Pub Date : 2022-01-01DOI: 10.1097/OR9.0000000000000067
S. Veeraiah, K. Kayser, R. Sudhakar
Abstract Background: The increase of cancer rates in India over the last decade has placed a significant psychosocial burden on patients and their families. To address the psychosocial issues, cancer centers in India have integrated psychosocial services into cancer care by routinely measuring the distress of patients and responding to their distress. In this study, we sought to determine the association between self-reported distress and patient demographic and clinical variables and awareness of their diagnosis and prognosis. Methods: The Department of Psycho-oncology conducted a cross-sectional, cohort study of patients who were being treated for a variety of cancers in a comprehensive cancer center in Chennai, India. Cancer patients (N = 2019) completed a standardized measure of distress and participated in a clinical interview during their admission to a ward or at the time of referral to psycho-oncology. The level of distress was measured by the NCCN Distress Thermometer and problem list. Chi-square tests were used to examine variations in overall distress. Multi-nominal logistic regression analyses were used to assess the level of patients’ reported distress as a function of clinical characteristics (stage of cancer, awareness of diagnosis and prognosis, physical symptoms). Results: The majority (60.3%) of the sample reported a moderate to high level of emotional distress. There were significant associations (P < .05) of younger age, awareness of diagnosis, prognosis, sleep issues, and physical pain with higher levels of distress. Patients who were aware of their diagnoses were more likely to report moderate (P < .01) or severe distress (P < .05) than those who were unaware. Patients who were aware of their prognoses were less likely to report moderate distress (P < .001) and severe distress (P < .001. Implications for Practice and Research: Given that a majority of patients rated at or above the clinical cut-off for distress, oncology centers in India need to provide training for professional psycho-oncology clinicians and incorporate psycho-oncology services to adequately address patients’ distress. Qualitative research may be needed to advance our understanding of specific social and cultural factors that may influence the psychosocial challenges faced by patients. Further investigation of patient distress related to diagnostic disclosure may be helpful in informing practice.
{"title":"Psychosocial factors influencing distress among cancer patients in South India","authors":"S. Veeraiah, K. Kayser, R. Sudhakar","doi":"10.1097/OR9.0000000000000067","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000067","url":null,"abstract":"Abstract Background: The increase of cancer rates in India over the last decade has placed a significant psychosocial burden on patients and their families. To address the psychosocial issues, cancer centers in India have integrated psychosocial services into cancer care by routinely measuring the distress of patients and responding to their distress. In this study, we sought to determine the association between self-reported distress and patient demographic and clinical variables and awareness of their diagnosis and prognosis. Methods: The Department of Psycho-oncology conducted a cross-sectional, cohort study of patients who were being treated for a variety of cancers in a comprehensive cancer center in Chennai, India. Cancer patients (N = 2019) completed a standardized measure of distress and participated in a clinical interview during their admission to a ward or at the time of referral to psycho-oncology. The level of distress was measured by the NCCN Distress Thermometer and problem list. Chi-square tests were used to examine variations in overall distress. Multi-nominal logistic regression analyses were used to assess the level of patients’ reported distress as a function of clinical characteristics (stage of cancer, awareness of diagnosis and prognosis, physical symptoms). Results: The majority (60.3%) of the sample reported a moderate to high level of emotional distress. There were significant associations (P < .05) of younger age, awareness of diagnosis, prognosis, sleep issues, and physical pain with higher levels of distress. Patients who were aware of their diagnoses were more likely to report moderate (P < .01) or severe distress (P < .05) than those who were unaware. Patients who were aware of their prognoses were less likely to report moderate distress (P < .001) and severe distress (P < .001. Implications for Practice and Research: Given that a majority of patients rated at or above the clinical cut-off for distress, oncology centers in India need to provide training for professional psycho-oncology clinicians and incorporate psycho-oncology services to adequately address patients’ distress. Qualitative research may be needed to advance our understanding of specific social and cultural factors that may influence the psychosocial challenges faced by patients. Further investigation of patient distress related to diagnostic disclosure may be helpful in informing practice.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":"4 1","pages":"e067"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45268787","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-01-01DOI: 10.1097/OR9.0000000000000069
Shiho Rose, A. Boyes, Brian Kelly, P. Bridge, Melissa Carlson, Emily Coutts, C. Paul
Abstract Stigma is often experienced by people affected by lung cancer due to the known links between lung cancer and smoking. Antitobacco campaigns, although attempting to “de-normalise” smoking, may contribute to stigmatising people affected by cancer. The study examined how people diagnosed with lung cancer recall and respond to antitobacco advertisements postdiagnosis. Sixteen qualitative semi-structured interviews were conducted with people with a lung cancer diagnosis who were recruited from an Australian clinical cancer registry. Interviews were analysed using thematic analysis. Participants mostly recalled narrative style antitobacco advertisements. A wide array of emotional responses to the advertisements were reported, including relief, shame, worry, discomfort, and resignation. Some participants avoided the advertisements altogether. Although some participants found the advertisements to be promoting stigma, others did not. Participants were not opposed to the broadcasting of antitobacco advertisements. Rather, the advertisements were perceived as appropriate and necessary. In conclusion, although people diagnosed with lung cancer reported experiencing some negative emotional responses to antitobacco advertising, they were supportive of its continuance.
{"title":"Antitobacco advertising and lung cancer stigma: a qualitative study of the experiences of people with a lung cancer diagnosis","authors":"Shiho Rose, A. Boyes, Brian Kelly, P. Bridge, Melissa Carlson, Emily Coutts, C. Paul","doi":"10.1097/OR9.0000000000000069","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000069","url":null,"abstract":"Abstract Stigma is often experienced by people affected by lung cancer due to the known links between lung cancer and smoking. Antitobacco campaigns, although attempting to “de-normalise” smoking, may contribute to stigmatising people affected by cancer. The study examined how people diagnosed with lung cancer recall and respond to antitobacco advertisements postdiagnosis. Sixteen qualitative semi-structured interviews were conducted with people with a lung cancer diagnosis who were recruited from an Australian clinical cancer registry. Interviews were analysed using thematic analysis. Participants mostly recalled narrative style antitobacco advertisements. A wide array of emotional responses to the advertisements were reported, including relief, shame, worry, discomfort, and resignation. Some participants avoided the advertisements altogether. Although some participants found the advertisements to be promoting stigma, others did not. Participants were not opposed to the broadcasting of antitobacco advertisements. Rather, the advertisements were perceived as appropriate and necessary. In conclusion, although people diagnosed with lung cancer reported experiencing some negative emotional responses to antitobacco advertising, they were supportive of its continuance.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":"4 1","pages":"e069"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48933150","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-10-01Epub Date: 2021-10-25DOI: 10.1097/or9.0000000000000062
Austin R Waters, Lisa H Gren, Charles R Rogers, Anne C Kirchhoff, Echo L Warner
Background: Young adult cancer caregivers (YACC) may experience heightened caregiver burden because they take on caregiving during a dynamic time of life. The purpose of this study was to describe YACC experiences, burden, and social support while caregiving.
Methods: Grounded by the Cancer Family Caregiving Experience Model and the Stress and Coping Social Support theory, semi-structured interviews were conducted with YACC. Inductive analysis was applied to YACC perceptions of caregiving, and deductive analysis to YACC social networks and social support.
Results: YACC (N=34) were primarily between 25 to 29 years of age (38.2%), primarily female (70.6%), non-Hispanic White (91.2%), employed (85.3%), college graduates or higher (53.0%), and caring for a spouse/partner (52.9%). Qualitative analysis of interviews with YACC resulted in 2 themes: cancer caregiving during young adulthood and young adult cancer caregiver social support. In the first theme YACC often did not perceive themselves as caregivers, rather their caregiving responsibilities were viewed as an extension of their relationship with the patient. Further YACC reported developmental-specific responsibilities (eg, caring for young children, being unable to take time off while solidifying careers) which often conflicted with their caregiving responsibilities (eg, managing patient's medication, attending appointments) and heightened burden. In response, YACC often formed caregiver teams consisting of family, friends, and community members to care for their loved one. In the second theme YACC most commonly reported receiving emotional and instrumental support from their social network. YACC specifically mentioned their appreciation for emotional support provided by other young adults and instrumental support in the form of financial support.
Conclusions: YACC faced developmentally specific challenges during caregiving that older adult caregivers may not encounter. The conflict of young adult and caregiving responsibilities resulted in YACC forming caregiver teams. Thus, theoretical approaches to understand and improve caregiver health would benefit from the inclusion of the developmental context of young adulthood. Furthermore, it is crucial that cancer centers tailor supportive services to YACC as the number of young caregivers increases.
{"title":"Qualitative inquiry of cancer caregiving during young adulthood: responsibilities, challenges, teamwork, and social support.","authors":"Austin R Waters, Lisa H Gren, Charles R Rogers, Anne C Kirchhoff, Echo L Warner","doi":"10.1097/or9.0000000000000062","DOIUrl":"10.1097/or9.0000000000000062","url":null,"abstract":"<p><strong>Background: </strong>Young adult cancer caregivers (YACC) may experience heightened caregiver burden because they take on caregiving during a dynamic time of life. The purpose of this study was to describe YACC experiences, burden, and social support while caregiving.</p><p><strong>Methods: </strong>Grounded by the Cancer Family Caregiving Experience Model and the Stress and Coping Social Support theory, semi-structured interviews were conducted with YACC. Inductive analysis was applied to YACC perceptions of caregiving, and deductive analysis to YACC social networks and social support.</p><p><strong>Results: </strong>YACC (N=34) were primarily between 25 to 29 years of age (38.2%), primarily female (70.6%), non-Hispanic White (91.2%), employed (85.3%), college graduates or higher (53.0%), and caring for a spouse/partner (52.9%). Qualitative analysis of interviews with YACC resulted in 2 themes: cancer caregiving during young adulthood and young adult cancer caregiver social support. In the first theme YACC often did not perceive themselves as caregivers, rather their caregiving responsibilities were viewed as an extension of their relationship with the patient. Further YACC reported developmental-specific responsibilities (eg, caring for young children, being unable to take time off while solidifying careers) which often conflicted with their caregiving responsibilities (eg, managing patient's medication, attending appointments) and heightened burden. In response, YACC often formed caregiver teams consisting of family, friends, and community members to care for their loved one. In the second theme YACC most commonly reported receiving emotional and instrumental support from their social network. YACC specifically mentioned their appreciation for emotional support provided by other young adults and instrumental support in the form of financial support.</p><p><strong>Conclusions: </strong>YACC faced developmentally specific challenges during caregiving that older adult caregivers may not encounter. The conflict of young adult and caregiving responsibilities resulted in YACC forming caregiver teams. Thus, theoretical approaches to understand and improve caregiver health would benefit from the inclusion of the developmental context of young adulthood. Furthermore, it is crucial that cancer centers tailor supportive services to YACC as the number of young caregivers increases.</p>","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":"3 4","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8570566/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39598562","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-10-01DOI: 10.1097/OR9.0000000000000064
Sarah C. Reed, Julie Berrett-Abebe, Robin L. Whitney, S. Sarkar, J. Bell
Abstract Background: This systematic review was conducted to improve our understanding of the relationship between fear of cancer recurrence (FCR), anxiety and worry, and engagement in health behaviors and/or health service use. Methods: A systematic review following PRISMA methodology was performed to identify any publications that examined FCR, anxiety and worry, and health behaviors and/or health service use in the following databases: PubMed, CINAHL, and PsychINFO from January 1990 to April 2021. Quality was assessed using QualSyst, a standard quality assessment for evaluating primary research articles. Results: Seventy articles met the inclusion criteria, but the outcomes were too heterogeneous to combine in statistical meta-analysis. The measurement of FCR also varied widely and was inconsistent across studies. Among FCR specific measures, 36% used some version of the Fear of Cancer Recurrence Inventory. Prevention and detection of new and recurrent cancers accounted for 60% of all included studies, with the most frequently examined health behaviors being smoking status (17%) and physical activity (16%). Most associations indicated a significant relationship between FCR and current smoking, with those who are currently smoking experiencing higher levels of FCR. Relatively few studies explored the relationship between FCR and surveillance. Associations categorized under Interventions for Late Effects included a range of health services use with largely mixed results. Overall, studies had moderate to high quality. Conclusions: Given the measurement heterogeneity of FCR, future research would benefit from consistent operationalization and measurement. Some evidence suggests that FCR is associated with poor health behaviors. More studies are needed examining the relationship between FCR and surveillance. Research and clinical interventions may choose to focus on early post-treatment survivorship, given greater opportunities for support and intervention around FCR and other psychosocial concerns.
{"title":"Relationships between fear of cancer recurrence, anxiety and worry, and health behaviors and health service use: a systematic review","authors":"Sarah C. Reed, Julie Berrett-Abebe, Robin L. Whitney, S. Sarkar, J. Bell","doi":"10.1097/OR9.0000000000000064","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000064","url":null,"abstract":"Abstract Background: This systematic review was conducted to improve our understanding of the relationship between fear of cancer recurrence (FCR), anxiety and worry, and engagement in health behaviors and/or health service use. Methods: A systematic review following PRISMA methodology was performed to identify any publications that examined FCR, anxiety and worry, and health behaviors and/or health service use in the following databases: PubMed, CINAHL, and PsychINFO from January 1990 to April 2021. Quality was assessed using QualSyst, a standard quality assessment for evaluating primary research articles. Results: Seventy articles met the inclusion criteria, but the outcomes were too heterogeneous to combine in statistical meta-analysis. The measurement of FCR also varied widely and was inconsistent across studies. Among FCR specific measures, 36% used some version of the Fear of Cancer Recurrence Inventory. Prevention and detection of new and recurrent cancers accounted for 60% of all included studies, with the most frequently examined health behaviors being smoking status (17%) and physical activity (16%). Most associations indicated a significant relationship between FCR and current smoking, with those who are currently smoking experiencing higher levels of FCR. Relatively few studies explored the relationship between FCR and surveillance. Associations categorized under Interventions for Late Effects included a range of health services use with largely mixed results. Overall, studies had moderate to high quality. Conclusions: Given the measurement heterogeneity of FCR, future research would benefit from consistent operationalization and measurement. Some evidence suggests that FCR is associated with poor health behaviors. More studies are needed examining the relationship between FCR and surveillance. Research and clinical interventions may choose to focus on early post-treatment survivorship, given greater opportunities for support and intervention around FCR and other psychosocial concerns.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":"3 1","pages":"e064"},"PeriodicalIF":0.0,"publicationDate":"2021-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41985180","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-10-01DOI: 10.1097/OR9.0000000000000063
A. Girgis, Hayley Candler, T. Handley, J. Descallar, V. Hansen, M. Haas, R. Viney, P. Haywood, Douglas Bellamy, A. Proietto, B. Kelly
Abstract Background: The significant psychosocial morbidity experienced by cancer patients is often undetected and untreated. Despite international priority given to psychosocial care for cancer patients, implementation of psychosocial programs into routine cancer care is limited. We developed, implemented, and assessed the impact, acceptability, and cost of an integrated, patient-centered Psychosocial Assessment, Care and Treatment (PACT) model of care for cancer patients within a general hospital setting. Methods: A time series research design was implemented to test the PACT model of care, newly introduced in an Australian tertiary hospital. System-level impact on systematic distress screening and management was assessed through audit of the medical records of three cross-sectional samples of 141 patients, at baseline and at 12 and 24 months post-baseline. The impact of the model on patient experience and health care professionals’ (HCPs) knowledge and confidence was assessed via surveys. The acceptability of the intervention was assessed through HCP interviews at 24 months. The cost of the intervention was assessed by PACT staff recording the time spent on care provision, training, and intervention administration, and associated costs were calculated using staff payment rates adjusted for superannuation and leave. Results: Across the 24 months of implementation, formal distress screening increased from 0% at baseline to 29% of patients at 12 months and 31% of patients at 24 months, with an associated decrease in informal screening as formal screening increased. There was no notable change in distress management (ie, development of care plans) across the time period. Baseline patient experience was already high (mean score = 46.85/55) and did not change significantly over the course of the study. In both general and specific areas of addressing patient psychosocial concerns, HCP knowledge and confidence was moderate and remained largely unchanged over the course of the study. HCPs perceived the PACT model as highly beneficial and instrumental in bringing about significant changes to staff's knowledge, practices and awareness of psychosocial issues. The estimated total labor cost (including on-costs) was AUD$119,239 (over the 2 years); with a declining cost over the lifetime of the intervention reflecting the higher initial set-up costs. Conclusions: Although the PACT model was associated with an increase in distress screening, staff workloads, high turnover, and administrative barriers may have restricted the translation into distress management. Future research exploring effective avenues to engage staff at a management level and ensure that staff view distress management as a valuable component of their role may assist to embed strategies into the general hospital culture and lead to more sustainable changes.
{"title":"The PACT Study: results of a time series study investigating the impact, acceptability and cost of an integrated model for psychosocial screening, care and treatment of patients with urological and head and neck cancers","authors":"A. Girgis, Hayley Candler, T. Handley, J. Descallar, V. Hansen, M. Haas, R. Viney, P. Haywood, Douglas Bellamy, A. Proietto, B. Kelly","doi":"10.1097/OR9.0000000000000063","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000063","url":null,"abstract":"Abstract Background: The significant psychosocial morbidity experienced by cancer patients is often undetected and untreated. Despite international priority given to psychosocial care for cancer patients, implementation of psychosocial programs into routine cancer care is limited. We developed, implemented, and assessed the impact, acceptability, and cost of an integrated, patient-centered Psychosocial Assessment, Care and Treatment (PACT) model of care for cancer patients within a general hospital setting. Methods: A time series research design was implemented to test the PACT model of care, newly introduced in an Australian tertiary hospital. System-level impact on systematic distress screening and management was assessed through audit of the medical records of three cross-sectional samples of 141 patients, at baseline and at 12 and 24 months post-baseline. The impact of the model on patient experience and health care professionals’ (HCPs) knowledge and confidence was assessed via surveys. The acceptability of the intervention was assessed through HCP interviews at 24 months. The cost of the intervention was assessed by PACT staff recording the time spent on care provision, training, and intervention administration, and associated costs were calculated using staff payment rates adjusted for superannuation and leave. Results: Across the 24 months of implementation, formal distress screening increased from 0% at baseline to 29% of patients at 12 months and 31% of patients at 24 months, with an associated decrease in informal screening as formal screening increased. There was no notable change in distress management (ie, development of care plans) across the time period. Baseline patient experience was already high (mean score = 46.85/55) and did not change significantly over the course of the study. In both general and specific areas of addressing patient psychosocial concerns, HCP knowledge and confidence was moderate and remained largely unchanged over the course of the study. HCPs perceived the PACT model as highly beneficial and instrumental in bringing about significant changes to staff's knowledge, practices and awareness of psychosocial issues. The estimated total labor cost (including on-costs) was AUD$119,239 (over the 2 years); with a declining cost over the lifetime of the intervention reflecting the higher initial set-up costs. Conclusions: Although the PACT model was associated with an increase in distress screening, staff workloads, high turnover, and administrative barriers may have restricted the translation into distress management. Future research exploring effective avenues to engage staff at a management level and ensure that staff view distress management as a valuable component of their role may assist to embed strategies into the general hospital culture and lead to more sustainable changes.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":"3 1","pages":"e063"},"PeriodicalIF":0.0,"publicationDate":"2021-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44130156","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-10-01DOI: 10.1097/OR9.0000000000000065
Miriam Vélez-Bermúdez, Aleisha Norton, Natalie Ament, J. Armer, Lauren Z Davis, R. L. Deming, S. Lutgendorf
Supplemental Digital Content is available in the text Abstract Background: Although cancer diagnosis and treatment frequently cause distress, many survivors report personal growth, change, and transformation. To better understand these dynamics, we used a qualitative approach to study twenty-seven heterogeneous cancer survivors who participated in physically and emotionally challenging journeys through the Above and Beyond Cancer organization. Groups traveled to Kathmandu (Nepal), Mt. Kilimanjaro (Tanzania), and Mt. Kailash (China), and volunteered at nearby cancer hospitals. Methods: Survivors completed short essays and surveys pre-departure, 3 weeks, and 3 months post-trip. Qualitative responses were categorized into themes by 4 independent reviewers following consensus, and quantitative measures assessed sociodemographic characteristics and mood. Results: Qualitative findings highlighted the role of new experiences and social support in enabling participants to develop new meaning, growth, and a new sense of their capabilities. Quantitative measures showed that anxiety of participants decreased over time. Conclusions: This study points to lifestyle undertakings that can support personal growth in cancer survivors.
{"title":"Above and beyond cancer: a novel approach to growth and resilience in cancer survivors","authors":"Miriam Vélez-Bermúdez, Aleisha Norton, Natalie Ament, J. Armer, Lauren Z Davis, R. L. Deming, S. Lutgendorf","doi":"10.1097/OR9.0000000000000065","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000065","url":null,"abstract":"Supplemental Digital Content is available in the text Abstract Background: Although cancer diagnosis and treatment frequently cause distress, many survivors report personal growth, change, and transformation. To better understand these dynamics, we used a qualitative approach to study twenty-seven heterogeneous cancer survivors who participated in physically and emotionally challenging journeys through the Above and Beyond Cancer organization. Groups traveled to Kathmandu (Nepal), Mt. Kilimanjaro (Tanzania), and Mt. Kailash (China), and volunteered at nearby cancer hospitals. Methods: Survivors completed short essays and surveys pre-departure, 3 weeks, and 3 months post-trip. Qualitative responses were categorized into themes by 4 independent reviewers following consensus, and quantitative measures assessed sociodemographic characteristics and mood. Results: Qualitative findings highlighted the role of new experiences and social support in enabling participants to develop new meaning, growth, and a new sense of their capabilities. Quantitative measures showed that anxiety of participants decreased over time. Conclusions: This study points to lifestyle undertakings that can support personal growth in cancer survivors.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":"3 1","pages":"e065"},"PeriodicalIF":0.0,"publicationDate":"2021-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48442328","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-10-01DOI: 10.1097/OR9.0000000000000066
D. C. Brosseau, J. Braeken, C. Carmack, Z. Rosberger, A. Körner
Supplemental Digital Content is available in the text Abstract Background: Measurement advances are needed to enable the study of dyadic-level processes impacting couples coping with cancer. This study sought to develop and empirically examine a Dyadic Efficacy Scale for Cancer (DESC). Cancer-related dyadic efficacy is an individual's confidence to work together with a partner to cope with cancer and its treatment. Methods: The DESC was developed using an exploratory sequential mixed methods design. This paper outlines the psychometric evaluation phase. Individuals with cancer (N = 261) and their partners (N = 217) completed 50 items. Item-level analyses reduced this set to 26 items. Using the dyad as the unit of analysis, confirmatory factor analysis with mirrored patient and partner bifactor structure tested for the presence of a general factor and 3 secondary factors, that is, illness intrusions, patient affect, partner affect. Results: Goodness-of-fit indices supported the identified model, χ 2(1170) = 2090, P < .001; RMSEA = .05, P = .14, 90% CI .05–.06; SRMR = .05; CFI = .90. Multidimensionality differed for patients and partners. A general dyadic efficacy factor and secondary factors for managing affect were present for both dyad members, whereas the secondary factor of managing illness intrusions was confirmed for patients only. The model explained 72% and 64% of the variance in patients’ and partners’ dyadic efficacy. Evidence of convergent validity was presented. Conclusions: This study is the first to provide a tool to assess dyadic efficacy among couples coping with cancer. The assessment of cancer-related dyadic efficacy enables new discoveries into couples’ adjustment to cancer.
摘要背景:为了研究影响夫妻应对癌症的二元水平过程，需要在测量方面取得进展。本研究旨在开发和实证检验癌症双重疗效量表(DESC)。癌症相关的二元疗效是一个人与伴侣一起应对癌症及其治疗的信心。方法:采用探索性顺序混合方法设计DESC。本文概述了心理测量评价阶段。癌症患者(N = 261)和他们的伴侣(N = 217)完成了50个项目。项目层面的分析将这个集合减少到26个项目。以二分体为分析单元，采用镜像患者与伴侣双因素结构的验证性因素分析，检验是否存在1个一般因素和3个次要因素，即疾病侵入、患者影响、伴侣影响。结果:拟合优度指数支持鉴定的模型，χ 2(1170) = 2090, P < .001;rmsea =。05, p =。14, 90% ci 0.05 - 0.06;srmr = .05;cfi = 0.90。患者和伴侣的多维度存在差异。两组成员均存在一般的二元效能因子和管理情绪的次要因子，而管理疾病侵扰的次要因子仅在患者中得到证实。该模型解释了72%和64%的患者和伴侣的双重疗效差异。提出了收敛效度的证据。结论:这项研究首次提供了一种工具来评估夫妻应对癌症的双重疗效。对癌症相关的二元疗效的评估使夫妇对癌症的适应有了新的发现。
{"title":"We think we can: development of the Dyadic Efficacy Scale for Cancer","authors":"D. C. Brosseau, J. Braeken, C. Carmack, Z. Rosberger, A. Körner","doi":"10.1097/OR9.0000000000000066","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000066","url":null,"abstract":"Supplemental Digital Content is available in the text Abstract Background: Measurement advances are needed to enable the study of dyadic-level processes impacting couples coping with cancer. This study sought to develop and empirically examine a Dyadic Efficacy Scale for Cancer (DESC). Cancer-related dyadic efficacy is an individual's confidence to work together with a partner to cope with cancer and its treatment. Methods: The DESC was developed using an exploratory sequential mixed methods design. This paper outlines the psychometric evaluation phase. Individuals with cancer (N = 261) and their partners (N = 217) completed 50 items. Item-level analyses reduced this set to 26 items. Using the dyad as the unit of analysis, confirmatory factor analysis with mirrored patient and partner bifactor structure tested for the presence of a general factor and 3 secondary factors, that is, illness intrusions, patient affect, partner affect. Results: Goodness-of-fit indices supported the identified model, χ 2(1170) = 2090, P < .001; RMSEA = .05, P = .14, 90% CI .05–.06; SRMR = .05; CFI = .90. Multidimensionality differed for patients and partners. A general dyadic efficacy factor and secondary factors for managing affect were present for both dyad members, whereas the secondary factor of managing illness intrusions was confirmed for patients only. The model explained 72% and 64% of the variance in patients’ and partners’ dyadic efficacy. Evidence of convergent validity was presented. Conclusions: This study is the first to provide a tool to assess dyadic efficacy among couples coping with cancer. The assessment of cancer-related dyadic efficacy enables new discoveries into couples’ adjustment to cancer.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":"3 1","pages":"e066"},"PeriodicalIF":0.0,"publicationDate":"2021-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45534248","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-10-01DOI: 10.1097/OR9.0000000000000061
P. Butow, H. Shepherd, J. Cuddy, M. Harris, S. He, L. Masya, N. Rankin, P. Grimison, A. Girgis, J. Shaw
Supplemental Digital Content is available in the text Abstract Introduction: Clinical pathways (CPs) can improve health outcomes, but evidence of their impact is mixed, perhaps due to variations in CP delivery. Identifying why variations occur, and their intended purpose is important, to guide CP development and implementation. We developed a CP for screening, assessment and management of anxiety and depression in cancer patients (the ADAPT CP). The CP was implemented in 12 Oncology services in Australia that were participating in the ADAPT Cluster randomized controlled trial (CRCT), allowing some tailoring of the CP for local conditions. The aim of this article is to describe what and why decisions were made to tailor the ADAPT CP in these services. Method: Twelve oncology services were purposively selected for diversity in setting. At each service, a multi-disciplinary lead team was formed to make decisions about local tailoring and to plan, champion and enact the CP implementation. Detailed notes taken during engagement meetings, and service-specific workflow diagrams, form the data for this analysis. Notes were content-analyzed, and workflows reviewed, to identify decision-making themes. Results: Twelve cancer services (7 urban and 5 regional) participated in CRCT. Ten were publicly funded, one was privately funded and the other was a mixed public and private service. Diverse decisions were made regarding the selection of eligible patient cohorts, how to introduce screening to patients, and screening and triage processes. Rationales for decisions included aligning with existing workflows, utilizing staff with required skills, minimizing staff burden, ensuring no patient was missed, and minimizing patient distress. Discussion: Practical issues and staff attitudes and skills often guided CP decisions, highlighting the need to work collaboratively with health services to determine the optimal workflow for each setting. In some settings, considerable discussion and problem-solving was required before processes could be agreed upon that overcame perceived barriers and allowed the CP implementation to proceed. Although it is yet to be determined whether some decisions were optimal in terms of patient outcomes, local tailoring ensured the CP became operational at all services. Allowing time and ensuring the right people are involved are essential when tailoring new CPs before their introduction into clinical care.
{"title":"From ideal to actual practice: Tailoring a clinical pathway to address anxiety or depression in patients with cancer and planning its implementation across individual clinical services","authors":"P. Butow, H. Shepherd, J. Cuddy, M. Harris, S. He, L. Masya, N. Rankin, P. Grimison, A. Girgis, J. Shaw","doi":"10.1097/OR9.0000000000000061","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000061","url":null,"abstract":"Supplemental Digital Content is available in the text Abstract Introduction: Clinical pathways (CPs) can improve health outcomes, but evidence of their impact is mixed, perhaps due to variations in CP delivery. Identifying why variations occur, and their intended purpose is important, to guide CP development and implementation. We developed a CP for screening, assessment and management of anxiety and depression in cancer patients (the ADAPT CP). The CP was implemented in 12 Oncology services in Australia that were participating in the ADAPT Cluster randomized controlled trial (CRCT), allowing some tailoring of the CP for local conditions. The aim of this article is to describe what and why decisions were made to tailor the ADAPT CP in these services. Method: Twelve oncology services were purposively selected for diversity in setting. At each service, a multi-disciplinary lead team was formed to make decisions about local tailoring and to plan, champion and enact the CP implementation. Detailed notes taken during engagement meetings, and service-specific workflow diagrams, form the data for this analysis. Notes were content-analyzed, and workflows reviewed, to identify decision-making themes. Results: Twelve cancer services (7 urban and 5 regional) participated in CRCT. Ten were publicly funded, one was privately funded and the other was a mixed public and private service. Diverse decisions were made regarding the selection of eligible patient cohorts, how to introduce screening to patients, and screening and triage processes. Rationales for decisions included aligning with existing workflows, utilizing staff with required skills, minimizing staff burden, ensuring no patient was missed, and minimizing patient distress. Discussion: Practical issues and staff attitudes and skills often guided CP decisions, highlighting the need to work collaboratively with health services to determine the optimal workflow for each setting. In some settings, considerable discussion and problem-solving was required before processes could be agreed upon that overcame perceived barriers and allowed the CP implementation to proceed. Although it is yet to be determined whether some decisions were optimal in terms of patient outcomes, local tailoring ensured the CP became operational at all services. Allowing time and ensuring the right people are involved are essential when tailoring new CPs before their introduction into clinical care.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":"3 1","pages":"e061"},"PeriodicalIF":0.0,"publicationDate":"2021-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49076570","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-07-01DOI: 10.1097/OR9.0000000000000057
Georgia Darmonkow, E. Dicks, R. Roome, J. Chafe, C. Simmonds, H. Etchegary
Background: Mastectomy (MT) rates are higher in Newfoundland and Labrador (NL) than in any other province in Canada, even in women diagnosed with early-stage breast cancer. In this article, we present qualitative data from women who made a surgical breast cancer treatment decision to better understand the decision-making environment and process. Methods: A descriptive, qualitative design was employed. Semi-structured interviews and focus groups were held with women in NL who underwent surgical treatment for breast cancer, including breast-conserving surgery (BCS) or mastectomy (MT). Results: Thirty-five women participated. 74.3% had MT, whereas only 11.4% had BCS. Additionally, 14.3% had BCS initially followed by MT. The surgical treatment decision-making context was heterogeneous. Women reported varying levels of time they had to make a surgical decision, diverse perceptions of decisional choice, opinions on the adequacy of information provided to inform a decision, and different levels of available formal and informal supports. Most reported they were satisfied with their surgical decision, although the context in which these decisions were made was clearly a challenging one. Conclusions: Although most women were pleased with the surgical care they received, adequate time and thorough pre-surgical discussion were noted as necessary but not always available. Women explained the importance of thinking through their personal circumstances and values so as to make informed surgical decisions. Postsurgical care and discussion of available psychosocial supports were proposed as areas that could be improved.
{"title":"Decision-making context of women who have undergone surgical treatment for breast cancer: a qualitative exploration of patient perspectives","authors":"Georgia Darmonkow, E. Dicks, R. Roome, J. Chafe, C. Simmonds, H. Etchegary","doi":"10.1097/OR9.0000000000000057","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000057","url":null,"abstract":"Background: Mastectomy (MT) rates are higher in Newfoundland and Labrador (NL) than in any other province in Canada, even in women diagnosed with early-stage breast cancer. In this article, we present qualitative data from women who made a surgical breast cancer treatment decision to better understand the decision-making environment and process. Methods: A descriptive, qualitative design was employed. Semi-structured interviews and focus groups were held with women in NL who underwent surgical treatment for breast cancer, including breast-conserving surgery (BCS) or mastectomy (MT). Results: Thirty-five women participated. 74.3% had MT, whereas only 11.4% had BCS. Additionally, 14.3% had BCS initially followed by MT. The surgical treatment decision-making context was heterogeneous. Women reported varying levels of time they had to make a surgical decision, diverse perceptions of decisional choice, opinions on the adequacy of information provided to inform a decision, and different levels of available formal and informal supports. Most reported they were satisfied with their surgical decision, although the context in which these decisions were made was clearly a challenging one. Conclusions: Although most women were pleased with the surgical care they received, adequate time and thorough pre-surgical discussion were noted as necessary but not always available. Women explained the importance of thinking through their personal circumstances and values so as to make informed surgical decisions. Postsurgical care and discussion of available psychosocial supports were proposed as areas that could be improved.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":"3 1","pages":"e057"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44576419","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-07-01DOI: 10.1097/OR9.0000000000000059
Sabina Vatter, N. Bartley, M. Best, I. Juraskova, C. Jacobs, M. Ballinger, David M. Thomas, P. Butow
Abstract Background: In order for genomic testing to fulfil its promise of helping cancer patients and survivors to prevent future disease, it is important to consider its behavioral impact and outcomes. This study explored the factors that participants perceived would impact lifestyle-related behavioral intentions following genome sequencing (GS). Methods: Individual semistructured interviews were conducted to explore behavioral intentions with a purposive subsample of 24 adults with a past or current cancer of likely heritable aetiology who undertook germline GS as part of a larger genetic study (RisC). Participants were interviewed 12 months following their consent to a longitudinal psychosocial sub-study of RisC (PiGeOn study), before receipt of results. Data were analyzed using thematic analysis. Results: Analysis revealed 3 main themes: past prompts, barriers, and motivators to behavior change. The primary goal for behavioral change was to be healthy for oneself and one's family. Past experience of cancer facilitated positive modifications to lifestyle, such as increased exercise and healthy diet, higher prioritization of mental health and well-being, and regular health check-ups and tests. Maintaining these changes, however, was difficult for some due to daily commitments and lack of self-control. Limited knowledge and perceived inevitability of developing cancer due to genetic predisposition were recognized as barriers to making lifestyle changes. Concurrently, future receipt of actionable results was perceived as a powerful driver of behavior change. Conclusion: Understanding barriers and facilitators to behavior intention and patients’ attitudes to recommended lifestyle change in the context of genomic testing can be useful for health care professionals, to guide their discussions of behavioral change.
{"title":"Does undertaking genome sequencing prompt actual and planned lifestyle-related behavior change in cancer patients and survivors? A qualitative study","authors":"Sabina Vatter, N. Bartley, M. Best, I. Juraskova, C. Jacobs, M. Ballinger, David M. Thomas, P. Butow","doi":"10.1097/OR9.0000000000000059","DOIUrl":"https://doi.org/10.1097/OR9.0000000000000059","url":null,"abstract":"Abstract Background: In order for genomic testing to fulfil its promise of helping cancer patients and survivors to prevent future disease, it is important to consider its behavioral impact and outcomes. This study explored the factors that participants perceived would impact lifestyle-related behavioral intentions following genome sequencing (GS). Methods: Individual semistructured interviews were conducted to explore behavioral intentions with a purposive subsample of 24 adults with a past or current cancer of likely heritable aetiology who undertook germline GS as part of a larger genetic study (RisC). Participants were interviewed 12 months following their consent to a longitudinal psychosocial sub-study of RisC (PiGeOn study), before receipt of results. Data were analyzed using thematic analysis. Results: Analysis revealed 3 main themes: past prompts, barriers, and motivators to behavior change. The primary goal for behavioral change was to be healthy for oneself and one's family. Past experience of cancer facilitated positive modifications to lifestyle, such as increased exercise and healthy diet, higher prioritization of mental health and well-being, and regular health check-ups and tests. Maintaining these changes, however, was difficult for some due to daily commitments and lack of self-control. Limited knowledge and perceived inevitability of developing cancer due to genetic predisposition were recognized as barriers to making lifestyle changes. Concurrently, future receipt of actionable results was perceived as a powerful driver of behavior change. Conclusion: Understanding barriers and facilitators to behavior intention and patients’ attitudes to recommended lifestyle change in the context of genomic testing can be useful for health care professionals, to guide their discussions of behavioral change.","PeriodicalId":73915,"journal":{"name":"Journal of psychosocial oncology research and practice","volume":"41 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87350226","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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