How do health services engage culturally and linguistically diverse consumers? An analysis of consumer engagement frameworks in Australia.

BACKGROUND: Engagement frameworks provide the conceptual structure for consumer engagement in healthcare decision making, but the level to which these frameworks support culturally and linguistically diverse (CALD) consumer engagement is not known. OBJECTIVE: This study aimed to investigate how consumer engagement is conceptualised and operationalized and to determine the implications of current consumer engagement frameworks for engagement with CALD consumers. METHOD: Altheide's document analysis approach was used to guide a systematic search, selection and analytic process. Australian Government health department websites were searched for eligible publicly available engagement frameworks. A narrative synthesis was conducted. RESULTS: Eleven engagement frameworks published between 2007 and 2019 were identified and analysed. Only four frameworks discussed engagement with CALD consumers distinctly. Organisational prerequisites to enhance engagement opportunities and approaches to enable activities of engagement were highlighted to improve CALD consumers' active participation in decision making; however, these largely focused on language, with limited exploration of culturally sensitive services. CONCLUSION: There is limited discussion of what culturally sensitive services look like and what resources are needed to enhance CALD consumer engagement in high-level decision making. Health services and policy makers can enhance opportunities for engagement with CALD consumers by being flexible in their approach, implementing policies for reimbursement for participation and evaluating and adapting the activities of engagement in collaboration with CALD consumers. PATIENT/PUBLIC CONTRIBUTION: This study is part of a wider 'CanEngage' project, which includes a consumer investigator, and is supported by a consumer advisory group. The study was conceived with inputs from the consumer advisory group, which continued to meet regularly with the project team to discuss the methodology and emerging findings.

Relationship between longest utterances and later MLU in late talkers.

The task of developing prognoses for late-talking children has long been a challenge for speech-language pathologists, developmental psychologists, and pediatricians. Improved predictors would help to assess long-term risk and determine appropriate intervention services. The present study evaluated children's length of longest utterances (LLU) as a predictor of mean length of utterance (MLU) one year later. Relationships between LLU at 30 months, MLU at 30 months and MLU at 42 months were examined in 43 late talkers (LT) and 33 age-matched children whose language was typically developing (TD). LLU was a significant predictor of MLU at 42 months with particularly strong correlations within the LT group. Similar results were obtained when controlling for language sample size, which was positively related to LLU. For the LT group, a regression model combining 30-month LLU and MLU was better at predicting 42-month MLU than 30-month MLU alone. The results are discussed in terms of frequency distributions of utterance lengths within language samples.

Conquer fear: protocol of a randomised controlled trial of a psychological intervention to reduce fear of cancer recurrence.

BACKGROUND: Up to 70% of cancer survivors report clinically significant levels of fear of cancer recurrence (FCR). Despite the known negative impact of FCR on psychological wellbeing and quality of life, little research has investigated interventions for high FCR. Our team has developed and piloted a novel intervention (Conquer Fear) based on the Self-Regulatory Executive Function Model and Relational Frame Theory and is evaluating Conquer Fear in a randomised controlled trial (RCT). We aim to compare the efficacy and cost-efficacy of the Conquer Fear Intervention and relaxation training in reducing the impact of FCR. METHODS/DESIGN: This study is a multi-centre RCT with 260 participants randomised either to the Conquer Fear Intervention or relaxation training. Both interventions will be delivered in five sessions over 10 weeks by trained psychologists, psychiatrists and social workers with five or more years experience in oncology. Conquer Fear sessions use attentional training, detached mindfulness, meta-cognitive therapy, values clarification and psycho-education to help patients change the way they regulate and respond to thoughts about cancer recurrence. Relaxation training includes training in progressive and passive muscle relaxation, meditative relaxation, visualisation and "quick relaxation" techniques. Relaxation was chosen to control for therapist time and attention and has good face-validity as an intervention. The primary outcome is fear of cancer recurrence. Secondary outcomes include distress, quality of life, unmet needs, and health care utilisation. Participants complete questionnaires prior to starting the intervention, immediately after completing the intervention, 3 and 6 months later. Eligible participants are early-stage breast or colorectal cancer survivors who have completed hospital-based treatment between 2 months and 5 years prior to study entry and report a score in the clinical range on the Fear of Cancer Recurrence Inventory. The biostatistician is blinded to group allocation and participants are blinded to which intervention is being evaluated. Randomisation is computer generated, stratified by therapist, and uses sequentially numbered sealed envelopes. DISCUSSION: If successful, the study will provide an evidence-based intervention to reduce psychological morbidity in cancer survivors, and reduce overall health care costs due to more appropriate use of follow-up care and other health services in this very large population. TRIAL REGISTRATION: ACTRN12612000404820.

Cross-cultural development of an EORTC questionnaire to assess health-related quality of life in patients with testicular cancer: the EORTC QLQ-TC26.

OBJECTIVE: Testicular cancer (TC) is the most common cancer in young men, and its incidence is increasing. The low mortality rate makes quality of life (QOL) an important issue in this patient group. This study aimed to develop a supplementary module of the EORTC QLQ-C30 questionnaire to assess TC-specific aspects of QOL. METHODS: Questionnaire development was conducted according to guidelines from the EORTC Quality of Life Group. Phase I comprised generation of QOL issues relevant to TC patients through a literature search and interviews with patients and experts. Phase II included operationalization and assessment of item relevance. In phase III, items were pre-tested in a cross-cultural sample to assess issues such as understandability and intrusiveness of items. RESULTS: In phase I and II, an initial list of 69 QOL issues possibly relevant to TC patients was refined through patient and expert interviews. The remaining 37 issues were operationalized into items and assessed for relevance and priority in an expert sample (n = 28) and a patient sample (n = 62) from Austria, Canada and the Netherlands. After revision of the item list, 26 items were considered eligible for pre-testing in phase III, in which 156 patients from Australia, Austria, Italy and Spain participated. All items passed criteria for pre-testing, thus forming the new EORTC QLQ-TC26. CONCLUSION: The newly developed EORTC QLQ-TC26 is now available in several languages to assess QOL in TC patients receiving treatment and in TC survivors. Phase IV of questionnaire development will comprise international field testing, including extensive analysis of psychometric characteristics of the EORTC QLQ-TC26.

Role for a Web-Based Intervention to Alleviate Distress in People With Newly Diagnosed Testicular Cancer: Mixed Methods Study.

BACKGROUND: Distress is common immediately after diagnosis of testicular cancer. It has historically been difficult to engage people in care models to alleviate distress because of complex factors, including differential coping strategies and influences of social gender norms. Existing support specifically focuses on long-term survivors of testicular cancer, leaving an unmet need for age-appropriate and sex-sensitized support for individuals with distress shortly after diagnosis. OBJECTIVE: We evaluated a web-based intervention, Nuts & Bolts, designed to provide support and alleviate distress after diagnosis of testicular cancer. METHODS: Using a mixed methods design to evaluate the acceptability, feasibility, and impact of Nuts & Bolts on distress, we randomly assigned participants with recently diagnosed testicular cancer (1:1) access to Nuts & Bolts at the time of consent (early) or alternatively, 1 week later (day 8; delayed). Participants completed serial questionnaires across a 4- to 5-week period to evaluate levels of distress (measured by the National Comprehensive Cancer Network Distress Thermometer [DT]; scored 0-10), anxiety, and depression (Hospital Anxiety and Depression Score [HADS]-Anxiety and HADS-Depression; each scored 0-21). The primary end point was change in distress between consent and day 8. Secondary end points of distress, anxiety, and depression were assessed at defined intervals during follow-up. Optional, semistructured interviews occurring after completion of quantitative assessments were thematically analyzed. RESULTS: Overall, 39 participants were enrolled in this study. The median time from orchidectomy to study consent was 14.8 (range 3-62) days. Moderate or high levels of distress evaluated using DT were reported in 58% (23/39) of participants at consent and reduced to 13% (5/38) after 1 week of observation. Early intervention with Nuts & Bolts did not significantly decrease the mean DT score by day 8 compared with delayed intervention (early: 4.56-2.74 vs delayed: 4.47-2.74; P=.85), who did not yet have access to the website. A higher baseline DT score was significantly predictive of reduction in DT score during this period (P<.001). Median DT, HADS-Anxiety, and HADS-Depression scores reduced between orchidectomy and 3 weeks postoperatively and then remained stable throughout the observation period. Thematic analysis of 16 semistructured interviews revealed 4 key themes, "Nuts & Bolts is a helpful tool," "Maximizing benefits of the website," "Whirlwind of diagnosis and readiness for treatment," and "Primary stressors and worries," as well as multiple subthemes. CONCLUSIONS: Distress is common following the diagnosis of testicular cancer; however, it decreases over time. Nuts & Bolts was considered useful, acceptable, and relevant by individuals diagnosed with testicular cancer, with strong support for the intervention rendered by thematic analyses of semistructured interviews. The best time to introduce support, such as Nuts & Bolts, is yet to be determined; however, it may be most beneficial as soon as testicular cancer is strongly suspected or diagnosed.

Speech timing and pausing in children with specific language impairment.

Articulation rate, speaking rate, as well as the duration and location of pauses, were analysed in 10 children with specific language impairment (SLI) and a comparison group of seven younger children producing utterances of similar lengths. Children with SLI were significantly slower in articulation rate, but not speaking rate or pausing time, indicating a group difference attributable to longer syllable duration. The correlation between the duration of the pause preceding a child's speaking turn and the length of the subsequent child utterance was calculated as an indication of children's use of the pause for planning the utterance. The correlation was not significant in either group, and not significantly different between groups. An analysis of the position of pauses within speaking turns showed more syllables following than preceding the pause, with no significant group differences. Theoretical implications are discussed.

Clinical trials knowledge and attitudes of Vietnamese- and Anglo-Australian cancer patients: A cross-sectional study.

AIM: Low participation in cancer clinical trials by culturally and linguistically diverse (CALD) patients limits access to cutting-edge treatments and generalizability of results. This is the first study exploring trials knowledge/attitudes and their association with trial participation in Vietnamese- and Anglo-Australian cancer patients. METHODS: Eligible patients diagnosed with cancer in the past 10 years were invited to complete a self-report questionnaire comprising validated measures of: trials knowledge and attitudes, preferred information amount, preferred decision-making involvement, health literacy, and past and future (i.e. hypothetical) trial participation. Multivariable linear regression evaluated correlates of trials knowledge/attitudes. Multinomial logistic regression estimated the relationship between trials knowledge/attitudes and possible future trial participation. RESULTS: Vietnamese-Australian participants (n = 50) had more negative attitudes regarding trials than Anglo-Australians (n = 100; B = -9.28; 95% confidence interval [CI], -17.60 to -0.97; P = 0.029), but similar knowledge (B = -0.91; 95% CI, -2.27 to 0.44; P = 0.18). Future trial participation was associated with positive attitudes (odds ratio [OR] = 1.08; 95% CI, 1.04-1.12; P < 0.001) and greater knowledge (OR = 1.30; 95% CI, 1.04-1.62; P = 0.02), but not Vietnamese background (OR = 0.95; 95% CI, 0.27-3.32; P = 0.93). CONCLUSION: Despite poorer attitudes regarding trials in Vietnamese-Australians, Vietnamese background was not associated with less likely future trial participation, suggesting low trial participation by CALD patients may be more due to opportunity barriers. Improving knowledge and attitudes may increase trial participation generally.

A longitudinal study of speech timing in young children later found to have reading disability.

PURPOSE: This study examined the development of timing characteristics in early spontaneous speech of children who were later identified as having reading disability (RD). METHOD: Child-adult play sessions were recorded longitudinally at 2 and 3 years of age in 27 children, most of whom were at high familial risk for RD. For each speaking turn, the number of syllables was determined and an acoustic analysis measured the time allocated to articulation, pausing before speaking, and pausing during speaking. RESULTS: In grade school, a reading battery identified 9 children with RD and 18 children without RD (9 at high risk, 9 at low risk). Early speaking rate was significantly slower in the group with RD, with significantly different patterns of pausing compared with children without RD. Group differences became more distinct by age 3, as longer speaking turns were attempted. CONCLUSIONS: The results are discussed in terms of speech and language formulation. Phonetic plans may be shorter and/or less specified in children with RD, surfacing as slow, short speaking turns with increased pausing relative to articulation. This explanation is consistent with several accounts of RD and provides a perspective on how speech and language deficits may manifest during spontaneous verbal interactions between young children and adults.

Screening for distress in survivorship.

PURPOSE OF REVIEW: The current review provides an overview of recent research and other initiatives aimed at increasing and/or systematizing screening for distress in cancer survivors. It is timely given an increasing drive internationally to implement distress screening as part of routine cancer care. RECENT FINDINGS: Screening using brief validated tools is recommended and the single-item distress thermometer continues to be the international screening tool of choice. Although debate continues regarding the most appropriate cut-off distress thermometer score to identify clinically distressed patients, review of checked items from the accompanying problem list can pinpoint sources of distress, to inform targeted intervention. An integrated approach should include screening, and if required, assessment/referral and intervention. However, whilst distress screening is associated with some impact on referral, especially its timeliness, delivery of evidence-based treatments to address identified distress may be limited by patients declining help and a lack of support services. SUMMARY: Although screening for distress in routine care holds promise for reducing costs and enhancing health system efficiency, its implementation across cancer services is variable. Further research is required to evaluate screening implementation and sustainability in routine care, as well as the feasibility of distress screening in long-term cancer survivors who are no longer in regular contact with cancer centres.

Reduced speaking rate as an early predictor of reading disability.

PURPOSE: This study evaluated whether developmental reading disability could be predicted in children at the age of 30 months, according to 3 measures of speech production: speaking rate, articulation rate, and the proportion of speaking time allocated to pausing. METHOD: Speech samples of 18 children at high risk and 10 children at low risk for reading disability were recorded at 30 months of age. High risk was determined by history of reading disability in at least 1 of the child's parents. In grade school, a reading evaluation identified 9 children within the high-risk group as having reading disability and 9 children as not having reading disability. The 10 children at low risk for reading disability tested negative for reading disability. RESULTS: Children with reading disability showed a significantly slower speaking rate than children at high risk without reading disability. Children with reading disability allocated significantly more time to pausing, as compared with the other groups. Articulation rate did not differ significantly across groups. CONCLUSIONS: Speaking rate and the proportion of pausing time to speaking time may provide an early indication of reading outcome in children at high risk for reading disability.

Fundamental frequency onset and offset behavior: a comparative study of children and adults.

Short-term changes in vowel fundamental frequency (F0) immediately preceding (F0 offset) and following (F0 onset) production of voiceless obstruents were examined in groups of 4-year-olds, 8-year-olds, and 21-year-olds. Definitive patterns of laryngeal behavior were observed for each measure F0 was found to significantly lower at vowel offset across age groups, with no significant differences noted between groups, suggesting that F0 offset is simply an acoustic consequence of producing a voiceless obstruent preceded by a vowel. The F0 at vowel onset was high and significantly decreased thereafter. Age-related differences were identified for F0 onset with 4-year-olds in that their F0 rose to a lesser degree than that of adults. However, adult females demonstrated a greater change in both F0 onset and F offset behavior than adult males and children, suggesting that age-related differences in F0 behavior are likely to be influenced by sex. The results are discussed with regard to the physiologic constraints of F0 surrounding voiceless obstruent production in children and adults.

The influence of utterance position on children's production of lexical stress.

Previous studies reporting acoustical data on children's production of lexical stress examined words produced in isolation (i.e., with no carrier phrase) or in utterance-final position. In such contexts, the final syllable of the words being examined was also the utterance-final syllable. Syllables produced in utterance-final position are known to be longer in duration and lower in intensity and F(0) compared to other syllables within utterances. Therefore, utterance-final effects may have obscured previous results on children's production of stress. Twenty children at approximately 6 years of age produced novel trochaic and iambic words in utterance-final and utterance-non-final position. Comparing productions across the two utterance positions suggested that reliance upon the utterance-final context was a confounding factor in past studies. Utterance-final position facilitated the iambic pattern of duration (short-long) and the trochaic pattern of intensity and F(0) (high-low). Utterance position sometimes affected trochees differently than iambs, especially in the duration of word-final syllables. The results are discussed in terms of past explanations of utterance position effects on acoustic characteristics of syllables.

Durational characteristics of the first productions of novel trochees and iambs in children with and without speech delay.

The durational characteristics of novel words produced in repeated trials were evaluated in separate groups of children with, and without speech delay (SD). Children produced disyllabic novel words containing either a trochaic or iambic stress pattern. Results of acoustic analysis indicated a significant interaction between trial number and speaker group. The duration of words produced by children without SD decreased more abruptly across successive trials as compared to children with SD. In addition, duration decreased at a faster rate for trochaic words as compared to iambic words in both groups. Variability of word duration was greater in iambs than trochees. The results are discussed in terms of speech motor learning patterns that may underlie difficulties associated with SD.