Background
This study explores the research question, ‘What are the views and
experiences of children with complex health needs and those of their families
on the provision of healthcare?’
This thesis presents the views of children living in the southwest region of
Scotland who are diagnosed and living with disabilities and complex health
needs, including speech, language and communication needs (SLCN) and
whose voices, and those of their families, are seldom heard in relation to
their healthcare experiences. The four countries of the United Kingdom (UK)
advocate for the implementation of children’s rights through the 54 articles of
the United Nations Convention on the Rights of the Child (UNCRC,1995).
These rights seek to protect and improve the lives of all children, including
those growing up in Scotland, and are enshrined in legislation demonstrated
within the Children Act (1989), and the Children and Young People
(Scotland) Act 2014. This study will focus on Article 2 which is the right to
non-discrimination and Article 12 which is the child’s right to participate, to be
listened to and to be taken seriously. In addition, the study will examine the
importance of Article 19 which states that children must be protected from
harm, and Article 24 which advocates for the provision of safe, effective and
appropriate healthcare for children (UNCRC, 2009).
The Department for Work & Pensions reported that in 2021 there were
approximately 1,100,000 UK children from birth to eighteen years of age who
are living with a substantial and long-term physical or mental health
impairment. Gilljam et al. (2016) indicate that the participation and influence
of children and young people is crucial to the quality of health services.
Serious consequences of patient mortality, morbidity and sub-optimal
healthcare can occur due to failings in leadership, professionalism and
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management (Nursing and Midwifery Council [NMC], 2018), and the duty of
care to protect patients provides a strong motivation to conduct this research.
Compassionate and intelligent leadership within healthcare can transform
patient care and leaders can exert influence over care standards and the
experiences of children and their families (NHS, 2020). There is limited
evidence to date which takes account of children and families’ experiences of
the healthcare services provided for children living with disabilities, complex
health needs and SLCN. Therefore, the opportunity to investigate children’s
and families’ experiences through the lens of policy and legislation in
Scotland by the researcher, who has an extensive clinical nursing and
management background within children’s services, will provide a timely and
warranted research contribution.