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OBJECTIVE: To develop and psychometrically evaluate an adapted version of the Female Self-Advocacy in Cancer Survivorship (FSACS) Scale in men with a history of cancer. METHODS: This psychometric instrument development and validation study used a two-phase approach to first adapt the FSACS Scale items to reflect the experience of men with a history of cancer and then evaluate the psychometric properties of the adapted scale compared to the original FSACS Scale. The study was conducted from December 2018 through April 2022 through cancer clinics, patient registries, and national advocacy organizations. We evaluated scale reliability and validity using reliability coefficients, exploratory and confirmatory factor analyses, and item analyses to determine a final set of scale items. RESULTS: Item responses from N = 171 men with a history of cancer were evaluated to determine scale validity. After removing poor-performing items based on item-level analyses, factor analyses confirmed that a 3-factor structure of both the adapted and original FSACS Scale best fit the scale. The 10 new items did not outperform the original 20-item scale and were therefore excluded from the final scale. The final 20-item scale explained 87.94% of item variance and subscale's Cronbach α varied from 0.65 to 0.86. CONCLUSION: The SACS Scale can be used in research and clinical contexts to assess the propensity of men and women to get their needs, values, and priorities met in the face of a challenge.
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Supervivientes de Cáncer , Neoplasias , Humanos , Masculino , Femenino , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , PsicometríaRESUMEN
INTRODUCTION: Black women experience many barriers to receiving high-quality maternal healthcare. The ability of Black women to self-advocate may mitigate these threats to their health. Limited research describes Black women's self-advocacy during the perinatal period and how self-advocacy related to other relevant concepts. The aim of this study was to describe the relationship between self-advocacy, patient-provider relationships, and mental health outcomes among Black women in the perinatal period. METHODS: This cross-sectional descriptive pilot study recruited Black women who were either in their 3rd trimester of pregnancy or within a year postpartum to complete surveys describing their self-advocacy (Female Self-Advocacy in Cancer Survivorship Scale adapted for perinatal period) and maternal health outcomes (trust and comfort with maternal healthcare providers-Patient-Provider Relationship Scale; abuse and disrespect during childbirth-Mothers of Respect Index; experiences of discrimination-Experiences of Discrimination scale; depression-Edinburgh Postnatal Depression Scale; and postpartum posttraumatic stress-City Birth Trauma Scale). RESULTS: N = 40 participants were recruited between January and September 2022. Participants reported moderate levels of self-advocacy which were associated with trust and comfort with healthcare providers (r = 0.57-0.76, p < 0.001). Feeling respected by healthcare providers was positively associated with two self-advocacy subscales (r = 0.42-0.44, p < 0.01). Depression was inversely related to all self-advocacy subscales (r = -0.47-0.62, p < 0.001). CONCLUSION: Black women's self-advocacy during the perinatal period is associated with trust and comfort with healthcare providers, perceptions of respect from their providers, and perinatal depression. Future research should focus on promoting trusting, respectful relationships between Black women and their maternal health providers.
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PURPOSE: Explore factors influencing pain management among female breast cancer survivors aged 65+ years with moderate to severe pain based on a score of 4 or greater on the 0-10 numeric rating scale. DESIGN: Qualitative descriptive study. METHODS: We interviewed 21 purposefully sampled women aged 65+ years who experienced moderate to severe pain. Researchers coded interview transcripts for factors affecting study participants' pain management experiences. RESULTS: Pain management facilitators included patient-centered interactions with care teams and reliance on psychosocial assets. Challenges included ineffective care team interactions and participants' negative perceptions of opioid analgesia. Other factors included pain attributed to cancer treatment, pain management plan adherence, and psychosocial influencers. CONCLUSIONS: With regard to this sample, patient-centered communication and pain management education help female breast cancer survivors aged 65+ years manage their pain. Mitigation of opioid stigma and undermanaged painful comorbid conditions could further optimize pain management. Further research on the effects of breast cancer treatment, level of adherence to pain management recommendations, and psychosocial influences on pain management is needed. CLINICAL IMPLICATIONS: Providing contact information for care team members during and after clinic hours facilitates open communication, including timely reporting of new and undertreated pain. Collaborating with the patient and care team on a clear pain management plan and establishing parameters for when to notify the care team empower patients to optimize management of their pain. Verifying patients' understanding of prescribed analgesia and management of side effects and providing education as needed may reduce negative perceptions of opioid analgesia.
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BACKGROUND: Nurses diagnosed with cancer face unique challenges when returning to work, yet there is limited understanding of their transition. PURPOSE: To explore nurses' return-to-work experiences post cancer diagnosis and clarify related facilitators and challenges. METHODS: This focus group study employed a content analysis with constant comparative approach and member checking. This study recruited nurses treated for any type of cancer who had experience returning to clinical positions. FINDINGS: Five focus groups with 17 female nurses (mean age=51.8) were performed; 47.1% had breast cancer. Four main themes were identified: (a) motivation, incentives, and the need to return to work; (b) setbacks hindering the return; (c) navigating new work dynamics; and (d) evolving professional role during the return to work. DISCUSSION: This study illustrates personal and professional growth and struggles that attend returning to work as a nurse with cancer. This insight informs strategies to support continuing these nurses' careers.
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BACKGROUND: Cancer clinicians and systems aim to provide patient-centered care, but not all patients have the self-advocacy skills necessary to ensure their care reflects their needs and priorities. This study examines the feasibility, acceptability, and preliminary efficacy of a self-advocacy serious game (an educational video game) intervention in women with advanced breast or gynecologic cancer. METHODS: Women with recently diagnosed (<3 months) metastatic breast or advanced gynecologic cancer were randomized 2:1 to receive a tablet-based serious game (Strong Together) (n = 52) or enhanced care as usual (n = 26). Feasibility was based on recruitment, retention, data completion, and intervention engagement. Acceptability was assessed via a postintervention questionnaire and exit interview. Preliminary efficacy was assessed on the basis of change scores from baseline to 3 and 6 months in self-advocacy (Female Self-Advocacy in Cancer Survivorship Scale) using intention-to-treat analysis. RESULTS: Seventy-eight women (55.1% with breast cancer; 44.9% with gynecologic cancer) were enrolled. Feasibility was demonstrated by satisfactory recruitment (69% approach-to-consent rate; 93% enroll-to-randomize rate), retention (90% and 86% at 3 and 6 months, respectively; 85% data completion), and intervention engagement (84% completed ≥75% of the game). Participants endorsed the intervention's (75%) and trial's (87%) acceptability. Participants in the intervention group experienced significant improvements in self-advocacy at 3 and 6 months compared to participants in the control group. CONCLUSIONS: Strong Together is feasible and acceptable among women with advanced breast or gynecologic cancer. This intervention demonstrates promising evidence of clinical efficacy. A future confirmatory trial is warranted to test the efficacy of the intervention for patient and health system outcomes.
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Neoplasias de la Mama , Neoplasias de los Genitales Femeninos , Humanos , Femenino , Estudios de Factibilidad , Neoplasias de la Mama/terapia , Neoplasias de la Mama/patología , Neoplasias de los Genitales Femeninos/terapia , Resultado del Tratamiento , Encuestas y CuestionariosRESUMEN
PURPOSE: Patients with advanced cancer experience many complicated situations that can make self-advocacy (defined as the ability speak up for yourself in the face of a challenge) difficult. Few self-advocacy interventions exist, and most are atheoretical with minimal patient engagement. The purpose of this study is to describe participant perspectives of a novel, self-advocacy serious game intervention called Strong Together. METHODS: This was a qualitative cross-sectional descriptive study among women receiving cancer care at an academic cancer center within 3 months of an advanced gynecologic or breast cancer diagnosis. Participants randomized to receive the intervention completed one-on-one semi-structured interviews 3-months post Strong Together and had the option to share voice journals about their experiences. Inductive qualitative approaches were used to descriptively analyze transcripts and voice journals. Descriptive content analysis approaches were used to group similar codes together into themes summarizing participants' experiences engaging with the Strong Together intervention. RESULTS: Participants (N = 40) reported that the Strong Together intervention was acceptable, noting that it was realistic and reflective of their personal experiences. Overarching themes included seeing myself in most scenarios and wanting more content; giving me the go ahead to expect more; offering ideas for how to stand up for myself; reinforcing what I am already doing; and reminding me of what I have. Participants suggested adding additional content including diverse characters. CONCLUSION: This study demonstrated that women with advanced cancer were receptive to a self-advocacy skills-building intervention. Future research should explore the mechanisms linking serious games to learning and health outcomes.
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Neoplasias de la Mama , Pacientes , Humanos , Femenino , Estudios TransversalesRESUMEN
BACKGROUND: Self-advocacy skills allow individuals with cancer to overcome challenges related to their health, care, and well-being. Understanding the self-advocacy behaviors and needs of individuals with cancer is critical to addressing the lack of evidence-based self-advocacy interventions. The aims of this study are to describe (1) self-advocacy behaviors and needs of women with advanced cancer and (2) associations between self-advocacy and sociodemographic, cancer, and patient-reported outcomes. METHODS: We analyzed cross-sectional data from a clinical trial among women within 3 months of a metastatic breast or stage III or IV gynecologic cancer diagnosis. Descriptive and correlational statistics and tests of group difference were calculated for measures of self-advocacy (Female Self-Advocacy in Cancer Survivorship Scale), sociodemographic characteristics, quality of life (FACT-G), symptom burden (M.D. Anderson Symptom Inventory), and mood (Hospital Anxiety and Depression Scale). RESULTS: Participants (N = 78) reported self-advocacy behaviors including making decisions based on their priorities, asking questions to their healthcare providers, and comparing their experiences to others' experiences. Self-advocacy needs focused on finding health information and talking with healthcare providers. Self-advocacy behaviors and needs did not differ by participants' sociodemographic characteristics or mood. Higher self-advocacy behaviors were associated with higher quality of life (p ≤ .01) and lower symptom severity (p < .05) with a trend for cancer recurrence (p = .05). CONCLUSIONS: Women with advanced cancer report engaging in self-advocacy behaviors and these are associated with higher quality of life and lower symptom burden. Future research should determine if self-advocacy behaviors and needs change over time and how patient characteristics impact self-advocacy behaviors and needs.
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Supervivientes de Cáncer , Neoplasias , Humanos , Femenino , Calidad de Vida , Estudios Transversales , Toma de DecisionesRESUMEN
Current conceptualizations of patient self-advocacy focus on women with cancer, leaving knowledge of male self-advocacy deficient. The purpose of this study is to describe the key components of self-advocacy among men with cancer. Adult (≥18 years old) men with a history of invasive cancer were recruited from cancer clinics and registries. Trained researchers led individual semi-structured interviews regarding participants' challenges, how they overcame those challenges, and barriers and facilitators to their self-advocacy. All interviews were analyzed using descriptive content analysis methods and synthesized into major themes. These themes were refined after receiving feedback from key stakeholders. Participants (N = 28) reported three major self-advocacy themes: (i) managing through information and planning; (ii) finding the best team and falling in line; and (iii) strategic social connections. These themes are richly described with representative quotations for each theme and subtheme. Based on these findings, existing models of patient self-advocacy should be adjusted to encompass how men self-advocate. Clinicians should consider how gender may impact how and why patients with cancer self-advocate so that they can best support their patients in achieving patient-centered care.
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Neoplasias , Defensa del Paciente , Adolescente , Adulto , Femenino , Humanos , Masculino , Neoplasias/terapia , Investigación CualitativaRESUMEN
PURPOSE: Caregivers of people with cancer represent a large, overburdened, and under-recognized part of the cancer care workforce. Research efforts to address the unmet needs of these caregivers are expanding with studies focused on caregivers' skill sets, physical and psychological health, and integration into healthcare delivery. As this field of research continues to expand, integrating caregivers' input is vital to studies to ensure that research aligns with their experiences. METHODS: This is a focus group study of 15 cancer caregivers conducted during a cancer caregiving workshop at the University of Pittsburgh in February 2020. During the workshop, caregivers reviewed, critiqued, and proposed priorities to support caregivers of adults with cancer. We used a multistage consensus building approach to identify priority areas of research and clinical practice to address caregivers' experiences and needs. We used descriptive content analysis to summarize caregivers' priorities. RESULTS: Caregiver-identified priorities included (1) training and information about cancer and treatment, (2) caregiver integration into the patient's healthcare delivery, (3) assistance with navigating the healthcare system, (4) focus on caregiver health and well-being, and (5) policy reform to address caregiver needs. We identified ways in which these priorities can inform cancer caregiving research and practice. CONCLUSION: These recommendations should be considered by researchers, clinicians, cancer center leadership, and policymakers interested in creating caregiver-focused research protocols, interventions, and support systems.
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Cuidadores/psicología , Atención a la Salud/métodos , Neoplasias/terapia , Participación de los Interesados/psicología , Anciano , Femenino , Humanos , Masculino , Neoplasias/psicologíaRESUMEN
BACKGROUND: Artificial intelligence-driven tools, like ChatGPT, are prevalent sources for online health information. Limited research has explored the congruity between AI-generated content and professional treatment guidelines. This study seeks to compare recommendations for cancer-related symptoms generated from ChatGPT with guidelines from the National Comprehensive Cancer Network (NCCN). INTERVENTION: We extracted treatment recommendations for nine symptoms from NCCN, separated into four full Supportive Care sections and five subsections of the Palliative Care webpage. We entered "How can I reduce my cancer-related [symptom]" into ChatGPT- 3.5 for these same symptoms and extracted its recommendations. A comparative content analysis focused on recommendations for medications, consultations, and non-pharmacological strategies. We compared word count and Flesch-Kincaid Grade Level (FKGL) readability for each NCCN and ChatGPT section. OUTCOMES: The mean percent agreement between NCCN and ChatGPT recommendations was 37.3% (range 16.7%-81.8%). NCCN offered more specific medication recommendations. ChatGPT did recommend medications in the constipation and diarrhea sections that were not recommended by NCCN. Significant differences in word count (P=0.03) and FKGL (P<0.01) were found for NCCN Supportive Care webpages, with ChatGPT having lower word count and reading level. In the NCCN Palliative Care webpage subsections, there was no significant difference in word count (P=0.076), but FKGL was significantly lower with ChatGPT (P<0.01). CONCLUSIONS/LESSONS LEARNED: While ChatGPT provides concise, accessible supportive care advice, discrepancies with guidelines raise concerns for patient-facing symptom management recommendations. Future research should consider how AI can be used in conjunction with evidence-based guidelines to support cancer patients' supportive care needs.
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Inteligencia Artificial , Neoplasias , Cuidados Paliativos , Humanos , Neoplasias/terapia , Cuidados Paliativos/métodos , Guías de Práctica Clínica como Asunto , InternetRESUMEN
BACKGROUND: Limited guidance exists for analyzing participant engagement in provider-guided digital health interventions (DHIs). System usage is commonly assessed, with acknowledged limitations in measuring socio-affective and cognitive aspects of engagement. Nurse WRITE, an 8-week web-based nurse-guided DHI for managing symptoms among women with recurrent ovarian cancer, offers an opportunity to develop a framework for assessing multidimensional engagement. OBJECTIVE: This study aims to develop a conceptual and analytic framework to measure socio-affective, cognitive, and behavioral engagement with provider-guided DHIs. We then illustrate the framework's ability to describe and categorize engagement using Nurse WRITE as an example. METHODS: A sample of 68 participants from Nurse WRITE who posted on the message boards were included. We adapted a prior framework for conceptualizing and operationalizing engagement across 3 dimensions and finalized a set of 6 distinct measures. Using patients' posts, we created 2 socio-affective engagement measures-total count of socio-affective engagement classes (eg, sharing personal experience) and total word count-and 2 cognitive engagement measures-total count of cognitive engagement classes (eg, asking information-seeking questions) and average question completion percentage. Additionally, we devised behavioral engagement measures using website data-the total count of symptom care plans and plan reviews. k-Means clustering categorized the participants into distinct groups based on levels of engagement across 3 dimensions. Descriptive statistics and narratives were used to describe engagement in 3 dimensions. RESULTS: On average, participants displayed socio-affective engagement 34.7 times, writing 14,851 words. They showed cognitive engagement 19.4 times, with an average of 78.3% completion of nurses' inquiries. Participants also submitted an average of 1.6 symptom care plans and 0.7 plan reviews. Participants were clustered into high (n=13), moderate (n=17), and low engagers (n=38) based on the 6 measures. High engagers wrote a median of 36,956 (IQR 26,199-46,265) words. They demonstrated socio-affective engagement approximately 81 times and cognitive engagement around 46 times, approximately 6 times that of the low engagers and twice that of the moderate engagers. High engagers had a median of 91.7% (IQR 82.2%-93.7%) completion of the nurses' queries, whereas moderate engagers had 86.4% (IQR 80%-96.4%), and low engagers had 68.3% (IQR 60.1%-79.6%). High engagers completed a median of 3 symptom care plans and 2 reviews, while moderate engagers completed 2 plans and 1 review. Low engagers completed a median of 1 plan with no reviews. CONCLUSIONS: This study developed and reported an engagement framework to guide behavioral intervention scientists in understanding and analyzing participants' engagement with provider-guided DHIs. Significant variations in engagement levels across 3 dimensions highlight the importance of measuring engagement with provider-guided DHIs in socio-affective, cognitive, and behavioral dimensions. Future studies should validate the framework with other DHIs, explore the influence of patient and provider factors on engagement, and investigate how engagement influences intervention efficacy.
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PURPOSE: Family caregivers (CGs) of individuals with cancer are increasingly relied upon to provide long-term, sometimes intense care, although their integration into clinical cancer care remains minimal. The Caregiver Advocacy, Research, and Education (CARE) Center is a novel nurse-led academic-clinical partnership to support family CGs of individuals with gynecologic cancer. This study aims to describe the implementation of the Center protocols and report metrics of CG needs and Center support. MATERIALS AND METHODS: The Center's goals are to identify, assess, and provide tailored support to CGs. Initially, Center protocols included assessment of CGs' self-identified distress (distress thermometer, 0 = no distress to 10 = extreme distress) and needs (yes or no). Tailored support on the basis of CG distress was provided by in-person and remote staff who provided complementary, concurrent support based on CG need: evidence-based self-management guides, self-management support, referral to specialty services. Center documentation was analyzed to describe Center reach and CG distress. RESULTS: From November 2019 to June 2023, CGs (N = 1,250) were identified through referrals, new patient outreach, and inpatient visits. Seven hundred and six CGs (56.5%) were assessed through a needs-based assessment, and 515 (41.2%) CGs received tailored support. CGs were mostly men (53.0%) and the mean distress was 4.4/10 (standard deviation, 3.1). CG distress was moderately associated with CG needs including maintaining emotional (ρ = 0.40; P < .001) and physical (ρ = 0.31; P < .001) health and managing patient symptoms (ρ = 0.33; P < .001). CONCLUSION: Center protocols facilitate identification of high-need CGs within a cancer clinic. Future research will longitudinally evaluate the impact of Center protocols on CG and patient outcomes, incorporating updated assessment tools.
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OBJECTIVE: Greater emphasis on patient empowerment has led to a plethora of mobile health applications aimed at empowering patients with cancer. However, the rigor and evidence of these apps are rarely acknowledged. This systematic review of patient empowerment apps describes the characteristics, quality, heuristics, and evidence supporting these apps. MATERIALS AND METHODS: We identified commercially available apps through the Apple and Google Play stores using patient- and research-derived conceptualizations of patient empowerment. Three authors used the Mobile App Rating Scale, heuristics, readability, user ratings, and evidence to evaluate the apps' foci, features, and quality. App characteristics were summarized with descriptive analyses. RESULTS: Twelve apps met the eligibility criteria and were analyzed. Apps' content focused on enhancing communication skills (n = 10, 83.3%), social support (n = 8, 66.7%), information about cancer and treatment (n = 8, 66.7%), and peer-to-peer support (n = 5, 41.7%). The mean objective (3.9 ± 0.5 out of 5) and subjective (3.7 ± 1.0 out of 5) quality scores were moderate to high. Most heuristics were not violated, and the mean reading level was 10th grade, which is above the recommended 8th grade level. Four apps had been evaluated in published research articles. DISCUSSION: The contents of patient empowerment apps varied greatly, and the readability was exclusionary to the average reader. Apps. CONCLUSION: Patient empowerment apps should be more rigorously designed and tested to ensure the apps are usable and beneficial to diverse groups of cancer survivors.
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Supervivientes de Cáncer , Aplicaciones Móviles , Neoplasias , Telemedicina , Atención a la Salud , Humanos , Neoplasias/terapiaRESUMEN
BACKGROUND: Serious games for health are increasingly being used to address health outcomes in patients with chronic illnesses. These studies vary in their study designs, patient populations, frameworks, outcome variables, and degree of specificity of the serious game intervention. OBJECTIVE: This scoping review aims to clarify the conceptual features of the existing research related to serious games designed to improve cognitive and behavioral outcomes in adults with chronic illness. METHODS: We applied the Preferred Reporting Items of Systematic Reviews and Meta-Analysis for scoping reviews (PRISMA-ScR) methodology, including an a priori research question. We searched 4 electronic databases to identify articles published through November 2019. Inclusion criteria encompassed (1) adults 18 years or older; (2) patients with a diagnosis of chronic illness; (3) a serious game intervention; and (4) defined patient outcomes that assess patients' behavioral, cognitive, or health outcomes. RESULTS: Of the 3305 articles identified, 38 were included in the review. We charted and analyzed the theoretical frameworks, key concepts, and outcome variables of these studies with summaries of features across articles. The majority of studies used a randomized controlled trial design (23/38, 61%), included a custom serious game intervention (22/38, 58%), and lacked a theoretical framework (25/38, 66%). Common outcome variables included quality of life (16/38, 42%), mood (15/38, 39%), cognitive function (13/38, 34%), symptoms (12/38, 32%), and physical activity (9/38, 24%). Key differences between studies included whether or not serious games aimed to train versus teach patients, be widely accessible versus tailored interventions, or replace versus complement current treatments. CONCLUSIONS: This scoping review defines the current landscape of research in serious games for health research targeting behavioral and cognitive outcomes in adults with chronic disease. Studies have addressed a variety of patient populations and diverse patient outcomes. Researchers wanting to build on the current research should integrate theoretical frameworks into the design of the intervention and trial to more clearly articulate the active ingredients and mechanisms of serious games.
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OBJECTIVE: Serious games are a growing form of psychoeducation, although few studies have evaluated serious games for patients with advanced cancer. The purpose of this study was to develop and assess the initial acceptability of a serious game to teach women with advanced cancer self-advocacy skills, including communication, decision-making, and social connectivity, to improve their quality of life with cancer. MATERIALS AND METHODS: We conducted a multistage, user-centered codesign process to develop the content of the game that was consistent with our work on how patients self-advocate and patients' preferences for the game. First, we conducted an open pilot study of a mock paper version of the game by assessing patients' interest in the serious game. Second, we organized a diverse expert panel to develop the serious game with a company, Simcoach Games, using patient-centered design approaches with multiple rounds of patient feedback. Finally, we performed acceptability testing of the game by asking patients their perceptions of the game's appropriateness, realism, and entertainment. RESULTS: During the three stages of game development, patients reported that the serious game was appropriate, informative, useful, and relevant to their challenges as patients with cancer. Suggestions for improvement included tailoring the game to a patient's specific situation, providing the game early in treatment, and including caregivers and other patients in the game play. CONCLUSION: The Strong Together™ serious game demonstrates the potential to assist patients in advocating for their needs and priorities. Future work will use patient suggestions to improve the game before efficacy testing.
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Neoplasias/psicología , Defensa del Paciente/educación , Educación del Paciente como Asunto/métodos , Juegos de Video , Adulto , Femenino , Humanos , Defensa del Paciente/psicología , Materiales de Enseñanza , Juegos de Video/psicologíaRESUMEN
BACKGROUND: Growing evidence demonstrates the benefits of early, integrated palliative care (PC) for patients with advanced cancer and their caregivers. Yet, data are lacking on the communication patterns within this model of care. OBJECTIVE: The goals of this study were to describe the content of patient-clinician discussions among patients receiving PC and to compare differences in discussion content between oncologists and PC clinicians. DESIGN: We conducted a qualitative observational analysis. SETTING/SUBJECTS: We included patients with incurable lung and esophageal cancer enrolled in a randomized trial of early, integrated PC versus usual oncology care. We analyzed 68 audio-recorded clinic visits (34 oncologist visits; 34 PC clinician visits) immediately after patients' (N = 19) first and second cancer progressions. We examined themes of clinician communication, comparing the content and frequency of discussions between oncologists and PC clinicians. RESULTS: Although both oncology and PC clinicians discussed symptom management, medical understanding, and treatment decision making with patients at nearly all postprogression visits, PC clinicians tended to assess patient understanding of the treatment process and prognosis more often than oncologists. PC clinicians addressed patient coping, caregiver experiences and needs, and advance care planning more frequently than oncologists. CONCLUSION: PC clinicians play a distinct, complementary role to oncologists in providing care for patients with advanced cancer and their caregivers. PC clinicians tend to assess and elaborate on patient understanding of prognosis and treatment and emphasize effective coping, caregiver needs, and advance care planning. These results illuminate the communication elements by which early, integrated PC may improve patient and caregiver outcomes.
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Personal de Salud/psicología , Comunicación Interdisciplinaria , Neoplasias/terapia , Oncólogos/psicología , Cuidados Paliativos/métodos , Planificación Anticipada de Atención , Anciano , Cuidadores , Toma de Decisiones , Prestación Integrada de Atención de Salud , Femenino , Humanos , Masculino , Persona de Mediana Edad , Relaciones Profesional-Paciente , Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como Asunto , Grabación en CintaRESUMEN
BACKGROUND: Given the aging nursing education workforce and the persistent high demand for doctorally-prepared nursing faculty, there is a critical need to increase the number of nurses entering and completing PhD programs. To fill this need, accelerated PhD education pathways, such as the direct entry BSN/BS-PhD education pathway, have become popular. OBJECTIVE: The objective of this study was to explore the unique characteristics of the direct entry BSN/BS-PhD student experience. This study defines and details the experiences of current and past direct entry BSN/BS-PhD students. DESIGN: This was a qualitative, descriptive study. SETTING: Web-based journals and feedback. PARTICIPANTS: Our sample includes four former and current direct entry BSN/BS-PhD students. METHODS: We used the Delphi method to first analyze participants' journal entries on their lived experiences, and then iteratively summarize and classify the experiences into summative themes. RESULTS: We found four themes unique to participants' experiences: commitment to science, nursing identity, exploring prospects, and balancing family and student expectations. CONCLUSIONS: To ensure that BSN/BS-PhD students have a high-quality education, nurse leaders should be aware of the unique perspectives of direct entry BSN/BS-PhD students. Results from this study can be used to evaluate BSN/BS-PhD programs from students' perspectives.
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Técnica Delphi , Bachillerato en Enfermería/tendencias , Educación de Postgrado en Enfermería/tendencias , Estudiantes de Enfermería/psicología , Docentes de Enfermería , Femenino , Humanos , Investigación en Enfermería , Investigación CualitativaRESUMEN
PURPOSE: Ovarian cancer is the most fatal of all gynecologic cancers, with a high relapse rate regardless of stage. Women treated for ovarian cancer, therefore, likely have supportive care needs that extend well beyond the time frame of first-line therapy. Unfortunately, there is minimal data describing these needs. The purpose of this qualitative study is to understand the supportive care needs of women with ovarian care at the end of treatment. METHODS: To better understand the issues faced by women with ovarian cancer, we conducted a public Twitter chat in collaboration with gynecologic cancer social media (#gyncsm). Both quantitative and qualitative analyses were performed. RESULTS: The chat occurred over a 1-hour time frame on Twitter and resulted in more than 300 unique and original tweets from 43 participants during the chat and an additional 60 unique participants following the chat. Survivors and physicians represented 32% and 11% of participants, respectively; caregivers, advocates, and other clinicians represented the remaining participants. Participants noted deep interest in receiving support during survivorship and dissatisfaction with currently available resources. Sentiment analysis showed that participants viewed the support from social media in a positive light and also revealed negative sentiment around the lack of support from health care providers at the end of treatment. CONCLUSIONS: Themes derived from the Twitter chat revealed the unique experiences of individuals with ovarian cancer after treatment, including a heightened sense of vulnerability. Understanding these themes represents an opportunity for clinicians to better understand and address the needs of this patient community.
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PURPOSE: This qualitative study sought to describe the challenges following treatment and the preferences regarding survivorship care among patients treated for gynecological cancer, their caregivers, and health care providers. METHODS: Between July and August 2017, in-depth semi-structured interviews regarding survivorship were conducted at a large academic hospital in the USA among patients who recently completed treatment (< 12 months) for a gynecological cancer (ovarian, endometrial, cervical, and vulvar) and their primary caregivers. A focus group was conducted among health care providers (oncologists, nurses, and fellows). Main themes were identified using descriptive content analysis. RESULTS: A total of 30 individuals participated in this study (13 patients, 9 caregivers, 8 health care providers). Almost all participants reported a desire for more information on how to address survivorship needs, specifically as they related to side effects, follow-up schedule, and psychological assistance. Despite this uniformly identified need for more information, preferences for survivorship care planning differed across cancer types and individuals, with respect to content, timing, and mode of delivery. Health care providers expressed challenges in communicating with patients about survivorship, a desire to shift post-treatment conversations to the goal of improving quality of life as opposed to focusing on disease recurrence, and an unmet need for disease specific and individualized survivorship care planning. CONCLUSIONS: Patients, caregivers, and health care providers each expressed a need for gynecologic cancer-tailored survivorship care resources. IMPLICATIONS FOR CANCER SURVIVORS: The variation of disease types and patient and caregiver needs may require multi-faceted, individualized survivorship care planning.