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1.
Palliat Med ; 37(2): 244-256, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-36576308

RESUMEN

BACKGROUND: Acceptance and Commitment Therapy is a form of Cognitive Behavioural Therapy which uses behavioural psychology, values, acceptance and mindfulness techniques to improve mental health and wellbeing. Acceptance and Commitment Therapy is efficacious in treating stress, anxiety and depression in a broad range of settings including occupational contexts where emotional labour is high. This approach could help palliative care staff to manage work-related stress and promote wellbeing. AIM: To develop, and feasibility test, an online Acceptance and Commitment Therapy intervention to improve wellbeing of palliative care staff. DESIGN: A single-arm feasibility trial of an 8-week Acceptance and Commitment Therapy based intervention for staff, consisting of three online facilitated group workshops and five online individual self-directed learning modules. Data was collected via online questionnaire at four time-points and online focus groups at follow-up. SETTING/PARTICIPANTS: Participants were recruited from Marie Curie hospice and nursing services in Scotland. RESULTS: Twenty five staff commenced and 23 completed the intervention (93%). Fifteen participated in focus groups. Twelve (48%) completed questionnaires at follow-up. Participants found the intervention enjoyable, informative and beneficial. There was preliminary evidence for improvements in psychological flexibility (Cohen's d = 0.7) and mental wellbeing (Cohen's d = 0.49) between baseline and follow-up, but minimal change in perceived stress, burnout or compassion satisfaction. CONCLUSION: Online Acceptance and Commitment Therapy for wellbeing is acceptable to palliative care staff and feasible to implement using Microsoft Teams in a palliative care setting. Incorporating ways to promote long-term maintenance of behaviour changes, and strategies to optimise data collection at follow-up are key considerations for future intervention refinement and evaluation.


Asunto(s)
Terapia de Aceptación y Compromiso , Enfermería de Cuidados Paliativos al Final de la Vida , Intervención basada en la Internet , Personal de Enfermería , Humanos , Terapia de Aceptación y Compromiso/métodos , Estudios de Factibilidad , Grupos Focales , Encuestas y Cuestionarios , Estudios de Seguimiento , Personal de Enfermería/psicología
2.
BMC Cancer ; 22(1): 1353, 2022 Dec 24.
Artículo en Inglés | MEDLINE | ID: mdl-36566189

RESUMEN

BACKGROUND: Women living with metastatic breast cancer (MBC) are at risk of significantly impaired quality of life (QOL), symptom burden, distress and fear of progression, and unmet needs, yet they face barriers to accessing evidence-based psychosocial treatments. Our group therefore developed Finding My Way-Advanced (FMW-A), a web-based self-guided psychosocial program for women with MBC. This study aims to assess its efficacy in improving mental and other QOL domains, distress, fear of progression, unmet needs, and health service utilisation. METHODS: The multi-site randomised controlled trial (RCT) will enrol 370 Australian participants. Eligible participants are adult (18 years +) women diagnosed with MBC, with a life expectancy of 6 months or more, with sufficient English-language literacy to provide informed consent. Participants will be identified, screened and referred from one of 10 Australian sites, or via self-referral in response to advertisements. Participants complete four online questionnaires: prior to accessing their program ('baseline'), 6 weeks later ('post-intervention'), then 3 months and 6 months post-intervention. Consenting participants will be randomised to either FMW-A (intervention), or Breast Cancer Network Australia's (BCNA) online/app resource My Journey (minimal intervention attention-control). This is a single-blind study, with randomisation computer-generated and stratified by site. FMW-A is a 6-module program addressing some of the most common issues experienced by women with MBC, with BCNA control resources integrated within the 'resources' section. All modules are immediately accessible, with an additional booster module released 10 weeks later. The primary outcome is mental QOL; statistical criteria for superiority is defined as a 4-point difference between groups at post-treatment. Secondary outcomes include other QOL domains, distress, fear of progression, health service use, intervention adherence, and user satisfaction. DISCUSSION: This will be the first adequately powered RCT of a self-directed online intervention for women with MBC. If efficacious, FMW-A will help address two national key priorities for management of MBC - enhancing QOL and reducing symptom burden. FMW-A has the potential to address unmet needs and overcome access barriers for this overlooked population, while reducing health system burden. TRIAL REGISTRATION: The study was registered prospectively with the ANZCTR on 29/10/2021. Trial ID ACTRN12621001482853p.  https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=382714&isReview=true.


Asunto(s)
Neoplasias de la Mama , Intervención basada en la Internet , Adulto , Femenino , Humanos , Intervención Psicosocial , Australia , Neoplasias de la Mama/terapia , Calidad de Vida/psicología , Ensayos Clínicos Controlados Aleatorios como Asunto
3.
Eur J Cancer Care (Engl) ; 30(5): e13442, 2021 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-33764611

RESUMEN

OBJECTIVES: The COVID-19 pandemic is having considerable impact on cancer care, including restricted access to hospital-based care, treatment and psychosocial support. We investigated the impact on unmet needs and psychosocial well-being. METHODS: One hundred and forty four participants (77% female), including people with cancer and their support networks, were recruited. The most prevalent diagnosis was breast cancer. Forty-one participants recruited pre-pandemic were compared with 103 participants recruited during the COVID-19 pandemic. We measured participants' unmet supportive care needs, psychological distress and quality of life. RESULTS: Half of our patient respondents reported unexpected changes to treatment following pandemic onset, with widespread confusion about their longer-term consequences. Although overall need levels have not increased, specific needs have changed in prominence. People with cancer reported significantly reduced anxiety (p = 0.049) and improved quality of life (p = 0.032) following pandemic onset, but support network participants reported reduced quality of life (p = 0.009), and non-significantly elevated anxiety, stress and depression. CONCLUSION: Psychological well-being of people with cancer has not been detrimentally affected by pandemic onset. Reliance on home-based support to compensate for the lost availability of structured healthcare pathways may, however, explain significant and detrimental effects on the well-being and quality of life of people in their support and informal care networks.


Asunto(s)
Neoplasias de la Mama , COVID-19 , Supervivientes de Cáncer , Distrés Psicológico , Ansiedad/epidemiología , Neoplasias de la Mama/terapia , Depresión/epidemiología , Femenino , Humanos , Masculino , Pandemias , Calidad de Vida , SARS-CoV-2 , Estrés Psicológico/epidemiología , Encuestas y Cuestionarios , Reino Unido
4.
BMC Palliat Care ; 20(1): 96, 2021 Jun 25.
Artículo en Inglés | MEDLINE | ID: mdl-34172029

RESUMEN

OBJECTIVES: Transitioning into palliative care is psychologically demanding for people with advanced cancer, and there is a need for acceptable and effective interventions to support this. We aimed to develop and pilot test a brief Acceptance and Commitment Therapy (ACT) based intervention to improve quality of life and distress. METHODS: Our mixed-method design included: (i) quantitative effectiveness testing using Single Case Experimental Design (SCED), (ii) qualitative interviews with participants, and (iii) focus groups with hospice staff. The five-session, in-person intervention was delivered to 10 participants; five completed at least 80%. RESULTS: At baseline, participants reported poor quality of life but low distress. Most experienced substantial physical health deterioration during the study. SCED analysis methods did not show conclusively significant effects, but there was some indication that outcome improvement followed changes in expected intervention processes variables. Quantitative and qualitative data together demonstrates acceptability, perceived effectiveness and safety of the intervention. Qualitative interviews and focus groups were also used to gain feedback on intervention content and to make design recommendations to maximise success of later feasibility trials. CONCLUSIONS: This study adds to the growing evidence base for ACT in people with advanced cancer. A number of potential intervention mechanisms, for example a distress-buffering hypothesis, are raised by our data and these should be addressed in future research using randomised controlled trial designs. Our methodological recommendations-including recruiting non-cancer diagnoses, and earlier in the treatment trajectory-likely apply more broadly to the delivery of psychological intervention in the palliative care setting. This study was pre-registered on the Open Science Framework (Ref: 46,033) and retrospectively registered on the ISRCTN registry (Ref: ISRCTN12084782).


Asunto(s)
Terapia de Aceptación y Compromiso , Hospitales para Enfermos Terminales , Tutoría , Neoplasias , Estudios de Factibilidad , Humanos , Neoplasias/terapia , Calidad de Vida
5.
Breast J ; 25(2): 290-295, 2019 03.
Artículo en Inglés | MEDLINE | ID: mdl-30790383

RESUMEN

Despite high distress and unmet informational and psychosocial needs, and recommendations for development of advanced breast cancer (ABC)-specific resources, there remains a paucity of appropriate, accessible psychological interventions. This survey study examined internet use and preferences of women with ABC, to gauge feasibility of providing an ABC-specific internet intervention. Most participants (83%) used the internet daily. Results indicated most women with ABC would find an ABC-specific internet intervention helpful, and that it would address gaps in current internet resources, including provision of strategies to manage treatment side-effects and fear of cancer progression.


Asunto(s)
Neoplasias de la Mama/psicología , Internet , Adulto , Anciano , Australia , Neoplasias de la Mama/terapia , Estudios Transversales , Femenino , Humanos , Persona de Mediana Edad , Grupos de Autoayuda , Estrés Psicológico
6.
Psychooncology ; 27(6): 1572-1579, 2018 06.
Artículo en Inglés | MEDLINE | ID: mdl-29508503

RESUMEN

OBJECTIVE: Caregiver research has relied on composite measures (eg, count) of unmet supportive care needs to determine relationships with anxiety and depression. Such composite measures assume that all unmet needs have a similar impact on outcomes. The purpose of this study is to identify individual unmet needs most associated with caregivers' anxiety and depression. METHODS: Two hundred nineteen caregivers completed the 44-item Supportive Care Needs Survey and the Hospital Anxiety and Depression Scale (minimal clinically important difference = 1.5) at 6 to 8 months and 1, 2, 3.5, and 5 years following the patients' cancer diagnosis. The list of needs was reduced using partial least square regression, and those with a variance importance in projection >1 were analyzed using Bayesian model averaging. RESULTS: Across time, 8 items remained in the top 10 based on prevalence and were labelled "core." Three additional ones were labelled "frequent," as they remained in the top 10 from 1 year onwards. Bayesian model averaging identified a maximum of 3 significant unmet needs per time point-all leading to a difference greater than the minimal clinically important difference. For depression, none of the core unmet needs were significant, rather significance was noted for frequent needs and needs that were not prevalent. For anxiety, 3/8 core and 3/3 frequent unmet needs were significant. CONCLUSIONS: Those unmet needs that are most prevalent are not necessarily the most significant ones, and findings provide an evidence-based framework to guide the development of caregiver interventions. A broader contribution is proposing a different approach to identify significant unmet needs.


Asunto(s)
Ansiedad/psicología , Cuidadores/psicología , Depresión/psicología , Apoyo Social , Adaptación Psicológica , Adulto , Anciano , Teorema de Bayes , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Evaluación de Necesidades , Prevalencia , Investigación
7.
Psychooncology ; 27(1): 34-42, 2018 01.
Artículo en Inglés | MEDLINE | ID: mdl-28432855

RESUMEN

OBJECTIVES: To summarise the evidence-base of psychological interventions for women with metastatic breast cancer, by mode of delivery (group, individual, or low-intensity interventions). To synthesise data regarding core intervention-elements (eg, intervention duration) and context factors (trial setting, uptake and adherence, and demographic characteristics). METHODS: Four databases were searched (inception-May 2016): MEDLINE (OvidSP), PsycINFO (OvidSP), CINAHL (EBSCO), and SCOPUS; reference lists were examined for additional publications. Grey literature was excluded. Outcome data were extracted for survival, distress, quality of life, coping, sleep, fatigue, and/or pain and summarised through narrative synthesis. RESULTS: Fifteen randomised clinical trials (RCTs), reported across 23 articles, met inclusion criteria: 7 groups, 4 individuals, and 4 low-intensity interventions. Overall, interventions improved distress (8/13 RCTs), coping (4/5 RCTs), and pain (4/5 RCTs). No evidence of survival benefit was found. For remaining outcomes, evidence was either insufficient, or too mixed to draw conclusions. Group programs had the strongest evidence-base for efficacy; individual and low-intensity therapy had insufficient evidence to form conclusions. Group interventions had longest intervention durations and lowest uptake and adherence; low-intensity interventions had shortest durations and highest uptake and adherence. Disparities in uptake, adherence, and reach were evident, with the demographic profile of participants polarised to young, Caucasian, English-speaking, partnered women. CONCLUSIONS: There remains a paucity of psychological interventions for women with metastatic breast cancer. Those that exist have an inconsistent evidence-base across the range of patient-reported outcomes. Further research is needed to evaluate accessible delivery formats that ensure efficacy as well as uptake.


Asunto(s)
Adaptación Psicológica , Neoplasias de la Mama/psicología , Neoplasias de la Mama/terapia , Psicoterapia/métodos , Calidad de Vida/psicología , Estrés Psicológico/psicología , Neoplasias de la Mama/patología , Fatiga , Femenino , Humanos , Estrés Psicológico/terapia
8.
Support Care Cancer ; 26(10): 3489-3496, 2018 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-29693203

RESUMEN

PURPOSE: Women with advanced breast cancer (ABC) face significant adjustment challenges, yet few resources provide them with information and support, and attendance barriers can preclude access to face-to-face psychosocial support. This paper reports on two qualitative studies examining (i) whether information and support-seeking preferences of women with ABC could be addressed in an online intervention, and (ii) how an existing intervention for patients with early stage cancer could be adapted for women with ABC. METHODS: Women with ABC participated in telephone interviews about their information and support-seeking preferences (N = 21) and evaluated an online intervention focused on early-stage cancer (N = 15). Interviews were transcribed and underwent thematic analysis using the framework method to identify salient themes. RESULTS: Participants most commonly sought medical, lifestyle-related, and practical information/support; however, when presented with an online intervention, participants most commonly gave positive feedback on content on coping with emotional distress. Difficulty finding information and barriers to using common sources of information/support including health professionals, family and friends, and peers were reported; however, some women also reported not wanting information or support. All participants evaluating the existing intervention gave positive feedback on various components, with results suggesting an online intervention could be an effective means of providing information/support to women with ABC, given improved specificity/relevance to ABC and increased tailoring to individual circumstances and preferences. CONCLUSIONS: Adaptation of an existing online intervention for early stage cancer appears to be a promising avenue to address the information and support needs of women with ABC.


Asunto(s)
Neoplasias de la Mama/patología , Neoplasias de la Mama/psicología , Necesidades y Demandas de Servicios de Salud , Internet , Educación del Paciente como Asunto , Sistemas de Apoyo Psicosocial , Acceso a la Información/psicología , Adaptación Psicológica , Adulto , Anciano , Neoplasias de la Mama/epidemiología , Progresión de la Enfermedad , Femenino , Necesidades y Demandas de Servicios de Salud/normas , Humanos , Entrevistas como Asunto , Persona de Mediana Edad , Educación del Paciente como Asunto/normas , Grupo Paritario , Telemedicina
9.
J Med Genet ; 53(10): 655-61, 2016 10.
Artículo en Inglés | MEDLINE | ID: mdl-27208206

RESUMEN

BACKGROUND: Over recent years genetic testing for germline mutations in BRCA1/BRCA2 has become more readily available because of technological advances and reducing costs. OBJECTIVE: To explore the feasibility and acceptability of offering genetic testing to all women recently diagnosed with epithelial ovarian cancer (EOC). METHODS: Between 1 July 2013 and 30 June 2015 women newly diagnosed with EOC were recruited through six sites in East Anglia, UK into the Genetic Testing in Epithelial Ovarian Cancer (GTEOC) study. Eligibility was irrespective of patient age and family history of cancer. The psychosocial arm of the study used self-report, psychometrically validated questionnaires (Depression Anxiety and Stress Scale (DASS-21); Impact of Event Scale (IES)) and cost analysis was performed. RESULTS: 232 women were recruited and 18 mutations were detected (12 in BRCA1, 6 in BRCA2), giving a mutation yield of 8%, which increased to 12% in unselected women aged <70 years (17/146) but was only 1% in unselected women aged ≥70 years (1/86). IES and DASS-21 scores in response to genetic testing were significantly lower than equivalent scores in response to cancer diagnosis (p<0.001). Correlation tests indicated that although older age is a protective factor against any traumatic impacts of genetic testing, no significant correlation exists between age and distress outcomes. CONCLUSIONS: The mutation yield in unselected women diagnosed with EOC from a heterogeneous population with no founder mutations was 8% in all ages and 12% in women under 70. Unselected genetic testing in women with EOC was acceptable to patients and is potentially less resource-intensive than current standard practice.


Asunto(s)
Proteína BRCA1/genética , Proteína BRCA2/genética , Pruebas Genéticas/economía , Mutación de Línea Germinal , Neoplasias Glandulares y Epiteliales/genética , Neoplasias Ováricas/genética , Adulto , Anciano , Anciano de 80 o más Años , Carcinoma Epitelial de Ovario , Femenino , Predisposición Genética a la Enfermedad , Humanos , Persona de Mediana Edad , Neoplasias Glandulares y Epiteliales/diagnóstico , Neoplasias Ováricas/diagnóstico
10.
J Genet Couns ; 26(6): 1280-1291, 2017 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-28540621

RESUMEN

Decreasing costs of genetic testing and advances in treatment for women with cancer with germline BRCA1/BRCA2 mutations have heralded more inclusive genetic testing programs. The Genetic Testing in Epithelial Ovarian Cancer (GTEOC) Study, investigates the feasibility and acceptability of offering genetic testing to all women recently diagnosed with epithelial ovarian cancer (universal genetic testing or UGT). Study participants and staff were interviewed to: (i) assess the impact of UGT (ii) integrate patients' and staff perspectives in the development of new UGT programs. Semi-structured interviews were conducted with twelve GTEOC Study participants and five members of staff involved in recruiting them. The transcripts were transcribed verbatim and analyzed using Interpretative Phenomenological Analysis. There are two super-ordinate themes: motivations and influences around offers of genetic testing and impacts of genetic testing in ovarian cancer patients. A major finding is that genetic testing is contextualized within the broader experiences of the women; the impact of UGT was minimized in comparison with the ovarian cancer diagnosis. Women who consent to UGT are motivated by altruism and by their relatives' influence, whilst those who decline are often considered overwhelmed or fearful. Those without a genetic mutation are usually reassured by this result, whilst those with a genetic mutation must negotiate new uncertainties and responsibilities towards their families. Our findings suggest that UGT in this context is generally acceptable to women. However, the period shortly after diagnosis is a sensitive time and some women are emotionally overburdened. UGT is considered a 'family affair' and staff must acknowledge this.


Asunto(s)
Genes BRCA1 , Genes BRCA2 , Pruebas Genéticas/estadística & datos numéricos , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Neoplasias Ováricas/genética , Adulto , Anciano , Neoplasias de la Mama/genética , Carcinoma Epitelial de Ovario , Femenino , Predisposición Genética a la Enfermedad , Humanos , Persona de Mediana Edad , Mutación , Neoplasias Glandulares y Epiteliales , Neoplasias Ováricas/diagnóstico
11.
Scand J Caring Sci ; 31(1): 191-200, 2017 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-27163582

RESUMEN

RATIONALE: Given the high number of young adults caring for a family member, and the potential for adverse psychosocial outcomes, there is a need for a screening tool, with clinical utility, to identify those most vulnerable to poor outcomes and to aid targeted interventions. OBJECTIVES: (i) To determine whether current knowledge from cancer literature regarding young carers is generalisable to chronic conditions and, therefore, whether an existing screening tool could be adapted for this population. (ii) To develop a measure of unmet needs in this population and conduct initial psychometric analysis. DESIGN: This was mixed method; interviews in study one informed measure development in study two. Inclusion criteria were as follows: having a parent with a chronic condition and being aged 16-24 years. In study 1, an interpretative phenomenological analysis was conducted on interviews from seven young adults (age range 17-19 years). Study 2 explored factor structure, reliability and validity of the Offspring Chronic Illness Needs Inventory (OCINI). Participants were 73 females and 34 males (mean ages 18.22, SD = 1.16; 18.65, SD = 1.25). MAIN OUTCOME MEASURES: OCINI, Depression Anxiety and Stress Scale, and the Adult Carers Quality of Life Scale. RESULTS: Interviews communicated that the impact of their parent's condition went unacknowledged and resulted in psychosocial, support and informational needs. An exploratory principal axis analysis of the OCINI yielded five factors. Significant and positive correlations were found between unmet needs and stress, anxiety, and depression, and inversely with quality of life. CONCLUSIONS: The scale has applications in clinical settings where these young people, who are at risk of negative psychological outcomes, may be assessed and unmet needs targeted appropriately.


Asunto(s)
Cuidadores/psicología , Enfermedad Crónica/enfermería , Familia/psicología , Neoplasias/enfermería , Neoplasias/psicología , Calidad de Vida/psicología , Estrés Psicológico , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Reino Unido , Adulto Joven
12.
Psychooncology ; 25(10): 1198-1205, 2016 10.
Artículo en Inglés | MEDLINE | ID: mdl-27392214

RESUMEN

OBJECTIVE: Few empirical studies have explored cancer-related experiences of people with an intellectual disability (ID), despite rising cancer incidence in this population. The present research aims to better understand the experiences of this population from multiple perspectives, generating theory and further research questions. METHODS: Six people with ID and cancer, alongside 12 participants from their supportive network (including family and social and health care professionals), were interviewed; transcripts were analyzed using grounded theory. RESULTS: People with ID were often overlooked within cancer consultations and excluded from conversations about their care and treatment-related decisions. Caregivers (family and paid) were relied upon to facilitate communication and understanding and supplement health care professional knowledge. Caregivers' attempts to protect the patient from distress harmed communication further; our interviewees suggest that increased involvement and empowerment mediated cancer-related distress. Where health care professionals possessed good patient-centered skills, and additional support was offered, people with ID were more likely to engage meaningfully in their cancer-related experience. CONCLUSIONS: Interestingly, emergent concepts were consistent with general psycho-oncology literature; however, incidence and severity of difficulty was substantially greater in this sample. This disparity warrants further exploration, with a need for intervention research to develop effective ways of supporting health care professionals in enhancing patient-centered skills with this population. In the clinical setting, patient involvement in health care decisions (despite problems associated with comorbidity) is imperative to optimize engagement.


Asunto(s)
Cuidadores/psicología , Comunicación , Discapacidad Intelectual/psicología , Neoplasias/diagnóstico , Relaciones Profesional-Familia , Adulto , Femenino , Teoría Fundamentada , Personal de Salud , Humanos , Masculino , Neoplasias/psicología , Investigación Cualitativa , Apoyo Social , Estrés Psicológico
13.
Support Care Cancer ; 24(6): 2513-21, 2016 06.
Artículo en Inglés | MEDLINE | ID: mdl-26676239

RESUMEN

PURPOSE: The evidence for the effectiveness of psychological interventions for cancer patients is currently unclear. Acceptance and Commitment Therapy (ACT), which increases individual's levels of psychological flexibility, may be more effective than other frameworks of psychological intervention, but good quality research is needed to inform adoption and implementation. This study explored the correlation between psychological flexibility and patient-reported outcomes to assess the viability of this intervention for cancer survivors. METHODS: Recruitment was coordinated through a regional cancer centre. One hundred twenty-nine respondents completed a cross-sectional postal questionnaire. They were of mixed gender, diagnosis and cancer stage; a mean 61 years old; and a mean 207 days post-diagnosis. Self-report questionnaires assessed psychological flexibility, mood, anxiety, depression, stress, quality of life and benefit finding. RESULTS: Psychological flexibility was a strong and consistent correlate of outcome; effects were maintained even when potentially confounding clinical and sociodemographic characteristics were controlled. CONCLUSIONS: Psychological flexibility can be modified through ACT-based interventions. Given the strong correlational evidence found in this study, it seems that such interventions might be useful for cancer survivors. High-quality and well-designed controlled trials are now needed to establish effectiveness.


Asunto(s)
Terapia de Aceptación y Compromiso/métodos , Neoplasias/psicología , Neoplasias/terapia , Medición de Resultados Informados por el Paciente , Calidad de Vida/psicología , Adulto , Afecto , Anciano , Anciano de 80 o más Años , Ansiedad/etiología , Ansiedad/psicología , Ansiedad/terapia , Estudios Transversales , Depresión/etiología , Depresión/psicología , Depresión/terapia , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estrés Psicológico/etiología , Estrés Psicológico/prevención & control , Estrés Psicológico/terapia , Encuestas y Cuestionarios , Sobrevivientes
14.
J Intellect Disabil ; 19(2): 178-94, 2015 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-25567097

RESUMEN

BACKGROUND: Increased life expectancy has led to an increase in diagnoses of chronic illness in people with an intellectual disability; despite this increase, research about the psychological impact is rare. This review explored the psychosocial experiences of chronic illness in adults with an intellectual disability, revealing potential predictors and moderators of these experiences. METHODS: Online databases were systematically searched to identify relevant literature, using predefined inclusion criteria. Of the 25,058 titles initially identified, 4 were included, that is, those collecting data on people with an intellectual disability and diagnosed with cancer (n = 2), chronic pain (n = 1) and diabetes (n = 1). RESULTS: Narrative synthesis of the data identified six themes, namely, (1) delayed diagnosis, (2) information, communication and understanding, (3) negative psychological consequences, (4) negative physical consequences, (5) social perception and (6) social support. CONCLUSIONS: There are unmet needs within this population, including a lack of assistance in understanding their illness. A substantial gap in the literature should be addressed through further empirical work.


Asunto(s)
Enfermedad Crónica/psicología , Discapacidad Intelectual/psicología , Humanos
17.
Cancers (Basel) ; 16(6)2024 Mar 08.
Artículo en Inglés | MEDLINE | ID: mdl-38539431

RESUMEN

The Sarcoma Assessment Measure (SAM) was developed as a sarcoma-specific patient-reported outcome measure to be used in clinical practice. We have reported in detail how SAM has been developed in collaboration with patients and healthcare professionals. The aim of this paper is to report the preliminary validation of SAM. The 22-item SAM was administered alongside a validated quality of life questionnaire and measure of activities of daily living. Linear modelling was used to build a measure, which had predictive validity in comparison to more established outcome measures. Of the 762 patients who participated in the study, 44.1% identified as male, and participant age ranged from 13 to 82 years. Clinically, participants presented with a range of soft tissue (82.2%) and bone (21.8%) sarcomas. Our preliminary analysis indicates that SAM accounts for 35% of the global quality of life scale and 18% of the Toronto Extremity Salvage Scale (TESS); so psychometrically, it overlaps with quality of life and activities of daily living, but also measures distinct concerns. This demonstrates that this measure picks up issues that are important to patients with sarcoma that are not reflected in other measures. We have established the preliminary validity of SAM and believe it has utility as a patient-reported outcome measure both as a research tool and for assessing the impact of symptoms and dysfunction related to sarcoma as part of clinical care. Further validation using a larger and more clinically diverse sample is now needed.

18.
J Med Ethics ; 39(11): 713-6, 2013 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-23378530

RESUMEN

Public and healthcare professionals differ in their attitudes towards euthanasia and physician-assisted suicide (PAS), the legal status of which is currently in the spotlight in the UK. In addition to medical training and experience, religiosity, locus of control and patient characteristics (eg, patient age, pain levels, number of euthanasia requests) are known influencing factors. Previous research tends toward basic designs reporting on attitudes in the context of just one or two potentially influencing factors; we aimed to test the comparative importance of a larger range of variables in a sample of nursing trainees and non-nursing controls. One hundred and fifty-one undergraduate students (early-stage nursing training, late-stage nursing training and non-nursing controls) were approached on a UK university campus and asked to complete a self-report questionnaire. Participants were of mixed gender and were on average 25.5 years old. No significant differences in attitude were found between nursing and non-nursing students. There was a significant positive correlation between higher religiosity and positive attitude toward euthanasia (r=0.19, p<0.05) and a significant negative relationship between internal locus of control and positive attitude toward PAS (r=-0.263, p<0.01). Multivariate analyses revealed differing predictor models for attitudes towards euthanasia and PAS, and confirm the importance of individual differences in determining these attitudes. The unexpected direction of association between religiosity and attitudes may reflect a broader cultural shift in attitudes since earlier research in this area. Furthermore, these findings suggest it possible that experience, more than training itself, may be a bigger influence on attitudinal differences in healthcare professionals.


Asunto(s)
Actitud del Personal de Salud , Eutanasia/ética , Eutanasia/psicología , Control Interno-Externo , Suicidio Asistido/ética , Suicidio Asistido/psicología , Adulto , Factores de Edad , Eutanasia/legislación & jurisprudencia , Femenino , Humanos , Esperanza de Vida , Masculino , Dolor , Religión , Suicidio Asistido/legislación & jurisprudencia , Encuestas y Cuestionarios
19.
Cancers (Basel) ; 15(3)2023 Feb 02.
Artículo en Inglés | MEDLINE | ID: mdl-36765920

RESUMEN

Fear of cancer recurrence (FCR) is a persistent concern among those living with cancer and is associated with a variety of negative psychosocial outcomes. However, people with sarcoma have been underrepresented within this area of research. We aimed to determine the prevalence of FCR experienced by people with sarcoma in the United Kingdom and explore factors that may predict FCR, such as the perceived impact of cancer and psychological flexibility. Participants (n = 229) with soft tissue (n = 167), bone (n = 25), and gastrointestinal stromal tumours (n = 33) completed an online survey including the self-reported measures of FCR, the perceived physical and psychological impact of cancer and psychological flexibility, and demographic information. Data were analysed using ANOVA and multiple regression modelling. Mean FCR scores (M = 91.4; SD = 26.5) were higher than those reported in meta-analytic data inclusive of all cancer types (M = 65.2; SD = 28.2). Interest in receiving support for FCR was also high (70%). Significant factors associated with FCR included cognitive and emotional distress and psychological flexibility, but not perceptions of the physical impact of cancer (R2 = 0.56). The negative association between psychological flexibility and FCR suggests the potential benefit of intervention approaches which foster psychological flexibility, such as acceptance and commitment therapy.

20.
Psychooncology ; 21(8): 857-67, 2012 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-21695744

RESUMEN

OBJECTIVE: Significant numbers of cancer patients suffer distress, reduced quality of life and various other psychological problems. Evidence regarding psychological predictors of these outcomes is inconsistent. This study explored a range of predictors using an established psychological framework to identify the most important predictors of cancer adjustment, and when these are best assessed for optimal outcome prediction. METHODS: One hundred sixty newly diagnosed breast, colorectal, lung and prostate cancer patients completed questionnaires after diagnosis and at 3- and 6-month follow-up. Measures included personality, illness cognitions, emotion, coping and outcome (anxiety, depression and quality of life). RESULTS: Between 47-74% of variance in psychosocial outcome was explained although large proportions were accounted for by clinical factors, demographics and earlier levels of anxiety, depression and quality of life. Of the psychological variables, cognitive appraisals featured more consistently then either emotions or coping. CONCLUSIONS: There are clear and consistent predictors of negative psychosocial outcome that could be used in clinical practice to risk-assess and monitor patients for adjustment difficulties. The finding that appraisals were more predictive of outcome than emotions and coping may inform the development of psychological interventions for cancer patients.


Asunto(s)
Adaptación Psicológica , Ansiedad/psicología , Depresión/psicología , Neoplasias/psicología , Calidad de Vida/psicología , Anciano , Estudios de Cohortes , Emociones , Femenino , Humanos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Personalidad , Análisis de Regresión , Factores de Riesgo , Estrés Psicológico/psicología
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