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OBJECTIVE: The present review describes how children experience hereditary cancer risk communication within the family. METHODS: Searches for studies between 1990 and 2020 on PubMed and EBSCO were undertaken, and 15 studies met the inclusion criteria, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The findings informed: (1) how, when and what is discussed about hereditary cancer risk in the family; (2) how does family communication about hereditary cancer risk impact children on psychosocial and behavioral outcomes; (3) what are the child's preferences regarding hereditary cancer risk communication within the family. RESULTS: Disclosure is done mostly by both parents, or mothers only, which is in accordance with the children's preferences. Children value open communication about cancer risk with their parents, although they report experiences of fear, surprise, feeling unhappy, and concern about the increased risk of cancer. Regardless of the method of disclosure, children may be particularly sensitive to their parent's emotional state at the time of disclosure, and they learn from their parents' experiences the potential implications of cancer risk. Children also report that it would be helpful to learn more about genetic cancer syndromes via written materials, and/or meet a genetic counselor. CONCLUSIONS: Children rely on their parents as the primary models of the hereditary cancer experience. Therefore, parents play a central role in the psychological adjustment of children. Findings point to the relevance of family-centered care in hereditary cancer risk that targets not only the mutation carrier individually but also their children and partners.
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Predisposição Genética para Doença , Neoplasias , Criança , Humanos , Pais/psicologia , Comunicação , Revelação , Neoplasias/genética , Neoplasias/psicologiaRESUMO
This study aimed to identify the professional development needs of early career doctorally prepared professionals in psychosocial oncology. We used a cross-sectional descriptive survey design to assess professionally related skills deemed most important to participants' academic excellence and promotion, skills they felt most and least confident to engage in, and those they were most interested to learn more about. Seventeen participants completed the survey and were, on average, 39.3 years of age (range 29-55 years) and had completed doctoral or post-doctoral training 3.1 years previously (range 0-5 years). Participants identified seeking external funding as not only the most important skill to achieve their academic excellence and promotion, but also as the skill they felt least confident to engage in. They felt most confident to engage in career planning and getting published and were most interested to learn more about how to negotiate a career/position. Participants also expressed interest in having access to a forum wherein they could collaborate with others and receive mentorship from expert oncology professionals with doctoral degrees. The findings from this study point to the need for professional development opportunities for oncology professionals before and after they complete their doctoral or post-doctoral training. Study participants' perspectives offer insights about topics that may be enhanced in doctoral and post-doctoral mentorship programs.
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Educação de Pós-Graduação , Médicos , Humanos , Adulto , Pessoa de Meia-Idade , Estudos Transversais , Mentores , Escolha da ProfissãoRESUMO
Prompt services and work-focused support systems are needed to aid cancer survivors returning to work or finding work. Purpose This knowledge translation and implementation project focused on the knowledge users' experience and need for refinement of three work-focused tools to support return to work and maintain work following cancer through their participation in a hands-on workshop. The tools assessed for their utility are a Job Analysis Tool (JAT), a Return to Work (RTW) tool, and a bilingual Canadian website on Cancer and Work. Methods Four workshops took place in three Canadian cities. Participants included cancer survivors, healthcare professionals, and employer representatives. Following an overview of the website and tools, workshop participants (N = 28) completed qualitative and quantitative satisfaction and usability questionnaires using the System Usability Scale and open-ended questions. Qualitative data was analyzed using content analyses from the think-aloud data and from the four open-ended questions collected during the users' use of the tools and website. Results Overall, most study participants reported high satisfaction with the JAT and RTW tools, the Cancer and work website and the workshop. Good usability scores were reported for the RTW planner (73.65 ± 12.61) and the website (74.83 ± 12.36), and only acceptable usability scores for the JAT (68.53 ± 11.90). Conclusion Overall, the study documented the value of the tools and the website to support the RTW process as assessed by several key knowledge user groups. The JAT is considered a helpful procedure to identify job demands in order to guide job accommodations. Given participants' responses that the tool is useful, the next steps are to implement the recommendations for improvement and knowledge dissemination to increase its uptake and the use of job analysis overall.
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Sobreviventes de Câncer , Neoplasias , Canadá , Humanos , Satisfação Pessoal , Retorno ao Trabalho , SobreviventesRESUMO
Background and Objectives: Individuals with cancer, especially advanced cancer, are faced with numerous difficulties associated with the disease, including an earlier death than expected. Those who are able to confront and accept the hardships associated with the disease in a way that aligns with their beliefs benefit from more positive psychological outcomes compared to those who are aware of their diagnosis but are unable to accept it. To date, there is limited research exploring factors contributing to illness and death acceptance in the context of advanced cancer in group therapy settings. Materials and Methods: The current study used a Directed Content Analysis approach on transcripts of online advanced cancer support groups to investigate if and how Yalom's existential factors played a role in the emergence of acceptance. Results: The online support group platform, combined with the help of facilitators, offered supportive environments for individuals seeking help with cancer-related distress by helping patients move towards acceptance. Some participants had already begun the process of accepting their diagnosis before joining the group, others developed acceptance during the group process, while a few continued to be distressed. Our analysis revealed the emergence of four themes related to illness acceptance: (1) Facilitator-Initiated Discussion, including sub-themes of Mindfulness, Relaxation and Imagery, Changing Ways of Thinking, and Spirituality; (2) Personal attitudes, including sub-themes of Optimism and Letting Go of Control; (3) Supportive Environment, including the sub-themes of Providing Support to Others and Receiving Support from Others; and (4) Existential Experience, which included sub-themes of Living with the Diagnosis for an Extended Amount of Time, Legacy and Death Preparations, and Appreciating life. Conclusions: With a paradigm shift to online delivery of psychological services, recognizing factors that contribute to acceptance when dealing with advanced cancer may help inform clinical practices. Future studies should explore patient acceptance longitudinally to inform whether it emerges progressively, which has been suggested by Kübler-Ross.
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Atenção Plena , Neoplasias , Conscientização , Emoções , Humanos , Neoplasias/terapia , Grupos de AutoajudaRESUMO
OBJECTIVES: Body image (BI) remains a significant survivorship challenge among breast cancer (BC) survivors. We describe an 8-week group intervention-restoring body image after cancer (ReBIC)-developed to target BI distress for BC survivors. METHODS: The intervention was informed by interviews with BC survivors and by a descriptive, exploratory approach which adapted guided imagery exercises to address BI. Educational material was selected to address sociocultural factors that may contribute to BI distress and affect adjustment. Videotape reviews and content analyses further refined the intervention. RESULTS: The intervention incorporates three active components: psychotherapeutic group principles; guided imagery exercises to address BI; and psychoeducation on relevant socialization factors and gender-based messages internalized by women in Western society. The therapeutic group was a supportive and effective way to assist BC survivors to gain insight on BI impacts, their histories, and relevant sociocultural factors contributing to BI distress. The group also facilitated the working through of grief over multiple losses. Guided imagery was well-received, and appeared to help survivors identify negative and emerging self-schema, as well as facilitate new self-views. Specific themes included negative emotions associated with an altered body and self, grief and loss, isolation, difficulties with sexual intimacy, relationship challenges, and uncertainty around sense of self and future. CONCLUSION: An empirically tested group therapy intervention is described and has implications for survivorship programs to help address BI-related challenges. Future work could consider testing a similar approach tailored for other cancer populations.
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Imagem Corporal/psicologia , Neoplasias da Mama/psicologia , Sobreviventes de Câncer/psicologia , Psicoterapia de Grupo , Adulto , Feminino , Humanos , Pessoa de Meia-IdadeRESUMO
OBJECTIVE: This pilot study aimed to evaluate the feasibility, acceptability, and psychosocial outcomes of a text-based online group therapy intervention, i-Restoring Body Image after Cancer (i-ReBIC). i-ReBIC was developed to reduce body image distress and psychosexual dysfunction among women diagnosed and treated for breast or gynecological cancer. METHODS: i-ReBIC was adapted from an empirically tested face-to-face group therapy intervention, ReBIC. Over the 8-week intervention, participants engaged in 90-minute weekly text-based online discussions. Each week, a new topic associated with reconnecting to the body, adjusting to a postcancer identity, and improving psychosexual functioning was addressed. Homework assignments included readings, guided imagery exercises, and journaling. RESULTS: Sixty women with cancer enrolled in the pilot study. Among them, 47 completed the intervention, and 44 filled out all prestudy and poststudy questionnaires. Ninety-three percent of participants (n = 41) were satisfied and reported that it met their expectations. Eighty percent of participants (n = 35) reported no technical difficulties during the intervention. Preoutcome and postoutcome measures on body image distress and experience of embodiment showed statistically significant improvements. Psychosexual distress and quality of life also showed improvements but were not statistically significant. CONCLUSIONS: This study suggests that i-ReBIC is feasible, well accepted, and effective in addressing persistent body image concerns experienced by women treated for breast or gynecological cancer. As an online group therapy, i-ReBIC can expand the reach of its original face-to-face intervention by mitigating barriers and improving access to care in a cost-effective manner.
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Imagem Corporal/psicologia , Neoplasias da Mama/psicologia , Sobreviventes de Câncer/psicologia , Intervenção Baseada em Internet , Aceitação pelo Paciente de Cuidados de Saúde , Psicoterapia , Disfunções Sexuais Psicogênicas/terapia , Adulto , Estudos de Viabilidade , Feminino , Humanos , Pessoa de Meia-Idade , Projetos PilotoRESUMO
BACKGROUND: Music as a therapeutic tool, defined as "music care," can help manage physical and psychological symptoms in individuals with cancer. There is further need to understand interest level and the potential role of music care among health professionals working in the field of oncology. PURPOSE: To investigate knowledge of and attitudes toward the use of music as a therapeutic tool in cancer and palliative care, as well as to identify barriers associated with learning to use music in care among health professionals. METHODS: Participants (N = 204), mostly nurses working in oncology and palliative care, completed a survey to assess awareness, knowledge, and attitudes toward the use of music in healthcare practice. RESULTS: In total, 55.5% of participants reported being "somewhat or very knowledgeable" about how to apply/use music therapy for the management of symptoms or on how to make a music therapy referral or for any application of music care. Participants demonstrated a high interest level in learning how to incorporate music into practice (mean = 4.05; SD = 1.045). CONCLUSION: While there is generally high interest and perceived value among nurses in music care interventions, knowledge level about such interventions was low. The study has implications for knowledge translation and education needed to further support uptake and use of music care in nursing practice.
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Atitude do Pessoal de Saúde , Conhecimentos, Atitudes e Prática em Saúde , Musicoterapia , Neoplasias/terapia , Adulto , Estudos Transversais , Feminino , Pessoal de Saúde/psicologia , Pessoal de Saúde/estatística & dados numéricos , Humanos , Masculino , Oncologia/estatística & dados numéricos , Pessoa de Meia-Idade , Música/psicologia , Neoplasias/psicologia , Enfermeiras e Enfermeiros/psicologia , Enfermeiras e Enfermeiros/estatística & dados numéricos , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Cuidados Paliativos/estatística & dados numéricos , Inquéritos e Questionários , Adulto JovemRESUMO
PURPOSE: As the demand in cancer care continues to increase, health systems require a workforce of highly educated specialists and generalists to provide continuity of care across settings. OBJECTIVES: Led by de Souza Institute in Canada, an interdisciplinary working group was formed to develop a competency framework with relevance across regulated health professionals involved in cancer care. METHODS: The working group was presented with results from a scoping review of national and international guidelines, standards, and competencies in oncology, as well as data from needs assessments on continuing education opportunities and oncology topics most relevant to clinicians. Fifty-one professionals from, e.g., family medicine, pharmacy, social work, psychology, occupational therapy, and nursing participated in seven focus groups. An additional 32 nurses participated in a nursing-specific needs assessment survey. Using modified Delphi technique, working group members conducted three iterative rounds to review data and built consensus on competency items in relation to three levels of expertise, from early learner/novice practitioner, advancing practitioner, to expert practitioner. RESULTS: A final consensus was reached for the selection of competencies that reflect optimal cancer care mapped into three levels of expertise, as well as knowledge, skills, and attitudes expected of each level. Examples for the competency for early learner/novice practitioner include the following: Have awareness of common ethical issues in cancer care (knowledge); demonstrate ability to discuss, educate, and counsel patients and their support persons(s) regarding preferences (skills); and appreciate the impact of culture, the sensitivity, and diversity of attitudes in relation to cancer (attitude). Expert practitioner examples include: recognition of need for, and ability to advocate for challenges involving equity and access in order to improve health outcomes (skill) and awareness of workplace complexities, such as provider roles, team functioning, and organizational environments affecting patient-practitioner relationships (attitude). CONCLUSION: The de Souza Interprofessional practice cancer competency framework provides a set of shared competencies and a novice to expert pathway for clinicians across disciplines and supports a more standardized learning and comprehensive approach in organizing professional development towards a coordinated, high quality, and person-centered care.
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Competência Clínica/estatística & dados numéricos , Educação em Saúde/métodos , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde/educação , Neoplasias/terapia , Canadá , Técnica Delphi , Humanos , Avaliação das Necessidades , Local de TrabalhoRESUMO
BACKGROUND: Having a first-degree relative (FDR) with colorectal cancer (CRC) is a significant risk factor for CRC. Counseling for FDRs regarding CRC risk factors and personalized risk is important to improve knowledge and screening compliance. METHODS: A 3-arm randomized controlled trial compared tailored in-person and telephone CRC counseling interventions with controls among FDRs who were not mutation carriers for known hereditary cancer syndromes, but who were considered to be at an increased risk based on family history. It was hypothesized that both telephone and in-person approaches would increase CRC knowledge, screening adherence, perceived risk accuracy, and psychosocial functioning compared with controls. The authors anticipated greater satisfaction with the in-person approach. CRC knowledge, risk perception, psychosocial functioning, and intention to screen were assessed at baseline and at 2-week and 2-month follow-ups (primary endpoint). RESULTS: A total of 278 FDRs (mean age, 47.4 years, standard deviation, 11.38 years) participated. At baseline, participants reported low to moderate CRC knowledge and overestimations of risk. Screening adherence was 73.7%. At 2 months, participants in the in-person arm and telephone arm demonstrated improvements in knowledge and perceived risk and were not found to be statistically different from each other. However, when comparing each intervention with controls, knowledge in the in-person arm was found to be statistically significantly higher, but the difference between the telephone and control arms was not. Cancer-related stress reduced over time in all groups. Intervention benefits were maintained at 1 year. Baseline screening intent/adherence were high, and therefore did not reach statistically significant improvement. CONCLUSIONS: Tailored in-person or telephone formats for providing CRC risk counseling, incorporating behavioral interventions, appear to improve knowledge and risk perceptions, with high client satisfaction.
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Colonoscopia/métodos , Neoplasias Colorretais/diagnóstico , Aconselhamento/métodos , Detecção Precoce de Câncer/métodos , Família/psicologia , Telefone/estatística & dados numéricos , Neoplasias Colorretais/psicologia , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , PrognósticoRESUMO
OBJECTIVE: The Therapeutic Practices for Distress Management (TPDM) project was carried out to support clinicians in integrating recommendations from four clinical practice guidelines (CPGs) in routine care at five Pan Canadian cancer care sites. METHODS: Using a concurrent, mixed-method study design and knowledge translation (KT) activities, this project included two phases: phase I-a baseline/preparation phase and phase II-an intervention phase plus evaluation. The intervention phase (the focus of this report) included a one-year education and supervision program (24 hours in virtual class; 12-hour group supervision). Primary outcomes were knowledge and self-efficacy in practicing CPGs as measured by a Knowledge and Self-Efficacy Survey (KSES). A secondary outcome was observer-rated performances with standardized patients (objective structured clinical exams). Participants included 80 (90%) nurses, and 9 (10%) social workers (N = 89). RESULTS: The TPDM program was effective in accomplishing change in knowledge, self-efficacy, and performance. All measures demonstrated significant change pre and post module, with evidence of increasing knowledge (P < .01) and confidence (P < .01) over time. Further, there was evidence of a shift in barriers and enablers to practicing in alignment with the CPGs. CONCLUSIONS: A tailored education program using case-based learning and supervision over time improves knowledge and practice among front line clinicians. The findings have implications for quality improvement in cancer care.
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Depressão/terapia , Promoção da Saúde/organização & administração , Neoplasias/reabilitação , Educação de Pacientes como Assunto/organização & administração , Canadá , Procedimentos Clínicos , Depressão/etiologia , Humanos , Neoplasias/psicologia , Guias de Prática Clínica como Assunto , Avaliação de Programas e Projetos de Saúde , AutoeficáciaRESUMO
OBJECTIVE: Women with a family history of breast cancer (BC) often overestimate their BC risk. Heightened psychological distress may interfere with risk comprehension and screening adherence. The primary purpose of this study was to test the efficacy of a 12-week manual-based supportive-expressive (SE) group intervention for this population. METHODS: Using a randomized control trial design, this study compared two interventions: a standard risk-counseling arm (RC) compared with that plus SE group intervention. The primary study outcome was BC anxiety. Secondary outcomes included psychosocial functioning, risk comprehension, BC knowledge, and screening behaviors. RESULTS: A total of 161 women with a family history of BC were randomized into SE (N = 108) or RC (N = 53). Participants in both study arms significantly improved on measures of BC anxiety, psychosocial functioning, risk comprehension, and BC knowledge, with no statistical difference between study arms. Benefits were sustained at 1 year. BC screening rates were high in both arms at baseline and follow-up. CONCLUSIONS: SE group therapy as an added intervention to the risk counseling was well-received, however, did not demonstrate superiority to RC alone. Future studies on treatment matching are needed to further our understanding of interventions that can support women with a family history of BC to work through residual issues, including loss and grief.
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Ansiedade/etiologia , Neoplasias da Mama/genética , Neoplasias da Mama/psicologia , Aconselhamento/métodos , Estresse Psicológico/etiologia , Adulto , Ansiedade/psicologia , Feminino , Aconselhamento Genético , Testes Genéticos , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Programas de Rastreamento , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde , Risco , Grupos de Autoajuda , Estresse Psicológico/psicologiaRESUMO
AbstractCancer is one of the leading causes of death in the world. Along with increased new cases, cancer care has become increasingly complex due to advances in diagnostics and treatments, greater survival, and new models of palliative care. Nurses are a critical resource for cancer patients and their families. Their roles and responsibilities are expanding across the cancer care continuum, calling for specialized training and support. Formal education prepares nurses for entry level of practice, however, it does not provide the specialized competencies required for quality care of cancer patients. There is urgent need to align the educational system to the demands of the health care system, ease transition from formal academic systems to care settings, and to instill a philosophy of lifelong learning. We describe a model of education developed by de Souza Institute in Canada, based on the Novice to Expert specialty training framework, and its success in offering structured oncology continuing education training to nurses, from undergraduate levels to continued career development in the clinical setting. This model may have global relevance, given the challenge in managing the demand for high quality care in all disease areas and in keeping pace with the emerging advances in technologies.
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Fortalecimento Institucional , Bacharelado em Enfermagem/organização & administração , Papel do Profissional de Enfermagem , Enfermagem Oncológica/organização & administração , Local de Trabalho/estatística & dados numéricos , Canadá , Feminino , Humanos , Descrição de Cargo , Masculino , Pesquisa em Educação em Enfermagem , Enfermagem Oncológica/educação , Inovação Organizacional , Qualidade da Assistência à Saúde , Escolas de Enfermagem , Desenvolvimento de Pessoal , Local de Trabalho/psicologiaRESUMO
BACKGROUND: Breast cancer treatments and the traumatic nature of the cancer experience frequently elicit considerable sexual difficulties. Breast cancer survivors (BCS) experiencing body image (BI) issues may represent a vulnerable group for developing sexual dysfunction posttreatment. The current study explores sexual functioning (SF) in this unique clinical group. METHODS: A descriptive study assessed 127 BCS who were engaged in sexual activity. Standardized baseline measures included the following: BI Scale, BI after Breast Cancer Questionnaire, Female Sexual Function Index (FSFI), Kansas Marital Satisfaction Scale, and Functional Assessment of Cancer Therapy - Breast. Levels of SF were compared with BCS, heterogeneous cancer, and healthy female populations. Correlational analyses were conducted between SF, BI, relationship, and health-related quality of life variables. Guided by a conceptual framework, regression analyses were conducted to determine significant demographic, clinical, and psychosocial predictors of sexual desire, satisfaction, and overall SF. RESULTS: Eighty-three per cent of BCS met the FSFI clinical cutoff score for a sexual dysfunction. Participants exhibited poorer SF when compared with other female cancer and healthy groups. No significant correlations were found between BI questionnaire total scores and SF. BI after Breast Cancer Questionnaire - Body Stigma subscale showed significant associations with FSFI Arousal, Orgasm, Satisfaction (average r = -0.23), and overall SF (r = -0.25). Vaginal dryness (ß = -0.50), body stigma (ß = -0.24), and relationship satisfaction (ß = 0.27) were significant predictors of overall SF. CONCLUSION: Difficulties in SF appear to be highly prevalent in BCS experiencing BI disturbance posttreatment. Brief screening tools assessing SF should adopt a biopsychosocial model, which includes questions regarding vaginal dryness, relationship satisfaction, and body stigma issues.
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Imagem Corporal/psicologia , Neoplasias da Mama/psicologia , Disfunções Sexuais Psicogênicas , Sobreviventes/psicologia , Adulto , Idoso , Neoplasias da Mama/terapia , Feminino , Humanos , Libido , Pessoa de Meia-Idade , Satisfação Pessoal , Comportamento Sexual/psicologia , Inquéritos e Questionários , Sobreviventes/estatística & dados numéricosRESUMO
BACKGROUND: Most Canadians die in hospital, and yet, many express a preference to die at home. Place of death is the result of the interaction among sociodemographic, illness- and healthcare-related factors. Although home death is sometimes considered a potential indicator of end-of-life/palliative care quality, some determinants of place of death are more modifiable than others. The objective of this systematic review was to evaluate the determinants of home and nursing home death in adult patients diagnosed with an advanced, life-limiting illness. METHODS: A systematic literature search was performed for studies in English published from January 1, 2004 to September 24, 2013 that evaluated the determinants of home or nursing home death compared to hospital death in adult patients with an advanced, life-limiting condition. The adjusted odds ratios, relative risks, and 95% confidence intervals of each determinant were extracted from the studies. Meta-analyses were performed if appropriate. The quality of individual studies was assessed using the Newcastle-Ottawa scale and the body of evidence was assessed according to the GRADE Working Group criteria. RESULTS: Of the 5,900 citations identified, 26 retrospective cohort studies were eligible. The risk of bias in the studies identified was considered low. Factors associated with an increased likelihood of home versus hospital death included multidisciplinary home palliative care, preference for home death, cancer as opposed to other diagnoses, early referral to palliative care, not living alone, having a caregiver, and the caregiver's coping skills. CONCLUSIONS: Knowledge about the determinants of place of death can be used to inform care planning between healthcare providers, patients and family members regarding the feasibility of dying in the preferred location and may help explain the incongruence between preferred and actual place of death. Modifiable factors such as early referral to palliative care, presence of a multidisciplinary home palliative care team were identified, which may be amenable to interventions that improve the likelihood of a patient dying in the preferred location. Place of death may not be a very good indicator of the quality of end-of-life/palliative care since it is determined by multiple factors and is therefore dependent on individual circumstances.
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Morte , Serviços de Assistência Domiciliar/estatística & dados numéricos , Assistência Terminal/psicologia , Atitude Frente a Morte , Canadá , Planejamento em Saúde/estatística & dados numéricos , Serviços de Assistência Domiciliar/normas , Humanos , Casas de Saúde/normas , Casas de Saúde/estatística & dados numéricos , Avaliação de Resultados em Cuidados de Saúde , Estudos RetrospectivosRESUMO
Evidence suggests that women who receive uninformative results for breast and ovarian cancer (BRCA1/2) gene mutations may experience as much distress as women whose results indicate the presence of a gene mutation. No intervention to reduce distress after receipt of uninformative results has yet been tested. The purpose of this study was to test the feasibility and preliminary effects of a psycho-educational telephone (PET) intervention to reduce distress in women who receive uninformative BRCA1/2 results. A single group with repeated measures was used to assess the impact of the intervention on 72 such women. After receiving the results, most of the women continued to feel uncertain about their carrier genetic status. However, their distress significantly decreased between receipt of uninformative results and 3 months post-intervention (p = 0.01). The preliminary findings suggest that a PET uncertainty intervention is clinically feasible and may reduce the distress of receiving uninformative results.
Les données permettent de croire que les femmes qui obtiennent des résultats non concluants à la suite de tests de dépistage d'une mutation des gènes liés aux cancers du sein et des ovaires (BRCA1 et BRCA2) sont susceptibles d'éprouver une détresse aussi importante que celles dont les résultats indiquent la présence d'une mutation génétique. Aucune intervention visant à atténuer le sentiment de détresse après réception de résultats non concluants n'a encore été mise à l'essai. L'objectif de la présente étude est d'évaluer la faisabilité et les effets préliminaires d'une intervention consistant en un appel psycho-éducatif destiné à réduire la détresse de femmes ayant reçu des résultats de dépistage génétique non concluants concernant les gènes BRCA1 et BRCA2. Un groupe unique sondé à plusieurs reprises a été étudié afin d'évaluer l'effet d'une telle intervention sur 72 femmes. Après la réception de leurs résultats, la plupart éprouvaient toujours de l'incertitude concernant leur statut de porteuse ou non d'une mutation génétique. Toutefois, une diminution considérable de leur détresse a été observée entre la réception des résultats non concluants et une période de trois mois après l'intervention par téléphone (p = 0,01). Les constatations préliminaires donnent à penser qu'une intervention psycho-éducative par téléphone à propos de l'incertitude est réalisable et permet de réduire la détresse des femmes dont les résultats sont non concluants.
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PURPOSE: Few studies have examined methods to promote communication following the return of DNA mismatch repair genetic test results obtained during research. The purpose of the present study was to evaluate a telephone protocol for returning research results of DNA mismatch repair gene testing to identify Lynch syndrome. METHODS: We invited individuals with known DNA mismatch repair mutations in their family, who were enrolled in the Colon Cancer Family Registry at the Mayo Clinic, to participate in this study. Participants completed surveys before and 6 months after DNA mismatch repair test result disclosure. RESULTS: Among 107 participants, 79% opted to learn their DNA mismatch repair test results; of these, 44 (41%) carried DNA mismatch repair mutations. After disclosure, 54% reported screening for any type of cancer. Among carriers, >74% reported communicating results to family; communication was predicted by baseline confidence in coping with the genetic test result (Z = 1.97; P = 0.04). Result disclosure to a physician was predicted by greater perceived cancer risk (Z = 2.08; P = 0.03) and greater intention to share results with family (Z = 3.07; P = 0.002). CONCLUSION: Research versus clinically based gene disclosure presents challenges. A telephone disclosure process for the return of research-based results among Lynch syndrome families led to high rates of result uptake and participant communication of results to providers and family members.
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Neoplasias Colorretais Hereditárias sem Polipose/diagnóstico , Neoplasias Colorretais Hereditárias sem Polipose/psicologia , Revelação , Testes Genéticos , Adulto , Idoso , Neoplasias Colorretais Hereditárias sem Polipose/genética , Feminino , Pessoal de Saúde , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Relações Médico-Paciente , Estudos Prospectivos , Medição de RiscoRESUMO
The article co-authored by Maureen Taylor and Sandra Martin raises important issues that are resulting in new debate and attention in our thinking concerning physician-assisted death. It is likely that a change in policy is forthcoming, especially with the emerging force of a growing demographic who value personal choice and autonomy and are well-versed in the range of medical technologies and practices available. The issue of physician-assisted death cannot be understood apart from considering current models of healthcare and the role of adequate supportive care and psychosocial support. Despite having access to research and frameworks to inform quality palliative care, as well as communication competencies and guidelines to assist practitioners in the management of debilitating symptoms, our current healthcare system consists of healthcare professionals who continue to be challenged in their abilities to alleviate complex and challenging symptoms and distress. We will need to carefully assess our systems and plan well ahead for changes in policy to provide optimal, ethical and safe approaches to the offering of services around assisted death as an option for end-of-life care.
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BACKGROUND: Commonly offered as supportive care, therapist-led online support groups (OSGs) are a cost-effective way to provide support to individuals affected by cancer. One important indicator of a successful OSG session is group cohesion; however, monitoring group cohesion can be challenging due to the lack of nonverbal cues and in-person interactions in text-based OSGs. The Artificial Intelligence-based Co-Facilitator (AICF) was designed to contextually identify therapeutic outcomes from conversations and produce real-time analytics. OBJECTIVE: The aim of this study was to develop a method to train and evaluate AICF's capacity to monitor group cohesion. METHODS: AICF used a text classification approach to extract the mentions of group cohesion within conversations. A sample of data was annotated by human scorers, which was used as the training data to build the classification model. The annotations were further supported by finding contextually similar group cohesion expressions using word embedding models as well. AICF performance was also compared against the natural language processing software Linguistic Inquiry Word Count (LIWC). RESULTS: AICF was trained on 80,000 messages obtained from Cancer Chat Canada. We tested AICF on 34,048 messages. Human experts scored 6797 (20%) of the messages to evaluate the ability of AICF to classify group cohesion. Results showed that machine learning algorithms combined with human input could detect group cohesion, a clinically meaningful indicator of effective OSGs. After retraining with human input, AICF reached an F1-score of 0.82. AICF performed slightly better at identifying group cohesion compared to LIWC. CONCLUSIONS: AICF has the potential to assist therapists by detecting discord in the group amenable to real-time intervention. Overall, AICF presents a unique opportunity to strengthen patient-centered care in web-based settings by attending to individual needs. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/21453.
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OBJECTIVE: This study aimed to explore the relationships between gender-role socialization, objectified body consciousness and quality of life in breast cancer (BC) survivors with body image (BI) disturbance post-treatment. METHODS: A total of 150 BC survivors participating in an ongoing randomized clinical trial of a group psychotherapy intervention for BI-related concerns completed a baseline battery of standardized measures including the following: Body Image Scale (BIS), Body Image after Breast Cancer Questionnaire (BIBCQ), Objectified Body Consciousness Scale (OBCS) measuring Body Shame and Surveillance, Gender-Role Socialization Scale (GRSS) measuring internalization of traditional gender roles and attitudes and the Functional Assessment of Cancer Therapy-Breast Quality-of-Life Instrument (FACT-B). Correlational analyses were conducted between the two BI questionnaires, the two primary psychosocial variables GRSS and OBCS, and FACT-B. Path analysis was conducted on a proposed theoretical model delineating pathways between the two primary psychosocial variables and BI disturbance. RESULTS: Significant positive correlations were found between the two BI scales and (a) GRSS (average r = 0.53, p < 0.000), (b) Body Shame (average r = 0.53, p < 0.000) and Surveillance (average r = 0.48, p < 0.000). The BIS and BIBCQ were negatively associated with the FACT-B (r = -0.62, -0.73, respectively; p < 0.000). Results from the path analysis demonstrated support for the proposed model. CONCLUSION: Breast cancer survivors who endorsed greater internalization of traditional gender roles and attitudes, who engaged in greater self-surveillance and experienced greater body shame, reported greater BI disturbance and poorer quality of life post-treatment. Women with these predispositions are likely to be more vulnerable for psychological distress and may experience poorer adjustment after BC treatment.
Assuntos
Transtornos Dismórficos Corporais/psicologia , Imagem Corporal/psicologia , Neoplasias da Mama/psicologia , Carcinoma/psicologia , Identidade de Gênero , Mastectomia/psicologia , Socialização , Sobreviventes/psicologia , Adulto , Idoso , Atitude , Neoplasias da Mama/terapia , Carcinoma/terapia , Quimioterapia Adjuvante , Estudos de Avaliação como Assunto , Feminino , Feminilidade , Humanos , Mamoplastia/psicologia , Mastectomia Segmentar/psicologia , Pessoa de Meia-Idade , Radioterapia AdjuvanteRESUMO
BACKGROUND: We evaluated the effect of Emotionally Focused Therapy (EFT) [intervention (INT)], modified for the advanced cancer population versus standard care [control (CTL)], on marital functioning and psychosocial outcomes among distressed couples. EFT examines the ways couples process patterns of interaction, facilitating change. METHODS: Forty-two patients with metastatic cancer and their caregivers were assigned randomly to receive eight sessions of EFT delivered by one EFT-trained psychologist or standard care provided by multidisciplinary clinicians. Partners completed measures of marital functioning, depression, hopelessness, empathic caregiving (patient), and caregiver burden (caregiver) before randomization at baseline (T0), post-intervention (T1), and 3-month post-intervention (T2). Data were analyzed using three-way analyses of covariance; main effects were treatment, patient status, and sex. Multilevel modeling was also employed. RESULTS: At T1, INT group led to significant improvement in marital functioning (p ≤ 0.0001) and patients' experience of caregiver empathic care (p = 0.02) versus CTL group. Effect sizes for these differences were in the large range (d = 1.00). In both groups, patients showed a marginally higher mean score for marital functioning compared with caregivers [INT: M = 56.3, standard deviation (SD) = 4.6 vs M = 54.3, SD = 4.5; CTL group: M = 43.4, SD = 10.3 vs M = 42.4, SD = 6.8, respectively]. At T2, results were maintained. CONCLUSIONS: The effectiveness of and adherence to the EFT couple intervention for patients facing advanced cancer were demonstrated in this study. Larger randomized control trials are needed to confirm these findings. Qualitative studies may help to further understand the mechanism by which such an intervention may act.