RESUMO
Distress management (DM) (screening and response) is an essential component of cancer care across the treatment trajectory. Effective DM has many benefits, including improving patients' quality of life; reducing distress, anxiety, and depression; contributing to medical cost offsets; and reducing emergency department visits and hospitalizations. Unfortunately, many distressed patients do not receive needed services. There are several multilevel barriers that represent key challenges to DM and affect its implementation. The Consolidated Framework for Implementation Research was used as an organizational structure to outline the barriers and facilitators to implementation of DM, including: 1) individual characteristics (individual patient characteristics with a focus on groups who may face unique barriers to distress screening and linkage to services), 2) intervention (unique aspects of DM intervention, including specific challenges in screening and psychosocial intervention, with recommendations for resolving these challenges), 3) processes for implementation of DM (modality and timing of screening, the challenge of triage for urgent needs, and incorporation of patient-reported outcomes and quality measures), 4) organization-inner setting (the context of the clinic, hospital, or health care system); and 5) organization-outer setting (including reimbursement strategies and health-care policy). Specific recommendations for evidence-based strategies and interventions for each of the domains of the Consolidated Framework for Implementation Research are also included to address barriers and challenges.
Assuntos
Atenção à Saúde/normas , Programas de Rastreamento/normas , Serviços de Saúde Mental , Neoplasias/psicologia , Angústia Psicológica , Estresse Psicológico , Atenção à Saúde/organização & administração , Acessibilidade aos Serviços de Saúde/organização & administração , Acessibilidade aos Serviços de Saúde/normas , Disparidades em Assistência à Saúde , Humanos , Programas de Rastreamento/organização & administração , Serviços de Saúde Mental/organização & administração , Serviços de Saúde Mental/normas , Neoplasias/complicações , Medidas de Resultados Relatados pelo Paciente , Estresse Psicológico/diagnóstico , Estresse Psicológico/etiologia , Estresse Psicológico/terapiaRESUMO
PURPOSE: Body image is a major psychosocial concern for all cancer patients but can affect the adolescent and young adult (AYA) population in distinct ways. Similarly, the prospect of infertility and the fertility preservation process can create additional stress during cancer treatment. Discussions regarding infertility inherently implicate the body and its reproductive function, but downstream effects on self-perception have not been previously described. The aim of this study was to explore the experiences of AYAs as they considered their risk of infertility and options for fertility preservation (FP), specifically the ways in which this impacted body image and FP decision-making. METHODS: AYA cancer patients (n = 27) aged 12-25 years whose cancer and treatment conferred risk of infertility were recruited through electronic health record query at an NCI-Designated Comprehensive Cancer Center. Participants completed semi-structured interviews, which were recorded, transcribed, and deductively coded for themes related to information needs, knowledge of treatment effects on fertility, and reproductive concerns after cancer. Emergent, inductive themes related to body image were identified. RESULTS: Body image concerns, related to both physical appearance and body functioning emerged. Common concerns included anticipating change as it pertains to the body and its functions, physical discomfort, fear of judgment, and meeting expectations of the body. While these themes are broad in nature, they have been previously explored in relation to body image in general and their emergence in the oncofertility space provides guidance for further optimization of infertility and fertility preservation discussions. CONCLUSIONS: AYA cancer patients experience a multitude of body image related disturbances when faced with the possibility of infertility and fertility preservation. In identifying and exploring these themes, future opportunities for improving oncofertility practice and discussions among AYAs with a focus on body image positivity are called upon.
Assuntos
Preservação da Fertilidade , Infertilidade , Neoplasias , Humanos , Adulto Jovem , Adolescente , Preservação da Fertilidade/psicologia , Imagem Corporal , Neoplasias/terapia , Neoplasias/psicologia , Infertilidade/psicologia , MedoRESUMO
INTRODUCTION: Few studies have examined the distinct reproductive concerns (RC) of men and women in the adolescent and young adult (AYA) cancer patient population. The purpose of this mixed-methods study was to explore and differentiate the RC of AYAs. METHODS: Participants completed the Reproductive Concerns After Cancer (RCAC) scale and participated in a semistructured interview. Interviews were deductively coded based on an analytic schema derived from the RCAC. RESULTS: After identifying participants through the electronic health record, 27 younger AYAs, ages 12-25, enrolled in the study. Four inductive themes emerged and differed by gender. These include differential temporality, acceptance, and openness to alternatives, partner influence, and parental/guardian influence. AYA men reported fewer RC (M = 49.4, SD = 9.6) compared to AYA women (M = 56.8, SD = 8.4). CONCLUSIONS: Oncofertility care providers are advised to account for short- and long-ranging concerns based on AYAs' gender. Future evaluations of patient-reported outcome measures specific to AYA RC are recommended.
Assuntos
Neoplasias , Pesquisa Qualitativa , Humanos , Masculino , Feminino , Adolescente , Adulto Jovem , Neoplasias/psicologia , Neoplasias/terapia , Adulto , Criança , Fatores SexuaisRESUMO
OBJECTIVES: Social workers are vital in delivering psychosocial services in palliative care, yet their specific roles in palliative oncology remain undefined. This study aimed to delineate the current practice role of oncology social workers involvement in palliative care in the United States. METHODS: This study utilized a cross-sectional design and involved secondary analysis of data from a nationwide survey focused on workforce conditions for oncology social workers. The participants were social workers who were directly involved in providing care to cancer patients and delivering palliative care services. They completed an online survey in which they indicated the relevance of 91 tasks related to their practice. The survey also collected individual demographic and work-related characteristics. Exploratory factor analysis was used to achieve the study objective. RESULTS: Responses from a secondary data set of 243 oncology social workers involved in palliative care results in a 6-factor solution comprising 34 tasks. These factors were identified as: Therapeutic Interventions for Individuals, Couples, and Families; Facilitate Patient Care Decision-making; Care Coordination; Assessment and Emotional Support; Organization and Community Service; and Equity and Justice. All 6 factors demonstrated good internal reliability, as indicated by Cronbach's alpha scores above 0.70. SIGNIFICANCE OF RESULTS: The findings can be used to develop job descriptions and education for social workers employed in palliative cancer care. The clear role descriptions also make social work visible to other professionals in palliative oncology. By clarifying the roles of oncology social workers, this study contributes to the improvement of palliative care delivery and enhances interprofessional collaboration within cancer care teams.
RESUMO
PURPOSE: To better understand the current salaries and student loan debt levels among oncology social workers (OSWs). DESIGN: Cross-sectional study using online survey. SAMPLE: OSWs across a variety of cancer care settings in the U.S. (n = 1055). METHODS: Salary and debt were collected via single ordinal variables. Crosstabs and chi-square tests were used to examine whether salary and debt differ by demographic and work-related characteristics. FINDINGS: Median OSW salaries ranged from $60,001 to $70,000. Three-fourths of OSWs reported having student loan debt. Younger and recently graduated OSWs and OSWs of color were more likely to have greater student loan debt than their counterparts. CONCLUSIONS: Relative low salary and debt burden have important implications for securing a current and future OSW workforce. IMPLICATIONS FOR PSYCHOSOCIAL POLICY: Adequate reimbursement and loan repayment opportunities for frontline OSWs will better secure this workforce. Advocacy efforts to identify OSWs qualified for loan forgiveness programs are warranted.
Assuntos
Escolha da Profissão , Assistentes Sociais , Humanos , Estudos Transversais , Serviço Social , Salários e Benefícios , Apoio ao Desenvolvimento de Recursos HumanosRESUMO
OBJECTIVES: Technology-assisted Cognitive Behavioral Therapy (tCBT) has significant potentials to provide engaging and accessible depression treatment for adolescents and young adults (AYAs) coping with cancer. This study evaluated the feasibility and preliminary efficacy of an engaging and tailorable tCBT - Mind Your Total Health (MYTH) - for AYA cancer survivors' depression. METHODS: Seventeen AYAs diagnosed with cancer were randomly assigned to either the intervention (MYTH) or control group. The intervention group (n = 10) received eight weekly 30-35 minutes coach-assisted tCBT (MYTH), while the control group (n = 7) received active control, BeatingtheBlues (BtB). RESULTS: Eight out of ten participants in the MYTH group completed at least six out of eight sessions, suggesting strong feasibility (80% completion rate) among AYAs with cancer. Efficacy outcomes indicated that participants in the MYTH group reported significant pre- and post-treatment reduction in depression, t(9) = 5.25, p < 0.001, and anxiety, t(9)=5.07, p < 0.001. Notably, participants in the MYTH group reported significantly lower post-treatment depression than participants in the BtB group, t(15) = 2.40, p < 0.05. The between-group difference reflected a significant between-group treatment effect size, d = 1.12, p < 0.05. DISCUSSION: This engaging, tailorable, and coach-assisted tCBT intervention is promising in alleviating depression and anxiety among AYA cancer survivors. Future research needs to include larger sample size and a more diverse patient population.
Assuntos
Sobreviventes de Câncer , Terapia Cognitivo-Comportamental , Neoplasias , Adolescente , Humanos , Adulto Jovem , Ansiedade/psicologia , Depressão/terapia , Estudos de Viabilidade , Neoplasias/terapia , Neoplasias/psicologia , Projetos PilotoRESUMO
OBJECTIVE: Our knowledge of symptom burden and functioning among adolescent and young adult (AYA; diagnosed ages 15-39) cancer survivors has been hindered by variability in health-related quality of life (HRQOL) measurement associated with developmental and disease heterogeneity among AYAs. We aimed to examine the variability in domain-specific aspects of HRQOL as a function of cancer type and developmental stage to clarify commonalities and differences using the NIH Patient-Reported Outcome Measurement Information System® . METHODS: Five hundred seventy-two AYAs were recruited by an online research panel using stratified sampling (treatment status: on vs. off; developmental stage: adolescents, emerging adults, young adults). Participants completed questionnaires that included sociodemographic characteristics, clinical history, and the adult version of the Patient-Reported Outcomes Measurement Information System® -29 (PROMIS-29). Generalized linear models were run for each HRQOL domain and included treatment status, developmental stage, and cancer type (hematologic vs. solid tumor) and their interactions as independent variables. RESULTS: There were no significant differences in any HRQOL domain by cancer type, and few significant differences were observed in PROMIS domains between developmental groups among on-treatment AYA survivors. In contrast, off-treatment emerging adults and young adults reported significantly higher symptoms and worse functioning compared to adolescents (all ps ≤ 0.003). CONCLUSIONS: AYAs diagnosed in different developmental stages, particularly among off-treatment survivors, experienced diverse constellations of symptoms and functioning, and developmental stage was a more critical predictor of HRQOL than cancer type. These results suggest that supportive care interventions developed for AYA cancer survivors must be tailored and flexible by developmental stage and treatment status.
Assuntos
Sobreviventes de Câncer/psicologia , Qualidade de Vida/psicologia , Adolescente , Sobreviventes de Câncer/estatística & dados numéricos , Humanos , Sistemas de Informação , Masculino , National Institutes of Health (U.S.) , Neoplasias/terapia , Medidas de Resultados Relatados pelo Paciente , Inquéritos e Questionários , Sobreviventes/estatística & dados numéricos , Resultado do Tratamento , Estados Unidos/epidemiologia , Adulto JovemRESUMO
BACKGROUND/PURPOSE: There is much interest in screening for and treating psychosocial distress in cancer patients; however, little is known about if and how psychosocial services are provided for patients demonstrating significant levels of distress. Oncology social workers (OSWs) are the primary providers of psychosocial care for cancer patients and their families, yet there is no widely-used and empirically-validated instrument that captures the range of interventions provided by OSWs. The purpose of this paper is to describe the development of the Oncology Social Work Intervention Index (OSWii), designed to measure interventions provided by OSWs, and the results of testing the instrument. METHODS: We conducted a content analysis of data collected by the Association of Oncology Social Work's Project to Assure Quality Cancer Care (APAQCC). We analyzed 3,194 responses from an open-ended question that described social work interventions following a distress screen. Five investigators coded the data in an iterative process to enhance instrument validity. The resulting instrument measuring OSWii was piloted with 38 oncology social workers across 156 individual cases. RESULTS: OSWs who piloted the OSWii spent a majority of time (72%) engaging in clinical interventions. The user assessment revealed that data entry was rapid, the instrument was easy to use, and the content was relevant to the cancer treatment setting. CONCLUSIONS AND IMPLICATIONS: Using a standardized instrument that reflects OSWs' clinical interventions is critical for researchers to examine the impact of psychosocial interventions on patient outcomes. This index may also advance the translation of scientific findings into patient-centered psychosocial cancer care. This pilot test suggests that the OSWii is both scalable and useful.
Assuntos
Pesquisas sobre Atenção à Saúde , Oncologia , Neoplasias/psicologia , Angústia Psicológica , Serviço Social , Pesquisa Biomédica/organização & administração , Humanos , Neoplasias/terapia , Projetos Piloto , Reprodutibilidade dos TestesRESUMO
The extent to which oncology social workers (OSWs) are available and adapting to disruptions in service delivery throughout the COVID-19 pandemic is unknown.Objectives: The purpose of this report is to outline the initial impact of COVID-19 on oncology social work practice during the first six months of the pandemic.Methods: As part of a nationwide investigation of workforce conditions for OSWs, three professional organizations surveyed their members to assess the effects of COVID-19 on changes to work hours, employment status, work setting, pay, and mode for patient contact (e.g., telephone or videoconference).Findings: Among 939 OSWs, 20% reported a reduction in work hours, and two-thirds indicated a temporary shift in work to home, with most patient contact occurring primarily via telephone or videoconference.Implications: Results speak to the essential nature of oncology social work and the need for evidence to inform OSW training and advocacy efforts for however long the pandemic continues.
Assuntos
COVID-19 , Pessoal de Saúde/estatística & dados numéricos , Neoplasias/reabilitação , Prática Profissional/estatística & dados numéricos , Serviço Social/estatística & dados numéricos , Assistentes Sociais/estatística & dados numéricos , Telemedicina/estatística & dados numéricos , Carga de Trabalho/estatística & dados numéricos , Adulto , Humanos , Psico-Oncologia , Telecomunicações , TelefoneRESUMO
OBJECTIVE: This study investigates barriers and promoters to delivering quality psychosocial services in 58 cancer programs across North America. METHODS: Oncology care providers (n = 2008) participated in a survey in which they identified barriers and promoters for delivering psychosocial care at their respective institutions. Multilevel modeling was used to examine (a) the extent to which provider and institutional characteristics were associated with the most common barriers, and (b) associations between perceived barriers and institutional capacity to deliver psychosocial services as measured by the Cancer Psychosocial Care Matrix. RESULTS: Across 58 Commission on Cancer-accredited programs in North America, the most frequently reported barriers were inadequate number of psychosocial care personnel, lack of funding, inadequate amount of time, lack of systematic procedures, and inadequate training for oncology providers. Overall, there were few significant differences in reported barriers by type of institution or type of provider. In general, the most frequently reported barriers were significantly associated with the institution's capacity to deliver quality psychosocial care. In particular, the lack of a systematic process for psychosocial care delivery significantly predicted lower levels of institutional capacity to deliver quality psychosocial care. CONCLUSIONS: When identifying barriers, respondents reported a greater number of institutional barriers than barriers related to individual provider or patient characteristics. These results present a compelling case for cancer programs to implement and monitor systematic procedures for psychosocial care and to integrate these procedures in routine clinical practice.
Assuntos
Atenção à Saúde/organização & administração , Pessoal de Saúde/psicologia , Mão de Obra em Saúde , Neoplasias/terapia , Reabilitação Psiquiátrica , Qualidade da Assistência à Saúde , Fortalecimento Institucional , Feminino , Humanos , Masculino , Oncologia , Serviços de Saúde Mental , Neoplasias/psicologia , América do Norte , Sistemas de Apoio Psicossocial , Serviço Social , Inquéritos e Questionários , Carga de TrabalhoRESUMO
Routine distress screening in United States oncology clinics has been mandatory since 2015. OBJECTIVE: This study was the first to assess distress in a geographically diverse sample of cancer patients following mandated distress screening implementation by oncology social workers. METHODS: Sites were self-selected via social workers who applied to participate in the Association of Oncology Social Work's Project to Assure Quality Cancer Care, advertised through their social media outlets and conference. Electronic screening records were collected from 55 cancer treatment centers in the United States and Canada. Cases required cancer diagnoses and Distress Thermometer (DT) scores to be included. Distress rates and rates by age, sex, cancer type, and ethnicity were examined. RESULTS: Of 4664 cases, 46% (2157) experienced significant distress (DT score ≥ 4). Being female, age 40-59, and having diagnoses of pancreatic or lung cancer was associated with increased likelihood of distress. Half of cases experience clinically-significant distress, though this need was not evenly distributed across patient or cancer types. CONCLUSION: Identifying those at risk for distress may help inform optimal resource allocation. Methods to address needs of distressed patients in cases of limited resources are discussed.
Assuntos
Neoplasias/psicologia , Estresse Psicológico/epidemiologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Canadá/epidemiologia , Institutos de Câncer , Feminino , Humanos , Masculino , Programas de Rastreamento , Pessoa de Meia-Idade , Neoplasias/terapia , Prevalência , Fatores de Risco , Serviço Social , Estados Unidos/epidemiologia , Adulto JovemRESUMO
BACKGROUND: Cancer-related sexual dysfunction has been reported among adolescents and young adults (AYAs); however, its prevalence over time has not been examined. This longitudinal study investigated sexual dysfunction in AYAs over the course of 2 years after the initial diagnosis. METHODS: Young adult patients (18-39 years old) completed the Medical Outcomes Study Sexual Functioning Scale within the first 4 months of their diagnosis (n = 123) and again 6 (n = 107) and 24 months later (n = 95). An ordered multinomial response model analyzed changes in the probability of reporting sexual dysfunction over time and the independent effects of demographic, clinical, and psychosocial variables. RESULTS: More than half of the participants reported sexual functioning to be problematic at each assessment. The probability of reporting sexual dysfunction increased over time (P < .01) and was greater for cancer patients who were female (P < .001), older (P < .01), married or in a committed relationship (P < .001), treated with chemotherapy (P < .05), and reporting comorbid psychological distress (P < .001) and lower social support (P < .05). For women, being in a relationship increased the likelihood of reporting sexual problems over time; for men, the likelihood of reporting sexual problems increased regardless of their relationship status. CONCLUSIONS: A substantial proportion of young adults report ongoing problems with sexual functioning in the first 2 years after their cancer diagnosis. These findings justify the need to evaluate and monitor sexual functioning throughout a continuum of care. Cancer 2018;124:398-405. © 2017 American Cancer Society.
Assuntos
Neoplasias/psicologia , Comportamento Sexual/psicologia , Adolescente , Adulto , Feminino , Humanos , Estudos Longitudinais , Masculino , Probabilidade , Disfunções Sexuais Fisiológicas/epidemiologia , Disfunções Sexuais Psicogênicas/epidemiologia , Adulto JovemRESUMO
OBJECTIVE: Cancer in adolescents and young adults (AYAs) can interrupt important developmental milestones. Absence from school and time lost from work, together with the physical impacts of treatment on energy and cognition, can disrupt educational and vocational goals. The purpose of this paper is to report on AYA cancer survivors' experiences of reintegration into school and/or work and to describe perceived changes in their educational and vocational goals. METHODS: Adolescents and young adults recruited from 7 hospitals in Australia, aged 15 to 26 years and ≤24 months posttreatment, were interviewed using the psychosocial adjustment to illness scale. Responses were analysed to determine the extent of, and explanations for, cancer's effect on school/work. RESULTS: Forty-two AYA cancer survivors (50% female) participated. Compared with their previous vocational functioning, 12 (28.6%) were scored as experiencing mild impairment, 14 (33.3%) moderate impairment, and 3 (7.1%) marked impairment. Adolescents and young adults described difficulties reintegrating to school/work as a result of cognitive impacts such as concentration problems and physical impacts of their treatment, including fatigue. Despite these reported difficulties, the majority indicated that their vocation goals were of equal or greater importance than before diagnosis (26/42; 62%), and most AYAs did not see their performance as compromised (23/42; 55%). Many survivors described a positive shift in life goals and priorities. The theme of goal conflict emerged where AYAs reported compromised abilities to achieve their goals. CONCLUSIONS: The physical and cognitive impacts of treatment can make returning to school/work challenging for AYA cancer survivors. Adolescents and young adults experiencing difficulties may benefit from additional supports to facilitate meaningful engagement with their chosen educational/vocational goals.
Assuntos
Sobreviventes de Câncer/psicologia , Neoplasias/psicologia , Qualidade de Vida , Retorno ao Trabalho/psicologia , Adolescente , Austrália , Feminino , Humanos , Masculino , Neoplasias/terapia , Ocupações , Adulto JovemRESUMO
In 2014, the Association for Oncology Social Work (AOSW) established A Project to Assure Quality Cancer Care (APAQCC), a group of oncology social workers representing sixty-five Commission on Cancer (CoC)-accredited cancer programs across the US (including two in Canada). Its aims were (1) to examine the capacity of cancer programs to provide quality psychosocial support services, and (2) to evaluate the implementation of distress screening. The purpose of this paper is to describe how this collaborative research program was created and implemented under the auspices of AOSW, and to report on its impact on the oncology social workers who participated.
Assuntos
Neoplasias/terapia , Garantia da Qualidade dos Cuidados de Saúde/organização & administração , Serviço Social , Humanos , Neoplasias/psicologia , Psico-Oncologia , Sociedades Médicas , Estados UnidosRESUMO
Background: This study examined the extent to which cancer programs demonstrated adherence to their own prescribed screening protocol, and whether adherence to that protocol was associated with medical service utilization. The hypothesis is that higher rates of service utilization are associated with lower rates of adherence to screening protocols. Methods: Oncology social workers at Commission on Cancer-accredited cancer programs reviewed electronic health records (EHRs) in their respective cancer programs during a 2-month period in 2014. Rates of overall adherence to a prescribed distress screening protocol were calculated based on documentation in the EHR that screening adherence and an appropriate clinical response had occurred. We examined documentation of emergency department (ED) use and hospitalization within 2 months after the screening visit. Results: Review of 8,409 EHRs across 55 cancer centers indicated that the overall adherence rate to screening protocols was 62.7%. The highest rates of adherence were observed in Community Cancer Programs (76.3%) and the lowest rates were in NCI-designated Cancer Centers (43.3%). Rates of medical service utilization were significantly higher than expected when overall protocol adherence was lacking. After controlling for patient and institutional characteristics, risk ratios for ED use (0.82) and hospitalization (0.81) suggest that when overall protocol adherence was documented, 18% to 19% fewer patients used these medical services. Conclusions: The observed associations between a mandated psychosocial care protocol and medical service utilization suggest opportunities for operational efficiencies and costs savings. Further investigations of protocol integrity, as well as the clinical care models by which psychosocial care is delivered, are warranted.
Assuntos
Adesão à Medicação , Neoplasias/epidemiologia , Neoplasias/psicologia , Aceitação pelo Paciente de Cuidados de Saúde , Padrões de Prática Médica , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Adesão à Medicação/estatística & dados numéricos , Pessoa de Meia-Idade , Razão de Chances , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Padrões de Prática Médica/estatística & dados numéricos , Adulto JovemRESUMO
OBJECTIVE: This cohort study examined the impact of cancer on sexual function and intimate relationships in adolescents and young adults (AYAs). We also explored factors predicting an increased likelihood that cancer had negatively affected these outcomes. METHODS: Participants (n = 465, ages 15-39) in the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study completed two surveys approximately 1 and 2 years post-cancer diagnosis. We used multivariable logistic regression to determine factors negatively affected by perceptions of sexual function at 2 years post-diagnosis. RESULTS: Forty-nine percent of AYAs reported negative effects on sexual function at 1 year post-cancer diagnosis and 70% of those persisted in their negative perceptions 2 years after diagnosis. Those reporting a negative impact at 2 years were more likely to be 25 years or older (OR, 2.53; 95% CI, 1.44-4.42), currently not raising children (OR, 1.81; 95% CI, 1.06-3.08), experiencing fatigue (OR, 0.99; 95% CI, 0.975-0.998) and more likely to report that their diagnosis has had a negative effect on physical appearance (OR, 3.08; 95% CI, 1.97-4.81). Clinical factors and mental health were not significant predictors of negative effects on sexual function. CONCLUSIONS: Many AYAs diagnosed with cancer experience a persistent negative impact on sexual life up to 2 years following diagnosis. The findings underscore the need to develop routine protocols to assess sexual function in AYAs with cancer and to provide comprehensive management in the clinical setting. Copyright © 2016 John Wiley & Sons, Ltd.
Assuntos
Sobreviventes de Câncer/psicologia , Relações Interpessoais , Neoplasias/psicologia , Disfunções Sexuais Psicogênicas/psicologia , Adaptação Psicológica , Adolescente , Adulto , Estudos de Coortes , Fadiga/psicologia , Feminino , Humanos , Modelos Logísticos , Masculino , Neoplasias/complicações , Neoplasias/terapia , Satisfação Pessoal , Disfunções Sexuais Psicogênicas/etiologia , Adulto JovemRESUMO
PURPOSE: Cancer treatment programs and community-based support organizations are increasingly producing information and support resources geared to adolescent and young adult patients (AYAs); however, systematically-derived knowledge about user preferences for these resources is lacking. The primary purpose of this study was to generate findings from informed AYA cancer patients that resource developers can use to create products consistent with AYAs' expressed preferences for information and support. METHODS: Utilizing a modified Delphi technique, AYA cancer patients identified barriers to optimal AYA cancer care, cancer resources that address their needs, and specific characteristics of cancer resources they find helpful. The Delphi panel consisted of a convenience sample of 21 patients aged 18-39 years, who were diagnosed with cancer between ages 15-39 and were no more than 8 years out from cancer treatment at the time of the study. Survey data were collected in three consecutive and iterative rounds over the course of 6 months in 2015. RESULTS: Findings indicated that AYA patients prefer resources that reduce feelings of loneliness, create a sense of community or belonging, and provide opportunities to meet other AYA patients. Among the top barriers to optimal cancer care, AYAs identified a lack of cancer care providers specializing in AYA care, a lack of connection to an AYA patient community, and their own lack of ability to navigate the health system. Participants also described aspects of cancer information and supportive care resources that they believe address AYAs' concerns. CONCLUSION: Information derived from this study will help developers of cancer information and support resources to better reach their intended audience. From the point of view of AYA cancer patients, optimal cancer care and utilization of information and support resources requires that cancer support programs foster meaningful connections among AYA patients. Results also suggest that patient resources should equip AYAs with practical knowledge and skills necessary to navigate the health system and advocate for themselves. Given patient interest in social media, future research should further investigate optimizing online resources to serve the AYA cancer population.
Assuntos
Neoplasias/terapia , Adolescente , Adulto , Fatores Etários , Técnica Delphi , Feminino , Recursos em Saúde , Humanos , Solidão , Masculino , Avaliação das Necessidades , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: Participation in camps, adventure programs, retreats, and other social events offers experiences that can promote self-efficacy and quality of life. PURPOSE: The purpose of the study was to examine whether participation in a 1-week outdoor adventure program resulted in improvements in psychological distress, self-efficacy, and/or social support for young adult cancer patients (AYAs) aged 18-40 years. The study examined the differential effect of participation for AYAs who indicated moderate to severe symptoms of psychological distress prior to their trip. METHODS: Standardized measures of distress, self-efficacy, and social support were administered pre-trip, post-trip, and 1 month after program completion (follow-up). Univariate and multivariate models examined baseline scores for non-distressed participants compared to distressed participants, changes in outcomes from pre-trip to post-trip and follow-up for the entire sample, and the extent to which change rates for each outcome differed for distressed versus non-distressed participants. RESULTS: All participants demonstrated significant improvement in self-efficacy over time. Distressed participants reported a significantly greater decrease in distress symptoms and greater increase in self-efficacy and social support at post-trip and 1 month later when compared to non-distressed participants. CONCLUSIONS: Findings suggest that participation in an outdoor recreational activity designed specifically for AYAs with cancer contributes to significant reductions in distress and improvements in self-efficacy and social support, and particularly for AYAs reporting clinically significant distress symptoms prior to the initiation of their activity.
Assuntos
Ansiedade/psicologia , Depressão/psicologia , Neoplasias/psicologia , Qualidade de Vida/psicologia , Adolescente , Adulto , Feminino , Humanos , Masculino , Adulto JovemRESUMO
BACKGROUND: This study reports cancer-treating institutions' capacity to deliver comprehensive psychosocial support services. METHODS: Oncology care providers at 60 cancer-treating institutions completed surveys assessing the capacity of their institutions to provide psychosocial care. Capacity was assessed with the Cancer Psychosocial Care Matrix (CPCM) from the National Cancer Institute (NCI). Scores represented individuals' perceptions of their cancer program's performance with respect to 10 fundamental elements of psychosocial care. RESULTS: Among 2134 respondents, 62% reported a mid-level capacity for ≥5 of 10 CPCM items. In comparison with other types of cancer programs (eg, NCI-designated, academic, or comprehensive centers), providers at community cancer programs reported a significantly greater capacity with respect to patient-provider communication, psychosocial needs assessment, and continuity in the delivery of psychosocial care over time. Nurses and primary medical providers reported a significantly lower capacity for linking patients and families with needed psychosocial services within their respective cancer programs. They also reported a significantly higher capacity for conducting follow-up, re-evaluations, and adjustments of psychosocial treatment plans. CONCLUSIONS: Cancer programs are performing moderately well in terms of communicating to patients the importance of psychosocial care, identifying patient psychosocial needs, and referring patients and families to psychosocial services. They are doing less well with respect to the provision of that care over time. Findings suggest that gaps in psychosocial service capacity are a function of patient, provider, and system characteristics. These results may be useful in formulating strategies to enhance psychosocial care delivery. Cancer 2016;122:1937-45. © 2016 American Cancer Society.
Assuntos
Oncologia/métodos , Neoplasias/psicologia , Neoplasias/terapia , Psicologia/métodos , Apoio Social , Serviço Social/métodos , Feminino , Humanos , MasculinoRESUMO
OBJECTIVE: Theories of posttraumatic growth suggest that some degree of distress is necessary to stimulate growth; yet, investigations of the relationship between stress and growth following trauma are mixed. This study aims to understand the relationship between posttraumatic stress symptoms and posttraumatic growth in adolescent and young adult (AYA) cancer patients. METHOD: 165 AYA patients aged 14-39 years at diagnosis completed standardized measures of posttraumatic stress and posttraumatic growth at 12 months following diagnosis. Locally weighted scatterplot smoothing and regression were used to examine linear and curvilinear relationships between posttraumatic stress and posttraumatic growth. RESULTS: No significant relationships between overall posttraumatic stress severity and posttraumatic growth were observed at 12-month follow-up. However, curvilinear relationships between re-experiencing (a posttraumatic stress symptom) and two of five posttraumatic growth indicators (New Possibilities, Personal Strengths) were observed. CONCLUSION: Findings suggest that re-experiencing is associated with some aspects of posttraumatic growth but not others. Although re-experiencing is considered a symptom of posttraumatic stress disorder, it also may represent a cognitive process necessary to achieve personal growth for AYAs. Findings call into question the supposed psychopathological nature of re-experiencing and suggest that re-experiencing, as a cognitive process, may be psychologically adaptive. Opportunities to engage family, friends, cancer survivors, or health care professionals in frank discussions about fears, worries, or concerns may help AYAs re-experience cancer in a way that enhances their understanding of what happened to them and contributes to positive adaptation to life after cancer.