Objectives: This Special issue of Psycho-Oncology highlights examples of the application of implementation science to research in psycho-oncology. The aim is to demonstrate the different ways that implementation science is being used to generate evidence that can more readily translate evidence into changes in clinical practice. We hope this issue fosters greater interest in using the tools of implementation science to improve the lives of people affected by cancer.
Methods: The papers in the issue were selected from among those that responded to a call for submissions on the application of implementation science frameworks and methods to issues in psycho-oncology. The focus included but was not limited to research on: understanding barriers and facilitators of intervention/practice adoption; assessing implementation outcomes, evaluating implementation strategies, and improving behavioural and/or clinical outcomes.
Results: The 11 papers in this issue were grouped for presentation purposes into four common topics: barriers and facilitators to implementation; feasibility as a key implementation outcome; the design, selection and adaptation of implementation strategies; and building the foundation for psycho-oncology research translation via systematic reviews that focus on implementation strategy design.
Conclusion: These papers demonstrate the breadth of current applications of implementation science to research in psycho-oncology. Alongside the studies featured in this issue, including cost-effectiveness analyses, tests of nationally-focused strategies and proactive planning for adaptation, we look forward to other innovations that will promote further growth of both disciplines to improve the integration of psycho-oncology interventions across healthcare systems.
{"title":"Implementation science and psycho-oncology: Advancing the translation of evidence into practice.","authors":"Nicole M Rankin, Paul B Jacobsen","doi":"10.1002/pon.6363","DOIUrl":"https://doi.org/10.1002/pon.6363","url":null,"abstract":"<p><strong>Objectives: </strong>This Special issue of Psycho-Oncology highlights examples of the application of implementation science to research in psycho-oncology. The aim is to demonstrate the different ways that implementation science is being used to generate evidence that can more readily translate evidence into changes in clinical practice. We hope this issue fosters greater interest in using the tools of implementation science to improve the lives of people affected by cancer.</p><p><strong>Methods: </strong>The papers in the issue were selected from among those that responded to a call for submissions on the application of implementation science frameworks and methods to issues in psycho-oncology. The focus included but was not limited to research on: understanding barriers and facilitators of intervention/practice adoption; assessing implementation outcomes, evaluating implementation strategies, and improving behavioural and/or clinical outcomes.</p><p><strong>Results: </strong>The 11 papers in this issue were grouped for presentation purposes into four common topics: barriers and facilitators to implementation; feasibility as a key implementation outcome; the design, selection and adaptation of implementation strategies; and building the foundation for psycho-oncology research translation via systematic reviews that focus on implementation strategy design.</p><p><strong>Conclusion: </strong>These papers demonstrate the breadth of current applications of implementation science to research in psycho-oncology. Alongside the studies featured in this issue, including cost-effectiveness analyses, tests of nationally-focused strategies and proactive planning for adaptation, we look forward to other innovations that will promote further growth of both disciplines to improve the integration of psycho-oncology interventions across healthcare systems.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141262782","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
David L Lysecki, Daryl Bainbridge, Tracy Akitt, Georgia Georgiou, Heather McKean, Ralph M Meyer, Jonathan Sussman
Background: Cancer in a loved one can have negative effects on child health and development. Child Life Specialists (CLSs) specialize in assisting children understand and cope with difficult medical scenarios but are generally not available in adult care facilities to support the needs of patient-families with minor children. We conducted a mixed-methods study of the implementation of a pilot CLS program at a tertiary oncology centre.
Methods: We collected administrative and clinical data on referred families; encounter data; and patient-reported questionnaire data before and 2 months after engagement with the program.
Results: Over the initial 10 months, 98 families were referred, 91 of whom engaged through a total of 257 clinical encounters. The cancer patient in the family was most commonly a woman with a mean age of 45 years and in the role of mother. Breast cancer was the most common diagnosis (24%) and 78% of patients had stage IV disease. Most families had >1 child at home, and children were most commonly school-aged (5-14y). Phone and Hospital/Clinic visits accounted for the largest portion of CLS time. Interventions ranged from diagnosis education through to bereavement support. Most cancer patients indicated that the program was helpful to them and their families. There were trends of moderate improvements on patient reported outcomes.
Conclusion: Our study was able to provide an understanding of the initial CLS program operations to guide program development and future study. Such a program holds promise as an important aspect of adult oncology family-centered care.
{"title":"Integration of child life into adult oncology: A mixed-methods feasibility study.","authors":"David L Lysecki, Daryl Bainbridge, Tracy Akitt, Georgia Georgiou, Heather McKean, Ralph M Meyer, Jonathan Sussman","doi":"10.1002/pon.6365","DOIUrl":"10.1002/pon.6365","url":null,"abstract":"<p><strong>Background: </strong>Cancer in a loved one can have negative effects on child health and development. Child Life Specialists (CLSs) specialize in assisting children understand and cope with difficult medical scenarios but are generally not available in adult care facilities to support the needs of patient-families with minor children. We conducted a mixed-methods study of the implementation of a pilot CLS program at a tertiary oncology centre.</p><p><strong>Methods: </strong>We collected administrative and clinical data on referred families; encounter data; and patient-reported questionnaire data before and 2 months after engagement with the program.</p><p><strong>Results: </strong>Over the initial 10 months, 98 families were referred, 91 of whom engaged through a total of 257 clinical encounters. The cancer patient in the family was most commonly a woman with a mean age of 45 years and in the role of mother. Breast cancer was the most common diagnosis (24%) and 78% of patients had stage IV disease. Most families had >1 child at home, and children were most commonly school-aged (5-14y). Phone and Hospital/Clinic visits accounted for the largest portion of CLS time. Interventions ranged from diagnosis education through to bereavement support. Most cancer patients indicated that the program was helpful to them and their families. There were trends of moderate improvements on patient reported outcomes.</p><p><strong>Conclusion: </strong>Our study was able to provide an understanding of the initial CLS program operations to guide program development and future study. Such a program holds promise as an important aspect of adult oncology family-centered care.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141427461","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
ObjectiveIt is widely acknowledged that emotional states can influence skin conditions, yet limited research has delved into the impact of stress on skin cancer development. This retrospective study sought to expand the perspective on skin cancer risk factors by investigating the complex relationship between stressful life events and the incidence of skin cancer.MethodsThe sample included 268 individuals followed‐up in a dermatological clinic, in three groups: Patients who had previously been diagnosed with cutaneous melanoma and are currently in remission (32%), those who had been diagnosed with non‐melanoma skin cancer (30%), and a control group who are at risk for skin cancer (38%). Participants filled in questionnaires regarding childhood and adulthood life events, and loss and gain of resources following their subjectively most stressful event in adulthood. Multinomial logistic regression was used to examine the associations of life events with skin cancer occurrence, and mediating and moderating effects of resource loss/gain.ResultsAdverse childhood experiences were associated with melanoma occurrence, with the melanoma group reporting significantly more such experiences compared to the control group (p < 0.001). Resource loss from subjectively significant stressful life events in adulthood partially mediated the association between adverse childhood experiences and melanoma incidence.ConclusionsThe findings suggest that there may be intricate connections between stress, life events, adaptation to change, and skin cancer, which future research may further unravel. This study underscores the need for a more comprehensive approach to stress management, coping strategies development, and skin cancer prevention in healthcare settings.
{"title":"Stressful life events and the occurrence of skin cancer","authors":"Noa Shidlo, Aneta Lazarov, Yael Benyamini","doi":"10.1002/pon.6343","DOIUrl":"https://doi.org/10.1002/pon.6343","url":null,"abstract":"ObjectiveIt is widely acknowledged that emotional states can influence skin conditions, yet limited research has delved into the impact of stress on skin cancer development. This retrospective study sought to expand the perspective on skin cancer risk factors by investigating the complex relationship between stressful life events and the incidence of skin cancer.MethodsThe sample included 268 individuals followed‐up in a dermatological clinic, in three groups: Patients who had previously been diagnosed with cutaneous melanoma and are currently in remission (32%), those who had been diagnosed with non‐melanoma skin cancer (30%), and a control group who are at risk for skin cancer (38%). Participants filled in questionnaires regarding childhood and adulthood life events, and loss and gain of resources following their subjectively most stressful event in adulthood. Multinomial logistic regression was used to examine the associations of life events with skin cancer occurrence, and mediating and moderating effects of resource loss/gain.ResultsAdverse childhood experiences were associated with melanoma occurrence, with the melanoma group reporting significantly more such experiences compared to the control group (<jats:italic>p</jats:italic> < 0.001). Resource loss from subjectively significant stressful life events in adulthood partially mediated the association between adverse childhood experiences and melanoma incidence.ConclusionsThe findings suggest that there may be intricate connections between stress, life events, adaptation to change, and skin cancer, which future research may further unravel. This study underscores the need for a more comprehensive approach to stress management, coping strategies development, and skin cancer prevention in healthcare settings.","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-05-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140839342","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Rebecca J. Bergin, Anna Ashley, Jodie Hardstaff, Victoria White
ObjectiveColorectal cancer (CRC) incidence is rising among adults under the age of 50 (early‐ or young‐onset CRC). This population is more likely to have advanced‐stage disease at diagnosis, suggesting their diagnostic pathway may be prolonged. To better understand factors influencing this pathway, this study explored patients' experiences of decision‐making during a diagnosis of young‐onset CRC.MethodsSemi‐structured interviews were conducted with 17 participants with young‐onset CRC diagnosed in 2021–2022 in Victoria, Australia. Interviews were conducted online or by phone an average 7 months (range 1–13) after diagnosis. Analysis was approached from a critical realist perspective, with themes developed inductively using reflexive thematic analysis.ResultsFive themes were identified: Shifting Perception of Urgency, Multidimensional Perception of Role, Making the Most of Resources, Stage of Life, and COVID Adds Complexity. Participants' decision‐making evolved over the diagnostic period. As participants perceived urgency to act, they took on a more active role in decision‐making, utilising personal resources to access timely care. Their decisions were shaped by stage‐of‐life considerations, including employment and caring for a young family, with the COVID‐19 pandemic adding “…a whole other layer of complexity” to the process.ConclusionsYounger adults with CRC make decisions in the context of unique considerations, adapting to reduce time to diagnosis, with decisions complicated by the COVID‐19 pandemic. Greater support from health care providers/systems in the diagnostic period may improve timeliness of CRC diagnosis and outcomes in younger adults.
{"title":"“Too young to have this kind of diagnosis”: A qualitative exploration of younger adults' experiences of colorectal cancer diagnosis","authors":"Rebecca J. Bergin, Anna Ashley, Jodie Hardstaff, Victoria White","doi":"10.1002/pon.6344","DOIUrl":"https://doi.org/10.1002/pon.6344","url":null,"abstract":"ObjectiveColorectal cancer (CRC) incidence is rising among adults under the age of 50 (early‐ or young‐onset CRC). This population is more likely to have advanced‐stage disease at diagnosis, suggesting their diagnostic pathway may be prolonged. To better understand factors influencing this pathway, this study explored patients' experiences of decision‐making during a diagnosis of young‐onset CRC.MethodsSemi‐structured interviews were conducted with 17 participants with young‐onset CRC diagnosed in 2021–2022 in Victoria, Australia. Interviews were conducted online or by phone an average 7 months (range 1–13) after diagnosis. Analysis was approached from a critical realist perspective, with themes developed inductively using reflexive thematic analysis.ResultsFive themes were identified: Shifting Perception of Urgency, Multidimensional Perception of Role, Making the Most of Resources, Stage of Life, and COVID Adds Complexity. Participants' decision‐making evolved over the diagnostic period. As participants perceived urgency to act, they took on a more active role in decision‐making, utilising personal resources to access timely care. Their decisions were shaped by stage‐of‐life considerations, including employment and caring for a young family, with the COVID‐19 pandemic adding “…a whole other layer of complexity” to the process.ConclusionsYounger adults with CRC make decisions in the context of unique considerations, adapting to reduce time to diagnosis, with decisions complicated by the COVID‐19 pandemic. Greater support from health care providers/systems in the diagnostic period may improve timeliness of CRC diagnosis and outcomes in younger adults.","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-05-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140838988","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Jana Maria Heinen, Ebba Magdalena Laing, Norbert Schäffeler, Alexander Bäuerle, Julia Barbara Krakowczyk, Caterina Schug, Stefanie Katharina Ziesemer, Martin Teufel, Yesim Erim, Stephan Zipfel, Andreas Stengel, Johanna Graf
Objective: The purpose of this study was to review the existing quantitative and qualitative evidence regarding how mindfulness-based interventions (MBIs) help cope with cancer-related challenges and increase affected patients' perceived self-efficacy.
Methods: A systematic literature search was conducted on PubMed, PsycInfo, PubPsych, and CINAHL. Quantitative, qualitative, and mixed methods studies were included if they (1) evaluated MBIs (2) for patients with cancer or cancer survivors (3) regarding their impact on coping with cancer and perceived self-efficacy. The reports were screened by two independent reviewers and conflicts were resolved by a third reviewer. The review was pre-registered on PROSPERO (CRD42022368765).
Results: Findings from 28 reports of 19 quantitative studies, six qualitative studies, and three mixed-methods studies (total N = 1722) were extracted and integrated. The synthesis of quantitative data showed considerable heterogeneity in outcomes and measurement instruments. Most often reported were significant positive impacts of mindfulness on general coping skills, self-regulation, and perceived efficacy in coping with cancer. Qualitative interviews with patients supported those results. The three meta-themes identified were that MBI (1) provided patients with tools to use in stressful situations, (2) promoted a general change of mindset and (3) created a feeling of social connectedness.
Conclusions: The reviewed studies suggest that MBI can promote coping and enhance the perceived self-efficacy of patients with cancer. In the future, more research investigating the different aspects of coping and the potentially moderating role of self-efficacy could provide further insights with respect to how coping and self-efficacy related to MBI.
{"title":"How do mindfulness-based interventions promote coping and self-efficacy in patients with cancer: A systematic review of qualitative and quantitative data.","authors":"Jana Maria Heinen, Ebba Magdalena Laing, Norbert Schäffeler, Alexander Bäuerle, Julia Barbara Krakowczyk, Caterina Schug, Stefanie Katharina Ziesemer, Martin Teufel, Yesim Erim, Stephan Zipfel, Andreas Stengel, Johanna Graf","doi":"10.1002/pon.6350","DOIUrl":"10.1002/pon.6350","url":null,"abstract":"<p><strong>Objective: </strong>The purpose of this study was to review the existing quantitative and qualitative evidence regarding how mindfulness-based interventions (MBIs) help cope with cancer-related challenges and increase affected patients' perceived self-efficacy.</p><p><strong>Methods: </strong>A systematic literature search was conducted on PubMed, PsycInfo, PubPsych, and CINAHL. Quantitative, qualitative, and mixed methods studies were included if they (1) evaluated MBIs (2) for patients with cancer or cancer survivors (3) regarding their impact on coping with cancer and perceived self-efficacy. The reports were screened by two independent reviewers and conflicts were resolved by a third reviewer. The review was pre-registered on PROSPERO (CRD42022368765).</p><p><strong>Results: </strong>Findings from 28 reports of 19 quantitative studies, six qualitative studies, and three mixed-methods studies (total N = 1722) were extracted and integrated. The synthesis of quantitative data showed considerable heterogeneity in outcomes and measurement instruments. Most often reported were significant positive impacts of mindfulness on general coping skills, self-regulation, and perceived efficacy in coping with cancer. Qualitative interviews with patients supported those results. The three meta-themes identified were that MBI (1) provided patients with tools to use in stressful situations, (2) promoted a general change of mindset and (3) created a feeling of social connectedness.</p><p><strong>Conclusions: </strong>The reviewed studies suggest that MBI can promote coping and enhance the perceived self-efficacy of patients with cancer. In the future, more research investigating the different aspects of coping and the potentially moderating role of self-efficacy could provide further insights with respect to how coping and self-efficacy related to MBI.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141082094","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Melissa Henry, Chioma Asuzu, Sabrina Savard, Cyril Devault-Tousignant, Sydney Timmermans, Katrina Khosravi, Amina Amin, Justine Albert, Tara Krochmalnek, Phillip Odiyo, Elizabeth Oluwatoyin Akin-Odanye, Joyce Terwase, David Lounsbury, Scott Nichols, Sharon Nichols, Charles Palmer
Objective: Low and middle income countries of Africa account for a disproportionate amount of the global health burden of cancer. Providing patients access to psychosocial oncology and palliative care through policy structures such as the National Cancer Control Plans (NCCP) is essential to improving the care provided to patients and their families. The first phase of this study sought to determine the extent to which palliative care and psychosocial oncology were integrated in NCCPs in African countries.
Methods: A qualitative thematic analysis of the plans was used using Nvivo, with two-raters coding and continuous team discussions. Data were organized into an infographic map showing the coverage of themes across African countries.
Results: Fifty-eight NCCPs and NCD plans were analyzed in the 54 countries in Africa. The findings illustrate a lack of standardization across countries' NCCPs in addressing psychosocial oncology and palliative care themes. Certain areas presented good coverage across several plans, such as barriers to access, education, awareness, and health behaviors, coordination of care, families, caregivers and community involvement, and palliative care. Other themes presented low coverage, such as doctor-patient communication, mental health, bereavement, psychosocial care, survivorship care, and traditional medicine.
Conclusions: One may consider further developing NCCP areas as they pertain to psychosocial oncology and palliative care to ensure their proper place on the policy agenda for a healthier Africa.
{"title":"Psychosocial and palliative care in African national cancer control plans: A qualitative study.","authors":"Melissa Henry, Chioma Asuzu, Sabrina Savard, Cyril Devault-Tousignant, Sydney Timmermans, Katrina Khosravi, Amina Amin, Justine Albert, Tara Krochmalnek, Phillip Odiyo, Elizabeth Oluwatoyin Akin-Odanye, Joyce Terwase, David Lounsbury, Scott Nichols, Sharon Nichols, Charles Palmer","doi":"10.1002/pon.6346","DOIUrl":"10.1002/pon.6346","url":null,"abstract":"<p><strong>Objective: </strong>Low and middle income countries of Africa account for a disproportionate amount of the global health burden of cancer. Providing patients access to psychosocial oncology and palliative care through policy structures such as the National Cancer Control Plans (NCCP) is essential to improving the care provided to patients and their families. The first phase of this study sought to determine the extent to which palliative care and psychosocial oncology were integrated in NCCPs in African countries.</p><p><strong>Methods: </strong>A qualitative thematic analysis of the plans was used using Nvivo, with two-raters coding and continuous team discussions. Data were organized into an infographic map showing the coverage of themes across African countries.</p><p><strong>Results: </strong>Fifty-eight NCCPs and NCD plans were analyzed in the 54 countries in Africa. The findings illustrate a lack of standardization across countries' NCCPs in addressing psychosocial oncology and palliative care themes. Certain areas presented good coverage across several plans, such as barriers to access, education, awareness, and health behaviors, coordination of care, families, caregivers and community involvement, and palliative care. Other themes presented low coverage, such as doctor-patient communication, mental health, bereavement, psychosocial care, survivorship care, and traditional medicine.</p><p><strong>Conclusions: </strong>One may consider further developing NCCP areas as they pertain to psychosocial oncology and palliative care to ensure their proper place on the policy agenda for a healthier Africa.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140923023","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Jesse Lemmen, Susan Mageto, Festus Njuguna, Nancy Midiwo, Terry A Vik, Gertjan Kaspers, Saskia Mostert
Objectives: Childhood cancer survivors' social reintegration may be hampered in low and middle-income countries. The nature and extent of social challenges and prejudices that survivors encounter in such settings are largely unknown. This study explores caregivers' perspectives on social reintegration and stigmatization of Kenyan childhood cancer survivors.
Methods: Caretakers of childhood cancer survivors (<18 years) were interviewed using mixed-methods questionnaires during home or clinic visits between 2021 and 2022. Stigma was assessed with an adjusted Social Impact Scale and risk factors were investigated.
Results: Caretakers of 54 survivors (median age 11 years) were interviewed. Families' income (93%) decreased since start of treatment. Caretakers (44%) often lost their jobs. Financial struggles (88%) were a burden that provoked conflicts within communities (31%). School fees for siblings became unaffordable (52%). Families received negative responses (26%) and were left or avoided (13%) by community members after cancer disclosure. Survivors and families were discriminated against because the child was perceived fragile, and cancer was considered fatal, contagious, or witchcraft. Survivors repeated school levels (58%) and were excluded from school activities (19%) or bullied (13%). Performance limitations of daily activities (p = 0.019), male sex (p = 0.032), solid tumors (p = 0.056) and a short time since treatment completion (p = 0.047) were associated with increased stigma. Caretakers recommended educational programs in schools and communities to raise awareness about cancer treatment and curability.
Conclusions: Childhood cancer survivors and their families experienced difficulties with re-entry and stigmatization in society. Increasing cancer and survivorship awareness in schools and communities should facilitate social reintegration and prevent stigmatization.
{"title":"A caregivers' perspective on social reintegration and stigma of childhood cancer survivors in Kenya.","authors":"Jesse Lemmen, Susan Mageto, Festus Njuguna, Nancy Midiwo, Terry A Vik, Gertjan Kaspers, Saskia Mostert","doi":"10.1002/pon.6345","DOIUrl":"https://doi.org/10.1002/pon.6345","url":null,"abstract":"<p><strong>Objectives: </strong>Childhood cancer survivors' social reintegration may be hampered in low and middle-income countries. The nature and extent of social challenges and prejudices that survivors encounter in such settings are largely unknown. This study explores caregivers' perspectives on social reintegration and stigmatization of Kenyan childhood cancer survivors.</p><p><strong>Methods: </strong>Caretakers of childhood cancer survivors (<18 years) were interviewed using mixed-methods questionnaires during home or clinic visits between 2021 and 2022. Stigma was assessed with an adjusted Social Impact Scale and risk factors were investigated.</p><p><strong>Results: </strong>Caretakers of 54 survivors (median age 11 years) were interviewed. Families' income (93%) decreased since start of treatment. Caretakers (44%) often lost their jobs. Financial struggles (88%) were a burden that provoked conflicts within communities (31%). School fees for siblings became unaffordable (52%). Families received negative responses (26%) and were left or avoided (13%) by community members after cancer disclosure. Survivors and families were discriminated against because the child was perceived fragile, and cancer was considered fatal, contagious, or witchcraft. Survivors repeated school levels (58%) and were excluded from school activities (19%) or bullied (13%). Performance limitations of daily activities (p = 0.019), male sex (p = 0.032), solid tumors (p = 0.056) and a short time since treatment completion (p = 0.047) were associated with increased stigma. Caretakers recommended educational programs in schools and communities to raise awareness about cancer treatment and curability.</p><p><strong>Conclusions: </strong>Childhood cancer survivors and their families experienced difficulties with re-entry and stigmatization in society. Increasing cancer and survivorship awareness in schools and communities should facilitate social reintegration and prevent stigmatization.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140865157","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Christopher D Graham, Rachel Ellison, Louise H Hall, Jane Clark, Emma McNaught, Sophie M C Green, Hollie Wilkes, Gita Robson, Ian Lorentz, Lucy Holmes, Nicky Bould, Suzanne Hartley, Jay Naik, Sarah Buckley, Charlotte Hirst, Sue Hartup, Robbie Foy, Richard D Neal, Galina Velikova, Amanda Farrin, Michelle Collinson, Samuel G Smith
Objective: Non-adherence to adjuvant endocrine therapy (AET) in women with breast cancer is common and associated with medication side-effects and distress. We co-designed an Acceptance and Commitment Therapy intervention (ACTION) to enhance medication decision-making and quality of life (QoL). We undertook a pilot trial of ACTION to inform the feasibility of a phase III trial, and to examine intervention acceptability.
Methods: This was a multi-site, exploratory, two-arm, individually randomised external pilot trial. Women with early breast cancer prescribed AET were randomised (1:1) to receive usual care (UC) or UC + ACTION. The ACTION intervention comprised a remotely delivered one-to-one ACT session followed by three group sessions delivered by clinical psychologists, alongside a website containing ideas for the self-management of side effects.
Results: Of the 480 women screened for eligibility, 260 (54.2%) were approached and 79 (30.4%) randomised. 71 (89.9%) women provided data at 3-month and 70 (88.6%) at 6-month 40 women were randomised to receive UC + ACTION and 32 (80.0%) completed the intervention. Most (75.0%) accessed the website at least once. ACTION was acceptable to participants (Borkovec & Nau Scale: mean = 7.8 [SD = 2.7] out of 10). Signals of effectiveness in favour of the UC + ACTION arm were observed for medication adherence (Adherence Starts with Knowledge questionnaire-12), QoL (work and social adjustment scale), health-related QoL (functional assessment of cancer therapy[FACT] general and FACT-ES-19/23), distress (generalised anxiety disorder -7, patient health questionnaire-9) and psychological flexibility (valuing questionnaire).
Conclusions: The ACTION intervention was acceptable to patients. There were promising signals for effectiveness on primary and secondary outcomes. A phase III randomised controlled trial is feasible.
{"title":"A pilot randomised controlled trial of acceptance and commitment therapy for medication decision-making and quality of life in women with breast cancer: The ACTION trial.","authors":"Christopher D Graham, Rachel Ellison, Louise H Hall, Jane Clark, Emma McNaught, Sophie M C Green, Hollie Wilkes, Gita Robson, Ian Lorentz, Lucy Holmes, Nicky Bould, Suzanne Hartley, Jay Naik, Sarah Buckley, Charlotte Hirst, Sue Hartup, Robbie Foy, Richard D Neal, Galina Velikova, Amanda Farrin, Michelle Collinson, Samuel G Smith","doi":"10.1002/pon.6349","DOIUrl":"10.1002/pon.6349","url":null,"abstract":"<p><strong>Objective: </strong>Non-adherence to adjuvant endocrine therapy (AET) in women with breast cancer is common and associated with medication side-effects and distress. We co-designed an Acceptance and Commitment Therapy intervention (ACTION) to enhance medication decision-making and quality of life (QoL). We undertook a pilot trial of ACTION to inform the feasibility of a phase III trial, and to examine intervention acceptability.</p><p><strong>Methods: </strong>This was a multi-site, exploratory, two-arm, individually randomised external pilot trial. Women with early breast cancer prescribed AET were randomised (1:1) to receive usual care (UC) or UC + ACTION. The ACTION intervention comprised a remotely delivered one-to-one ACT session followed by three group sessions delivered by clinical psychologists, alongside a website containing ideas for the self-management of side effects.</p><p><strong>Results: </strong>Of the 480 women screened for eligibility, 260 (54.2%) were approached and 79 (30.4%) randomised. 71 (89.9%) women provided data at 3-month and 70 (88.6%) at 6-month 40 women were randomised to receive UC + ACTION and 32 (80.0%) completed the intervention. Most (75.0%) accessed the website at least once. ACTION was acceptable to participants (Borkovec & Nau Scale: mean = 7.8 [SD = 2.7] out of 10). Signals of effectiveness in favour of the UC + ACTION arm were observed for medication adherence (Adherence Starts with Knowledge questionnaire-12), QoL (work and social adjustment scale), health-related QoL (functional assessment of cancer therapy[FACT] general and FACT-ES-19/23), distress (generalised anxiety disorder -7, patient health questionnaire-9) and psychological flexibility (valuing questionnaire).</p><p><strong>Conclusions: </strong>The ACTION intervention was acceptable to patients. There were promising signals for effectiveness on primary and secondary outcomes. A phase III randomised controlled trial is feasible.</p><p><strong>Trial registration: </strong>ISRCTN12027752.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140945721","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Background: Pediatric cancer patients' oncology teams regularly take on a primary care role, but due to the urgent nature of cancer treatment, developmental screenings may be deprioritized. This leaves patients at risk of developmental diagnoses and referrals being delayed.
Aims: Clarify the current developmental surveillance and screening practices of one pediatric oncology team.
Materials and methods: Researchers reviewed charts for patients (n = 66) seen at a pediatric oncology clinic in a suburban academic medical center to determine engagement in developmental screening (including functioning around related areas such as speech, neurocognition, etc.) and referrals for care in these areas.
Results: Developmental histories were collected from all patients through admission history and physical examination (H&P), but there was no routinized follow-up. Physicians did not conduct regular developmental screening per American Academy of Pediatrics guidelines for any patients but identified n = 3 patients with needs while the psychology team routinely surveilled all patients seen during this time (n = 41) and identified n = 18 patients as having delays.
Discussion: Physicians did not routinely screen for development needs beyond H&P and were inconsistent in developmental follow-up/referrals. Integrated psychologists were key in generating referrals for developmental-based care. However, many oncology patients were not seen by psychologists quickly or at all, creating a significant gap in care during a crucial developmental period.
Conclusion: The case is made for further routinization of ongoing developmental screening in pediatric oncology care.
背景:小儿癌症患者的肿瘤团队经常承担初级护理的角色,但由于癌症治疗的紧迫性,发育筛查可能被置于次要地位。目的:澄清一个儿科肿瘤团队目前的发育监测和筛查做法:研究人员查阅了在郊区学术医疗中心儿科肿瘤诊所就诊的患者(n = 66)的病历,以确定患者是否参与了发育筛查(包括语言、神经认知等相关领域的功能)以及这些领域的转诊情况:结果:通过入院病史和体格检查(H&P)收集了所有患者的发育史,但没有进行常规随访。医生没有按照美国儿科学会的指南对任何患者进行定期发育筛查,但发现了 n = 3 名有需要的患者,而心理小组对这段时间内接诊的所有患者(n = 41)进行了常规调查,发现 n = 18 名患者有发育迟缓:讨论:除了 H&P 外,医生没有对发育需求进行常规筛查,在发育随访/转诊方面也不一致。综合心理学家在转介发育护理方面发挥了关键作用。然而,许多肿瘤患者并没有很快或根本没有得到心理学家的诊治,从而在关键的发育期造成了严重的护理空白:结论:在儿科肿瘤治疗中,应进一步将持续的发育筛查常规化。
{"title":"Developmental surveillance and screening practices in a pediatric oncology clinic: Initial progress of a quality improvement study.","authors":"Lila M Pereira, Madeline H Bono, Samuel Hilbert","doi":"10.1002/pon.6348","DOIUrl":"https://doi.org/10.1002/pon.6348","url":null,"abstract":"<p><strong>Background: </strong>Pediatric cancer patients' oncology teams regularly take on a primary care role, but due to the urgent nature of cancer treatment, developmental screenings may be deprioritized. This leaves patients at risk of developmental diagnoses and referrals being delayed.</p><p><strong>Aims: </strong>Clarify the current developmental surveillance and screening practices of one pediatric oncology team.</p><p><strong>Materials and methods: </strong>Researchers reviewed charts for patients (n = 66) seen at a pediatric oncology clinic in a suburban academic medical center to determine engagement in developmental screening (including functioning around related areas such as speech, neurocognition, etc.) and referrals for care in these areas.</p><p><strong>Results: </strong>Developmental histories were collected from all patients through admission history and physical examination (H&P), but there was no routinized follow-up. Physicians did not conduct regular developmental screening per American Academy of Pediatrics guidelines for any patients but identified n = 3 patients with needs while the psychology team routinely surveilled all patients seen during this time (n = 41) and identified n = 18 patients as having delays.</p><p><strong>Discussion: </strong>Physicians did not routinely screen for development needs beyond H&P and were inconsistent in developmental follow-up/referrals. Integrated psychologists were key in generating referrals for developmental-based care. However, many oncology patients were not seen by psychologists quickly or at all, creating a significant gap in care during a crucial developmental period.</p><p><strong>Conclusion: </strong>The case is made for further routinization of ongoing developmental screening in pediatric oncology care.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140909127","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Eme O Asuquo, Kate Absolom, Bassey Ebenso, Mathew J Allsop
Objective: A mixed-methods systematic review to determine reported symptoms, concerns, and experiences of women living with and beyond breast cancer in Africa.
Methods: Literature searches were conducted in Medline, Embase, PsycINFO, Global Health, Web of Science, CINAHL, and the Cochrane Library. Quantitative and qualitative studies that comprised study populations of women with breast cancer from countries in Africa, detailing symptoms, concerns, and experiences of living with and beyond breast cancer were included. Inductive framework analysis was applied to organise existing literature with the Adversity, Restoration, and Compatibility framework and quality was assessed using the Mixed Methods Appraisal Tool.
Results: In total, 48 studies were included, comprising quantitative (n = 24), qualitative (n = 23) and mixed method (n = 1) studies. Women reported multiple complex and burdensome symptoms at all stages of the breast cancer disease trajectory. Multiple pervasive factors influencing participants' experiences included a lack of cancer knowledge, being removed from decision-making, religion, and the presence and use of traditional medicines. Literature relating to benefit finding, understanding identity for the future, and broader perspectives of well-being was absent.
Conclusions: This review contributes insights and mapping of symptoms, concerns, and experiences of women with breast cancer in Africa. There is a great necessity to increase an understanding of the needs and experiences of women with breast cancer in Africa following cancer treatment, stages of remission, and longer-term monitoring and follow-up. This is required to ensure access to prompt and timely clinical and individualized supportive care for women with breast cancer in Africa.
{"title":"Symptoms, concerns, and experiences of women living with and beyond breast cancer in Africa: A mixed-methods systematic review.","authors":"Eme O Asuquo, Kate Absolom, Bassey Ebenso, Mathew J Allsop","doi":"10.1002/pon.6342","DOIUrl":"10.1002/pon.6342","url":null,"abstract":"<p><strong>Objective: </strong>A mixed-methods systematic review to determine reported symptoms, concerns, and experiences of women living with and beyond breast cancer in Africa.</p><p><strong>Methods: </strong>Literature searches were conducted in Medline, Embase, PsycINFO, Global Health, Web of Science, CINAHL, and the Cochrane Library. Quantitative and qualitative studies that comprised study populations of women with breast cancer from countries in Africa, detailing symptoms, concerns, and experiences of living with and beyond breast cancer were included. Inductive framework analysis was applied to organise existing literature with the Adversity, Restoration, and Compatibility framework and quality was assessed using the Mixed Methods Appraisal Tool.</p><p><strong>Results: </strong>In total, 48 studies were included, comprising quantitative (n = 24), qualitative (n = 23) and mixed method (n = 1) studies. Women reported multiple complex and burdensome symptoms at all stages of the breast cancer disease trajectory. Multiple pervasive factors influencing participants' experiences included a lack of cancer knowledge, being removed from decision-making, religion, and the presence and use of traditional medicines. Literature relating to benefit finding, understanding identity for the future, and broader perspectives of well-being was absent.</p><p><strong>Conclusions: </strong>This review contributes insights and mapping of symptoms, concerns, and experiences of women with breast cancer in Africa. There is a great necessity to increase an understanding of the needs and experiences of women with breast cancer in Africa following cancer treatment, stages of remission, and longer-term monitoring and follow-up. This is required to ensure access to prompt and timely clinical and individualized supportive care for women with breast cancer in Africa.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140923027","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}