Revision of the fear of cancer recurrence cognitive and emotional model by Lee-Jones et al with women with breast cancer.

BACKGROUND: Fear of cancer recurrence (FCR) is among the top unmet concerns reported by breast cancer survivors. Despite the sizable literature on FCR, few theoretical models have been empirically tested. One of the most cited is the FCR model. AIM: This study seeks to understand the nature of women's cognitive and emotional issues from FCR using specific guidance from the model by Lee-Jones and to provide suggestions for modifications to the model based on empirical results from the reported experiences of women living with breast cancer. METHODS AND RESULTS: A qualitative descriptive study using semi-structured interviews was conducted at an urban hospital. Recruited by convenience sampling, 12 breast cancer survivors concerned with FCR and who had recently completed active treatment participated in the study. Seven thematic categories emerged from the women's descriptions of their cognitive and emotional experiences with FCR: (a) FCR is always there; (b) beliefs about risk of recurrence; (c) beliefs about eradication of cancer; (d) preferences not to seek information about recurrence; (e) derailment of normal life; (f) worries related to recurrence; and (g) need for support. Adjustments to the model by Lee-Jones et al1 specifically to women living with breast cancer include the addition of new variables-the fear is always present, a preference not to seek information, and the need for support beyond treatment-and the merging of two variables, anxiety and worry, as participants viewed these concepts as interchangeable and experienced in similar ways. Lastly, participants did not report any remorse related to not opting for more aggressive treatments. CONCLUSION: The refinement of a more comprehensive FCR theoretical model, such as through the modifications derived from this study, provides a deeper understanding of breast cancer survivors' experiences with FCR and can more effectively guide health care professionals to develop appropriately tailored interventions aimed at decreasing FCR levels.

Usability Testing of an Interactive Communication Tool to Help Children Express Their Cancer Symptoms.

OBJECTIVE: Sisom is an interactive computer software program that allows children to rate the severity of their cancer symptoms. The study objectives were to describe the usability of Sisom in terms of ease of use, usefulness, and aesthetics and to offer suggestions for improvement. METHOD: A multisite, descriptive study was conducted to describe the usability of Sisom. A purposive sample of children, ages 6 to 12 years, being treated for cancer was recruited. English- and French-speaking children completed the eight tasks in Sisom recorded using Morae software and provided input via an audiotaped interview. Data were downloaded, transcribed verbatim, and analyzed descriptively. RESULTS: Thirty-four children with varying cancers participated. The majority of children liked Sisom and found Sisom easy to use, found it to be helpful in expressing their symptoms, and were satisfied with the aesthetics. Some children provided suggestions for improvement to optimize Sisom use in Canada. CONCLUSIONS: Children's positive responses and desire to use Sisom again suggest that future research should be directed toward implementing and evaluating its effectiveness in a variety of settings.

Pain Experiences of Children and Adolescents With Osteogenesis Imperfecta: An Integrative Review.

OBJECTIVE: Pain is a commonly experienced symptom for children and adolescents diagnosed with osteogenesis imperfecta (OI). The purpose of this integrative review was to describe the pain experience of children and adolescents with OI as well as critically appraise the content and methods of studies assessing OI pain. METHODS: Five electronic bibliographic databases were searched. Published quantitative, qualitative, and/or mixed-method studies assessing pain in children and adolescents with OI were included and appraised. Constant comparison of the extracted data was used to synthesize themes. RESULTS: A total of 783 titles were identified, and 19 studies that met the inclusion criteria were included in this review. Study appraisal scores ranged from 25.0% to 83.3% using the Quality Assessment Tool. The majority of studies included assessed pain as a secondary outcome (63%) and less than half used moderately established or well-established tools (42%). Two themes were uncovered: "Pain is Present and Problematic" and "Issues with Pain Assessment." Key findings under each theme include: (1) the negative impacts of pain and the substandard use of pain management strategies; and (2) the lack of multidimensional and consistent pain assessments, as well as difficulties in assessing pain in younger children. DISCUSSION: Research on OI has focused very little on pain experience in children and adolescents, and there is no standard method of assessing pain. To better describe the pain experience of these patients, future research should focus on better characterizing OI pain with the use of age-appropriate valid, reliable, and multidimensional pain assessment tools.

Linguistic Validation of an Interactive Communication Tool to Help French-Speaking Children Express Their Cancer Symptoms.

Sisom is an interactive tool designed to help children communicate their cancer symptoms. Important design issues relevant to other cancer populations remain unexplored. This single-site, descriptive, qualitative study was conducted to linguistically validate Sisom with a group of French-speaking children with cancer, their parents, and health care professionals. The linguistic validation process included 6 steps: (1) forward translation, (2) backward translation, (3) patient testing, (4) production of a Sisom French version, (5) patient testing this version, and (6) production of the final Sisom French prototype. Five health care professionals and 10 children and their parents participated in the study. Health care professionals oversaw the translation process providing clinically meaningful suggestions. Two rounds of patient testing, which included parental participation, resulted in the following themes: (1) comprehension, (2) suggestions for improving the translations, (3) usability, (4) parental engagement, and (5) overall impression. Overall, Sisom was well received by participants who were forthcoming with input and suggestions for improving the French translations. Our proposed methodology may be replicated for the linguistic validation of other e-health tools.