Oncology team perspectives on distress screening: a multisite study of a well-established use of patient-reported outcomes for clinical assessment.

PURPOSE: Cancer care team attitudes towards distress screening are key to its success and sustainability. Previous qualitative research has interviewed staff mostly around the startup phase. We evaluate oncology teams' perspectives on psychosocial distress screening, including perceived strengths and challenges, in settings where it has been operational for years. METHODS: We conducted, transcribed, and analyzed semi-structured interviews with 71 cancer care team members (e.g., MDs, RNs, MSWs) at 18 Commission on Cancer-accredited cancer programs including those serving underrepresented populations. RESULTS: Strengths of distress screening identified by participants included identifying patient needs and testing provider assumptions. Staff indicated it improved patient-provider communication and other aspects of care. Challenges to distress screening included patient barriers (e.g., respondent burden) and lack of electronic system interoperability. Participants expressed the strengths of distress screening (n = 291) more than challenges (n = 86). Suggested improvements included use of technology to collect data, report results, and make referrals; complete screenings prior to appointments; longitudinal assessment; additional staff training; and improve resources to address patient needs. CONCLUSION: Cancer care team members' perspectives on well-established distress screening programs largely replicate findings of previous studies focusing on the startup phase, but there are important differences: team members expressed more strengths than challenges, suggesting a positive attitude. While our sample described many challenges described previously, they did not indicate challenges with scoring and interpreting the distress screening questionnaire. The differences in attitudes expressed in response to mature versus startup implementations provide important insights to inform efforts to sustain and optimize distress screening.

Research Participants' Perspectives on Using an Electronic Portal for Engagement and Data Collection: Focus Group Results From a Large Epidemiologic Cohort.

BACKGROUND: Epidemiologic cohort studies have begun to leverage electronic research participant portals to facilitate data collection, integrate wearable technologies, lower costs, and engage participants. However, little is known about the acceptability of portal use by research participants. OBJECTIVE: The aim of this study is to conduct focus groups among a sample of Cancer Prevention Study-3 (CPS-3) participants to better understand their preferences and concerns about research portals. METHODS: CPS-3 participants were stratified based on sex, race and ethnicity, age, and cancer status, and randomly invited to participate. Focus groups used an exploratory case design with semistructured guides to prompt discussion. Using a constant comparison technique, transcripts were assigned codes to identify themes. RESULTS: Participants (31/59, 52% women; 52/59, 88% White/non-Latinx) were favorably disposed toward using a research participant portal to take surveys, communicate with the study staff, and upload data. Most participants indicated that a portal would be beneficial and convenient but expressed concerns over data safety. Participants stressed the importance of an easy-to-use and trustworthy portal that is compatible with mobile devices. CONCLUSIONS: In addition to being beneficial to researchers, portals may also benefit participants as long as the portals are secure and simple. Participants believe that portals can provide convenient ways to report data and remain connected to the study.

Mothers' reflections about infant irritability and postpartum tobacco use.

BACKGROUND: Recent research has shown that most women who stop or substantially reduce cigarette smoking during pregnancy return to previous levels of tobacco use soon after delivery. The determinants of postpartum tobacco use have not been adequately identified. To address this gap, the present study examined one potential contributor to postpartum smoking, namely, unexplained infant crying and fussiness. The purpose of this study was to describe mothers' reflections about perceived infant irritability and postpartum tobacco use. METHODS: A qualitative descriptive approach was applied to the responses of low-income women who participated in a mixed methods study of smoking relapse among mothers of infants. The subset of mothers for the present study (n = 86) was composed of women who intended to be nonsmokers after delivery. Thematic content analysis was conducted of the texts from their interviews. RESULTS: Four major themes were identified with respect to perceptions of infant irritability and postpartum tobacco use: not knowing what to do, seeking renewal, seeking relief, and evaluating self. CONCLUSIONS: The reflections of the study participants suggest that the challenges of handling infant irritability often trigger thoughts of smoking or smoking behavior. Health practitioners may strengthen cessation interventions by using strategies to help mothers cope with this experience, which is unique to the first few months after delivery.

Self-care operations and nursing interventions for children with cancer and their parents.

As individuals assume more responsibility for their healthcare, nurses need to explore methods to support families' self-care practices. The purpose of this qualitative study was to: (a) determine what self-care and dependent-care operations children and parents perform to address self-care requisites, and (b) explore nursing interventions to promote operations. Orem's theory of self-care, theory of self-care deficit, and theory of nursing system were employed. Twenty-seven participants were interviewed about their cancer experiences. Results were that children and parents performed estimative, transitional, and productive operations to meet self-care requisites. Various nursing interventions that promoted these operations were identified. Recommendations were made for further interventions to support families.

Parents' reactions to conflict with health care providers.

The purpose of this phenomenological study was to examine parents' reactions to conflict with health care providers and the outcomes of the conflicts. This study builds on previous research that confirmed the occurrence and sources of conflict among these informants. Seventeen parents whose children had a diagnosis of cancer were interviewed in this study. A priori coding was used to identify the specific strategies for dealing with conflict proposed by Rubin and associates. Ginsburg's approach to narrative analysis was used to examine parent's stories. Findings were that parents used the strategies of problem solving, yielding, withdrawing, inaction, and contending identified by Rubin and associates in reaction to conflict with health care providers. Following episodes of contending, many parents in the study reframed the conflict and experienced transformations or turning points, resolving to become more effective advocates for their children. A few of these advocates proceeded to become community activist.

Children with cancer and their parents: self-care and dependent-care practices.

In this qualitative study the self-care practices of children with cancer and the dependent-care practices of their parents were examined. These practices were organized according to self-care requisites presented in Orem's theory of self-care. The intent of this examination was to determine the competency of participants, identify where self-care deficits occurred, and decide what nursing interventions were needed. A purposive sample of 9 children and 18 parents were interviewed to determine their experiences with cancer. Content analysis was conducted using a deductive approach to code and analyze the data according to Orem's universal, developmental, and health-deviation self-care requisites. NVivo qualitative analysis software was employed for data analysis. The findings of this study revealed that participants were competent agents, performing many practices in the areas of universal and developmental self-care requisites. Participants performed far fewer practices regarding health-deviation self-care requisites and interferences with development, however, indicating a need for supportive-educative nursing interventions in these areas. Future research should examine participants' operations and specific nursing interventions to support those operations.

Childhood cancer camps: their role in adults surviving childhood cancers lives.

This study investigates the role that childhood cancer camps continue to play in the lives of adults surviving childhood cancers (ASCCs). Specifically, the purpose of this study is to understand the roles these camps play in enhancing ASCCs' psychosocial and emotional well-being and access to information. Twenty-three ASCCs participated in this study. Illness narratives were used to understand ASCCs' camp experiences. Three themes emerged from the data analysis to reflect ASCCs' experiences: (1) normalcy, (2) meaningful camp experiences, and (3) access to information. Results show that in the years following camp participation, childhood cancer camps continue to play an important role in ASCCs' lives, providing them with ongoing social and emotional support and access to resources.