Year: 2018
Type: conference-paper
Abstract: Aim A tracheostomy is life-changing and brings many associated new challenges. This study offers an insight into the life of children with tracheostomies and the impact this has on them, their caregiver(s) and the family unit on a daily basis. We explore how they have coped with the transformation in their life and the issues important to them. Little is known to date about such families’ experiences and quality of life once they have been discharged from hospital. Patient experience is being increasingly recognised as an important part of quality of care and as such we have a duty to allow our patients and their families express their views. Methods In July 2015 all children with tracheostomies or who had recently been decannulated, in our Trust were identified. A letter was sent out to the identified eligible nine families in January 2016 inviting them to participate in this project by completing age appropriate questionnaires- Paediatric Quality of Life questionnaire, Strength and Difficulties questionnaire and Hospital Anxiety and Depression score and advising them that a follow up phone call would take place to offer them an opportunity to participate in a semi-structured face to face interview should they opt in to the project and want to participate. Results Of the nine families contacted five agreed to the face to face interviews and six families returned the questionnaires. Interview data were transcribed and evaluated for emerging themes. Interpretative analysis was performed by the lead researcher, and independently analysed by a Clinical Psychologist for quality assurance. Themes were developed from the analysis and agreed upon by both researchers. The main themes identified included adjusting to new roles, inconsistent care, effect on family relationships, present and future worries and coping with difficult decision-making. Conclusion The study helped us gain a deeper understanding of what matters to these families and identify the following opportunities for improving care. Multidisciplinary tracheostomy teams with allocated slot at one stop clinic for psychologist and social work to destigmatise these roles and meet families to ensure they know how to access these professions when required. Opportunity to meet other families as standard.
Authors: J Collins, K Burns, M McGinn
Language: English
Subfield: Pulmonary and Respiratory Medicine
Field: Medicine
Domain: Health Sciences
Open Access status: gold
OpenAlex ID: W2792523675