Consumer versus expert opinions on bowel cancer screening videos: Findings from a co-design study.

OBJECTIVE: To describe compare and assess expert and consumer evaluations of videos the National Bowel Cancer Screening Program in Australia to inform the future development of effective promotional materials. METHODS: From July to November, 2022 consumers (n = 487) were randomly assigned to see 3 of 15 videos and 34 "experts" (i.e., researchers, clinicians, and health promotion specialists) viewed all 15 videos. Participants completed 22 items reflecting positive and negative perceptions and perceived efficacy in encouraging screening participation. Multiple analyses of covariance assessed mean differences in expert and consumer ratings controlling for age and gender differences. RESULTS: Experts and consumers reported similar perceptions about videos, with no difference in the degree to which each would encourage kit completion. However, compared to those containing personal stories, experts rated instructional and informational videos significantly lower than consumers in terms of encouraging actions that facilitate kit completion. CONCLUSIONS: Experts may underestimate the degree to which information and personal narratives resonate with consumers viewing bowel cancer screening videos. PRACTICAL IMPLICATIONS: It is valuable to consult consumers when designing bowel cancer screening promotion and education videos as opposed to relying solely on expert opinion especially in the context of encouraging actions that lead to kit completion.

The Association Between Screening for Colorectal Cancer and Mental and Physical Health.

BACKGROUND: Colorectal cancer screening reduces colorectal cancer morbidity and mortality. Identifying the factors associated with screening participation is needed to overcome barriers to screening. While several of those factors have been identified, the impact of mental and physical health on screening behaviour is not well understood. METHODS: This retrospective cohort study compared the self-reported mental and physical health of those who did screen for colorectal cancer and those who did not. Participants of the Australasian Colorectal Cancer Family Registry Cohort that were aged 45-75 years and had never been diagnosed with colorectal cancer were asked to complete a questionnaire detailing their colorectal cancer screening participation in the preceding 5 years, and a validated questionnaire of mental and physical health. Multivariable logistic regression was used to adjust for measured potential confounders. RESULTS: Of the 1130 eligible participants, 781 had a family history of colorectal cancer (69.5%), and 819 reported colorectal cancer screening in the past 5 years (72%). After adjusting for potential confounders, there was no evidence that overall mental or physical health was associated with colorectal cancer screening. However, those reporting higher levels of general health were more likely to participate in colorectal cancer screening (OR = 1.02 (100 point scale), 95% CI 1.004, 1.037, P = .014). CONCLUSION: We found limited evidence that mental and physical health were associated with colorectal cancer screening. The high proportion of participants with a family history of colorectal cancer limits the generaliseability of the findings to the general population, although we observed no differences in findings by strength of family history.

Mobile breast screening services in Australia: A qualitative exploration of perceptions and experiences among rural and remote women aged ≥75 years.

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.

Breast cancer screening motivation and behaviours of women aged over 75 years: a scoping review.

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.

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.

Comparing a fecal immunochemical test and circulating tumor DNA blood test for colorectal cancer screening adherence.

BACKGROUND AND AIM: Colorectal cancer (CRC) screening programs are most effective at reducing disease incidence and mortality through sustained screening participation. A novel blood test modality is being explored for CRC screening, but it is unclear whether it will provide sustained screening participation. This study aimed to investigate whether a circulating tumor DNA (ctDNA) blood test improved CRC screening re-participation when compared with a fecal immunochemical test (FIT) and to define the predictors of sustained CRC screening in an Australian population. METHODS: South Australians who initially participated in CRC screening using a ctDNA blood test (n = 36) or FIT (n = 547) were offered the same CRC screening test approximately 2 years later through an extended phase of a randomized controlled trial. Surveys collected demographic, psychosocial, and clinical information. Predictors of CRC screening re-participation were explored using chi-square, Wilcoxon tests, and logistic regression. RESULTS: Participants offered a second ctDNA blood test were equally likely to re-participate in CRC screening as those who completed a FIT in the first round and who were offered the same test (61% vs 66% re-participation respectively, P = 0.6). CRC fatalism, health activation, and self-efficacy were associated with repeated screening participation. Test awareness was predictive of repeated FIT-based CRC screening. CONCLUSIONS: Targeted interventions to improve CRC screening awareness and increase patient health activation may improve CRC screening adherence. A ctDNA blood test may be a suitable CRC screening option to maintain CRC screening adherence in people who do not participate in screening with FIT.

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.

Cancer-related cognitive impairment and wellbeing in patients with newly diagnosed aggressive lymphoma compared to population norms and healthy controls: an exploratory study.

PURPOSE: There has been little dedicated research on cancer-related cognitive impairment in patients with aggressive lymphoma. We describe and compare patients' cognitive function with that of healthy controls and patients' wellbeing and distress with general population values. We also explore associations between patients' neuropsychological test performance and self-reported cognitive function and distress. METHODS: Secondary analysis of data from a feasibility study of 30 patients with newly diagnosed aggressive lymphoma and 72 healthy controls. Patients completed neuropsychological tests and self-report measures before and 6-8 weeks after chemotherapy. Healthy controls completed neuropsychological tests and the FACT-Cog at enrolment and 6 months later. Mixed models were used to analyze neuropsychological test and FACT-Cog scores. One-sample t-tests were used to compare patients' self-reported wellbeing and distress with population norms. Associations were explored with Kendall's Tau b. RESULTS: Patients and healthy controls were well matched on socio-demographics. Differences between neuropsychological test scores were mostly large-sized; on average, patients' scores on measures of information processing speed, executive function, and learning and memory were worse both before and after chemotherapy (all p ≤ 0.003). The same pattern was observed for impact of perceived cognitive impairment on quality-of-life (both p < 0.001). Patients' physical and emotional wellbeing scores were lower than population norms both before and after chemotherapy (all p ≤ 0.018). Associations between neuropsychological performance and other measures were mostly trivial (all p > 0.10). CONCLUSION: For many patients with aggressive lymphoma, impaired neuropsychological test performance and impact of perceived impairments on quality-of-life precede chemotherapy and are sustained after chemotherapy. Findings support the need for large-scale longitudinal studies with this population to better understand targets for interventions to address cognitive impairments.

Health literacy interventions for informal caregivers: systematic review.

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.

Breast cancer screening motivation and behaviours of women aged over 75 years.

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.

"Life Without Symptoms" or "Being Able to Enjoy Life": What does it Mean to be "Well" After Cancer?

OBJECTIVE: To achieve wellness in cancer survivorship, researchers and clinicians need a better understanding of what it means to live "well", from the perspective of cancer survivors themselves. METHODS: Australian and UK cancer survivors (N = 376) diagnosed in the previous five years, were asked "What does it mean to be well?", with an open-ended text response. Responses were coded using content analysis. Demographics, time since diagnosis, coping style and symptom level were also assessed. RESULTS: Descriptions of what it meant to be "well" were coded as absence-focused (living without negative impacts of illness, 32.7%) or presence-focused (living with health, function, or wellbeing, 37.8%). A further 29.5% of responses contained both elements. Lower symptom level and higher use of a fatalism coping style were associated with presence-focused definitions of being well. CONCLUSIONS: More meaningful conversations with cancer survivors about their goals for care would be facilitated by a better understanding of what it means to them to be "well". As symptoms change over the course of survivorship, it may be necessary to re-examine each survivor's goals of care.

Validation of the Consumer Health Activation Index (CHAI) in general population samples of older Australians.

Objective: To validate the 10-item Consumer Health Activation Index (CHAI), developed in the United States, as an activation measure for interventions targeted at the Australian older general population. Methods: The study was a cross sectional design. Exploratory factor analysis (EFA) was conducted on survey data from a community sample of participants (n = 250), aged 55-75 years. Confirmatory factor analysis (CFA) was used to evaluate dimensionality among a second sample of participants randomly sampled from the electoral roll (n = 571), aged 50-75 years. Associations between the CHAI and self-reported health behaviours were examined. Results: EFA revealed a 7-item, two-factor structure ('Health self-management' and 'Patient-provider engagement'). CFA indicated optimum model fit was obtained with this structure. Subscale reliability and validity were confirmed, with significant correlation to age, functional health literacy and health screening. Conclusion: In contrast to the original structure, optimum model fit was obtained with a two-factor solution and retention of seven items. The subscales have utility as a measure of health activation for tailoring of information in this group. Innovation: A freely-available, unidimensional health activation measure has demonstrated an underlying two-scale structure that will enable tailored approaches toward the enhancement and maintenance of self- and externally-managed health behaviours in an Australian population.

SMARTERscreen protocol: a three-arm cluster randomised controlled trial of patient SMS messaging in general practice to increase participation in the Australian National Bowel Cancer Screening Program.

BACKGROUND: Australia persistently has one of the highest rates of colorectal cancer (CRC) in the world. Australia's National Bowel Cancer Screening Program (NBCSP) sends a biennial Faecal Immunochemical Test (FIT)-the 'NBCSP kit'-to everyone eligible for the programme between 50 and 74 years old; however, participation in the programme is low, especially in the 50- to 60-year-old age group. Our previous efficacy trial ('SMARTscreen') demonstrated an absolute increase in uptake of 16.5% (95% confidence interval = 2.02-30.9%) for people sent an SMS with motivational and instructional videos, from their general practice prior to receiving their NBCSP kit, compared to those receiving usual care. Building on the strengths of the SMARTscreen trial and addressing limitations, the 'SMARTERscreen' trial will test the effect on participation in the NBCSP of sending either an SMS only or an SMS with online video material to general practice patients due to receive their NBCSP compared to 'usual care'. METHODS: SMARTERscreen is a three-arm stratified cluster randomised controlled trial involving 63 general practices in two states in Australia. Eligible patients are patients who are aged 49-60 years and due to receive their NBCSP kit within the next 2 weeks during the intervention period. General practices will be equally randomised to three trial arms (21:21:21, estimated average 260 patients/practice). The two interventions include (i) an SMS with an encouraging message from their general practice or (ii) the same SMS with weblinks to additional motivational and instructional videos. The control arm will receive 'usual care'. Using the intention-to-treat approach, primary analysis will estimate the three pair-wise between-arm differences in the proportion of eligible patients who participate in the NBCSP within 6 months of when their kit is sent, utilising screening data from the Australian National Cancer Screening Register (NCSR). Patient intervention adherence to the interventions will also be evaluated. Findings will be incorporated into the Policy1-Bowel microsimulation model to estimate the long-term health benefits and cost-effectiveness of the interventions. DISCUSSION: SMARTERscreen will provide high-level evidence determining whether an SMS or an SMS with web-based material sent to general practice patients prior to receiving their NBCSP kit increases participation in bowel cancer screening. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12623000036617. Registered on 13 January 2023. Trial URL: https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=385119&isClinicalTrial=False.

Improving Medication Safety in Cancer Services for Ethnic Minority Consumers: Protocol for a Pilot Feasibility and Acceptability Study of a Co-Designed Consumer Engagement Intervention.

BACKGROUND: People from ethnic minorities are often exposed to unsafe care contributing to poorer health care outcomes. Medication safety is a high-risk area requiring intervention to improve care outcomes. Using an adapted, experience-based co-design process with cancer service staff and patients from ethnic minorities, a medication communication tool was created: Making it Meaningful (MiM). OBJECTIVE: We aim to test whether the MiM tool is feasible and acceptable for use with ethnic minority consumers in cancer services in Australia. METHODS: A single site, controlled before and after this pilot study, will be used. Patients from Mandarin- and Russian-speaking backgrounds are eligible for inclusion. In total, 40 patients from these cultural backgrounds will be recruited and stratified by language to the intervention and control groups, with 20 participants in the intervention and 20 in the control group. Further, 4 health practitioners will be recruited and trained to use the MiM. Clinicians providing care for patients in the intervention will use the MiM during their usual appointment while providing medication communication using standard care processes for the control group. Telephone surveys will be conducted with participants at 3 time points, T1 before the intervention, T2 1 week post intervention, and T3 1 month post intervention, to assess knowledge and self-efficacy in medication management, perceived usability, and acceptability of the MiM. Qualitative interviews with clinicians who have used the MiM will be conducted 1 month postintervention to explore their perceptions of MiM feasibility and acceptability. RESULTS: Ethical approval for this research has been provided by the South Eastern Sydney Area Health Human Research Ethics Committee (HRECXXX). Bilingual field-workers, 1 Mandarin-speaking and 1 Russian-speaking, are contacting eligible patients to enroll. It is anticipated that recruitment will be completed by October 2023, with data collection completed by December 2023. CONCLUSIONS: Using experience-based co-design, we identified communication about medication, particularly between appointments, as a key issue impacting the safety of care for patients from ethnic minorities accessing cancer services. Increasing consumer engagement in medication management was identified as a strategy to reduce medication safety problems in cancer care; the MiM strategy was developed to address this issue. It is anticipated that by using the MiM, patient knowledge about prescribed medications and confidence in medication management will increase. Evidence from the pilot study will be used to inform a full-scale trial of the MiM tool with a range of ethnic minority communities accessing cancer services. A full-scale trial will seek to determine whether the MiM intervention is effective in knowledge and confidence about medication management, but also whether this improves patient outcomes in cancer care. TRIAL REGISTRATION: Australian New Zealand Clinical Trials ACTRN12622001260718p; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=384658&isReview=true. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/49902.

'Being a farmer, I mostly always think there is something more important to do': A mixed methods analysis of the skin cancer detection practices of Australian farmers.

ISSUE ADDRESSED: Farmers experience skin cancer and die from melanoma at significantly higher rates than the general Australian population. This study examined Australian farmers' engagement with self-skin examinations (SSE), participation in clinical skin examinations (CSE) by a health professional, and self-reported barriers to engagement with these important skin cancer detection practices. METHODS: A cross-sectional, mixed-methods design was used. Australian farmers were recruited through an industry-based organisation representing livestock farmers. Farmers (N = 498; 22-89 years; 83.1% male) responded to a paper-based survey that included closed- and open-ended questions. RESULTS: Farmers reported engagement with self-conducted SSE and routine CSE that was comparable to findings in the general population, but 29.4% of farmers reported that they had not sought a CSE as soon as possible after noticing changes to their skin. Farmers reported a range of barriers to SSE, including physical difficulties examining their skin, difficulties identifying changes in their skin, forgetfulness, and lack of motivation. Barriers to CSE included accessibility, cost, difficulties finding the right doctor, and avoidance and complacency. CONCLUSIONS: There is a need to make clinical skin cancer detection more accessible to farmers, in addition to promoting self-skin examination and help-seeking behaviours within this at risk population. SO WHAT?: Novel approaches are needed to address systemic barriers faced by Australian farmers. These may include the use of teledermatology or artificial intelligence to assist with CSE. Remote training delivery methods may be also utilised to teach SSE skills to farmers who may be otherwise unable to access such opportunities.

FIT for purpose: study protocol for a randomized controlled trial to personalize surveillance colonoscopy for individuals at elevated risk of colorectal cancer.

PURPOSE: There is increasing demand for colorectal cancer (CRC) surveillance, but healthcare capacity is limited. The burden on colonoscopy resources could be reduced by personalizing surveillance frequency using the fecal immunochemical test (FIT). This study will determine the safety, cost-effectiveness, and patient acceptance of using FIT to extend surveillance colonoscopy intervals for individuals at elevated risk of CRC. METHODS: This multicenter, prospective, randomized controlled trial will invite participants who are scheduled for surveillance colonoscopy (due to a personal history of adenomas or a family history of CRC) and who have returned a low fecal hemoglobin (< 2 µg Hb/g feces; F-Hb) using a two-sample FIT (OC Sensor, Eiken Chemical Company) in the prior 3 years. A total of 1344 individuals will be randomized to either surveillance colonoscopy as scheduled or delayed by 1 or 2 years for individuals originally recommended a 3- or 5-year surveillance interval, respectively. The primary endpoint is incidence of advanced neoplasia (advanced adenoma and/or CRC). Secondary endpoints include cost-effectiveness and consumer acceptability of extending surveillance intervals, determined using surveys and discrete choice experiments. CONCLUSION: This study will establish the safety, cost-effectiveness, and acceptability of utilizing a low FIT Hb result to extend colonoscopy surveillance intervals in a cohort at elevated risk for CRC. This personalized approach to CRC surveillance will lead to a reduction in unnecessary colonoscopies, increases in healthcare savings, and a better patient experience.  TRIAL REGISTRATION: Registration was approved on December 9, 2019 with the Australian New Zealand Clinical Trials Registry ANZCTR 12619001743156.

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.

Utilizing RE-AIM to scope potential for feasible immigrant cancer literacy education.

Disparities in cancer incidence and mortality exist between settled and newly-arrived immigrant communities in immigrant-nations, such as Australia, Canada and USA. This may be due to differences in the uptake of cancer prevention behaviours and services for early detection, and cultural, language or literacy barriers impacting understanding of mainstream health messages. Blending cancer-literacy with immigrant English language education presents a promising means to reach new immigrants attending language programs. Guided by the RE-AIM framework for translational research, this study explored the feasibility and translation potential of this approach within the Australian context. Focus groups and interviews (N = 22) were held with English-as-a-Second-Language (ESL) teachers and immigrant resource-centre personnel. Thematic Framework Analysis, driven by RE-AIM, identified potential barriers to Reach for immigrants, Adoption by teachers, Implementation into immigrant-language programs and long-term curriculum Maintenance. Responses further highlighted that an Efficacious ESL cancer-literacy resource could be facilitated by developing flexible, culturally-sensitive content to cater for multiple cultures. Interviewees also raised the importance of developing the resource according to national curricula-frameworks, different language levels, and incorporating varied communicative activities and media. This study therefore offers insight into potential barriers and facilitators to developing a resource feasible for inclusion in existing immigrant-language programs, and achieving reach to multiple communities.

Development and initial psychometric evaluation of the Perceptions of Parental Illness Questionnaire for Cancer.

OBJECTIVE: To evaluate the psychometric properties of the Perceptions of Parental Illness Questionnaire for Cancer (PPIQ-C) among adolescents and young adults (AYAs). METHODS: A sample of 372 AYAs (aged 12-24 years) who had a parent diagnosed with cancer completed the PPIQ-C and the Kessler Psychological Distress Scale (K10). Exploratory factor analyses were conducted to examine the dimensional structure of the PPIQ-C. Scale reliability was evaluated using Cronbach's alpha (α) and McDonald's omega (ω). Pearson correlation analyses were conducted to assess construct validity by examining correlations between PPIQ-C subscale scores and K10 total scores. RESULTS: The PPIQ-C is organised into three sections, each with a separate factor structure for items representing identity, core (emotional representations, coherence, timeline, consequences, and controllability), and cause dimensions of the Common-Sense Model of Self-Regulation. Exploratory factor analyses determined the structure of each section: identity items comprised two subscales (12 items), core items comprised 10 subscales (38 items), and cause items comprised three subscales (11 items). Scale reliability was acceptable for all subscales, except the cause subscale chance or luck attributions (α = 0.665). Correlations between PPIQ-C subscale scores and K10 total scores provided support for construct validity. CONCLUSIONS: Preliminary evidence suggests that the PPIQ-C is a reliable, valid, and useful tool for assessing illness perceptions among AYAs with a parent with cancer. The PPIQ-C may be a useful addition to both clinical practice and future research, however further evaluation work is needed to confirm its structure and robustness prior to use.

Burden prediction in cancer caregivers: role of social support and connectedness.

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.