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OBJECTIVE: This qualitative descriptive study draws on data collected from a sub-sample of 15 women participating in a national study (n = 60) exploring the breast cancer screening motivations and behaviours of women aged ≥75 years. The study aimed to understand why women living in rural and remote areas might continue accessing mobile breast cancer screening despite being outside the targeted age range. SETTING: Settings ranged from large towns to very remote communities (according to Monash Modified Model (MMM) classification 3-7) where BreastScreen Australia mobile screening services were available. PARTICIPANTS: Interview data from 15 women aged ≥75 years living in rural and remote locations who had used mobile screening services was utilised for this study. DESIGN: In-depth individual interviews were conducted via telephone or online platform (Zoom). These were transcribed verbatim and imported into NVivo software to enable thematic analysis to identify key themes. RESULTS: Many women aged ≥75 years in rural and remote areas expressed clear intentions to continue breast cancer screening, despite no longer being invited to do so. They perceived great value in the mobile service and were highly appreciative for it yet acknowledged limited sources of information about the process of ongoing screening. CONCLUSION: Few women in rural and remote areas had discussed ongoing breast cancer screening with their general practitioner (GP). More information is required to inform women about the risks and benefits of ongoing screening. Without an invitation to attend screening rural women reported difficulty in knowing when the service would be available. Ongoing notification of the availability of mobile services for women aged ≥75 years in rural areas is recommended.
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BACKGROUND: Digital health literacy has emerged as a critical skill set to navigate the digital age. OBJECTIVE: This review sought to broadly summarize the literature on associations between digital health literacy and (1) sociodemographic characteristics, (2) health resource use, and (3) health outcomes in the general population, patient groups, or parent or caregiver groups. METHODS: A rapid review of literature published between January 2016 and May 2022 was conducted through a search of 4 web-based databases. Articles were included on the basis of the following keywords: "measured digital health literacy," "digital literacy," "ehealth literacy," "e-health literacy," "electronic health literacy," or "internet health literacy" in adult populations; participants were from countries where English was the primary language; studies had to be cross-sectional, longitudinal, prospective, or retrospective, and published in English. RESULTS: Thirty-six articles met the inclusion criteria. Evidence on the associations between digital health literacy and sociodemographic characteristics varied (27/36, 75% included studies), with higher education (16/21, 76.2% studies that examined the association) and younger age (12/21, 57.1% studies) tending to predict higher digital health literacy; however, other studies found no associations. No differences between genders were found across the majority of studies. Evidence across ethnic groups was too limited to draw conclusions; some studies showed that those from racial and ethnic minority groups had higher digital health literacy than White individuals, while other studies showed no associations. Higher digital health literacy was associated with digital health resource use in the majority of studies (20/36, 55.6%) that examined this relationship. In addition, higher digital health literacy was also associated with health outcomes across 3 areas (psychosocial outcomes; chronic disease and health management behaviors; and physical outcomes) across 17 included studies (17/36, 47.2%) that explored these relationships. However, not all studies on the relationship among digital health literacy and health resource use and health outcomes were in the expected direction. CONCLUSIONS: The review presents mixed results regarding the relationship between digital health literacy and sociodemographic characteristics, although studies broadly found that increased digital health literacy was positively associated with improved health outcomes and behaviors. Further investigations of digital health literacy on chronic disease outcomes are needed, particularly across diverse groups. Empowering individuals with the skills to critically access and appraise reliable health information on digital platforms and devices is critical, given emerging evidence that suggests that those with low digital health literacy seek health information from unreliable sources. Identifying cost-effective strategies to rapidly assess and enhance digital health literacy capacities across community settings thus warrants continued investigation.
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BACKGROUND: This scoping review aimed to identify and present the evidence describing key motivations for breast cancer screening among women aged ≥ 75 years. Few of the internationally available guidelines recommend continued biennial screening for this age group. Some suggest ongoing screening is unnecessary or should be determined on individual health status and life expectancy. Recent research has shown that despite recommendations regarding screening, older women continue to hold positive attitudes to breast screening and participate when the opportunity is available. METHODS: All original research articles that address motivation, intention and/or participation in screening for breast cancer among women aged ≥ 75 years were considered for inclusion. These included articles reporting on women who use public and private breast cancer screening services and those who do not use screening services (i.e., non-screeners). The Joanna Briggs Institute (JBI) methodology for scoping reviews was used to guide this review. A comprehensive search strategy was developed with the assistance of a specialist librarian to access selected databases including: the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline, Web of Science and PsychInfo. The review was restricted to original research studies published since 2009, available in English and focusing on high-income countries (as defined by the World Bank). Title and abstract screening, followed by an assessment of full-text studies against the inclusion criteria was completed by at least two reviewers. Data relating to key motivations, screening intention and behaviour were extracted, and a thematic analysis of study findings undertaken. RESULTS: A total of fourteen (14) studies were included in the review. Thematic analysis resulted in identification of three themes from included studies highlighting that decisions about screening were influenced by: knowledge of the benefits and harms of screening and their relationship to age; underlying attitudes to the importance of cancer screening in women's lives; and use of decision aids to improve knowledge and guide decision-making. CONCLUSION: The results of this review provide a comprehensive overview of current knowledge regarding the motivations and screening behaviour of older women about breast cancer screening which may inform policy development.
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Neoplasias de la Mama , Detección Precoz del Cáncer , Motivación , Humanos , Femenino , Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/psicología , Anciano , Detección Precoz del Cáncer/psicología , Mamografía/psicología , Mamografía/estadística & datos numéricos , Conductas Relacionadas con la Salud , Aceptación de la Atención de Salud/psicología , Aceptación de la Atención de Salud/estadística & datos numéricos , Conocimientos, Actitudes y Práctica en Salud , Tamizaje Masivo/psicología , Tamizaje Masivo/métodosRESUMEN
PURPOSE: Cancer caregivers from culturally and linguistically diverse (CALD) communities have reported significant unmet emotional support needs. This study aimed explore the role of social support to manage emotional wellbeing among cancer caregivers from Arabic and Chinese communities in Australia. METHODS: Semi-structured interviews were conducted with Chinese (n = 12) and Arabic (n = 12) speaking cancer caregivers. Participants' mean age was 40.6 years; majority were female (83%) and providing care to a parent (41.67%). RESULTS: Using thematic analysis to analyse interview data, five overarching themes emerged describing caregivers' perspectives on social support. Themes were related to the following: (1) receiving emotional support from social networks, (2) barriers to accessing emotional support from social networks, (3) isolation and loss of connection following the cancer diagnosis, (4) faith as a source of support, and (5) utility of support groups and caregiver advocates. Several caregivers relied on social networks for emotional support; however, caregivers identified key cultural and generational barriers to seeking support from their social networks which prevented caregivers from disclosing their emotions and caregiving situation. Caregivers also reported being isolated from their support system. CONCLUSION: Empirical testing of culturally appropriate strategies that improve social support seeking among caregivers from CALD communities is recommended.
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Árabes , Cuidadores , Neoplasias , Investigación Cualitativa , Apoyo Social , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Árabes/psicología , Pueblo Asiatico/psicología , Australia , Cuidadores/psicología , Pueblos del Este de Asia , Entrevistas como Asunto , Neoplasias/psicologíaRESUMEN
OBJECTIVES: Although some research suggests that caregivers from culturally and linguistically diverse (CALD) communities have higher unmet information needs compared to their English-speaking counterparts, few studies have examined determinants of information needs among CALD cancer caregivers and their satisfaction with received information. This study aimed to explore experiences with cancer-related information among caregivers of people with cancer from CALD communities. METHODS: Semi-structured interviews were conducted with 24 caregivers from Arabic and Chinese backgrounds (12 in each group). Thematic analysis was used to analyze data. RESULTS: Participants' mean age was 40.6 years, and most were female (83%). Six themes were identified: (a) lack of information to meet their needs; (b) challenges understanding cancer- and care-related information; (c) proactivity to make sense of, and understand information; (d) interpreting information: the role formal and informal services; and (e) engaging with health providers to access information. CONCLUSIONS: Caregivers identified significant language and communication barriers impacting their capacity to understand cancer-related information given by providers and they invested personal effort clarifying information. The importance of access to formal interpreter services, even when caregivers and care recipients seem proficient in English, was highlighted. Cultural sensitivity of providers when discussing a cancer diagnosis and treatment was also identified as an important consideration. SIGNIFICANCE OF RESULTS: Culturally tailored outreach programs designed to provide key cancer-related information which are accessible to CALD caregivers have the potential to improve the health outcomes of both caregivers and care recipients.
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OBJECTIVE: A digital divide exists for people from rural and regional areas where they are less likely and confident to engage in digital health technologies. The aim of this study was to evaluate the digital health literacy and engagement of people from rural and regional communities, with a focus on identifying barriers and facilitators to using technology. RESULTS: Forty adults living in rural/regional areas completed a survey consisting of the eHealth Literacy Scale (eHEALS) with additional items surveying participants' experience with a range of digital health technologies. All participants had used at least one digital health technology. Most (80%) participants had an eHEALS score of 26 or above indicating confidence in online health information. Commonly reported barriers to digital health technology use centred on product complexity and reliability, awareness of resources, lack of trust, and cost. Effective digital health technology use is becoming increasingly important, there may be a need to prioritise and support people with lower levels of digital health literacy. We present opportunities to support community members in using and accessing digital health technology.
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Brecha Digital , Alfabetización en Salud , Telemedicina , Adulto , Humanos , Salud Digital , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , TecnologíaRESUMEN
AIM: The aim of the systematic review was to identify conceptual models and interventions designed to improve health literacy in caregivers of adults with a chronic disease/disability. METHODS: MEDLINE, CINAHL, PsycINFO and Embase were searched for relevant literature. Articles were included if they focused on adults who provided informal care to someone aged 18+ with a chronic disease/disability. Quantitative studies were included if they reported an intervention designed to improve caregiver health literacy (CHL) and assessed outcomes using a validated measure of health literacy. Qualitative and mixed method studies were included if they described a conceptual model or framework of CHL or developed/assessed the feasibility of an intervention. Study quality was appraised using the Mixed Methods Assessment Tool. RESULTS: Eleven studies were included. Five studies used pre-post design to assess outcomes of an intervention; four described intervention development and/or pilot testing; two described conceptual models. Two of five studies reported pre-post intervention improvements in CHL; one reported an improvement in one of nine health literacy domains; two reported no improvements following intervention. Interventions predominantly aimed to improve: caregiver understanding of the disease, treatment and potential outcomes, day-to-day care, self-care and health provider engagement. Few interventions targeted broader interpersonal and health service factors identified as influencing CHL. DISCUSSION: Evidence on the development and assessment of comprehensive CHL interventions is scarce. Recommendations include the development of interventions that are guided by a CHL framework to ensure they address individual, interpersonal and health service/provider factors that influence CHL.
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OBJECTIVE: In Australia, breast screening is offered free every two years to women aged 50-74 years. Women aged ≥75 are eligible to receive a free mammogram but do not receive an invitation. This study aimed to explore the motivations and behaviours of women living in Australia aged ≥75 years regarding ongoing breast cancer screening given the public health guidance. METHODS: Sixty women aged ≥75 were recruited from metropolitan, regional, and rural areas across Australia to participate in a descriptive qualitative study. Semi-structured interviews were used to seek reflection on women's experience of screening, any advice they had received about screening beyond 75, their understanding of the value of screening and their intention to participate in the future. Thematic analysis of transcripts led to the development of themes. RESULTS: Themes resulting from the study included: reasons to continue and discontinue screening, importance of inclusivity in the health system and availability of information. Regular screeners overwhelmingly wished to continue screening and had strong beliefs in the benefits of screening. Women received limited information about the benefits or harms of screening beyond age 75 and very few had discussed screening with their Primary Healthcare Provider. No longer receiving an invitation to attend screening impacted many women's decision-making. CONCLUSION: More information via structured discussion with health professionals is required to inform women about the risks and benefits of ongoing screening. No longer being invited to attend screening left many women feeling confused and for some this led to feelings of discrimination.
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Neoplasias de la Mama , Femenino , Humanos , Neoplasias de la Mama/diagnóstico , Motivación , Toma de Decisiones , Detección Precoz del Cáncer , Mamografía , Tamizaje Masivo/métodosRESUMEN
PURPOSE: To (1) explore associations between paediatric nurses' perceptions of their own compassion, the practice environment, and quality of care, and (2) identify factors that influence perceived quality of care. DESIGN AND METHODS: Cross-sectional survey of paediatric nurses (n = 113) from a hospital network in Melbourne, Australia. The survey included the Compassion Scale, Practice Environment Scale of the Nurse Work Index (PES-NWI), a single quality of care item, and demographic items. Hierarchical regression was used to explore factors that predicted perceived care quality. RESULTS: There were moderate positive correlations between perceived care quality and both compassion (rho = 0.36, p < .001) and practice environment (i.e., total PES-NWI: rho = 0.45, p < .001). There were significant differences in perceived care quality based on nurses' work area (i.e., critical care vs medical/surgical wards). The final hierarchical regression analysis included compassion (Step 2) and four of five PES-NWI subscales (Step 3), controlling for work area (Step 1). The model was statistically significant and explained 44% of variance in perceived quality; compassion and PES-NWI subscale 2 (Nursing foundations for quality of care) were statistically significant predictors. CONCLUSIONS: Paediatric nurses' perceptions of quality were influenced by their own compassion for others and elements of the practice environment, particularly nursing foundations for care quality, which is characterised by a clear nursing philosophy and model of care, with programs and processes to support practice. PRACTICE IMPLICATIONS: The findings offer insights into potentially modifiable individual and workplace factors that contribute to paediatric nurses' perceptions of care quality.
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Enfermeras Pediátricas , Enfermeras y Enfermeros , Personal de Enfermería en Hospital , Niño , Humanos , Estudios Transversales , Empatía , Encuestas y Cuestionarios , Calidad de la Atención de Salud , Lugar de Trabajo , Satisfacción en el TrabajoRESUMEN
BACKGROUND: Caregivers play an important role supporting people diagnosed with cancer, yet report significant unmet information and support needs that impact on their psychological wellbeing. Health literacy and social connectedness are key factors that influence wellbeing, yet few studies have examined their relative role in psychological wellbeing of carers. This study investigated relationships between caregiver and care recipient health literacy, social support, and social connectedness on psychological morbidity in a cancer setting. METHODS: This cross-sectional study included 125 caregiver-cancer care recipient dyads. Participants completed the Health Literacy Survey-EU-Q16, Social Connectedness Scale-Revised, the Medical Outcomes Study-Social Support Survey, and the Depression, Anxiety and Stress Scale-21 (DASS21). Relationships between factors were examined using hierarchical multiple regression with care recipient factors entered at Step 1 and caregiver factors at Step 2. RESULTS: Most caregivers provided care for their spouse (69.6%); caregivers mean total DASS21 score was 24.38 (SD = 22.48). Mean DASS21 subscale scores for depression, anxiety, stress in caregivers were 4.02 (SD = 4.07), 2.7 (SD = 3.64), and 5.48 (SD = 4.24) respectively, suggesting normal range of depression and stress, and mild anxiety. Care recipients had a diagnosis of breast (46.4%), gastrointestinal (32.8%), lung (13.6%), or genitourinary (7.2%) cancer, and a mean DASS21 score of 31.95 (SD = 20.99). Mean DASS21 subscale scores for depression, anxiety, stress in care recipients were 5.10 (SD = 4.18), 4.26 (SD = 3.65), and 6.62 (SD = 3.99) respectively, suggesting mild depression and anxiety, and normal stress scores. Regression analyses showed that only caregiver factors (age, illness/disability, health literacy and social connectedness) were independent predictors of caregiver psychological morbidity (F [10,114] = 18.07, p < 0.001). CONCLUSION(S): Only caregiver, and not care recipient, factors were found to influence caregiver psychological morbidity. While both health literacy and social connectedness influenced caregiver psychological morbidity, perceived social connectedness had the strongest influence. Interventions that ensure caregivers have adequate health literacy skills, as well as understand the value of social connection when providing care, and are supported to develop skills to seek support, have the potential to promote optimal psychological wellbeing in cancer caregivers.
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Cuidadores , Alfabetización en Salud , Humanos , Cuidadores/psicología , Estudios Transversales , Apoyo Social , Morbilidad , Depresión/psicología , Estrés PsicológicoRESUMEN
Social concepts such as loneliness and social isolation are fairly new factors that have been recently gaining attention as to their involvement in changes in cognitive function and association with dementia. The primary aim of this narrative review was to describe the current understanding of how loneliness and social isolation influence cognitive aging and how they are linked to dementia. Studies have shown that there is an association between loneliness, social isolation, and reduced cognitive function, in older adults, across multiple cognitive domains, as well as a heightened risk of dementia. Numerous changes to underlying neural biomechanisms including cortisol secretion and brain volume alterations (e.g., white/grey matter, hippocampus) may contribute to these relationships. However, due to poor quality research, mixed and inconclusive findings, and issues accurately defining and measuring loneliness and social isolation, more consistent high-quality interventions are needed to determine whether studies addressing loneliness and social isolation can impact longer term risk of dementia. This is especially important given the long-term impact of the COVID-19 pandemic on social isolation in older people is yet to be fully understood.
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AIM: The study aim was to evaluate the feasibility and efficacy of a digital App developed to enhance patient communication with nurses during bedside nursing handover at shift change. METHODS: Six nurses and 11 patient actors/volunteers participated in 12 simulated nursing handovers across six simulation workshops. Over half the patients were aged 70+ years (55%); majority were female (82%). Handover video recordings were analysed using a structured observation tool and a revised Four Habits Coding Scheme to assess nurses' handover communication skills. Patient and nurse feedback was also sought. The STROBE checklist (Data S1) guided preparation of the study. RESULTS: For all simulated handovers (n = 12): Nurses greeted the patient at commencement; nurses made eye contact with the patient; patients were given opportunity to ask questions; and all patient questions were answered. Nurses explained the handover process for less than half the handovers (42%). Familiarity with the patient's history was evident in every handover. Communication behaviours identified in most handovers included: good nonverbal behaviour; allowing time for the patient to absorb information; giving clear explanations; involving the patient in decisions; and exploring acceptability of the care plan. Patient and nurse feedback on the App included: The App was easy to navigate, features were well-liked, with some improvements suggested. CONCLUSION: Patients and nurses provided positive feedback for the App during hospital stay and at handover. The App has the potential to enhance existing handover processes and increase safety of hospital care by using technology to educate and empower patients/carers to be active partners in communication with nurses during change-of-shift handover. RELEVANCE TO CLINICAL PRACTICE: The App empowers and enables patients/carers to actively participate in nursing handover and allows patients to communicate concerns and provide information to their nursing team, facilitating a new approach. PATIENT OR PUBLIC CONTRIBUTION: Patients and carers were involved in the research from the original co-design workshops that guided the development of the handover App. The research aims and outcome measures were informed by the experiences and preferences of patients/carers. Two patient representatives were involved in writing and submission of the grant application for the study to evaluate the efficacy of the App and were listed as co-authors on this paper. Patient volunteers were involved in the current study to pilot test the handover App. Patient volunteers were recruited through a consumer representative and volunteer registry at the health service. They participated in simulated nursing handovers with two nurses to assess the feasibility and acceptability of the handover App and then provided feedback and suggestions for improvement.
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Aplicaciones Móviles , Pase de Guardia , Femenino , Humanos , Masculino , Comunicación , Comunicación no Verbal , Atención Dirigida al Paciente , AncianoRESUMEN
OBJECTIVES: Caregivers play a key role in providing support to people with cancer. However, caregiving can be stressful and demanding, resulting in perceived caregiver burden. Social connectedness is considered partially independent from social support, yet few studies have examined whether social connectedness impacts caregiver burden. The current study sought to examine: (a) associations among social support, social connectedness and burden in a sample of cancer caregivers and (b) the mediating effect of social connectedness on the relationship between social support and caregiver burden. METHODS: A descriptive cross-sectional study was conducted. Data were collected as part of a larger project. The sample included 125 caregiver-cancer care recipient dyads. Caregivers completed the Social Connectedness Scale-Revised, the Medical Outcomes Study-Social Support Survey and the Zarit Burden Interview. Descriptive statistics, hierarchical multiple regression and mediation analyses were used to examine relationships between variables. RESULTS: Correlation analyses showed higher perceived social support and social connectedness were significantly correlated with lower-reported caregiver burden (p<0.05). The hierarchical regression model showed that both social support and social connectedness were independent predictors of caregiver burden (p<0.001). Social connectedness partially mediated the relationship between social support and caregiver burden. CONCLUSIONS: This study provides new evidence that social support buffers the negative effects of burden in caregivers, suggesting these are potentially modifiable factors of caregiver burden. Increased understanding of the factors that contribute to burden among cancer caregivers will inform targeted supportive care strategies to improve psychological health and well-being in this underserved group.
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AIM: To explore nurses' and family members' perspectives of family care at the end of life, during restricted visitation associated with the COVID-19 pandemic. BACKGROUND: To minimise the transmission of COVID-19, stringent infection prevention and control measures resulted in restricted hospital access for non-essential workers and visitors, creating challenges for the provision of family-centred care at the end of life. DESIGN: Qualitative descriptive approach based on naturalistic inquiry. METHODS: At a large public hospital in Melbourne, Australia, individual semi-structured interviews were undertaken with 15 registered nurses who cared for patients who died during restricted visitation associated with the COVID-19 pandemic, and 21 bereaved family members. COREQ guidelines informed analysis and reporting. RESULTS: Five themes developed from the data: (i) impact of visitor restrictions, which describes uncertain, ambiguous and arbitrary rules, onerous and inconsistent requirements; (ii) nurse-family communication; (iii) family-centred care and interrupted connections; (iv) well-being and negative emotions; and (v) suggestions for a better way, such as moving away from the black and whiteness of the rules, prioritising communication, compassion and advocacy. CONCLUSIONS: Negative consequences for communication and the patient-family connection at the end of life were felt deeply. The evolving COVID-19 rules that were frequently revised and applied at short notice, and the subsequent consequences for clinical practices and care were felt deeply. RELEVANCE TO CLINICAL PRACTICE: Technology-facilitated communication, innovation and increased resources must be prioritised to overcome the challenges described in this study. A family-centred approach to care and emphasising the patient-family connection at the end of life is fundamental to minimising trauma and distress associated with future public health emergencies. PATIENT OR PUBLIC CONTRIBUTION: Bereaved family members contributed their first-hand experience. Members of the health service's patient experience team ensured the research was conducted in accordance with health service guidelines for patient and public contribution.
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COVID-19 , Pandemias , Humanos , COVID-19/epidemiología , Investigación Cualitativa , Hospitales Públicos , MuerteRESUMEN
OBJECTIVE: Enhancing cancer patients' sense of control can positively impact psychological well-being. We developed and assessed the psychometric properties of Valued Outcomes in the Cancer Experience (VOICE)TM, a measure of patients' perceived control over key personal priorities within their cancer experience. METHODS: VOICE construction and testing were completed in three phases with separate participant samples: (1) item generation and initial item pool testing (N = 459), (2) scale refinement (N = 623), and (3) confirmatory validation (N = 515). RESULTS: A 21-item measure was developed that captures cancer patients' sense of control in seven key domains: (1) Purpose and Meaning, (2) Functional Capacity, (3) Longevity, (4) Quality Care, (5) Illness Knowledge, (6) Social Support, and (7) Financial Capability. VOICE demonstrated adequate internal consistency (full-scale α = 0.93; factor α = 0.67-0.89) and adequate to strong convergent and discriminatory validity. SIGNIFICANCE OF RESULTS: VOICE measures cancer patients' perceived control across a diverse range of personal priorities, creating a platform for elevating patient perspectives and identifying pathways to enhance patient well-being. VOICE is positioned to guide understanding of the patient experience and aid the development and evaluation of supportive care interventions to enhance well-being.
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Neoplasias , Apoyo Social , Humanos , Encuestas y Cuestionarios , Reproducibilidad de los Resultados , Bienestar Psicológico , Psicometría/métodos , Neoplasias/complicacionesRESUMEN
OBJECTIVE: Haematological cancer patients are particularly vulnerable to the effects of COVID-19. In addition to being immunocompromised, pandemic-related travel restrictions have impacted access to treatments and overseas stem cell donations for patients requiring transplantation. Given this vulnerability, people with haematological cancers are at risk of experiencing heightened distress during the pandemic. This study aimed to explore haematological cancer patients' experiences and needs. METHODS: Twenty-four Australian haematological cancer patients completed semi-structured interviews exploring their concerns and worries during the pandemic, impact of pandemic on management of disease, access to information and support, lifestyle changes, and attitudes towards emerging models of healthcare during the pandemic. Interview transcripts were thematically analysed. RESULTS: Four themes reflecting the experiences of haematological cancer patients during the pandemic were identified: 'Fears about contracting COVID-19' (behaviour changes to protect health, impact on daily routine and habits, annoyance at dismissive attitude of others toward COVID-19); 'Reduced sense of connection and support' (reduced social support and access to external support services); 'New challenges' (increased financial hardship, worsened health), and; 'Underlying system and communication issues' (access to trusted information, satisfaction/dissatisfaction with care, navigating telehealth). Participants expressed a need for improved access to support services and trusted information. CONCLUSIONS: The findings emphasise the additional challenges experienced by haematological cancer patients during the COVID-19 pandemic and their impact on daily life. Results point to the importance of validation of increased distress during periods of uncertainty; reinforcing recommendations about high-quality sources of information; and facilitating access to support services when face-to-face care is limited.
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COVID-19 , Neoplasias Hematológicas , Australia/epidemiología , COVID-19/epidemiología , Neoplasias Hematológicas/terapia , Humanos , Pandemias , SARS-CoV-2RESUMEN
Chronic lymphocytic leukemia (CLL) often requires consideration of multiple treatment options. Shared decision-making (SDM) is important, given the availability of increasingly novel therapies; however, patient-provider treatment conversations vary. We examined relationships between patient-provider discussions of new CLL treatment options and sociodemographic, clinical, and patient-provider communication variables among 187 CLL patients enrolled in Cancer Support Community's Cancer Experience Registry. Factors significantly associated with self-reports of whether patients' providers discussed new CLL treatment options with them were examined using χ2 tests, t tests, and hierarchical logistic regression. Fifty-eight percent of patients reported discussing new treatment options with their doctor. Patients with higher education were 3 times more likely to discuss new treatment options relative to those with lower education (OR = 3.06, P < .05). Patients who experienced a cancer recurrence were 7 times more likely to discuss new treatment options compared to those who had not (OR = 7.01, P < .05). Findings offer insights into the correlates of patient-provider discussions of new CLL treatment options. As novel therapies are incorporated into standards of care, opportunities exist for providers to improve patient care through enhanced SDM.
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Despite evidence that survivorship support programmes enhance physical and psychosocial wellbeing, cancer patients and survivors often do not use these supportive care services. This study investigated the utility of the Common Sense Model of Self-Regulation for predicting supportive care use following cancer, and the mediating role of coping strategies. Cancer patients and survivors (n = 336 from Australia, n = 61 from the UK; 191 males, 206 females) aged 20-83 years (Mean (M) = 62.73, Standard Deviation (SD) = 13.28) completed an online questionnaire. Predictor variables were cognitive and emotional representations of cancer, as measured by the Illness Perception Questionnaire-Revised (IPQ-R), and problem- and emotion-focused coping strategies, as measured by the Brief-Coping Orientation to Problems Experienced inventory (Brief-COPE). The outcome variable was survivorship support programme use within the preceding month. Perceived personal control over cancer predicted supportive care use, but cancer-related emotional distress did not. Coping was an inconsistent mediator of the relationships. Problem-focused coping mediated the relationship between personal control and supportive care use; emotion-focused coping did not mediate between emotional responses to cancer and the uptake of survivorship support programmes. The Common Sense Model provides a useful framework for understanding survivorship support programme use. However, more clarity around the relationship between illness beliefs and coping is required.