How can we improve information for people affected by cancer? A national survey exploring gaps in current information provision, and challenges with accessing cancer information online.

OBJECTIVE: Despite improved recognition regarding the importance and association between provision of high quality information for people affected by cancer and improved outcomes and experiences; gaps and unmet needs are still reported. As oncology health information provision increasingly moves online, understanding how service users experience and manage misinformation is important. Determining patient and carer preferences regarding cancer provision is needed to address outstanding gaps. METHODS: This study utilised a purpose-built national cross-sectional survey distributed via social media to assess perspectives regarding cancer information in Australia. Quantitative and qualitative (open text) items assessed respondents' perspectives regarding current inforation preferences and gaps, and experiences with accessing information online. RESULTS: A total of 491 people affected by cancer completed the survey. Respondents highlighted a preference for information that better addresses the diversity of cancer experience, and is more timely and responsive to personal situation and care context. Despite increasing attention to health literacy standards, complex medical jargon and terminology remains prevalent. Many respondents have concerns about misinformation, and seek improved mechanisms or skills to assist with determining the trustworthiness and relevance of information found online. CONCLUSIONS: Survey responses identified current gaps in information provision for people affected by cancer. Personalised information in formats which are more flexible, accessible, and responsive to user needs are required. PRACTICE IMPLICATIONS: Education and resources to target and improve digital health literacy and combat health misinformation are needed. Novel solutions co-designed by people affected by cancer will ensure that information is provided in a manner that is relevant, timely, and personalised.

Exploring infant signing to enhance responsive parenting: Findings from the INSIGHT study.

Responsive parenting is a promising framework for obesity prevention, yet attempts to date have largely relied on parents accurately interpreting their child's cues. Infant signing or "baby sign language" could enhance these interventions by improving bidirectional parent-child communication during the preverbal and emerging language years. In a clinical trial testing, a responsive parenting intervention designed for obesity prevention, we pilot tested a brief intervention at age 40 weeks with a subset of participating dyads that taught the signing gesture of "all done" to improve parental recognition of satiety. In addition, we surveyed all participating mothers at child age 18 months on the use of infant signing gestures in the prior year. Two hundred twenty-eight mothers completed the survey including 72 responsive parenting group mothers that received the signing instructions. A majority of mothers, 63.6%, reported teaching their infant signs in the prior year, and 61.4% of infants were using signs to communicate at 18 months (median signs = 2). The signs for "more" and "all done" were used by over half of study participants and were the most common signs used. Other signs related to eating or drinking were commonly used. Signing intervention group infants were more likely to use the sign for "all done" than controls (63.9% vs. 45.5%; P = 0.01), but there was no difference between groups with regard to the use of the sign for "more" (56.9% vs. 51.3%; P = 0.43). Signing is commonly used by parents of young children and holds potential to improve parental responsiveness and obesity prevention efforts.

INSIGHT responsive parenting intervention and infant feeding practices: randomized clinical trial.

BACKGROUND: What, when, how, how much, and how often infants are fed have been associated with childhood obesity risk. The objective of this secondary analysis was to examine the effect of a responsive parenting (RP) intervention designed for obesity prevention on parents' infant feeding practices in the first year after birth. METHODS: Primiparous mother-newborn dyads were randomized to the Intervention Nurses Start Infants Growing on Healthy Trajectories (INSIGHT) Study RP intervention or child safety control. Research nurses delivered intervention content at home at infant age 3-4, 16, 28, and 40 weeks, and at a research center at 1 year. RP feeding guidance advised feeding that was contingent (i.e., feed in response to hunger and satiety signs, alternatives to using food to soothe), and developmentally appropriate (i.e., delaying introduction of solids, age-appropriate portion sizes). Infant feeding practices (i.e., bottle use, introduction of solids, food to soothe) were assessed by phone interviews and online surveys and dietary intake was assessed using a food frequency questionnaire. RESULTS: RP mothers were more likely to use of structure-based feeding practices including limit-setting (p < 0.05) and consistent feeding routines (p < 0.01) at age 1 year. RP group mothers were less likely to use non-responsive feeding practices such as pressuring their infant to finish the bottle/food (p < 0.001), and using food to soothe (p < 0.01), propping the bottle (p < 0.05) assessed between 4 and 8 months, and putting baby to bed with a bottle at age 1 year (p < 0.05). Few differences were seen between groups in what specific foods or food groups infants were fed. CONCLUSIONS: Anticipatory guidance on RP in feeding can prevent the use of food to soothe and promote use of more sensitive, structure-based feeding which could reduce obesity risk by affecting how and when infants are fed during the first year. TRIAL REGISTRATION: The Intervention Nurses Start Infants Growing on Healthy Trajectories (INSIGHT) Study. www.clinicaltrials.gov . NCT01167270. Registered 21 July 2010.

Measuring the quality of life of children with cerebral palsy: comparing the conceptual differences and psychometric properties of three instruments.

AIM: To compare the conceptual differences, internal consistency, and validity of the Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child), the Child Health Questionnaire (CHQ), and a European generic health-related quality of life (HRQOL) questionnaire (10-domain version; KIDSCREEN-10) for children with cerebral palsy (CP). METHOD: Two hundred and four primary caregivers (185 females [91%], 19 males [9%]) of children with CP aged 4 to 12 years (mean 8 y 4 mo [SD 2.51]; 112 males [55%], 92 females [46%], Gross Motor Function Classification System level I=18%, II=28%, III=14%, IV=11%, V=28%) provided demographic data and completed the CP QOL-Child, CHQ, and KIDSCREEN-10. Fifty-four children with CP aged 9 to 12 years completed the CP QOL-Child and KIDSCREEN-10. RESULTS: The KIDSCREEN-10 and CP QOL-Child were developed to measure general HRQOL and CP-specific QOL respectively, whereas the CHQ was developed to measure functional health and well-being. In terms of internal consistency, KIDSCREEN-10 (Cronbach's alpha=0.86) and CP QOL-Child (0.74-0.91) outperformed the CHQ (0.18-0.96). In terms of validity, all instruments were moderately correlated. Floor and ceiling effects, although minimal or not evident for KIDSCREEN-10 and CP QOL-Child (1-4.9%), were apparent for CHQ (0.5-62.9%). INTERPRETATION: Conceptually and psychometrically, KIDSCREEN-10 and CP QOL-Child performed more strongly than the CHQ, for children with CP. The choice between these two instruments will depend on the questions posed and outcomes sought by the researcher or clinician.

Quality of life of adolescents with cerebral palsy: perspectives of adolescents and parents.

Quality of life (QOL) has emerged over the past 20 years as an outcome for measuring the effectiveness of health-improvement interventions. The Cerebral Palsy Quality of Life Questionnaire for Children (CPQOL-Child) is well regarded and now integrated into research internationally. We describe the results of qualitative research, using grounded research in which we aimed to identify domains of QOL for adolescents with cerebral palsy (CP) from adolescent and parent perspectives to guide the development of an adolescent version. Seventeen adolescents (nine males, eight females) aged 13 to 18 years (mean=15.53 SD=1.74), with varying levels of impairment (Gross Motor Function Classification System levels I n=5, II n=2, III n=6, IV n=4, and V n=6) and their parents (n=23) participated in semi-structured interviews. Questions included: 'What do you think is important to your (child's) QOL?' and 'How does CP impact on your (child's) life?' Fifteen themes were identified, including domains related to health issues in adolescence, participation, education, specific CP-related issues (pain and discomfort, communication), family issues, practical issues (financial resources), and changes associated with adolescence (sexuality, independence). The composition of these QOL domains reflects the developmental concerns of adolescents with CP, adding to the views of children, and strongly supports adolescent participation in the development of self-reported well-being and QOL measures. Many of the domains are consistent with child reports of QOL and thus it appears feasible and valid to develop a measure that will be transferable across childhood and adolescence.