Psychological Challenges in Children With Tracheostomies and Their Families—A Qualitative Study

Approximately 1,200 children require a new tracheostomy every year in the United Kingdom [1], and most are in place for more than 2 years, requiring prolonged periods of care at home [2]. The stress and worry associated with tracheostomy care can affect the whole family. Parents often feel an altered sense of their parental role and many suffer poor mental health [3-5].

As far as we are aware, no paediatric airway service in the UK has a dedicated clinical psychologist who sees all families in the service. In our catchment area, psychological support for children and families is available on referral to the Paediatric Clinical Psychology Service (PCPS) but this is done on a case-by-case basis and is not routinely integrated into the airway team. This qualitative study aims to explore parents' thoughts on the psychological support we currently offer at our tertiary paediatric centre by generating and exploring ideas through in-depth discussions with a small number of test subjects.

Parents of children with tracheostomy are well-trained in clinical aspects of care and most rapidly become experts in their child's condition [6]. Some parents consider their child's quality of life to be higher than their own [7] and lower perceived quality of life may have a negative impact on a parent's caregiving abilities. Some parents struggle to participate in their child's tracheostomy care due to feeling overwhelmed [8]. Psychological support can be invaluable in improving the long-term outcomes for both patient and their family. Previous studies have suggested that having a member of staff on hand who is familiar with the family can be invaluable [9]. Psychological support needs change over time, with parents wanting help in the early stages, while children may benefit most when they are older, especially during important times of transition such as starting school [10].

The main value of qualitative research is in identifying areas that are important to patients but which might be surprising to clinicians. Our biggest surprise was the lack of any perceived stigma in accessing psychological services. We expected this to be a major barrier to families accessing care but we were pleasantly surprised to see no sign of reticence on the part of parents in seeking psychological support. On the contrary, 70% actively requested referrals.

Our study is small, but that is often the way with qualitative studies, where in-depth analysis of response themes is more important than large study numbers. Our sample is representative of our tracheostomy cohort overall and the responses were consistent from family to family. The qualitative element of the study allowed us insights into parents' priorities, particularly the importance of long-term continuity in care. The main outcome is the strong demand from parents for integrated psychological support as a routine part of our airway service. Further quantitative work could focus on assessing the benefit of psychological support, and whether it is more beneficial for particular families such as those whose child had a more complicated course, or where the tracheostomy is in place for a longer time.

H.K. designed the work. M.W. acquired and analysed data. M.W./H.K. drafted, revised and approved the manuscript. H.K. acts as guarantor for the integrity of all aspects of the work.

This study has been conducted in line with the ethical considerations outlined by the Caldicott guidelines. All participants gave informed consent and were given the right to withdraw at any time. All data was anonymised.

The authors declare no conflicts of interest.