{"id":9363,"date":"2024-09-26T12:32:55","date_gmt":"2024-09-26T10:32:55","guid":{"rendered":"https:\/\/sygeplejevidenskab.dk\/?p=9363"},"modified":"2025-09-02T17:06:04","modified_gmt":"2025-09-02T15:06:04","slug":"children-with-tracheostomy-a-qualitative-exploration-of-parents-experiences-and-needs","status":"publish","type":"post","link":"https:\/\/sygeplejevidenskab.dk\/index.php\/2024\/09\/26\/children-with-tracheostomy-a-qualitative-exploration-of-parents-experiences-and-needs\/","title":{"rendered":"Children with tracheostomy: A qualitative exploration of parent\u2019s experiences and needs"},"content":{"rendered":"

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Tanja \u00d8stergaard Irlind, MPH, clinical nursespecialist RN <\/span>1
\n<\/strong> <\/span>Camilla Grauslund Bredahl, MSc, headnurse, RN <\/span>2
\n<\/span><\/strong>Ingelise Hvidt, MSc, clinical nursespecialist RN <\/span>2
\n<\/span><\/strong>Mona Ring G\u00e4tke, MD, phD <\/span>1
\n<\/span><\/strong>Lone Graff Stensballe, professor, MD, phD <\/span>2<\/span><\/strong>, <\/span>3<\/span><\/strong><\/p>\n

1 <\/span><\/strong>Denmark Department of Respiratory Center East, Copenhagen University Hospital, Denmark
\n<\/span>2 <\/span><\/strong>The Child and Adolescent Clinic, The Danish National University Hospital,
\n<\/span>3<\/span><\/strong> Department of Clinical Medicine, University of Copenhagen<\/span><\/p>\n

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Abstract
\n<\/span><\/strong>Background<\/strong>. <\/span>The number of children aged 0-15 with tracheostomies is increasing, and their treatment processes are complex. Research indicates significant negative consequences for families with a child with a tracheostomy. The purpose of this study was to explore parents’ experiences and needs from the decision about the tracheostomy to life at home.
\n<\/span>Methods<\/strong>. <\/span>Data were collected in Eastern Denmark, where semi-structured interviews were conducted individually or in dyads with 13 parents of seven children with tracheostomies, who are associated with the respiratory center in the Capital Region. A qualitative descriptive method was used, and the empirical data were analyzed using thematic analysis.
\n<\/span>Results<\/strong>. <\/span>Seven themes emerged: 1. The child with a tracheostomy: Prioritizing the child’s needs and well-being. 2. Communication: Lack of information and shared decision-making. 3. The treatment process: Lack of parental involvement in the treatment process. 4. Transitions between units: Lack of coordination and collaboration between units. 5. Navigator: The treatment process requires a navigator. 6. Trained personal caregivers: An intrusion into privacy. 7. The Family: The relationship, siblings, and relatives are under pressure.
\n<\/span>Conclusion. <\/span><\/strong>This study provides valuable insights into parents’ experiences with tracheostomy care for children in Eastern Denmark. Parents of children with tracheostomies seek clear information and involvement. They face challenges throughout the treatment process, as well as after discharge from the hospital. Parents often feel stressed by the trained personal caregiver arrangement and seek more flexibility and support. There is a need for support for family well-being and planning of treatment and care. Further research is necessary to deepen the understanding of this complex treatment environment and to identify effective intervention strategies.
\n<\/span>Clinical relevance. <\/span><\/strong>This study highlights the clinical relevance of understanding parents’ experiences and needs regarding children with a tracheostomy, a subject with significant implications for the entire family. The study identifies areas where guidelines and interventions could be developed to improve nursing care and clinical practice in supporting families with a child who has a tracheostomy.<\/span><\/p>\n

Keywords. <\/span><\/strong>Parents, children, experiences, needs, tracheostomy, pediatric, tPCG<\/span><\/p>\n

Abbreviations
\n<\/span><\/strong>Trained Personal Caregiver<\/span> = tPCG: When a person with a tracheostomy in Denmark cannot manage their own care, or if the patient is a child, they are assigned a team of 6-8 tPCGs. This team is trained and certified by a respiratory center; some caregivers have a healthcare background, such as nursing or social and healthcare assistant, while others come from entirely different fields. While the patient is hospitalized, the tPCG are trained in the specific care tasks they will perform at home after discharge. Their responsibility is limited to respiratory care and treatment, but in certain cases, the municipality can delegate additional tasks, provided they do not interfere with their primary responsibilities.<\/span><\/p>\n

Invasive treatment<\/span><\/strong>: Ventilation treatment with a tracheostomy tube. <\/span>Noninvasive treatment<\/span><\/strong>: Ventilation treatment with a mask.<\/span><\/p>\n

Introduction
\n<\/span><\/strong>The prevalence of tracheostomies in children aged 0-15 years is increasing, as more children with severe neuromuscular disorders, congenital anomalies, prematurity, and malignancies are surviving (1\u20136). The complex and prolonged treatment processes give rise to significant challenges (2\u20134). <\/span>Tracheostomy procedures are typically performed in children with upper airway anomalies, chronic neurological and respiratory disorders, or those who require long-term mechanical ventilation (1,5\u20137). Potential risks associated with tracheostomies include airway obstruction, secretions stagnation, tube displacement, bleeding, and infection, which, in the worst cases, can result in respiratory arrest (5,8). <\/span>International guidelines and practices for the observation, treatment, and care of children with tracheostomies vary significantly. In Denmark, families have access to a team of tPCGs, where tPCGs, employed by private staffing agencies, collaborate with respiratory centers to provide the necessary monitoring and care.<\/span><\/p>\n

Danish legislation establishes clear guidelines that the tPCG must always be within sight and hearing distance (9). However, parents have the option to waive this requirement and assume partial or full responsibility themselves. Parents’ management and experiences in caring for a child with a tracheostomy vary significantly (10). <\/span>In Denmark, the treatment process for children with tracheostomy is initiated at specialized hospitals like Rigshospitalet. However, there is often a lack of a coordinator in these processes, which can lead to uncertainty and vulnerability for the families. Furthermore, studies indicate that families with disabled children are at an increased risk of serious negative consequences such as divorce, job loss, and siblings becoming “shadow children.”(11,12). A tPCG at home, taking care of a child’s tracheostomy changes the family’s life and can be challenging.<\/span><\/p>\n

It is important to align expectations to minimize potential issues in the collaboration between the family and the tPCG. (10,11,13,14). <\/span>From 2015 to 2020, Rigshospitalet treated 15 children and adolescents aged 0-17 years with tracheostomy. The diagnosis and treatment of underlying conditions take place in the pediatric departments, while ventilator treatment, training, and certification of tPCGs are conducted at the hospital’s respiratory treatment center. <\/span>However, there is a lack of qualitative research that explores parents’ long-term experiences with caring for a child with a tracheostomy. (8). A previous study conducted by Flynn et al. in 2013(8) focused exclusively on parents who were solely responsible for the observation and care of their child, without providing insight into the parents’ experiences with the tPCG arrangement that is implemented in Denmark.<\/span><\/p>\n

Aim
\n<\/span><\/strong>This study aimed to explore parents’ experiences and needs throughout the process, from the decision-making regarding a child’s tracheostomy to life at home afterward, within a Danish context where a tPCG arrangement is established.
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\nMethod
\n<\/span><\/strong>Design
\n<\/span><\/strong>In this study, a qualitative descriptive method was used, employing individual or dyadic interviews (15) with parents of children residing in Eastern Denmark who had undergone tracheostomy procedures.
\n<\/span>Ethics
\n<\/span><\/strong>Ethical approval was obtained from the department management, and the study adhered to the principles outlined in the Declaration of Helsinki (16). Data is stored on a secure closed server. All participants were made anonymous during transcription and given a number for the child and a M for mother or F for father.Before participation, all participants provided written informed consent.
\n<\/span>Participants
\n<\/span><\/strong>All parents of the 15 children who had undergone tracheostomy procedures within the previous five years were invited to participate. This five-year timeframe was chosen to reduce potential recall bias. 13 parents, representing seven children with tracheostomy, were recruited for the study (see <\/span>Figure 1<\/span>). One parent was unable to participate on the scheduled interview day and declined to arrange a new date. Two pairs of parents declined to participate: one pair could not fit an interview into their busy schedule, while the other pair did not want to revisit the period by recounting and discussing it. Five families were excluded due to language barriers, and one family was deemed by the research team to be too traumatized to participate (see <\/span>Figure 1<\/span><\/strong>).<\/span><\/p>\n

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I<\/span>nclusion criteria<\/span>:<\/span><\/strong><\/p>\n