Mark Whiting
Remembering Dame Elizabeth Fradd, a champion for children and young people
The respected children’s nurse died on 12 May after a long and distinguished career
Lost in transition – time for (another) rethink?
The voices of children and their families must be at the heart of a major overhaul
Virtual and online learning during Covid-19
Education experiences of community children’s nursing students during the pandemic
Effective nursing care of children and young people outside hospital
Aim To assess the preparation required to ensure a workforce of nurses who can provide high quality out-of-hospital services for children and young people. Methods Using mixed methods, questionnaires were sent to young people and community children’s nursing teams, interviews were conducted with academic staff and clinical nurses, and focus groups were undertaken with pre-registration children’s nursing students. Findings Nurses’ communication skills and clinical abilities were most important to young people. There is a range of opinions about optimum out-of-hospital clinical experience. Pre- and post-qualification education and recruitment in this area, therefore, need attention. Conclusion Out-of-hospital care presents problems, but is developing rapidly. Adequate, updated training, supervision and resources are needed.
What it means to be the parent of a child with a disability or complex health need
Aim To explore how parents of children with disabilities and complex health needs make sense of the circumstances in which they find themselves. Method A series of in-depth semi-structured interviews were undertaken with the parents of 34 children (from 33 families) with a disability or a complex health need. The families were nominated by health professionals to one of three study subgroups: children with a disability, children with a life-limiting or life-threatening illness, or children with technology dependence. Interviews were recorded and transcribed. Findings Analysis of parents’ responses related to sense-making revealed two main categories: ‘diagnosis’ and ‘personal, cultural and personality factors’. These two categories alongside the two other main study themes, ‘impact’ and ‘need for help and support’ reported in the previous two articles in this series – linked into a final study theme: ‘battleground’. Conclusion For the parents of children with complex health needs and disabilities, the sense that they make of their situation plays a pivotal role in determining how parents experience the impact of disability and the need for help and support.
Support requirements of parents caring for a child with disability and complex health...
Aim To investigate the experiences of parents of children with complex health needs in relation to the help and support they receive when caring for their child. Method A series of in-depth semi-structured interviews undertaken with the parents of 34 children (33 families) with a disability or a complex health need. Families were categorised into one of three subgroups: children with a disability, children with a life-limiting or life-threatening illness, or children with technology dependence. Findings In relation to parental experience of the need for help and support, two major categories were identified, namely ‘people’, and ‘processes and resources’, as well as a series of subcategories. Respite care was identified as the greatest unmet need. Conclusion Parents identified a range of helping behaviours among key professional staff involved in support provision. The greatest area of unmet needs is for respite care.
Children with disability and complex health needs: the impact on family life
Aim To identify consistency and differences in parental perceptions of impact, need for support and ‘sense making’ in children with a disability, children with a life-threatening or life-limiting illness and children who are technology dependent. Method A series of in-depth semi-structured interviews were undertaken with parents from 33 families that included one or more child with disabilities. The data arising from these interviews were subjected to a systematic comparative analysis based on three discrete subgroups of children: those with a disability, those with a life-limiting or life-threatening illness, and those with a technology dependence. Findings There were major areas of consistency in parental experience of impact as related in three categories that emerged from the data: time, multiple roles and the disabled family. Conclusion There are many effects of childhood disability on the family. In large part, the effects cannot simply be defined or described in the context of a particular ‘medical’ diagnosis or prognosis. Many elements of impact do not appear to be related to whether or not a child has a life-threatening or life-limiting illness or by whether or not a child is dependent on specific medical devices or ongoing nursing care.
Mind maps: establishing ‘trustworthiness’ in qualitative research
Aim To present the use of mind maps as a way of seeking participant verification of an emerging theoretical framework. Data sources Exploratory interviews, based on three pre-identified study themes – impact, need for help and support, and meaning and/or sense-making -were carried out with the parents of three sub-groups of children with disabilities or complex health needs. These were: children with disabilities, children with life-limiting or life-threatening illnesses, and children dependent on technology. A random sample of participants was subsequently presented with a series of mind maps that represented the themes, categories and sub-categories (and the relationships between them) contained within a rich and complex dataset. Participants were invited to confirm or challenge elements of the mind maps to verify the researcher’s interpretation of their experiences when caring for their children. Discussion Major areas of consistency were identified in the experience of parents of children across the three study sub-groups. Conclusion Mind-maps are already well established as a tool for analysing complex data sets. This study offers a novel approach to the use of mind maps as a means of seeking participant verification of an emerging theoretical framework. Implications for research/practice The use of mind maps when seeking participant verification of qualitative data will require further testing.