Tony Long

Children's experiences as hospital in-patients: Voice, competence and work. Messages for nursing from a critical ethnographic study

BACKGROUND There is growing evidence that childrens subjective interpretations of events may differ significantly from those of adults; yet childrens and young peoples voices and childrens knowledge regarding hospital care remain relatively unexplored. OBJECTIVE To develop insight into childrens subjective interpretations and knowledge of being hospital in-patients. DESIGN Critical ethnography. SETTING A nephro-urology ward in a tertiary referral childrens hospital in the north of England. PARTICIPANTS A purposive sample was employed of 15 children over 2 phases: six (9-15 years) at home in a reconnaissance first phase, and nine (5-14 years) in hospital in phase 2. METHODS A raft of child-friendly, age-appropriate strategies was used to engage children in phase 1. Phase 2 involved over 100 h of field-work with hospitalised children over 6 months, with observation, interview, play and craft activities as prominent methods. Data were analysed using constant comparative methods. RESULTS The study ward was a place in which children struggled to find a space for their competence to be recognised and their voice heard. Childrens voice became manifest in what they said but also through the non-verbal mechanisms of resisting, turning away and being silent. While all the children shared the experience of being in trouble, recognition of their competence was fluid and contingent on their relationships with the nurses alongside other structural and material factors. The children worked hard to maintain their position as knowledgeable individuals. When they could not do so they relied on supportive adults, and in the absence of supportive adults they became marooned and received bare minimum care. CONCLUSION The hospital ward was a place for children in which there was little space for childrens voices. When their voices were heard, they were often seen as a challenge. Quiet, sick and shy children who were alone were the most likely to have their needs overlooked and become subject to standardised nursing care. A more inclusive and participatory model of nursing practice with children is urgently needed.

Development of a modified instrument to measure anticipatory grieving in Jordanian parents of children diagnosed with cancer: The Marwit and Meuser caregiver inventory childhood cancer

The purpose of this article is to report on the development and field testing for validity and reliability of a modified version of the Marwit and Meuser Caregiver Inventory (MM-CGI) for the assessment of anticipatory grief among Jordanian parents of children with cancer (the MM-CGI Childhood Cancer). In 2006, a 50-item MM-CGI Childhood Cancer was administered to 140 Jordanian parents living with a child with cancer. The Cronbach α coefficient for the total instrument was .95, and Cronbach α coefficients for each of the 3 subscales was .91 for personal sacrifice burden, .90 for heartfelt sadness and longing, and .86 for worry and felt isolation. The construct validity of this instrument was supported by demonstrating a significant and positive correlation with the Anticipatory Grief Scale. The MM-CGI Childhood Cancer demonstrated strong convergent validity and excellent internal consistency reliability. However, further testing with a larger sample to facilitate factor analysis is needed to complete the validation process.

Evaluation of educational programmes for paediatric cancer nursing in England

The results of part of a larger study to evaluate educational provision for paediatric oncology and palliative care nursing in England are presented here. Mapping of cancer care provision, based upon the English National Board 240 programme, was undertaken by analysis of relevant curriculum documents. Prescribed programme outcomes were reviewed against expected course outcomes proposed by the European Oncology Nursing Society. Particular attention was also paid to expected processes of assessment of clinical practice, consideration of adolescent patients, and opportunities for shared learning. Widespread compliance with the European Oncology Nursing Society standard was found, with only two of the 19 areas substantially neglected. These related to the prevention and early detection of cancer (less relevant in paediatric cancer than for adults), and understanding the principles of cancer clinical trials (probably due to lack of explicit statement in curriculum documents rather than actual failure to address the topic). A range of prescribed assessment practices were noted, but the degree to which direct observation was involved was variable, and indirect measures appeared to predominate. There was little specific recognition of adolescence as a discrete topic to be addressed in the programmes. Shared learning tended to be introduced for logistical reasons of small class numbers rather than for any perceived intrinsic value.

Psychological distress and perceived support among Jordanian parents living with a child with cerebral palsy: A cross-sectional study

BACKGROUND Cerebral palsy, with a prevalence in Europe of 2-2.5 per 1000 live births, is the most common severe physical disability affecting children. While many parents have positive perceptions of their disabled children, caring for a child with disability can be exhausting and stressful, and social support is an important coping resource. There is little evidence about how having a child with cerebral palsy affects Jordanian parents. AIM The purpose of this study was to provide insight into the psychological distress and perceived support among Jordanian parents living with a child with cerebral palsy. METHOD In 2010, a cross-sectional, descriptive, correlational design was used with a nonprobability sample of 204 Jordanian parents. Both mothers and fathers, interviewed individually rather than in pairs, were recruited from health care centres that provided comprehensive care for children with cerebral palsy in Jordan and from designated schools for special education. The Gross Motor Function Classification System, the Perceived Stress Scale (PSS), the Beck Depression Inventory, the Strengths and Difficulties Questionnaire and the Multidimensional Scale of Perceived Social Support (MSPSS) were administered to parents. Descriptive statistical analysis was applied. Bivariate correlation analysis was undertaken to examine the relationship between variables. RESULTS More than 60% of parents often felt nervous and stressed. The mean score on the PSS was 27.0 (SD=9.33), and the mean score on the MSPSS was 58.9 (SD=15.1). Severe disability in the child was associated with high mental distress in the parent and linked to low support from friends. There was a significant negative correlation between parental stress, depression and social support. Parents with the most psychological distress were the least well supported. CONCLUSION   This study has implications for health professionals in terms of developing strategies for reducing parental stress. There are implications for policy to provide support for parents and to develop family-centred services. The findings will inform an intervention study to investigate multi-professional support.

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.

A systematic review of the impact of educational programs on factors that affect nurses' post-operative pain management for children

ABSTRACT 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.

Commentary on Susan Bradley: pride or prejudice – issues in the history of children’s nursing education

The paper by Susan Bradley provides both sobering and challenging reading. She discusses an issue of nurse education in the UK that arose more than a century ago but which remains a matter for sometimes acrimonious debate. The issues may seem alien to readers from outside the UK where centres of excellence in paediatric treatment, care, and nursing exist without specialist registration in child health nursing. However, in the UK, as Susan Bradley explains, specialist registration, professional educational preparation, and clinical career prospects have been inextricably intertwined in a complex and sometimes illogical manner from the dawn of formal nurse training and registration. It may be considered a sad indictment that some of the issues that pepper the history of child health nursing in the UK seem to be so obviously present even today. The primacy of professional jealousy over rational deliberation; the lack of focus on patients’ needs and how these may best be addressed; finding ways to instil within nurses competence in fundamental clinical skills; the insufficient supply of specialist child health nurses; pressure on training places and the ability of clinical nurses to supervise the larger number of students; and the inadequacy of clinical career pathways each still exercise the minds of clinicians, managers, educators, and policy-makers. The current day sees requirements, opportunities, and challenges for children’s nurses in both preparatory education and the maintenance of effective clinical practice, and a number of questions remain outstanding in each of these.

Review : A tripartite approach to assessing practice

■ Assessment of clinical practice is at least as important as assessment of theory. ■ To date the assessment of clinical competence at differing levels has been neglected. ■ When assessing clinical practice it is vital to utilise multiple sources of evidence. ■ A tripartite relationship of practitioner or student, supervising practitioner, and lecturer is a versatile arrangement for evaluating evidence of achievement.

The psychometric properties of an Arabic version of the PedsQL Multidimensional Fatigue Scale tested for children with cancer

ABSTRACT 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.

Psychometric properties of the Arabic version of the PedsQL™ Family Impact Scale

Treatment of childhood cancer and its side effects can exert a negative impact on patients’ parents. A valid and reliable instrument to measure family functioning in Arabic families was considered to be a vital resource. The Pediatric Quality of Life Inventory (PedsQL) Family Impact Scale and the PedsQL Healthcare Satisfaction Hematology/Oncology Scale – Parent Report were completed by 113 Jordanian parents of children with cancer. Cronbach’s alpha coefficient was found to be excellent at 0.93 for the total PedsQL Family Impact Scale, which correlated significantly with the PedsQL Healthcare Satisfaction Hematology/Oncology Scale – Parent Report demonstrating good construct validity. The Arabic version of the PedsQL Family Impact Scale is both valid and reliable for use with parents of children with cancer.