Perceptions Of Survivors Research Articles

Hispanic Breast Cancer Survivors Share Their Perceptions About Endocrine Blocking Therapy Adherence

Breast cancer is the leading cause of cancer-related mortality among Hispanic women in the U.S., despite a lower incidence compared to non-Hispanic White women. Hispanic women often face unique socio-economic and cultural barriers that impact timely diagnosis, treatment, and survival outcomes. Hormone receptor-positive breast cancer is prevalent in this population, with endocrine blocking therapy (EBT) recommended as a standard treatment. However, Hispanic breast cancer survivors exhibit higher rates of EBT non-adherence, influenced by factors such as side effects, medication access, and patient-provider communication. This study investigates the perceptions of Hispanic breast cancer survivors on EBT use and identifies factors contributing to adherence challenges, aiming to address disparities and improve outcomes.

Advocates' Perception of the Secondary Victimization of Rape Survivors by Law Enforcement, the Legal System, and Hospital Professionals.

Sexual victimization occurs frequently and it remains important to consider rape victim advocates' perceptions of survivors' secondary victimization due to treatment from police, the legal system, and medical professionals working in hospital emergency departments. Data from interviews with 41 U.S. advocates provide a comprehensive perspective of secondary victimization. Most advocates perceive that survivors face secondary victimization because they are doubted or blamed, face repeated questioning, feel left out of the legal processes, experience invasive evidence collection, and do not receive the desired legal outcome. Advocates share their ways to reduce secondary victimization, such as preparing, empowering, and listening to survivors.

1684P Insights into the daily lives and perceptions of cancer survivors: What hides beyond survival?

1684P Insights into the daily lives and perceptions of cancer survivors: What hides beyond survival?

A visualized and bibliometric analysis of cancer vocational rehabilitation research using CiteSpace

BACKGROUND: There are numerous publications on cancer vocational rehabilitation, visual techniques can help medical researchers and social workers be more familiar with the state of this field. OBJECTIVE: To summarize cancer vocational rehabilitation research, we applied visualized and bibliometric analysis to enable medical workers and social workers to identify evolving patterns of knowledge among articles and research trends, understand the current research status of vocational rehabilitation of cancer, and carry out further research on hot topics. METHODS: Based on a review of 933 papers on cancer vocational rehabilitation published in the Web of Science Core Collection, this study used Citespace software to systematically and objectively describe cancer vocational rehabilitation. RESULTS: Since 2003, the field of cancer vocational rehabilitation began to sprout. The most published and most cited country, institution, author and cited journal were the United States, University of Amsterdam, Angela G. E. M. de Boer, and Psycho-Oncology, respectively. The three most frequently cited keywords were breast cancer, quality of life and cancer survivor. The three keywords with the largest spike in citations were cohort, absence and symptom. Conducting randomized controlled trials or prospective cohort studies to help cancer survivors return to work, and using qualitative methods to understand the vocational rehabilitation experiences or perceptions of cancer survivors or medical staff are hotspots in this field. CONCLUSIONS: Cancer vocational rehabilitation has attracted the attention of researchers all over the world. Future studies may focus on other cancer types and explore more high quality interventions.

Lesbian and bisexual breast cancer survivors' post-treatment resource needs.

The purpose of our study was to identify and describe determinants of lesbian and bisexual breast cancer survivors' post-treatment resources. We used a cross-sectional descriptive study design. The data reported here were gathered as part of OUT: The National Cancer Survey, administered electronically from September 2020 to March 2021 via social media and community partners. We used descriptive statistics, Fisher's exact tests, and thematic analysis to analyze survivor perceptions of information availability, treatment environment, care plans, social support, and health. Of those who participated in the survey, (N =430) 366 identified as lesbian, and 64 identified as bisexual. Mean age was 58.6 years (range 21 - 91 years). Fewer than 11% of our sample indicated they could find helpful information about being a queer person with cancer during their treatment. Over 75% of our sample that received a cancer survivorship care plan indicated that their plan did not include resources for queer individuals. Affirming cancer treatment environments and resources tailored to the needs of lesbian and bisexual breast cancer survivors are critical for reducing disparities. Survivorship care plans should include resources for queer individuals as a part of holistic cancer care.

Impact of Long COVID on Occupational Performance: Perceptions of Survivors

Abstract Date Presented 03/23/24 This phenomenological study examined the perceptions of people living with post-COVID and their perceptions of loss of instrumental activities of daily living (IADL) function and reduced health care access after discharge from the hospital. Primary Author and Speaker: Amber B. Armstead Contributing Authors: Diane Collins, Mi Jung Lee, Jose Rojas, Khamron Micheals, Lima Ghulmi, Carole Tucker

Implementing constraint-induced movement therapy into practice in sub-acute stroke: Experiences and perceptions of stroke survivors and therapists

Implementing constraint-induced movement therapy into practice in sub-acute stroke: Experiences and perceptions of stroke survivors and therapists

Perception of Korean healthy adolescents on cancer and adolescent cancer survivors: a cross-sectional survey

BackgroundAs the number of adolescent cancer survivors increases, detailed and effective healthcare policies on adolescent cancer survivors returning to school and workplace are needed. The study aimed to explore the perception of healthy adolescents on cancer and adolescent cancer survivors.MethodsThis study conducted a face-to-face cross-sectional study in the Republic of Korea in 2021 on adolescent selected through proportional population allocation sampling by sex, age, and region. According to research questions, survey questionnaire organized and collected data on adolescents' perceptions of cancer, differences in perceptions from tuberculosis, measles, asthma, perceptions of adolescent cancer survivors, and health information sources that led to these perceptions.ResultsOf the total 500 adolescents, less than 10% of healthy adolescents responded that cancer is contagious, while three-quarters of the respondents believed that cancer is preventable. In addition, compared to tuberculosis, measles, and asthma, they recognized differences by disease. The majority of healthy adolescents embraced community values advocating the return of adolescent cancer survivors to school and work. However, they expressed a negative view of the situation in which adolescent cancer survivors could interact with them as classmates or co-workers. Adolescents mainly obtained health information on cancer from the Internet and television,ConclusionsThe perception of healthy adolescents on cancer was relatively accurate; however, they have dualistic thinking involving living with adolescent cancer survivors. To facilitate reintegration of adolescent cancer survivors into daily lives, education is needed for healthy adolescents to live with cancer survivors.

“I Didn't Know What I Didn't Know”: Assessment of Adolescent Oncology Patient Engagement in Decision-Making

IntroductionLittle is known about the best way to engage an adolescent oncology patient in decision-making. To integrate adolescent oncology patients most effectively in decision-making, it is important to understand their perceptions not only as adolescents but also as adult survivors who have had time to reflect upon their experience. The purpose of this study is to explore perceptions of survivors of pediatric cancer to better understand their attitudes toward participation in decision-making, decisional regret, and use of decision-support tools. MethodsAn electronic survey tool, containing open- and closed-ended responses, was distributed to adult cancer survivors diagnosed and treated for cancer between the ages of 9 and 18 at a Midwestern, Comprehensive Cancer Center within a tertiary care academic hospital. ResultsSeventy responses were received. Nearly all respondents (96%) reported that decisions made on their behalf were consistent with their desires most/all the time. Almost one-fifth felt that increased involvement would have intensified their anxiety. Eighty-five percent did not regret choices made about their cancer treatment, and 88% would have made the same choices again. Respondents desired more targeted information on the long-term impacts of treatment (i.e., infertility, memory difficulties, mental health concerns), and they highlighted the importance of communication in the decision-making process. ConclusionsAdolescents want to participate in the decision-making process in a way that accommodates their understanding of the pathology and potential impacts of treatment. Our results suggest that developing a simple intervention to help facilitate provision of such anticipatory guidance may be helpful.

Gender-Based Violence Cases and Response at One-Stop Centers in Shinyanga Region, Tanzania

This study sought to establish the perceptions of female survivors regarding the effectiveness of One Stop Centers (OSCs) in responding to Gender-Based Violence (GBV) in Shinyanga, Tanzania. Employing a cross-sectional design and mixed research method, the study surveyed 96 female GBV survivors through a questionnaire and key informant interviews. Quantitative data was analyzed using the SPSS software while thematic analysis analyzed the qualitative data. The findings reveal that sexual and physical violence are the common forms of GBV reported at the OSCs. In response, different services are offered at OSCs but the kinds of services offered at each center depend on the availability of staff, accessibility to OSCs, funding from partners and availability of testing equipment. Female survivors reported barriers to OSCs utilization, including low awareness, fear and stigma, protecting perpetrators and insufficient privacy. Shortages in staff, budget constraints and inadequate transportation emerged as significant challenges for OSCs. Increased government funding for OSCs and collaborative efforts among stakeholders are essential steps to fortify these canters and ensure they can adequately respond to the complex and sensitive nature of GBV.

Association Between Family Functioning and Health-related Quality of Life in Stroke Survivor–Informal Family Caregiver Dyads

PurposeStroke survivors and their informal family caregivers may share the impact of the disease, which may affect family functioning and quality of life (QoL) for both. This study compared the perceptions of stroke survivors and informal family caregivers regarding family functioning and QoL and examined the QoL of those reporting effective versus ineffective family functioning. MethodsA cross-sectional study design and convenience sampling were used. Stroke survivor–informal family caregiver dyads were recruited from a medical university hospital. We assessed participants’ demographic and clinical variables, including disease severity, family functioning, and QoL. Independent t-test, paired t-test, Wilcoxon signed-rank test, and Mann–Whitney U test were used to analyze the data. ResultsSeventy-one stroke survivor–informal family caregiver dyads participated in the current study. Most stroke survivors and informal family caregivers reported effective family functioning, with no significant differences. However, significant differences existed in the seven domains (physical functioning, role-physical, bodily pain, general health, vitality, social functioning, and role-emotional) of QoL, except emotional health. Stroke survivors reporting ineffective family functioning had a significantly lower mental component summary score, unlike informal family caregivers. ConclusionOur findings suggest that family functioning is crucial to ensure stroke survivors’ QoL, particularly regarding their mental health. Health professionals should prioritize mental health assessments and provide appropriate care interventions for stroke survivors in the first 1–6 months after stroke onset.

Would You Rather: Quantifying TBI Survivor Perceptions of Functional Status via Their Surrogates.

To quantify health utilities of the Glasgow Outcome Scale-Extended (GOSE) states after actual Traumatic Brain Injury (TBI). Recovery after TBI is measured using the GOSE, a validated clinical trial endpoint. A recent public survey quantified the health utilities of some GOSE states after hypothetical TBI as worse than death. However, no health utilities exist for disability after actual TBI. This national computer-adaptive survey followed EQUATOR-CHERRIES guidelines and recruited adult TBI survivors (injury>1y prior) via their available surrogates. Using a standard gamble approach in randomized order, participants gave preferences for post-TBI categorical health states ranging from GOSE 2-8. We calculated median [interquartile range, IQR] health utilities for each GOSE state, from -1 (worse than death) to 1 (full health), with 0 as reference (death, GOSE 1). Of 515 eligible, 298 surrogates (58%) consented and completed the scenarios on TBI survivors' behalf. TBI survivors had a current median GOSE 5 [3-7]. GOSE 2, GOSE 3, and GOSE 4 were rated worse than death by 89%, 64%, and 38%, respectively. The relationship was nonlinear, and intervals were unequal between states, with a bimodal distribution for GOSE 4. In this index study of actual post-TBI disability, poor neurologic outcomes represented by GOSE 2-4 were perceived as worse than death by at least one in three survivors. Similar to previously reported public perceptions after a hypothetical TBI, these long-term perceptions may inform earlier post-TBI shared decision making, as well as help shape value-based research and quality of care. II, Economic & Value-based Evaluations.

Stroke virtual rehabilitation in rural communities: exploring the perceptions of stroke survivors, caregivers, clinicians, and health administrators

Purpose Rural-dwelling stroke survivors have unmet rehabilitation needs after returning to community-living. Virtual rehabilitation, defined as the use of technology to provide rehabilitation services from a distance, could be a viable and timely solution to address this need, especially within the COVID-19 pandemic context. There is still a minimal understanding of virtual rehabilitation delivery within rural contexts. This study sought to explore the perceptions of rural stakeholders about virtual stroke rehabilitation. Methods Following an interpretive description approach, 17 qualitative interviews were conducted with stroke survivors (n = 5), caregivers (n = 2), clinicians (n = 7), and health administrators (n = 3), and analyzed to understand their experiences and perceptions of virtual stroke rehabilitation. Results We identified three overarching themes from the participant responses (1) The Root of the (Rural) Problem considered how systemic inequities impact stroke survivors’ and caregivers’ access to stroke recovery services; (2) Common Benefits, Different Challenges identified the unique benefits and challenges of delivering virtual rehabilitation within rural contexts; and (3) Ingredients for Success described important considerations for implementing virtual rehabilitation. Conclusion Virtual rehabilitation is generally accepted by all stakeholders as a supplement to in-person services. Addressing the unique barriers faced by rural clinicians and stroke survivors is necessary to provide successful virtual rehabilitation.

Perceptions of Infertility and Reproductive Concerns in Adolescent and Young Adult Female Cancer Survivors.

This cross-sectional survey study explores the fertility perceptions of adolescent and young adult female cancer survivors (n = 111) and relationships to fertility counseling and reproductive distress. Satisfaction with post-treatment fertility counseling (β = -0.20, p = 0.04), perceived consequences of cancer-related fertility changes (β = 0.26, p = 0.03), and understanding of one's reproductive health (β = -0.22, p = 0.03) correlated with reproductive distress, controlling for covariates (F(10, 88) = 3.50, p < 0.001). Findings suggest that post-treatment counseling may be important to addressing survivors' perceptions of fertility and reproductive potential, which influences levels of distress and to create a greater sense of control on their road to parenthood.

An Exploration of the Experiences and Perceptions of TBI Survivors About Accessing Vocational Rehabilitation During the COVID-19 Pandemic.

Background: Statistics indicate a high prevalence of TBI in South Africa, with many individuals with TBI not returning to work. The lack of return to work among TBI survivors is particularly due to factors such as injury severity, preinjury educational and occupational status, and age at injury. However, in addition to the above factors, there was the COVID-19 pandemic, which resulted in the de-escalation of nonessential outpatient services in order to assist with curbing the spread of the virus. Objective: The aim of the article is to explore the experiences and perceptions of TBI survivors about accessing vocational rehabilitation during the COVID-19 pandemic and how this has affected their worker roles. Method: A descriptive, explorative qualitative research design was used, and semistructured interviews were conducted to collect data. The authors subsequently analysed the transcribed data using a thematic analysis approach. The COREQ (consolidated criteria for reporting qualitative research) checklist was used as a reporting guideline. Ten TBI survivors and two individuals working in the public health sector participated in this study. Two semistructured interviews were conducted with each research participant. Results: Three themes emanated from the study, namely, Theme 1: "The barriers to accessing rehabilitation during the COVID-19 pandemic" represents the participants' barriers to accessing rehabilitation programmes throughout the COVID-19 pandemic. Theme 2: "Lack of rehabilitation negatively influenced the individual with TBI occupational performance" describes how the lack of OT rehabilitation during the COVID-19 pandemic impacted the participants' quality of life. Theme 3: "Factors that facilitated access to rehabilitation during the COVID-19 pandemic" describes the factors that facilitated access to OT rehabilitation services during the COVID-19 pandemic. Conclusion: The study found that there were barriers and facilitators to accessing occupational therapy rehabilitation during the COVID-19 pandemic for TBI survivors. More research needs to be conducted to explore the efficacy of telehealth/telemedicine for occupational therapy rehabilitation and the role of the occupational therapist in global pandemics.

Abstract B019: “It's probably just hemorrhoids”: A qualitative exploration of psychosocial and lifestyle changes and challenges accompanying an early-onset colorectal cancer diagnosis

Abstract Background: Colorectal cancer (CRC) among adults aged &amp;lt; 50 years (early-onset CRC [EOCRC]) is projected to be the leading cause of cancer-related death by 2030. Unanswered questions remain regarding the effects of EOCRC on quality-of-life and psychosocial outcomes affected by an EOCRC. This qualitative study explored the lived experiences and perceptions of a sample of adult EOCRC survivors in the United States through one-on-one interviews. Methods: An early-onset CRC advocate survivor team (AST) member led 27 structured interviews virtually with adults diagnosed with early-onset CRC (mean age at diagnosis = 33.93±5.90). The interview guide consisted of 10 questions, which was co-developed by the lead author, third author, and two AST members. Data was analyzed using a 9-step inductive approach, where a hybrid coding approach was employed that involved both a priori codes as well as any concepts, actions, relationships, and meanings that differed from the pre-set codes. Results: Study participants were from across the country, with over half living in the Southern (44.4%) or Midwestern (22.2%) regions. Most participants were women (66.6%) and self-identified as Non-Hispanic White (85.2%). The age of study participants at the time of interview ranged from 28 to 53 years (mean age = 40.19 ± 5.99) and their age at diagnosis ranged from 26 to 44 years (mean age at diagnosis = 33.93 ± 5.90). Six overarching themes were identified from the interviews with two to three subthemes: 1) Signs and Symptoms (Self-Misdiagnosis, Provider Misdiagnosis), 2) Risk Factors (Family History, Lifestyle, Blame/Defensiveness), 3) System-Level Factors (Provider Recommendations, Navigating Care/Pace of Treatment, Perceptions of Medical Workers), 4) Quality of Life (Fertility and/or Sexual Health, Mental Health/Therapy, Self-Advocacy), 5) Social Support (Support Groups and Family, Friends, and Others), and 6) Reflection (Prevention, Personal, Advocacy). Conclusions: The overall lived-experiences gathered from interviewees highlights specific needs of early-onset CRC identify patients that can be used to inform educational material and comprehensive care. Although the causes of the increase in young-onset CRC remain unknown, psychosocial as well as lifestyle changes and challenges should be considered during treatment and future intervention as well as throughout survivorship in this younger population of CRC patients. Impact: The lived experiences and perceptions of EOCRC survivors highlight specific needs of this population that can inform both educational materials and comprehensive care. Citation Format: Charles R. Rogers, Kevin M. Korous, Mary A. De Vera, Aasma Shaukat, Ellen Brooks, Candace Henley, Wenora Johnson, Tiana N. Rogers. “It's probably just hemorrhoids”: A qualitative exploration of psychosocial and lifestyle changes and challenges accompanying an early-onset colorectal cancer diagnosis [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr B019.

Is there a need for change in cancer survivorship care? A qualitative exploration of survivor experiences and needs at the Sydney Cancer Survivorship Centre Clinic

PurposeEffective cancer survivorship care is contingent on a comprehensive understanding and management of the dynamic needs of cancer survivors. The Sydney Cancer Survivorship Centre (SCSC) clinic established a holistic, multidisciplinary model of survivorship care. We aimed to explore survivors’ experiences and perceptions of the clinic, and to identify their unmet needs.MethodsSemi-structured focus groups (FGs) involving participants recruited from the SCSC clinic were conducted by an experienced facilitator and observer using a guide covering: survivor perceptions of first SCSC clinic visit, services accessed, ongoing unmet needs, and how needs changed over time. FGs were audio-recorded and transcribed. Interpretive description using a Framework approach was undertaken and participant characteristics summarised descriptively.ResultsEight FGs were conducted involving a total of 26 participants (mean age: 60), most were female (n = 20), born in Australia (n = 14), and with breast cancer diagnoses (n = 16). Four overarching themes were identified: (i) perceptions of the SCSC clinic; (ii) patient-centred care; (iii) adjustment to illness; and (iv) external supports and resources. Participants valued the centralisation of multidisciplinary survivorship care at the SCSC clinic, which helped their recovery. Mitigating ongoing treatment sequelae, reassurance of good-health, normalisation of survivorship experiences, and handling caregiver stress represent some needs identified.ConclusionsThe SCSC clinic offers holistic, specialised care and reassurance to cancer survivors. Adjustment to the survivorship journey, inter-survivor shared experiences, and management of physical treatment sequelae were perceived as important in their recovery. Managing survivor needs is integral to improving long-term survivorship care.

"It's Probably Just Hemorrhoids": A Qualitative Exploration of the Lived Experiences and Perceptions of Long-term Survivors of Early-Onset Colorectal Cancer.

Colorectal cancer among adults aged <50 years [early-onset colorectal cancer (EOCRC)] is projected to be the leading cause of cancer-related death by 2030. Although evidence-based guidelines for colorectal cancer screening now recommend beginning screening at age 45, the needs of many at-risk young adults are potentially being overlooked. Unanswered questions also remain regarding the effects of EOCRC on quality-of-life and psychosocial outcomes. This qualitative study explored the lived experiences and perceptions of a sample of adult EOCRC survivors in the United States through one-on-one interviews. An EOCRC advocate survivor team member led 27 structured virtual interviews using a 10-question interview guide. Data were analyzed using a 9-step inductive approach. Participants were geographically diverse. Most were women (66.6%) who self-identified as non-Hispanic White (85.2%). The mean age at interview was 40.19 ± 5.99; at diagnosis, 33.93 ± 5.90. Six overarching themes emerged: signs and symptoms, risk factors, system-level factors, quality of life, social support, and reflection. The specific needs of individuals in this younger population of patients with colorectal cancer should be considered during treatment and future interventions and throughout survivorship. While the reasons for the increasing incidence of EOCRC are currently unknown, the lived experiences and perceptions of EOCRC survivors noted in this study highlight specific needs of this population that can inform educational materials, comprehensive care, future research, and policy change.

Telehealth use and perceptions among prostate cancer survivors.

Reasons underlying disparities in telehealth use among cancer survivors are unknown. We surveyed a sociodemographically diverse population-based cohort of 487 prostate cancer survivors regarding their use and perceptions of telehealth during the COVID-19 pandemic. Overall, only 28.5% of survivors had used telehealth at the time of survey and just 10% felt care through telehealth is comparable to that of an in-person visit. Still, over 55% felt telehealth is a good option for initial consultations or basic care and 15% felt more likely to use telehealth since the pandemic. After adjusting for other socioeconomic factors, survivors with lower education (≤high school vs. any college) had marginally lower use of telehealth (risk ratio [RR], 0.65 [95% CI, 0.42-1.01]) and lower probability of feeling more likely to use telehealth since the pandemic (RR, 0.39 [95% CI, 0.20-0.77]). Differences in survivor perceptions of telehealth by education level highlight new insights underlying disparities in telehealth use and potential targets for interventions.

Perceptions of stroke survivors regarding factors affecting adoption of technology and exergames for rehabilitation.

Task-specific motor training and repetitive practice are essential components of clinical rehabilitation. Emerging evidence suggests that incorporating gaming interfaces (also referred to as "exergames"), including virtual reality and augmented reality (VR/AR)-based interfaces for motor training, can enhance the engagement and efficacy of poststroke rehabilitation. To investigate perceptions of individuals with stroke regarding technology and exergames for rehabilitation. This qualitative phenomenological study included a convenience sample of 11 individuals with stroke (61.7 ± 12.4 years, 6 women and 5 men, 63.5 ± 41.2months post stroke). Community. N/A. Semistructured open-ended focus-group interviews to understand their perceptions on technology and exergames to improve recovery were coded using thematic content analysis. Individuals with stroke were comfortable using smartphones, computers, and rehabilitation technologies but had limited experiences using exergames and VR/AR devices. Individuals with stroke were motivated to use technologies and exergames to improve their functional recovery. Participants identified facilitators (eg, enhancing functional recovery, feedback, therapist supervision) and barriers (eg, safety, inaccessibility, inadequate knowledge) to adopting exergames in their daily lives. Participants wanted the exergames to be customizable, goal oriented, and enjoyable to maintain their engagement. They were willing to use exergames to improve their functional recovery but indicated that these games could not replace the therapist's supervision. Despite having limited experiences with exergames, people post stroke perceived that exergames could promote functional recovery. The perspectives gained from the present study can inform user-centered game design for neurorehabilitation.