2.1 Ethical Considerations

The study was registered with the hospital's clinical governance committee as a service improvement project and was approved by the local information governance officer (known in the UK as the Caldicott Guardian). All participating families gave consent for participation. All information gathered was anonymised unless families specifically requested a referral to the psychology service by giving their contact details.

2.2 Participants

The study participants were a convenience sample of outpatient clinic attendees and hospital inpatients seen over 3 months at a tertiary paediatric centre (January–March 2023). The inclusion criterion was any primary caregiver or parent of a child under 18 with a current tracheostomy.

2.3 Data Collection and Analysis

Parents and caregivers were interviewed by one of the study team (MW) who used a short series of questions as a prompt for discussion (see Figure 1). Parents and caregivers were encouraged to give their thoughts freely and discursively. The prompt questions were on their perceptions of the need for psychological support, whether they had received help from PCPS or other psychology services, and how they felt support should be tailored to best support them. Participants were asked to rate any psychological support they received. Participants were invited to provide their name and contact details only if they wished to be referred to the PCPS.

Only a small number of quantitative analyses were performed: the proportion of participants requesting referral to PCPS, the proportion who had already received psychological support and their rating of its usefulness. The majority of study analysis was done qualitatively, based on Grounded Theory. This is a descriptive process where participant responses are grouped into subject areas and themes, and results are usually presented with illustrative quotations. The number of subjects in qualitative studies is usually small (single figures are common) and the idea is to generate ideas rather than test hypotheses and produce p values (Figure 2).

2.4 Guidelines

The SQUIRE guidance for quality improvement projects was used when designing and writing this study.

3.1 Study Participants

Ten children with tracheostomy were identified and families were recruited to the study. All study participants were parents. The children were aged 2 months–4 years (median 13 months) and 5 were boys. The most common indications for a tracheostomy were airway obstruction as part of a congenital syndrome (CHARGE, Stickler, Pierre Robin, Apert) and tracheomalacia. The tracheostomy had been in place for between 1 and 34 months at the time of interview (median 11 months). None of the children had suffered an unusually complicated or difficult recovery after the tracheostomy procedure. In terms of age, sex and indication for tracheostomy, the children were typical of those in our tracheostomy cohort [2], which usually numbers between 50 and 70 patients at any time.

Six of the 10 participants said that they had received a previous referral to PCPS. Of those who received support from PCPS, four participants rated it ‘very helpful’ and two rated it ‘quite helpful’. Of the three who received support from other sources (Children's Hospice Family Support and a psychologist on the neonatal unit), two rated them ‘quite helpful’ and one rated them ‘very helpful’. All 10 participants agreed that a psychologist would be a useful routine addition to their team of clinicians. Seven of the 10 participants requested a referral to PCPS after completing the study.

For the qualitative part of the study, four major themes were identified in the responses. These were ‘freedom to express worries’, ‘continuity of care’, ‘extended period of support’ and ‘family dynamics’.

3.2 Freedom to Express Worries

Parents mentioned how important it is to be able to freely express their thoughts: ‘Helpful to discuss fears and worries’. Parents frequently responded that they would like the ability to ‘speak out and vent’.

3.3 Continuity of Care

Many parents stressed the importance of continuity of care. They wanted to have just one psychologist and felt distressed when having to change to a different one. One participant said, ‘Continuity of support is vital. Having to switch psychologists when leaving NICU was disappointing. Didn't have the energy to go through the journey and explain what had happened again’.

3.4 Extended Period of Support

The importance of support beyond the time of the tracheostomy insertion was stressed by a number of participants. One parent said, ‘It would be helpful to be seen [by PCPS] once again now life with a child with a tracheostomy is established’. With regard to when support from PCPS would be most useful in the family's life, frequent answers were, ‘during the first hospital to home transition’, ‘during the first weeks of home care’, ‘when my child is in hospital’ and ‘when my child is older and in school or college’. One response was, ‘This would be a great standard addition to the team … was offered at the point of tracheostomy surgery but we declined this at the time as too overwhelming for us’.

3.5 Family Dynamics

Some parents expressed how the strength of their relationship with each other, and their other children, influenced their experiences with a tracheostomy. One typical response was, ‘We were lucky to have a strong relationship and support each other through everything. It has had a huge impact on the patient's sister although they are receiving sibling support through [Children's Hospice Family Support] too’. With regard to who the study participants felt would benefit from psychological support, frequent answers included ‘myself’, ‘my family as a whole’ and ‘my child’. One parent said, ‘I personally feel okay with the process of my son having a tracheostomy however may benefit from psychological help in the future for the rest of my family’.