Parent-carer experiences using a peer support network: a qualitative study.

INTRODUCTION: Parent-carers of children and young people (CYP) with mental health problems are at greater risk of poor outcomes, such as poor physical and mental health. Peer interventions for parent-carers of CYP with disabilities may improve parent-carer outcomes. This qualitative study investigates parent-carer experiences of using Parental Minds (PM), a multi-component peer support service for parent-carers of CYP with disabilities. METHODS: Twelve current service-users and four staff/volunteers at PM participated in one-to-one semi-structured interviews. All participants were white females, except for one service-user who was male. All interviews were recorded and transcribed verbatim. Thematic analysis of results was used to explore perceived benefits and disadvantages of PM and possible behaviour change mechanisms. RESULTS: Three themes and eight subthemes were identified. Participants identified that internal and external factors influence their self-concept. The identification of themselves as a priority, and empowerment by reassurance and affirmation lead to improved parent-carer self-efficacy and agency to better care for their CYP. Participants described the difficulty of speaking honestly with friends and family about what they experience because it is perceived as different to what "normal" parents experience. From participant accounts, PM enables the construction of a support network and links external services to help manage family circumstances rather than offer curative treatment/intervention. Proactive and immediate advice which is constantly and consistently available was valued by participants. Participants expressed the need for a flexible range of service components which provide holistic support that encompasses both health and social care. CONCLUSIONS: PM was perceived to be beneficial as a multi-component peer support service which increases parenting self-efficacy and empowerment, reduces isolation, improves access to services, and is tailored to individual needs. Parent-carers reported benefits in parenting and wellbeing practices. The development of a refined logic model will inform a future study of the effectiveness of PM on parent-carer outcomes.

Annual Research Review: The impact of Covid-19 on psychopathology in children and young people worldwide: systematic review of studies with pre- and within-pandemic data.

BACKGROUND: The high volume and pace of research has posed challenges to researchers, policymakers and practitioners wanting to understand the overall impact of the pandemic on children and young people's mental health. We aimed to search for and review the evidence from epidemiological studies to answer the question: how has mental health changed in the general population of children and young people? METHODS: Four databases (Medline, CINAHL, EMBASE and PsychINFO) were searched in October 2021, with searches updated in February 2022. We aimed to identify studies of children or adolescents with a mean age of 18 years or younger at baseline, that reported change on a validated mental health measure from prepandemic to during the pandemic. Abstracts and full texts were double-screened against inclusion criteria and quality assessed using a risk of bias tool. Studies were narratively synthesised, and meta-analyses were performed where studies were sufficiently similar. RESULTS: 6917 records were identified, and 51 studies included in the review. Only four studies had a rating of high quality. Studies were highly diverse in terms of design, setting, timing in relation to the pandemic, population, length of follow-up and choice of measure. Methodological heterogeneity limited the potential to conduct meta-analyses across studies. Whilst the evidence suggested a slight deterioration on some measures, overall, the findings were mixed, with no clear pattern emerging. CONCLUSIONS: Our findings highlight the need for a more harmonised approach to research in this field. Despite the sometimes-inconsistent results of our included studies, the evidence supports existing concerns about the impact of Covid-19 on children's mental health and on services for this group, given that even small changes can have a significant impact on provision at population level. Children and young people must be prioritised in pandemic recovery, and explicitly considered in planning for any future pandemic response.

Mothers' and fathers' views on the importance of play for their children's development: Gender differences, academic activities, and the parental role.

BACKGROUND: Play is a main driver of children's cognitive and social development and is crucial for educational success (Paediatrics, 119, 2007 and 182). In recent years, however, parents and schools are under pressure to prioritize academic targets over play. AIMS: The current research investigated parents' views about three aspects of their children's play and academic activities. SAMPLE: Predominantly highly educated UK parents (109 mothers and 49 fathers) were recruited via social media. METHOD: Participants were asked to complete an amended online version of the Preschool Play and Learning Questionnaire (International Journal of Behavioral Development, 28, 2004 and 97). The questionnaire consisted of 25 items covering three themes: the importance of play for children's development, the importance of academic activities, and the importance of parents' role in their children's development. The independent variables were the gender of the parent, the gender of their child, and the age group of their child (4-7 years, or 8-11 years). RESULTS: Parents rated play higher than academic activities or their own roles, but the difference was not noteworthy. However, fathers rated academic activities and the parents' role significantly higher than mothers did. In addition, parents of girls rated academic activities and their own role significantly higher than parents of boys. CONCLUSIONS: The findings of the current research highlight gender divisions between parents and towards boys and girls regarding the importance of education. Gender roles appear to influence the way parents think about the academic activities their children partake in.

Dietary Assessment Tools and Metabolic Syndrome: Is It Time to Change the Focus?

Metabolic syndrome (MS) is associated with a range of chronic diseases, for which lifestyle interventions are considered the cornerstone of treatment. Dietary interventions have primarily focused on weight reduction, usually via energy restricted diets. While this strategy can improve insulin sensitivity and other health markers, weight loss alone is not always effective in addressing all risk factors associated with MS. Previous studies have identified diet quality as a key factor in reducing the risk of MS independent of weight loss. Additionally, supporting evidence for the use of novel strategies such as carbohydrate restriction and modifying the frequency and timing of meals is growing. It is well established that dietary assessment tools capable of identifying dietary patterns known to increase the risk of MS are essential for the development of personalised, targeted diet and lifestyle advice. The American Heart Association (AHA) recently evaluated the latest in a variety of assessment tools, recommending three that demonstrate the highest evidence-based and clinical relevance. However, such tools may not assess and thus identify all dietary and eating patterns associated with MS development and treatment, especially those which are new and emerging. This paper offers a review of current dietary assessment tools recommended for use by the AHA to assess dietary and eating patterns associated with MS development. We discuss how these recommendations align with recent and novel evidence on the benefits of restricting ultra-processed food and refined carbohydrates and modifying timing and frequency of meals. Finally, we provide recommendations for future redevelopment of these tools to be deployed in health care settings.

Translation and validation of the Child Three-Factor Eating Questionnaire (CTFEQr17) in French-speaking Canadian children and adolescents.

OBJECTIVE: To translate and validate the Child Three-Factor Eating Questionnaire (CTFEQr17), assessing cognitive restraint (CR), uncontrolled eating (UE) and emotional eating (EE), among French-speaking Canadian young individuals. DESIGN: Phase 1 comprised a translation and the evaluation of the comprehension of the questionnaire. Phase 2 comprised a confirmatory factor analysis (CFA), the evaluation of internal consistency (Cronbach's α), test-retest reliability (intra-class correlation coefficients (ICC)) and construct validity, including correlations among the CTFEQr17 and Eating Attitudes Test (EAT-26), anthropometrics, dietary intake and diet quality. SETTING: Primary and secondary schools, Québec City, Canada. PARTICIPANTS: Phases 1 and 2 included 20 (40 % boys, mean age 11·5 (sd 2·4) years) and 145 (48 % boys, mean age 11·0 (sd 1·9) years) participants, respectively. RESULTS: Phase 1 resulted in the questionnaire to be used in Phase 2. In Phase 2, the CFA revealed that the seventeen item, three-factor model (CTFEQr17) provided an excellent fit. Internal consistency was good (Cronbach's α: 0·81-0·90). Test-retest reliability was moderate to good (ICC = 0·59, (95 % CI 0·48, 0·70), ICC = 0·78, (95 % CI 0·70, 0·84), ICC = 0·50, (95 % CI 0·38, 0·62) for CR, UE and EE, respectively). CR correlated with EAT-26 score (r = 0·43, P < 0·0001). UE and EE correlated negatively with BMI Z-scores (r = -0;·26, P = 0·003; r = -0;·19, P = 0·03, respectively). CR correlated with the proportion of energy intake from protein and diet quality (r = 0·18, P = 0·04; r = 0·20, P = 0·02, respectively). CONCLUSION: The CTFEQr17 is suitable to use among French-speaking Canadian young individuals.

An Analysis of Pharmacogenomic-Guided Pathways and Their Effect on Medication Changes and Hospital Admissions: A Systematic Review and Meta-Analysis.

Ninety-five percent of the population are estimated to carry at least one genetic variant that is discordant with at least one medication. Pharmacogenomic (PGx) testing has the potential to identify patients with genetic variants that puts them at risk of adverse drug reactions and sub-optimal therapy. Predicting a patient's response to medications could support the safe management of medications and reduce hospitalization. These benefits can only be realized if prescribing clinicians make the medication changes prompted by PGx test results. This review examines the current evidence on the impact PGx testing has on hospital admissions and whether it prompts medication changes. A systematic search was performed in three databases (Medline, CINAHL and EMBASE) to search all the relevant studies published up to the year 2020, comparing hospitalization rates and medication changes amongst PGx tested patients with patients receiving treatment-as-usual (TAU). Data extracted from full texts were narratively synthesized using a process model developed from the included studies, to derive themes associated to a suggested workflow for PGx-guided care and its expected benefit for medications optimization and hospitalization. A meta-analysis was undertaken on all the studies that report the number of PGx tested patients that had medication change(s) and the number of PGx tested patients that were hospitalized, compared to participants that received TAU. The search strategy identified 5 hospitalization themed studies and 5 medication change themed studies for analysis. The meta-analysis showed that medication changes occurred significantly more frequently in the PGx tested arm across 4 of 5 studies. Meta-analysis showed that all-cause hospitalization occurred significantly less frequently in the PGx tested arm than the TAU. The results show proof of concept for the use of PGx in prescribing that produces patient benefit. However, the review also highlights the opportunities and evidence gaps that are important when considering the introduction of PGx into health systems; namely patient involvement in PGx prescribing decisions, thus a better understanding of the perspective of patients and prescribers. We highlight the opportunities and evidence gaps that are important when considering the introduction of PGx into health systems.

Psychometric properties of the Turkish version of the Child Three-Factor Eating Questionnaire for primary and secondary school students.

OBJECTIVE: This study aims to evaluate the validity and reliability of the Turkish version of the Child Three-Factor Eating Questionnaire for primary and secondary school students. DESIGN: A methodological, descriptive and correlational study design was adopted. SETTING: The study was conducted in the western and central regions of Turkey. PARTICIPANTS: This methodological-descriptive-correlational study was conducted with 351 children between July 2018 and August 2018. The mean age of children is 10·74 ± 1·79 (8-14). RESULTS: The scale consists of seventeen items and three sub-dimensions (restraint, uncontrolled eating and emotional eating), which explained 52·88 % of the total variance. All the factor loadings were >0·40 in both exploratory factor analysis and confirmatory factor analysis (CFA). In CFA, all of the fit indices were >0·85, and root mean square error of approximation was <0·08. For the whole of the scale, Cronbach's α was 0·81 and it was found that Cronbach's α values of all sub-dimensions were >0·70. CONCLUSIONS: The results of the study show that the Child Three-Factor Eating Questionnaire for primary and secondary school students is a valid and reliable measurement tool for Turkish sampling.

Measuring misconceptions about traumatic brain injury: are existing scales misconceived?

PRIMARY OBJECTIVES: The aim of this paper was to conduct a review of the misconception literature relating to traumatic brain injury (TBI) and to critically review the comprehensiveness, psychometric properties and other qualities of existing scales designed to measure knowledge and misconceptions of TBI. METHODS: Terms relating to misconceptions, misconception scales, public perceptions and traumatic brain injury were used to identify existing scales. The initial search was expanded using the reference lists and citations of relevant articles. MAIN OUTCOMES: Eight scales were identified for full review, with several sharing a common set of items. The majority of scales were designed to measure public perceptions of TBI, although some were developed for use in specific populations (e.g. sports, professional samples). Existing scales are limited by their scope and breadth of coverage, adoption of a medicalized view of TBI, scaling and scoring issues, failure to use a conceptual framework, and by numerous psychometric issues related to reliability and validity. CONCLUSIONS: There are a number of weaknesses attached to existing scales. Several recommendations are made to promote and inform future scale development.

Obesity and Eating Disturbance: the Role of TFEQ Restraint and Disinhibition.

PURPOSE OF REVIEW: Literature from the past five years exploring roles of Three-Factor Eating Questionnaire (TFEQ) Restraint and Disinhibition in relation to adult obesity and eating disturbance (ED) was reviewed. RECENT FINDINGS: Restraint has a mixed impact on weight regulation, diet quality, and vulnerability to ED, where it is related detrimentally to weight regulation, diet, and psychopathology, yet can serve as a protective factor. The impact of Disinhibition is potently related to increased obesity, poorer diet, hedonically driven food choices, and a higher susceptibility to ED. Restraint and Disinhibition have distinct influences on obesity and ED and should be targeted differently in interventions. Further work is required to elucidate the mechanisms underlying TFEQ eating behavior traits.

Personalised Nutrition Technologies and Innovations: A Cross-National Survey of Registered Dietitians.

BACKGROUND: Commercial technology-enabled personalised nutrition is undergoing rapid growth, yet its uptake in dietetics practice remains low. This survey sought the opinions of dietetics practitioners on personalised nutrition and related technologies to understand the facilitators and barriers to its application in practice. METHOD: A cross-section of registered dietitians were recruited in the USA, UK, Australia, Canada, Israel, Mexico, Portugal, Spain, and South Africa. The questionnaire sought their views on the risks of genetics technology, the ethics of genetic testing, the usefulness of new personalised nutrition technologies, entrepreneurism, and the perceived importance of new technologies to dietetics. Validated scales were included to assess personality (Big Five) and self-efficacy (NGSEI). The survey was available in English, Spanish, and Portuguese. Regression analyses were performed to identify factors associated with the integration of nutrigenetic testing into practice, and to identify factors associated with the perceived importance of bio-information, and mobile technology to dietetics practice. RESULTS: A total of 323 responses (response rate 19.7%) were analysed. Dietetics practitioners who had integrated personalised nutrition technology into practice perceived technologies to be less risky (p = 0.02), biotechnology to be more important (p < 0.01), and professional skills to be less important (p = 0.04) than those who had not. They were also more likely to see themselves as entrepreneurs (p < 0.01) and to perceive lower risks to be associated with technology (p < 0.01). Practitioners of nutrigenetics were lower on neuroticism (p < 0.01) and higher on self-efficacy (p < 0.01), extraversion (p < 0.01), and agreeableness (p < 0.01). A higher perceived importance of biotechnology to dietetics practice was associated with higher perceived usefulness of omics tests (p < 0.01). Perceived importance of information technology was associated with the perceived importance of biotechnology (p < 0.01). Mobile technology was perceived as important by dietitians with the highest level of education (p = 0.02). CONCLUSIONS: For dietitians to practice technology-enabled personalised nutrition, training will be required to enhance self-efficacy, address the risks perceived to be associated with new technologies, and instil an entrepreneurial mindset.

Effects of a 3-month vigorous physical activity intervention on eating behaviors and body composition in overweight and obese boys and girls.

PURPOSE: This study aims to analyze the effects of a 3-month vigorous physical activity (VPA) intervention on eating behavior and body composition in overweight and obese children and adolescents. METHODS: Forty-seven participants (7-16 years) took part in the study: 28 were assigned to the intervention group (IG) (10 boys and 18 girls) and 19 in a control group (CG) (8 boys and 11 girls). Body composition (dual-energy X-ray absorptiometry), anthropometrics (body mass, height, and body mass index (BMI)), and eating behavior traits (Three-Factor Eating Questionnaire-R21C) were determined before and after the VPA intervention. RESULTS: A decrease in the percentage of body fat and BMI (-2.8% and -1.8%, respectively), and an increase in most lean mass variables were found in the IG (all p ≤ 0.05). In relation to the eating behavior traits, IG subjects showed a 14% reduction in the Emotional Eating score (p = 0.04), while Cognitive Restraint score did not change after the VPA intervention. The baseline factors of the questionnaire predicted changes in body mass and fat mass variables only in the CG. CONCLUSION: A 3-month VPA intervention influenced eating behaviors of overweight or obese young, especially the Emotional Eating factor, in the presence of favorable body composition changes.

Validation of a child version of the Three-Factor Eating Questionnaire in a Canadian sample: a psychometric tool for the evaluation of eating behaviour.

OBJECTIVE: To examine score validity and reliability of a child version of the twenty-one-item Three-Factor Eating Questionnaire (CTFEQ-R21) in a sample of Canadian children and adolescents and its relationship with BMI Z-score and food/taste preferences. DESIGN: Cross-sectional study. SETTING: School-based. PARTICIPANTS: Children (n 158), sixty-three boys (mean age 11·5 (sd 1·6) years) and ninety-five girls (11·9 (sd 1·9) years). RESULTS: Exploratory factor analysis revealed that the CTFEQ-R21 was best represented by four factors with item 17 removed (CFFEQ-R20), representing Cognitive Restraint (CR), Cognitive Uncontrolled Eating (UE 1), External Uncontrolled Eating (UE 2) and Emotional Eating (EE), accounting for 41·2 % of the total common variance with good scale reliability. ANOVA revealed that younger children reported higher UE 1 and CR scores than older children, and boys who reported high UE 1 scores had significantly higher BMI Z-scores. Children with high UE 1 scores reported a greater preference for high-protein and -fat foods, and high-fat savoury (HFSA) and high-fat sweet (HFSW) foods. Higher preference for high-protein, -fat and -carbohydrate foods, and HFSA, HFSW and low-fat savoury foods was found in children with high UE 2 scores. CONCLUSIONS: The study suggests that the CFFEQ-R20 can be used to measure eating behaviour traits and associations with BMI Z-score and food/taste preferences in Canadian children and adolescents. Future research is needed to examine the validity of the questionnaire in larger samples and other geographical locations, as well as the inclusion of extraneous variables such as parental eating or socio-economic status.

Development and validation of the Child Three-Factor Eating Questionnaire (CTFEQr17).

OBJECTIVE: To develop and validate a child and adolescent version of the Three-Factor Eating Questionnaire (CTFEQr17) and to assess its psychometric properties and factor structure. We also examined associations between the CTFEQr17 and BMI and food preferences. DESIGN: A two-phase approach was utilized, employing both qualitative and quantitative methodologies. SETTING: Primary and secondary schools, UK. SUBJECTS: In phase 1, seventy-six children (thirty-nine boys; mean age 12·3 (sd 1·4) years) were interviewed to ascertain their understanding of the original TFEQr21 and to develop accessible and understandable items to create the CTFEQr17. In phase 2, 433 children (230 boys; mean age 12·0 (sd 1·7) years) completed the CTFEQr17 and a food preference questionnaire, a sub-sample (n 253; 131 boys) had their height and weight measured, and forty-five children (twenty-three boys) were interviewed to determine their understanding of the CTFEQr17. RESULTS: The CTFEQr17 showed good internal consistency (Cronbach's α=0·85) and the three-factor structure was retained: cognitive restraint (CR), uncontrolled eating (UE) and emotional eating (EE). Qualitative data demonstrated a high level of understanding of the questionnaire (95 %). High CR was found to be significantly associated with a higher body weight, BMI and BMI percentile. High UE and EE scores were related to a preference for high-fat savoury and high-fat sweet foods. The relationships between CTFEQr17, anthropometry and food preferences were stronger for girls than boys. CONCLUSIONS: The CTFEQr17 is a psychometrically sound questionnaire for use in children and adolescents, and associated with anthropometric and food preference measures.

The Muslim headscarf and face perception: "they all look the same, don't they?".

The headscarf conceals hair and other external features of a head (such as the ears). It therefore may have implications for the way in which such faces are perceived. Images of faces with hair (H) or alternatively, covered by a headscarf (HS) were used in three experiments. In Experiment 1 participants saw both H and HS faces in a yes/no recognition task in which the external features either remained the same between learning and test (Same) or switched (Switch). Performance was similar for H and HS faces in both the Same and Switch condition, but in the Switch condition it dropped substantially compared to the Same condition. This implies that the mere presence of the headscarf does not reduce performance, rather, the change between the type of external feature (hair or headscarf) causes the drop in performance. In Experiment 2, which used eye-tracking methodology, it was found that almost all fixations were to internal regions, and that there was no difference in the proportion of fixations to external features between the Same and Switch conditions, implying that the headscarf influenced processing by virtue of extrafoveal viewing. In Experiment 3, similarity ratings of the internal features of pairs of HS faces were higher than pairs of H faces, confirming that the internal and external features of a face are perceived as a whole rather than as separate components.

Relationships among tonic and episodic aspects of motivation to eat, gut peptides, and weight before and after bariatric surgery.

BACKGROUND: The interaction between motivation to eat, eating behavior traits, and gut peptides after Roux-en-Y gastric bypass (RYGB) surgery is not fully understood. METHODS: Appetite and hormone responses to a fixed liquid preload were assessed in 12 obese (body mass index 45 ± 1.9 kg/m(2)) participants immediately before and 3 days, 2 months, and 1 year after RYGB surgery. Subjective appetite and plasma levels of ghrelin, leptin, insulin, and glucagon-like peptide-1 (GLP-1) were measured for a 3-hour postprandial period. Eating behavior traits were also measured using the Three Factor Eating Questionnaire 18 (TFEQR18). RESULTS: There was a decrease in TFEQR18 emotional eating (EE) and uncontrolled eating (UE) from presurgery to 1 year postsurgery but no significant change in cognitive restraint (CR). These changes occurred independently of change in weight. In addition, there was a reduction in subjective appetite ratings and alterations in appetite peptides favoring an anorectic response. Presurgery EE was significantly related to fasting and area under the curve (AUC) ghrelin; UE was associated with AUC desire to eat, and there was a significant association between fasting desire to eat and ghrelin (fasting and AUC). One year postsurgery, UE was positively related to fasting insulin, and CR was negatively associated with GLP-1. UE and subjective hunger were positively correlated, while the relationship between desire to eat and ghrelin remained. CONCLUSION: The relationships among subjective appetite ratings, eating behavior traits, and appetite peptides in obese patients both before and at 1 year after RYGB surgery may contribute to the reduction in a propensity to overeat (as measured by TFEQR18 factors) and weight loss.

The significance of hair for face recognition.

Hair is a feature of the head that frequently changes in different situations. For this reason much research in the area of face perception has employed stimuli without hair. To investigate the effect of the presence of hair we used faces with and without hair in a recognition task. Participants took part in trials in which the state of the hair either remained consistent (Same) or switched between learning and test (Switch). It was found that in the Same trials performance did not differ for stimuli presented with and without hair. This implies that there is sufficient information in the internal features of the face for optimal performance in this task. It was also found that performance in the Switch trials was substantially lower than in the Same trials. This drop in accuracy when the stimuli were switched suggests that faces are represented in a holistic manner and that manipulation of the hair causes disruption to this, with implications for the interpretation of some previous studies.

Development and psychometric properties of the Patient-Head Injury Participation Scale (P-HIPS) and the Patient-Head Injury Neurobehavioral Assessment Scale (P-HINAS): patient and family determined outcomes scales.

OBJECTIVE: To develop a measure to assess post-acute outcome following from traumatic brain injury (TBI) with particular emphasis on the emotional and the behavioral outcome. The second objective was to assess the test-retest reliability, internal consistency, and factor structure of the newly developed patient version of the Head Injury Participation Scale (P-HIPS) and Patient-Head Injury Neurobehavioral Scale (P-HINAS). METHOD: Thirty-two TBI individuals and 27 carers took part in in-depth qualitative interviews exploring the consequences of the TBI. Interview transcripts were analyzed and key themes and concepts were used to construct the 49-item P-HIPS. A postal survey was then conducted on a cohort of 113 TBI patients to 'field test' the P-HIPS and the P-HINAS. RESULTS: All individual 49 items of the P-HIPS and their total score showed good test-retest reliability (0.93) and internal consistency (0.95). The P-HIPS showed a very good correlations with the Mayo Portland Adaptability Inventory-3 (MPAI-3) (0.87) and a moderate negative correlation with the Glasgow Outcome Scale-Extended (GOSE) (-0.51). Factor analysis extracted the following domains: 'Emotion/Behavior,' 'Independence/Community Living,' 'Cognition' and 'Physical'. The 'Emotion/Behavior' factor constituted the P-HINAS, which showed good internal consistency (0.93), test-retest reliability (0.91) and concurrent validity with MPAI subscale (0.82). CONCLUSIONS: Both the P-HIPS and the P-HINAS show strong psychometric properties. The qualitative methodology employed in the construction stage of the questionnaires provided good evidence of face and content validity.

Development and psychometric properties of the Carer - Head Injury Neurobehavioral Assessment Scale (C-HINAS) and the Carer - Head Injury Participation Scale (C-HIPS): patient and family determined outcome scales.

OBJECTIVE: Develop and assess the psychometric properties of the Carer - Head Injury Participation Scale (C-HIPS) and its biggest factor the Carer - Head Injury Neurobehavioral Assessment Scale (C-HINAS). Furthermore, the aim was to examine the inter-informant reliability by comparing the self reports of individuals with traumatic brain injury (TBI) with the carer reports on the C-HIPS and the C-HINAS. METHOD: Thirty-two TBI individuals and 27 carers took part in in-depth qualitative interviews exploring the consequences of the TBI. Interview transcripts were analysed and key themes and concepts were used to construct a 49-item and 58-item patient (Patient - Head Injury Participation Scale [P-HIPS]) and carer outcome measure (C-HIPS) respectively, of which 49 were parallel items and nine additional items were used to assess carer burden. Postal versions of the P-HIPS, C-HIPS, Mayo Portland Adaptability Inventory-3 (MPAI-3), and the Glasgow Outcome Scale-Extended (GOSE) were completed by a cohort of 113 TBI individuals and 80 carers. Data from a sub-group of 66 patient/carer pairs were used to compare inter-informant reliability between the P-HIPS and the C-HIPS, and the P-HINAS and the C-HINAS respectively. RESULTS: All individual 49 items of the C-HIPS and their total score showed good test-retest reliability (0.95) and internal consistency (0.95). Comparisons with the MPAI-3 and GOSE found a good correlation with the MPAI-3 (0.7) and a moderate negative correlation with the GOSE (-0.6). Factor analysis of these items extracted a 4-factor structure which represented the domains 'Emotion/Behavior' (C-HINAS), 'Independence/Community Living', 'Cognition', and 'Physical'. The C-HINAS showed good internal consistency (0.92), test-retest reliability (0.93), and concurrent validity with one MPAI subscale (0.7). Assessment of inter-informant reliability revealed good correspondence between the reports of the patients and the carers for both the C-HIPS (0.83) and the C-HINAS (0.82). CONCLUSION: Both the C-HINAS and the C-HIPS show strong psychometric properties. The qualitative methodology employed in the construction stage of the questionnaires provided good evidence of face and content validity. Comparisons between the P-HIPS and the C-HIPS, and the P-HINAS and the C-HINAS indicated high levels of agreement suggesting that in situations where the patient is unable to provide self-reports, information provided by the carer could be used.

Patients' views on outcome following head injury: a qualitative study.

BACKGROUND: Head injuries are a common occurrence, with continuing care in the years following injury being provided by primary care teams and a variety of speciality services. The literature on outcome currently reflects areas considered important by health-care professionals, though these may differ in some respects from the views of head injured individuals themselves. Our study aimed to identify aspects of outcome considered important by survivors of traumatic head injury. METHODS: Thirty-two individuals were interviewed, each of whom had suffered head injury between one and ten years previously from which they still had residual difficulties. Purposive sampling was used in order to ensure that views were represented from individuals of differing age, gender and level of disability. These interviews were fully transcribed and analysed qualitatively by a psychologist, a sociologist and a psychiatrist with regular meetings to discuss the coding. RESULTS: Aspects of outcome mentioned by head injury survivors which have received less attention previously included: specific difficulties with group conversations; changes in physical appearance due to scarring or weight change; a sense of loss for the life and sense of self that they had before the injury; and negative reactions of others, often due to lack of understanding of the consequences of injury amongst both family and general public. CONCLUSION: Some aspects of outcome viewed as important by survivors of head injury may be overlooked by health professionals. Consideration of these areas of outcome and the development of suitable interventions should help to improve functional outcome for patients.