Journal of child health care : for professionals working with children in the hospital and community
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J Child Health Care · Jun 2012
Jointly managing arthritis: information needs of children with juvenile idiopathic arthritis (JIA) and their parents.
The objective of this article is to explore information needs of children with juvenile idiopathic arthritis (JIA) and their parents in order to develop a web-based psychoeducational program aimed at improving their quality of life. A qualitative study design was used. A purposive sample of children (n = 41; 8-11 years) with JIA and parents (n = 48) participated in parent-child interviews (n = 29), and four child-focus and four parent-focus group interviews. ⋯ Participants endorsed a web-based program as a way to access JIA information and social support. In order to jointly manage JIA, participants expressed the need for disease-specific information, management strategies, and social support and felt that the Internet was acceptable for delivering these disease-management strategies. Findings from this study will inform development and evaluation of an online program to help children and parents jointly manage JIA.
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J Child Health Care · Sep 2011
Uncovering pain in critically ill non-verbal children: nurses' clinical experiences in the paediatric intensive care unit.
Critically ill paediatric patients are frequently exposed to pain that is required to be assessed and treated effectively. The most reliable resource for assessing pain is the child itself, but children in the paediatric intensive care unit (PICU) are commonly unable to communicate their needs, requiring professional caregivers to uncover and interpret pain. However, nurses and paediatricians do not have sufficient knowledge of how critical illness affects childrens' signs of pain. ⋯ Subtle expressions of pain were recognised when focus was patient-oriented. These findings support the necessity of actively looking for pain deriving from various perspectives and considering diverse caring needs when doing so. Acknowledging pain makes pain visible.
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J Child Health Care · Sep 2010
Continuity and coordination of care during and after neonatal intensive care.
To assess parental experiences regarding the continuity and coordination of care in children suffering from long-lasting health problems during and after treatment at a Neonatal Intensive Care Unit (NICU), a cross-sectional survey was performed, using a validated tool to obtain continuity and coordination scores. Scores were collected among parents of four age groups: newborns at the NICU (n = 51), ex-NICU preschool children (n = 50), ex-NICU children in primary school (n = 53), and ex-NICU children in secondary school (n = 57). Overall, parents are least satisfied with the consistency of care concerning the specific needs of their children. ⋯ Furthermore, parents had a positive opinion towards other continuity and coordination aspects. Our findings implicate that regular neonatal follow-up care should not be restricted to the first years of life, but should be extended to both primary school age, and secondary school age. In particular, health care providers have to be attentive to the changing needs of children during their development.
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Family-centred care has been defined as a philosophy of care where families are supported in their decision-making roles in an equal partnership with professionals. The research question was 'How ''family centred'' do staff and parents perceive their work with disabled children and young people?' A questionnaire, the Measure of Processes of Care for Service Providers (MPOC-SP), was used as a basis for designing focus groups and interview questions. ⋯ Parents spoke highly of the staff input and gave varied descriptions of the attributes they most valued, including feeling supported and being in an equal partnership. Investigation of the influence of focused FCC training on parental experiences is warranted.
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J Child Health Care · Mar 2010
Students with brain tumors: their post-treatment perceptions of teachers, peers, and academics and retrospective views on school during treatment.
The purpose of this pilot study was: (1) to determine how students surviving brain tumors (BTs) perceive their teachers' responses to them, their own academic performance, and their interactions with peers at school using a new measure; and (2) to describe students' retrospective perceptions of schooling while undergoing treatment. Using a sample of 22 students treated for a BT (ages 9-18) and 22 comparison (ages 8-19), no significant BT-control group differences regarding perceptions of teacher response, academic performance, and interactions with peers at school were found. ⋯ Additionally, they felt that completing schoolwork during treatment was important. The results of this study may provide insight into the perceived psychosocial adjustment and academic performance of students with BTs during and after treatment.