Sudden Unexpected Death in Childhood in Greater Manchester (United Kingdom): A Five-Year Review (2015-2020).

The sudden, unexpected death of a child (SUDC) is a devastating experience. It is vital that supportive and investigative services are effective and promote the best outcomes for families. Analysis of 5 years of data from 309 SUDC cases in Greater Manchester, United Kingdom (UK) shows how a number of key service outcomes can be measured and achieved through a raft of actions which are commensurate with and exceed the service level recommended by the UK Government. Annual reports covering the work of the Greater Manchester SUDC team are compiled from audit forms completed by the attending SUDC pediatrician for each case. Data from these reports from April 1, 2015 to March 31, 2020 were analyzed. Most cases happened out of normal working hours, predominantly on Sundays. This supports the need for a 24-hour, 7 days per week SUDC service to enable early investigation and timely support for families. The review demonstrated that the Greater Manchester model is able to deliver this in a rapid response with early attendance in emergency departments and early home visits; effective joint agency working with police, children's social services, and other agencies; and provision of support to families. The proposed instigation of a key worker role in the SUDC team is a welcome development. This is central to ameliorating the experience for parents by providing bereavement support separate from the investigative role of the SUDC team. Research is needed into the role of the key worker, potentially as a dedicated bereavement nurse, and understanding of families' experiences to ensure that support is optimal.

The Need for Children's Advocacy Centres: Hearing the Voices of Children.

Children and young people (CYP) can be empowered to take on roles as agents of change in their own communities. CYP want to be heard and should be actively involved in the co-production, design and development of services aimed at them to ensure that the resulting services are acceptable and accessible. Little analysis of the framing and discourse of co-production in different contexts has been undertaken.Building on Children's Advocacy Center models from the United States of America (which are held in high esteem by local communities), there is perceived value of such a center in the UK. A service development initiative was designed to work with children from Greater Manchester (UK) to determine the potential for the establishment of a children's advocacy center in the North of England. This report presents the design and outcome of the initiative and contributes to the literature on the co-production of such service development projects with CYP, notably the means of achieving that outcome.Recommendations are made for the piloting of an Advocacy House model in the UK with collaborative efforts between CYP as well as health, education, law enforcement, social care providers, charities and voluntary groups. A community-inclusive partnership, underpinned by the principles of co-production and co-design, is integral to the further development of this pilot.

Development of a Simple, Serum Biomarker-based Model Predictive of the Need for Early Biologic Therapy in Crohn's Disease.

BACKGROUND: Early or first-line treatment with biologics, as opposed to conventional immunomodulators, is not always necessary to achieve remission in Crohn's disease [CD] and may not be cost-effective. This study aimed to develop a simple model to predict the need for early biologic therapy, in order to risk-stratify CD patients and guide initial treatment selection. METHODS: A model-building study using supervised statistical learning methods was conducted using a retrospective cohort across two tertiary centres. All biologic-naïve CD patients who commenced an immunomodulator between January 1, 2004 and December 31, 2016, were included. A predictive score was derived using Cox regression modelling of immunomodulator failure, and was internally validated using bootstrap resampling. RESULTS: Of 410 patients [median age 37 years, 47% male, median disease duration 4.7 years], 229 [56%] experienced immunomodulator failure [39 required surgery, 24 experienced a new stricture, 44 experienced a new fistula/abscess, 122 required biologic escalation] with a median time to failure of 16 months. Independent predictors of treatment failure included raised C-reactive protein [CRP], low albumin, complex disease behaviour, younger age, and baseline steroids. Highest CRP and lowest albumin measured within the 3 months preceding immunomodulator initiation outperformed baseline measurements. After model selection, only highest CRP and lowest albumin remained and the resultant Crohn's Immunomodulator CRP-Albumin [CICA] index demonstrated robust optimism-corrected discriminative performance at 12, 24, and 36 months (area under the curve [AUC] 0.84, 0.83, 0.81, respectively). CONCLUSIONS: The derived CICA index based on simple, widely available markers is feasible, internally valid, and has a high utility in predicting immunomodulator failure. This requires external, prospective validation.

Inter-rater reliability of paediatric emergency assessment: physiological and clinical features.

OBJECTIVE: The Paediatric Admission Guidance in the Emergency Department (PAGE) score is an assessment tool currently in development that helps predict hospital admission using components including patient characteristics, vital signs (heart rate, temperature, respiratory rate and oxygen saturation) and clinical features (eg, breathing, behaviour and nurse judgement). It aims to assist in safe admission and discharge decision making in environments such as emergency departments and urgent care centres. Determining the inter-rater reliability of scoring tools such as PAGE can be difficult. The aim of this study was to determine the inter-rater reliability of seven clinical components of the PAGE Score. DESIGN: Inter-rater reliability was measured by each patient having their clinical components recorded by two separate raters in succession. The first rater was the assessing nurse, and the second rater was a research nurse. SETTING: Two emergency departments and one urgent care centre in the North West of England. Measurements were recorded over 1 week; data were collected for half a day at each of the three sites. PATIENTS: A convenience sample of 90 paediatric attendees (aged 0-16 years), 30 from each of the three sites. MAIN OUTCOME MEASURES: Two independent measures for each child were compared using kappa or prevalence-adjusted bias-adjusted kappa (PABAK). Bland-Altman plots were also constructed for continuous measurements. RESULTS: Inter-rater reliability ranged from moderate (0.62 (95% CI 0.48 to 0.74) weighted kappa) to very good (0.98 (95% CI 95 to 0.99) weighted kappa) for all measurements except 'nurse judgement' for which agreement was fair (0.30, 95% CI 0.09 to 0.50 PABAK). Complete information from both raters on all the clinical components of the PAGE score were available for 73 children (81%). These total scores showed good' inter-rater reliability (0.64 (95% CI 0.53 to 0.74) weighted kappa). CONCLUSIONS: Our findings suggest different nurses would demonstrate good inter-rater reliability when collecting acute assessments needed for the PAGE score, reinforcing the applicability of the tool. The importance of determining reliability in scoring systems is highlighted and a suitable methodology was presented.

The impact of tobacco smoking on treatment choice and efficacy in inflammatory bowel disease.

Smoking significantly increases the risk of developing and worsens Crohn's disease (CD), yet protects against the development and reduces the severity of ulcerative colitis. It is less clear whether smoking impacts the efficacy of therapeutics in inflammatory bowel disease (IBD). We review the literature regarding the relationship between smoking and the efficacy of medical and surgical therapy in IBD. Smoking is associated with alterations in thiopurine metabolism and may affect time to disease relapse. The outcomes of anti-tumor necrosis factor therapy in active smokers appear neutral with data lacking for newer biologics. Smoking increases the risk of postoperative recurrence in those requiring resection for CD, likely attributable to perturbations of the gut microbiota although further implications of these for disease onset/progression and treatment efficacy remain unclear. Multiple lifestyle and psychosocial confounders are likely under-recognized cofactors in the association between smoking and IBD. Despite the widely promulgated risks associated with cigarette smoking in CD, more incisive data are required to further elucidate the actual relationship between smoking and disease pathways, while accounting for the several negative cofactors prevalent in smokers which cast uncertainty on the magnitude of the direct effect of smoking on disease pathophysiology and the efficacy of therapy.

The Impact of a School-based, Nurse-delivered Asthma Health Education Program on Quality of Life, Knowledge, and Attitudes of Saudi Children with Asthma.

More than two million people have asthma in Saudi Arabia: 13% aged 6-10 years. Asthma is one of the most common childhood illnesses. Little has been explored about children's ability to learn more about their own asthma in Saudi Arabia. The study was designed to assess the impact of a school-based, nurse-delivered asthma health education program on asthmatic children's knowledge and attitude toward asthma, quality of life, anxiety level, and school absenteeism. A quasi-experimental, non-equivalent group, pretest-posttest design was used. The education program was developed from existing evidence. The Pediatric Asthma Quality of Life Questionnaire, Spence Anxiety Tool, Asthma Knowledge Questionnaire, and Asthma Attitude Questionnaire were employed for data collection. Intervention (n = 130) and control (n = 98) groups were drawn from 10 schools in Ha'il region, Saudi Arabia. Descriptive and inferential statistics were used to examine differences within and between groups. Knowledge of asthma increased significantly more in the intervention group than in the control group. Attitude toward asthma was not changed by the intervention. Anxiety scores reverted to pretest level by posttest II. The intervention group had significantly better total quality of life scores than the control group, and school absenteeism reduced significantly after the delivery of the program. It was concluded that the asthma education program impacted positively on students' knowledge, quality of life, and school attendance. However, asthma education did not change attitudes toward the condition, and the impact on anxiety was not persistent. The results emphasize the benefits of the provision of health education directly to children. Asthma education should be integrated into the Saudi national child health program.

Opt-out Consent in Children's Emergency Medicine Research.

There is global acceptance that individuals should be allowed to decide whether or not to take part in research studies, and to do so after being informed about the nature of the research and the risk that might attach to participation. The process of providing detailed information before seeking consent (formalized by signatures) in advance of undertaking research procedures may not be possible in some circumstances, and sometimes an amended approach may be adopted. The use of opt-out consent has been recognized as a valid and ethical means of recruiting participants to studies particularly with large samples and where the risk to participants is small. However, it is sometimes misunderstood and can be a problematic factor in being accepted by research ethics committees and governing authorities. This may be due partly to differing expectations of the amount of information and support offered, together with the nature of the process that is adopted to ensure that a decision has been made rather than consent simply being assumed. In accordance with ongoing discussions with young people, and following consultation with parents, an opt-out consent strategy including varied means of providing information was employed in a large study of 44,501 cases of children attending emergency or urgent care departments. The study was conducted over more than 12 months in dissimilar emergency departments and an urgent care unit, and was designed to support better decision-making in pediatric emergency departments about whether children need to be admitted to hospital or can be discharged home safely. Robust analysis of the factors that exerted the greatest impact on predicting the need to admit or the safety of discharging children led to a revised version of an existing tool. In this article, we review approaches to consent in research, the nature and impact of opt-out consent, the factors that made this an effective strategy for this study, but also more recent concerns which may make opt-out consent no longer acceptable.

Thiopurines vs methotrexate: Comparing tolerability and discontinuation rates in the treatment of inflammatory bowel disease.

BACKGROUND: There are safety concerns regarding immunomodulators (thiopurines and methotrexate) for treatment of inflammatory bowel disease (IBD). AIM: To compare the long-term tolerability, and persistence of thiopurine and methotrexate therapy in IBD. METHODS: A retrospective cohort study was performed at two hospitals between 1 January 2004 and 31 December 2016 for patients commenced on thiopurines or methotrexate for IBD. Treatment discontinuation rates, intolerances and disease activity were obtained from medical records. RESULTS: There were 782 patients commenced on immunomodulator therapy; 244 (31%) on methotrexate with folate (67% subcutaneous therapy) and 538 (69%) on thiopurine (73% azathioprine). Median follow-up was 42 vs 47 months (P = 0.09). In patients on thiopurines, median 6-TGN was 298 pmol/8 x 108 RBCs, while the median dose of methotrexate was 25 mg weekly. Methotrexate recipients had a higher rate of prior immunomodulator intolerance, were typically older and had a longer disease duration (54% vs 3%, median 43 vs 36 years, 6 vs 5 years, respectively, each P < 0.05). Overall, 208 (27%) discontinued therapy due to adverse events, (40% on methotrexate vs 19% on thiopurines, P < 0.001), including nausea (18% vs 4%), fatigue (7% vs 2%) and hepatotoxicity (8% vs 2%, each P < 0.001). Hospitalisations from adverse events (0.8% vs 0.9%) and serious infections (9% vs 12%), and deaths (1% vs 0%) were comparable between groups (all P > 0.05). Discontinuation due to adverse events occurred later in patients on methotrexate than on thiopurines (median 7 vs 5 months, P = 0.08). CONCLUSION: Discontinuation of methotrexate occurred at rates twice that of dose-optimised thiopurine therapy.

Observational cohort study with internal and external validation of a predictive tool for identification of children in need of hospital admission from the emergency department: the Paediatric Admission Guidance in the Emergency Department (PAGE) score.

OBJECTIVES: To devise an assessment tool to aid discharge and admission decision-making in relation to children and young people in hospital urgent and emergency care facilities, and thereby improve the quality of care that patients receive, using a clinical prediction modelling approach. DESIGN: Observational cohort study with internal and external validation of a predictive tool. SETTING: Two general emergency departments (EDs) and an urgent care centre in the North of England. PARTICIPANTS: The eligibility criteria were children and young people 0-16 years of age who attended one of the three hospital sites within one National Health Service (NHS) organisation. Children were excluded if they opted out of the study, were brought to the ED following their death in the community or arrived in cardiac arrest when the heart rate and respiratory rate would be unmeasurable. MAIN OUTCOME MEASURES: Admission or discharge. A participant was defined as being admitted to hospital if they left the ED to enter the hospital for further assessment, (including being admitted to an observation and assessment unit or hospital ward), either on first presentation or with the same complaint within 7 days. Those who were not admitted were defined as having been discharged. RESULTS: The study collected data on 36 365 participants. 15 328 participants were included in the final analysis cohort (21 045 observations) and 17 710 participants were included in the validation cohort (23 262 observations). There were 14 variables entered into the regression analysis. Of the 13 that remained in the final model, 10 were present in all 500 bootstraps. The resulting Paediatric Admission Guidance in the Emergency Department (PAGE) score demonstrated good internal validity. The C-index (area under the ROC) was 0.779 (95% CI 0.772 to 0.786). CONCLUSIONS: For units without the immediate availability of paediatricians the PAGE score can assist staff to determine risk of admission. Cut-off values will need to be adjusted to local circumstance. STUDY PROTOCOL: The study protocol has been published in an open access journal: Riaz et al Refining and testing the diagnostic accuracy of an assessment tool (Pennine Acute Hospitals NHS Trust-Paediatric Observation Priority Score) to predict admission and discharge of children and young people who attend an ED: protocol for an observational study. BMC Pediatr 18, 303 (2018). https://doi.org/10.1186/s12887-018-1268-7. TRIAL REGISTRATION NUMBER: The protocol has been published and the study registered (NIHR RfPB Grant: PB-PG-0815-20034; ClinicalTrials.gov:213469).

Evaluation of a Choir as a Non-Medical Intervention for Children with Asthma: BreathStars.

A shift in the current health policy has seen heightened focus on non-medical interventions which can be delivered out with formal health-care settings, to complement and enhance the clinical care of people with long-term conditions. Asthma is a common long-term condition managed by pharmacological and non-pharmacological interventions. Recent research activity has focused on the use of singing for respiratory health due to its similarity with the more well-known intervention of breathing exercises. The aim of this study was to determine if singing improved breathing in children with asthma. A realist evaluation study design with a mixed methods approach was adopted to evaluate a singing group for children aged 7-12. Results obtained through framework analysis of the data indicated notable improvement in asthma control with the added impact on self-esteem. Enjoyment of the singing group within a family centered approach was seen as a positive alongside the community benefit of wider asthma education. Lessons can be learnt from this evaluation which could inform future initiatives relevant to the current agenda of asset-based approaches such as social prescribing within the context of the current devolution of the health and social care budget in the North West of England.

Health satisfaction and family impact of parents of children with cancer: a descriptive cross-sectional study.

BACKGROUND: The impact on parents of coping with a child who has cancer can be both severe and multifarious. Considerable distress persists throughout the treatment phase, persisting even after completion of treatment with heightened anxiety and stress associated with thoughts of recurrence or relapse. AIM: The purpose was to investigate the links between parents' satisfaction with the health care offered to their child with cancer and the impact on families of caring for such a child (including their health-related quality of life) in a Middle Eastern country. STUDY DESIGN: A descriptive, correlational, cross-sectional design was adopted. Arabic versions of parent-completed, validated instruments were completed by 113 parents whose child had cancer. RESULTS: Family relationship was found to be the best functioning domain, and daily activities were seen to be the poorest. In general, parents expressed satisfaction with their child's health care, but inadequate attention had been paid to their emotional needs. Cases in which children were reported to exhibit more emotional and behavioural problems correlated with greater negative impact on the family and disrupted family functioning. DISCUSSION: Parental quality of life was more severely affected than family quality of life. This results from mothers taking up most of the caregiver burden, and the impact on mothers was significantly greater than that on fathers. Children were protected from stress and anxiety by their mother. This burden on mothers resulted in deficits in emotional, social and physical functioning. PRACTICE AND POLICY IMPLICATIONS: Nurses and other health professionals should redress the balance between family-centred care strategies and child-centred approaches. Effort is needed to provide psychological support to parents by ensuring adequate preparation of staff, especially nurses, to recognise need and provide support in a therapeutic environment. Support may be needed for years after the diagnosis. This is a health professional role that may currently be neglected, and for which training is essential.

Prolonged Grief Disorder and Its Relationship With Perceived Social Support and Depression Among University Students.

The purpose of the current study was to examine the association between prolonged grief disorder, perceived social support, and severity of depression among Saudi Arabian university students after the death of a significant individual. A cross-sectional design was used to examine descriptive characteristics, correlational relationships, and statistical mean differences between male and female participants on prolonged grief disorder (PGD) scores in a convenience sample of Saudi Arabian college students. The Prolonged Grief Disorder-13 tool, Multidimensional Scale of Perceived Social Support, and the revised Beck Depression Inventory® were completed by 226 Saudi Arabian undergraduate students. Students reported moderate perceived social support from family, friends, and significant others. Only 13 (5.8%) individuals reported perceived support from academic staff. Students with the highest PGD scores were the least well-supported and most depressed. The need for academic staff and social workers to provide more social support to grieving students is discussed. [Journal of Psychosocial Nursing and Mental Health Services, 57(2), 44-51.].

Refining and testing the diagnostic accuracy of an assessment tool (PAT-POPS) to predict admission and discharge of children and young people who attend an emergency department: protocol for an observational study.

BACKGROUND: Increasing attendances by children (aged 0-16 years) to United Kingdom Emergency Departments (EDs) challenges patient safety within the National Health Service (NHS) with health professionals required to make complex judgements on whether children attending urgent and emergency care services can be sent home safely or require admission. Health regulation bodies have recommended that an early identification systems should be developed to recognise children developing critical illnesses. The Pennine Acute Hospitals NHS Trust Paediatric Observation Priority Score (PAT-POPS) was developed as an ED-specific tool for this purpose. This study aims to revise and improve the existing tool and determine its utility in determining safe admission and discharge decision making. METHODS/DESIGN: An observational study to improve diagnostic accuracy using data from children and young people attending the ED and Urgent Care Centre (UCC) at three hospitals over a 12 month period. The data being collected is part of routine practice; therefore opt-out methods of consent will be used. The reference standard is admission or discharge. A revised PAT-POPs scoring tool will be developed using clinically guided logistic regression models to explore which components best predict hospital admission and safe discharge. Suitable cut-points for safe admission and discharge will be established using sensitivity and specificity as judged by an expert consensus meeting. The diagnostic accuracy of the revised tool will be assessed, and it will be compared to the former version of PAT-POPS using ROC analysis. DISCUSSION: This new predictive tool will aid discharge and admission decision-making in relation to children and young people in hospital urgent and emergency care facilities. TRIAL REGISTRATION: NIHR RfPB Grant: PB-PG-0815-20034. ClinicalTrials.gov: 213469. Retrospectively registered on 11 April 2018.

A Systematic Review of the Impact of Educational Programs on Factors That Affect Nurses' Post-Operative Pain Management for Children.

Despite extensive research in the international arena into pain and its management, there is, as yet, little research on the topic of pain in children in Saudi Arabia and in the Gulf countries generally. A systematic review was conducted to explore the impact of education programs on factors affecting paediatric nurses' postoperative pain management practice. This was done in order to advise the creation of an educational program for nurses in Saudi Arabia. Knowledge about pain, attitudes towards pain, beliefs about children's pain, perceptions of children's reports of pain, self-efficacy with regard to pain management, and perceptions of barriers to optimal practice were all considered to be relevant factors. The review was restricted to randomized controlled trials and quasi-experimental designs, excluding studies focussed on chronic pain or populations other than solely children. Studies published in English between 2000 and 2016 were identified using CINAHL, MEDLINE, Ovid SP, The Cochrane Library, ProQuest, and Google Scholar databases. Of 499 published studies identified by the search, 14 met the inclusion criteria and were included in the review. There was evidence of educational programs exerting a postive impact on enhancing pediatric nurses' knowledge of pain and modifing their attitudes towards it, but only limited evidence was available about the impact on nurses' beliefs and perceptions of children's reports of pain, nurses' self-efficacy, or barriers to optimal practice. None of the studies was conducted in Saudi Arabia. Studies were needed to address additional aspects of preparedness for effective postperative pain management. Details of educational programs used as experimental intervention must be included in reports.

Evaluating a community-led project for improving fathers' and children's wellbeing in England.

Although under-researched and under-theorized compared to other settings, there is potential for the family setting to be harnessed to support the development of healthy children and societies and to reduce health inequalities. Within this setting, the role of fathers as health facilitators has yet to be fully understood and considered within health promotion. This paper draws on a two year evaluation of a community embedded intervention for fathers and children in an area of multiple deprivation in North West England. The evaluation integrated a variety of qualitative methods within a participatory evaluation framework to help understand the development and impact of a programme of work co-created by a social enterprise and fathers from within the community. Findings suggest that allowing fathers to define their own concerns, discover solutions to these and design locally appropriate ways to share these solutions can result in significant change for them, their children and the wider community. The key to this process is the provision of alternative spaces where fathers feel safe to share the substantial difficulties they are experiencing. This improved their confidence and had a positive impact on their relationships with their children and with significant others around them. However, this process required patience, and a commitment to trusting that communities of men can co-create their own solutions and generate sustainable success. We suggest that commissioning of services delivered 'to' people could be replaced, or supplemented, by commissioning appropriate organisations to work with communities to co-create solutions to the needs they themselves have recognized.

The Psychometric Properties of an Arabic version of the PedsQL Multidimensional Fatigue Scale Tested for Children with Cancer.

Fatigue is considered to be one of the most reported symptoms experienced by children with cancer. A major aim of this study was to develop an Arabic version of the Pediatric Quality of Life (PedsQL) Multidimensional Fatigue Scale (child report) and to test its psychometric proprieties for the assessment of fatigue in Arabic children with cancer. The PedsQL Multidimensional Fatigue Scale (Arabic version) and the PedsQL TM 4.0 Generic Core scale (existing Arabic version) were completed by 70 Jordanian children with cancer. Cronbach's alpha coefficients were found to be 0.90 for the total PedsQL Multidimensional Fatigue Scale (Arabic version), 0.94 for the general fatigue subscale, 0.67 for the sleep/rest fatigue subscale, and 0.87 for the cognitive fatigue subscale. The PedsQL Multidimensional Fatigue Scale scores correlated significantly with the PedsQL TM 4.0 Generic Core scale and demonstrated good construct validity. The results demonstrate excellent reliability and good validity of the PedsQL Multidimensional Fatigue Scale (Arabic version) for children with cancer. This is the first validated scale that assesses fatigue in Arabic children with cancer. The English scale has been used with several pediatric clinical populations, so this Arabic version may be equally useful beyond the field of cancer.

Health-related quality of life and its association with self-esteem and fatigue among children diagnosed with cancer.

AIMS AND OBJECTIVES: To identify the links between self-esteem, fatigue and health-related quality of life for children and young people during and following treatment for cancer. BACKGROUND: Measures to minimise adverse outcomes for survivors of childhood cancer have been developed, but the crucial periods of returning to school and transition to adult life and adult services are not addressed so well. Screening of quality of life, fatigue and self-esteem in childhood cancer patients during and after treatment is important for optimising the nursing response and improving outcomes for children. DESIGN: A cross-sectional, descriptive, correlational, comparative survey was designed. METHODS: Validated measures of the attributes being studied were used. This study was conducted in private rooms on the ward and in the outpatient clinic of a major oncology hospital in Jordan in 2015. Seventy children aged 5-16 years were included. Ethical approval was secured. RESULTS: The age range of the children was 5-16 years (Mean 10·17, SD 3·4 years). Thirty were girls and 40 were boys. The total quality of life scores ranged from 21-100 (M = 65·5; SD = 17·6). The total scores of fatigue range from 12·5-100 (M = 65·79; SD = 22·20). Children with a high level of fatigue experienced lower quality of life. CONCLUSION: Continuing education centres at hospitals may find the results of this study helpful to provide professional updates and training events to enhance nurses' understanding of psychosocial distress responses and ability to intervene effectively within the multiprofessional effort. RELEVANCE TO CLINICAL PRACTICE: The outcomes of this study may enhance the development of guidelines for routine assessment by nurses and others of these factors among children with cancer. The nursing role in ensuring holistic care and attention to the problems of most concern to patients could be strengthened.

Four-year longitudinal impact evaluation of the Action for Children UK Neglect Project: outcomes for the children, families, Action for Children, and the UK.

Neglect has a devastating impact on children and is the most pervasive form of child maltreatment in the United Kingdom. The study purpose was to establish outcomes for neglected children following structured assessment and intervention to ascertain what worked and why it worked. This prospective cohort study included 85 cases of neglected children under 8 years of age from 7 centers across the United Kingdom. Data were collected between 2008 and 2012 through serial quantitative recording of the level of concern about neglect. Serial review of qualitative case-file data was undertaken for detail of assessment, interventions, and evidence of outcomes for the child. Data analysis was undertaken by paired t-test, Chi Square, descriptive statics for categorical data, and, for narrative data, identification of recurring factors and patterns, with correlation of presenting factors, interventions, and outcomes. Paired t-test demonstrated significant decrease in overall Action for Children Assessment Tool scores between assessment (M=43.77, SD=11.09) and closing the case (M=35.47, SD=9.6, t(84)=6.77, p<0.01). Improvement in the level of concern about neglect was shown in 79% of cases, with only 21% showing no improvement. In 59% of cases, concern about neglect was removed completely. Use of the assessment tool fostered engagement by parents. The relationship between lack of parental engagement and children being taken into care was statistically significant, with a large effect size (χ(2) 10.66, df1, p=0.0001, OR=17.24). When parents refused or were unable to respond positively to the intervention, children benefited from an expedited move into care.

The MM-CGI Cerebral Palsy: modification and pretesting of an instrument to measure anticipatory grief in parents whose child has cerebral palsy.

AIMS AND OBJECTIVES: To establish the potential of a modified version of the MM-CGI Childhood Cancer to assess anticipatory grief in parents of children with cerebral palsy, to amend the existing scale for use with the specific patient group, to test the psychometric properties of the modified version (MM-CGI Cerebral Palsy) and to review the clinical potential of the new scale. BACKGROUND: Parents of children with cerebral palsy may experience reactions similar to parents of children with other enduring or life-limiting conditions, and anticipatory grief may be one such psychological reaction. While the burden of caring is sometimes balanced by positive perceptions of the child, which enhance coping ability, for many parents the outcome is damage to their physical and mental health and impaired family functioning. DESIGN: A cross-sectional, descriptive, correlational design. METHODS: The MM-CGI Cerebral Palsy was administered in structured interviews with 204 parents. Standardised measures of caregivers' depression, stress and perceived social support were also administered. Mothers and fathers were recruited from healthcare centres and schools for special education. Cronbach's alpha was used to assess internal consistency, and Pearson's product-moment correlation was used to assess construct validity. RESULTS: The subscales were each found to measure a single dimension of anticipatory grief, and significant correlations were established with existing instruments. The instrument demonstrated excellent internal consistency reliability and good construct validity. CONCLUSIONS: The MM-CGI Cerebral Palsy could be useful for diagnosing anticipatory grief among parents of children with cerebral palsy. This preliminary work moves the programme on to testing in intervention studies. RELEVANCE TO CLINICAL PRACTICE: In the absence of an existing measure for the assessment of anticipatory grief, specifically in parents of children with cerebral palsy, the MM-CGI Cerebral Palsy could prove to be an effective assessment tool for clinicians and researchers.