD. Professionals advocated a regularly updated application to empower parents to make informed health-care decisions. To address these requirements, key web-application components were defined as: (i) Clinical care-giving support (information on treatment regimens, video-learning tools, condition-specific cartoons/puzzles, and a question and answer area) and (ii) Psychosocial support for care-giving (social-networking, case studies, managing stress, and enhancing families’ health-care experiences).ConclusionsDeveloping a web-application that meets parents’ information and support needs will maximise its utility, thereby augmenting parents’ self-efficacy for CKD caregiving, and optimising outcomes. Self-efficacy theory provides a schema for how parents’ self-efficacy beliefs about management of their child’s CKD could potentially be promoted by OPIS.

An Interactive Health Communication Application for Supporting Parents Managing Childhood Long-Term Conditions: Outcomes of a Randomized Controlled Feasibility Trial

Background Families living with chronic or long-term conditions such as chronic kidney disease (CKD), stages 3-5, face multiple challenges and respond to these challenges in various ways. Some families adapt well while others struggle, and family response to a condition is closely related to outcome. With families and professionals, we developed a novel condition-specific interactive health communication app to improve parents’ management ability—the online parent information and support (OPIS) program. OPIS consists of a comprehensive mix of clinical caregiving and psychosocial information and support. Objective The purpose of this study was to (1) assess feasibility of a future full-scale randomized controlled trial (RCT) of OPIS in terms of recruitment and retention, data collection procedures, and psychometric performance of the study measures in the target population, and (2) investigate trends in change in outcome measures in a small-scale RCT in parents of children with CKD stages 3-5. Methods Parents were recruited from a pediatric nephrology clinic and randomly assigned to one of two treatment groups: usual support for home-based clinical caregiving (control) or usual support plus password-protected access to OPIS for 20 weeks (intervention). Both groups completed study measures at study entry and exit. We assessed feasibility descriptively in terms of recruitment and retention rates overall; assessed recruitment, retention, and uptake of the intervention between groups; and compared family condition management, empowerment to deliver care, and fathers’ involvement between groups. Results We recruited 55 parents of 39 children (42% of eligible families). Of those, about three-quarters of intervention group parents (19/26, 73%) and control group parents (22/29, 76%) were retained through completion of 20-week data collection. The overall retention rate was 41/55 (75%). The 41 parents completing the trial were asked to respond to the same 10 questionnaire scales at both baseline and 20 weeks later; 10 scores were missing at baseline and nine were missing at 20 weeks. Site user statistics provided evidence that all intervention group parents accessed OPIS. Analysis found that intervention group parents showed a greater improvement in perceived competence to manage their child’s condition compared to control group parents: adjusted mean Family Management Measure (FaMM) Condition Management Ability Scale intervention group 44.5 versus control group 41.9, difference 2.6, 95% CI -1.6 to 6.7. Differences between the groups in the FaMM Family Life Difficulty Scale (39.9 vs 36.3, difference 3.7, 95% CI -4.9 to 12.2) appeared to agree with a qualitative observation that OPIS helped parents achieve understanding and maintain awareness of the impact of their child’s condition. Conclusions A full-scale RCT of the effectiveness of OPIS is feasible. OPIS has the potential to beneficially affect self-reported outcomes, including parents’ perceived competence to manage home-based clinical care for children with CKD stage 3-5. Our design and methodology can be transferred to the management of other childhood conditions. Trial Registration International Standard Randomized Controlled Trial Number (ISRCTN): 84283190; http://www.controlled-trials.com/ISRCTN84283190 (Archived by WebCite at http://www.webcitation.org/6TuPdrXTF).