Table 3

Analytical themes

Analytical themesDescription of themes
Theme 1: parents feel abandonedParents did not always feel emotionally supported beginning from the diagnosis period continuing as they move through the health system. Parents found themselves isolated and fighting for coordination of their child’s care. Parents made suggestions for future services to provide emotional and physical support for parents.
Theme 2: continuity of careParents described both positive and negative experiences relating to continuity of care. Parents experienced three types of continuity: information, management and relationship. Each were categorised into three subthemes.
Subthemes:

  1. Information continuity

  2. Management continuity

  3. Relationship continuity

  1. Referred to parents experiencing positive examples of communication between professionals, patients and themselves. It also pinpoints some poor examples of information sharing among professionals and parents.

  2. Referred to positive examples of when services assisted in coordination and clinical management. It also explored some examples of when parents experienced issues surrounding inappropriate hospital settings such as A&E.

  3. Referred to parents appreciating long-lasting relationships with clinicians and other professionals. In instances of when there was a lack of relationship continuity, for example, unknown to staff, implications were found.

Theme 3: equipment barriersParents found themselves facing barriers when ordering equipment and medication including lengthy waiting times and unsuitable NHS-funded equipment. Assistance from the government mobility service was also not accessible for this population.
Theme 4: charities fill the gapsParents felt as though there was a lack of financial support available, leaving many to rely on charities to provide them with equipment and respite.