Child: care, health and development
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Child Care Health Dev · Sep 2007
Providing a children's palliative care service in the community through fixed-term grants: the staff perspective.
Children's palliative care services have recently been awarded fixed-term grants, aimed at improving the provision of care for children with life-limiting conditions in the community. We report findings of a qualitative study to investigate the experience of a cohort of community children's nurses from teams involved in setting up or extending community-based children's palliative care services. The purpose of the study was to identify factors that affect service delivery, from the staff perspective, and to suggest ways of promoting their sustainable development. ⋯ The maintenance of a mixed caseload with a significant proportion of direct care, provision of ongoing support and clearly defined roles are recommended as means of bolstering the ability of staff to develop their services. The deliberate locating of services to enhance communication between staff and guidance on the preparation of funding applications may further contribute to the sustainability of these services.
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To ascertain the level of support and training available to paediatric specialist registrars (SpRs) in breaking bad news and their self-reported confidence in this task. ⋯ Most SpRs had received training in breaking bad news and self-reported confidence in this skill was high, although their hands-on experience was limited. Recent research shows, however, that parental dissatisfaction with the way in which bad news is broken remains high. The potential discrepancy between self-reported confidence and actual competence casts doubt on the value of self-evaluation.
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Child Care Health Dev · Jul 2007
Multicenter StudyDevelopment and preliminary validation of the 'Mind the Gap' scale to assess satisfaction with transitional health care among adolescents with juvenile idiopathic arthritis.
To develop a scale to assess satisfaction with transitional health care among adolescents with a chronic illness and their parents. ⋯ These preliminary results report the potential of the 'Mind the Gap' scale in evaluating transitional care for adolescents with JIA. In view of the generic nature of transitional care reflected in the scale, this scale has wider potential for use with adolescents with other chronic illness in view of the generic nature of transition. This development is particularly timely in the context of transitional care developments in the UK and further validation of the scale is in progress.
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Child Care Health Dev · Jul 2007
The self-concept of children and adolescents with neurofibromatosis type 1.
Neurofibromatosis type 1 (NF1) is a genetic disorder associated with cognitive deficits, learning problems, medical complications and cosmetic disfigurement. Despite the wide-ranging impact of NF1, very few studies have examined the psychosocial adjustment of individuals with NF1, and in particular, self-concept. The aims of this study were threefold: (i) to examine the self-concept of children and adolescents with NF1; (ii) to compare the self-concept of children with NF1 (NF1 only), children with NF1 and learning difficulties [NF1 + LA (low achievement)], and children with NF1 and attention deficit hyperactivity disorder (ADHD) (NF1 + ADHD); and (iii) to examine the academic self-concept of these three groups relative to objective criteria - academic achievement and teacher ratings of academic competence. ⋯ Children and adolescents with NF1 are most likely to develop negative self-concepts about their physical and sporting abilities. Inflated academic self-perceptions are discussed in light of the positive illusory bias, which may serve as an adaptive or protective function.
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Child Care Health Dev · May 2007
Caregiver experiences, contextualizations and understandings of the burn injury to their child. Accounts from low-income settings in South Africa.
Childhood burn injury is a widespread phenomenon with a disproportionate concentration in Sub-Saharan Africa. Burn injuries may have far-reaching and traumatic interpersonal, social and occupational effects for young children. There has been scant attention to the caregiver's experience of these events. This study sought to explore the caregiver's understanding of the injury to their children, the injury causes and its preventability. ⋯ Caregivers emphasized the multifactorial nature of the burn injury event and highlighted the adverse environmental, domestic and personal circumstances to their child's burn injury. Their recommendations for burn prevention avoidance and control are consistent with their understanding of the injury aetiology and demonstrate a synergy with public health recommendations for environmental and technological interventions.