The role of social support among caregivers of people with cancer from Chinese and Arabic communities: a qualitative study.

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.

Experiences with health information among caregivers of people with cancer from culturally and linguistically diverse backgrounds: A qualitative study.

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.

Evaluating the efficacy of a digital App to enhance patient-centred nursing handover: A simulation study.

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.

Caregiver and care recipient health literacy, social support and connectedness on caregiver psychological morbidity: A cross-sectional dyad survey.

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.

Valued Outcomes in the Cancer Experience (VOICE)™: Development and validation of a multidimensional measure of perceived control.

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.

Improving access to cancer information and supportive care services: A systematic review of mechanisms applied to link people with cancer to psychosocial supportive care services.

OBJECTIVE: Previous research has described the low uptake of psychosocial support services in people living with cancer. While characteristics of individuals using services have been examined, mechanisms applied to link individuals to support services are less frequently considered. This review aims to identify the mechanisms used to link people with cancer to support services and assess their impact. METHODS: Systematic searches of Pubmed, CINAHL, EMBASE and PsycINFO were conducted up to May 2020. Studies reporting service use associated with mechanisms to link adults with cancer to support services targeting emotional, informational, practical or social support needs were eligible. Eligible study designs included controlled trials, pre-post designs and observational studies. Study quality was assessed and a narrative synthesis of findings undertaken. RESULTS: A total of 10 papers (from 8,037 unique titles) were eligible. Testing the feasibility of the linkage mechanism was the primary aim in five (50%) studies. Three linkage mechanisms were identified: (a) outreach from the support service; (b) clinician recommendation/referral; (c) mailed invitation. Outreach was the most successful in connecting people with cancer to services (52%-90% use); clinician recommendation/referral was least successful (3%-28%). The impact of different linkage mechanisms for different demographic groups was not assessed. CONCLUSIONS: Outreach from services shows the most potential for increasing access to support services. However, the limited number of studies and limitations in the types of support services people with cancer were linked to, demonstrated the need for further work in this area. Identifying mechanisms that are effective for underserved, high-needs patient groups is also needed.

Best practice in the implementation of telehealth-based supportive cancer care: Using research evidence and discipline-based guidance.

OBJECTIVE: To investigate what factors need consideration for telehealth services for cancer supportive care, given the rapid transition to telehealth as a result of COVID-19. METHODS: A scoping review and a review of current guidance and guidelines provided by professional bodies, representing relevant discipline groups for cancer supportive care, were conducted. RESULTS: We identified 19 papers and 23 telehealth guidance documents. The results highlight how the characteristics of patient group and healthcare provider influence the acceptability and utility of the service and establish a minimum set of preconditions. The reviews primarily examined patient-focused difficulties or issues with acceptability and efficacy, with only a minority highlighting how provider issues might also be implicated. By contrast, the guidance and guidelines described a need to address skills gaps in providing and receiving support through telehealth. CONCLUSION: The capacity and willingness of services to adapt, in the context of COVID-19, is reassuring. It is important that the impact of the move to telehealth on service quality is assessed and systems put in place to ensure sustainability, acceptability, and adaptability. PRACTICE IMPLICATIONS: Key recommendations can be made to assist service telehealth optimisation, many of which apply irrespective of the specific service focus.

The Relationship between Cancer Caregiver Burden and Psychological Outcomes: The Moderating Role of Social Connectedness.

The present study: (a) examined the extent of caregiver burden and psychological wellbeing and (b) tested whether social connectedness moderated the association between caregiver burden and psychological symptoms in caregivers of people with cancer. The cross-sectional survey study included 189 cancer caregivers (mean age = 36.19 years, standard deviation = 11.78; 80.4% female). Data were collected on caregiver burden, social connectedness, and depression and anxiety. Moderation analysis was conducted to examine the effect of social connectedness on the relationship between caregiver burden and depression and anxiety. Caregiver burden was positively associated with depression and anxiety symptoms. Controlling for significant demographic and caregiver characteristics, the moderation model showed as perceived social connectedness increased, the relationship between caregiver burden and depression decreased (ß = -0.007, se = 0.004, 95% CI: -0.014, 0.000, p = 0.05). By contrast, social connectedness did not moderate the association between caregiver burden and anxiety. Findings have implications for the management of depression in cancer caregivers. Social connectedness appears to provide a protective buffer from the negative impacts of caregiving, providing increased psychological resources to manage the burden associated with caregiving, resulting in lower depression. Research on strategies to improve caregiver wellbeing through enhancing engagement with social networks in ways that improve perceived sense of connectedness with others is warranted.

Symptom Burden, Perceived Control, and Quality of Life Among Patients Living With Multiple Myeloma.

BACKGROUND: New therapies for multiple myeloma (MM) have improved survival rates but often expose patients to heightened toxicities and prolonged treatment, leading to increasing complications and side effects. We evaluated the association between symptom burden, perceived control over illness, and quality of life (QoL) among a national sample of patients with MM. METHODS: For this observational, cross-sectional study, we used data from the Cancer Experience Registry research initiative to examine symptom- and functioning-related concerns among 289 patients with MM across the illness trajectory. We applied hierarchical multiple linear regression analyses to explore associations between symptom burden and perceived control over illness with QoL indicators: depression, anxiety, and social satisfaction. RESULTS: In our sample, 73% of participants with MM reported currently receiving treatment; 39% experienced relapse; 56% received 1 to 2 autologous transplants, 10% received ≥3 autologous transplants, and 4% received allogeneic and autologous transplants; 30% had not received a stem cell transplant. Average time since diagnosis was 4.4 years. The most highly endorsed concerns included eating and nutrition (61%), physical activity (59%), moving around (56%), fatigue (55%), pain (52%), and sleep (46%). Only 27% believed they had control over their disease, whereas 48% perceived having control over the physical side effects of MM. Approximately one-third of the variance in anxiety and depression and nearly two-thirds of variance in social satisfaction were explained by sociodemographic, clinical, and symptom burden variables. Perceived control over illness significantly predicted depression and anxiety, but not social satisfaction. Our results highlight substantial concern among patients with MM about physical symptoms and function. Additionally, greater symptom burden significantly accounted for poorer QoL, and lower perceived control over illness was linked to depression and anxiety. CONCLUSIONS: Patients with MM and survivors experience substantive long-term QoL issues. Together, these findings point to the critical need for comprehensive symptom management, integrated palliative care, and enhancement of social and emotional support for individuals with MM.

Unintentional weight loss, its associated burden, and perceived weight status in people with cancer.

PURPOSE: Unintentional weight loss (UWL) is a prevalent problem in people with cancer and is associated with poorer psychosocial outcomes. A gap exists in understanding whether and how perceived and/or weight status impacts experiences of UWL. Thus, we sought to examine subjective experiences of UWL in people with cancer, and whether perceived and/or actual weight status impacts these experiences. METHODS: Participants were recruited through Cancer Support Community's Cancer Experience Registry® and related networks. Participants completed an online survey that included the FAACT Anorexia-Cachexia subscale, and 19 items that captured six themes related to "beliefs and concerns" (positive beliefs, psychosocial impact, physical impact, cancer outcomes, self-esteem, relationships with others). Perceived weight status (PWS) was assessed using a single item. Body mass index (BMI) was calculated using self-reported weight and height measurements. RESULTS: Of 326 respondents, 114 reported experiencing UWL. Over one-third misperceived their weight, with 29% perceiving weight status as below their BMI status. UWL in those with perceived weight status of overweight/obese was associated with positive beliefs. However, being underweight by BMI or perceiving oneself as underweight were both associated with greater concerns about weight loss. Perceived weight status of underweight compared to normal or overweight/obese weight status was associated with poorer psychosocial well-being, personal control, self-esteem, and relationships with others. CONCLUSION: In people with cancer, perceived weight status, rather than BMI, had greater impact on negative "beliefs and concerns" about UWL. Findings suggest assessment of both perceived and actual BMI to address the impact of UWL on psychosocial wellbeing.

Health literacy of caregivers of adult care recipients: A systematic scoping review.

Caregivers play a vital role in providing support to adults with a chronic condition, or cognitive or physical impairment. Low health literacy in caregivers has the potential to impact adequate care provision, and consequently, care recipient health outcomes. The aim of the study was to systematically review literature related to health literacy of caregivers of adult care recipients, and examine its relationship with care recipient, and caregiver, health outcomes. Electronic databases were searched for relevant English-language publications that assessed health literacy in caregivers. Included studies were abstracted into evidence tables and assessed using an eight-item quality scale. The search identified 2717 new titles and abstracts, with 67 shortlisted for full review. Twelve papers from 2003 to 2015 met the inclusion criteria. The prevalence of limited health literacy in caregivers ranged from 0% to 52.5% depending on the measure and cut-off criteria used. Associations were found between low caregiver health literacy and (i) poorer care recipient self-management behaviours; (ii) increased care recipient use of health services; and (iii) increased caregiver burden. The quality of the studies ranged from fair to excellent. Low health literacy in caregivers differed depending on the measures and scoring criteria used. Evidence to support the relationship between caregiver health literacy and care recipient, and caregiver health outcomes was limited to single studies. Recommendations for further research include: the development of caregiver health literacy measures across different populations; examination of associations between caregiver health literacy and care recipient outcomes; and the development of interventions designed to improve caregiver health literacy.

Measuring Nutrition and Food Literacy in Adults: A Systematic Review and Appraisal of Existing Measurement Tools.

BACKGROUND: Nutrition literacy (NL) and food literacy (FL) have emerged as key components in the promotion and maintenance of healthy dietary practices. However, a critical appraisal of existing tools is required to advance the operationalization and measurement of these constructs using instruments that demonstrate sound validity and reliability. METHODS: Electronic databases were searched in January and July 2016, January 2017, and March 2018 for publications detailing the development and/or testing of NL or FL instruments. Instruments' psychometric properties were assessed using a structured methodological framework. We identified 2,563 new titles and abstracts, and short-listed 524 for full review. The extent to which key domains of NL were included in each measure was examined. KEY RESULTS: Thirteen instruments assessing NL underwent full evaluation; seven from the United States, and one each from Australia, Norway, Switzerland, Italy, Hong Kong, and Japan. Measures targeted general Spanish-, Italian-, or Cantonese-speaking adults; primary care patients, parent, and populations with breast cancer. Instruments ranged from 6 to 64 items, and they predominantly assessed functional NL rather than broader domains of NL. Substantial variation in methodological rigor was observed across measures. DISCUSSION: Multidimensional and psychometrically sound measures that capture broader domains of NL and assess FL are needed. PLAIN LANGUAGE SUMMARY: This review systemically compiles, and critically appraises 13 existing measures that assess nutrition literacy and food literacy in an adult population. Substantial variation in methodological rigor was found across the measures, and most tools assessed nutrition literacy rather than food literacy. Findings from this current review may be useful to guide development of future measures that comprehensively capture nutrition literacy and food literacy. [HLRP: Health Literacy Research and Practice . 2018;2(3):e134-e160.].

Development of the Health Literacy of Caregivers Scale - Cancer (HLCS-C): item generation and content validity testing.

BACKGROUND: Health literacy refers to an individual's ability to engage with health information and services. Cancer caregivers play a vital role in the care of people with cancer, and their capacity to find, understand, appraise and use health information and services influences how effectively they are able to undertake this role. The aim of this study was to develop an instrument to measure health literacy of cancer caregivers. METHOD: Content areas for the new instrument were identified from a conceptual model of cancer caregiver health literacy. Item content was guided by statements provided by key stakeholders during consultation activities and selected to be representative across the range of cancer caregiver experiences. Content validity of items was assessed through expert review (n = 7) and cognitive interviews with caregivers (n = 16). RESULTS: An initial pool of 82 items was generated across 10 domains. Two categories of response options were developed for these items: agreement with statements, and difficulty undertaking presented tasks. Expert review revealed that the majority of items were relevant and clear (Content Validity Index > 0.78). Cognitive interviews with caregivers suggested that all except three items were well understood. CONCLUSION: A resultant 88 item questionnaire was developed to assess cancer caregiver health literacy. Further work is required to assess the construct validity and reliability of the new measure, and to remove poorly performing and redundant items, which will result in a shorter, final measure. The new measure has the potential to inform the development and evaluation of interventions and the improvement of health service delivery to cancer caregivers.