# Joint Paediatric and Psychiatric Follow-Up for Families following Paediatric Intensive Care Unit Admission: An Exploratory Study

Authors: Julia Gledhill; Amina Tareen; Mehrengise Cooper; Simon Nadel; M. Elena Garralda
Journal: Advances in Critical Care
 (2014)

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## Abstract

Psychopathology in parents and children is increased after Paediatric Intensive Care Unit (PICU) admission; few studies have evaluated interventions to reduce this.Objective. Evaluation of the feasibility of setting up a joint paediatric and psychiatric follow-up clinic for families after PICU discharge. Design. Feasibility study offering joint follow-up with a consultant paediatric intensivist and child and adolescent psychiatrist. Setting. Paediatric outpatient clinic in a university teaching hospital with a PICU. Patients. Children and their families discharged from PICU. Interventions. Outpatient appointment focussing on physical and psychological health;  psychoeducation about emotional and behavioural difficulties  occurring after PICU discharge, advice for parents about supporting their child’s psychological recovery, screening for more severe psychiatric disorders, and provision of a leaflet outlining possible difficulties and management strategies. Measurements. Attendance, content of discussion, psychiatric questionnaires, and family feedback. Main Results. It proved feasible to set up follow-up appointments to address physical and psychological health concerns; 4/12(33%) eligible families attended. Children and mothers who attended all reported child difficulties including sleep disturbance, increased anxiety, and PTSD symptoms in children and parents. Conclusions. Follow-up clinics after PICU discharge are feasible to set up; take-up is poor but families attending report psychopathology which may be addressed through the intervention.


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## Body

## 1. Introduction

There is accumulating evidence of increased risk of psychopathology, particularly but not exclusively posttraumatic stress disorder (PTSD), in children and parents following PICU admission [1–6]. Critical illness impacts on parenting [3, 7] and parental PTSD is associated with poorer psychological recovery in the child [8].Although National Institute for Clinical Excellence (NICE) Guidelines [9] advocate continued monitoring and support of patients and families after intensive care treatment, follow-up is infrequent [10]. Mothers favour follow-up by the PICU team to talk through the admission and believe that this may be psychologically beneficial [11]. However, little work has evaluated the effectiveness of psychological interventions.An American randomised controlled study demonstrated the effectiveness of a combination of psychoeducation for mothers during the child’s admission and parental activities with their children to help them make sense of their experience, in improving maternal functioning and emotional well-being and reducing child adjustment problems/behavioural difficulties a year after discharge [12]. However the findings must be interpreted in the context of over 50% attrition at follow-up and generally small effect sizes. A subsequent British study [10] offered follow-up with a PICU consultant, senior nurse, and/or psychologist two months after discharge; appointments were only taken up by a quarter of families, but there were benefits on rates of depression and posttraumatic stress symptoms in the subgroup of parents with high levels of stress at hospital discharge.


## 2. Aims

This study assesses the feasibility of setting up and evaluating the take-up of a joint paediatric/child psychiatric educational follow-up service for families 6 weeks after PICU discharge. A secondary aim was to obtain feedback from families about utility.Ethical approval was obtained from St Marys Local Research Ethics Committee.


## 3. Method

The study took place at St Mary’s Hospital, London, which, at the time of the study, had a 10-bedded PICU with approximately 500 admissions a year; reasons for admission were broad and included all causes of critical illness in children. After discharge, follow up by the PICU team was not routine.Recruitment took place between January and August 2005 with a further month in January 2006. Families with a child over 8 years discharged from PICU were eligible and were offered a joint hospital outpatient appointment with a senior paediatric intensivist with a paediatric background and child psychiatrist six weeks after discharge. Families speaking insufficient English to complete the study questionnaires and those with underlying neurological disease were excluded.The Intervention Appointment. The child’s physical condition was assessed by the intensivist; families were next given an opportunity to speak to the paediatrician and psychiatrist jointly for half an hour and then continue meeting with the child psychiatrist. The first part of the meeting focused on physical health concerns and clarification of queries about PICU treatment. The meeting with the child psychiatrist included imparting information (psychoeducation) about emotional and behavioural problems that may occur after PICU admission; simple advice about managing psychological symptoms (largely using behavioural interventions and particularly targeting PTSD symptoms, anxiety, and behavioural problems), such as gradually exposing children to anxiety-provoking situations associated with the admission that they may be trying to avoid, parents maintaining firm boundaries with regard to their child’s behavior, and keeping regular routines at home, for example, around bedtime; providing an opportunity to identify more severe psychiatric problems through history and clinical assessment and facilitating appropriate referral to local child and adolescent mental health services (CAMHS) if appropriate; families were given a leaflet about possible psychiatric presentations and management strategies (see Appendix). They were also given contact numbers for the child psychiatrist and paediatrician they saw in case of ongoing concerns.Outcome Measures. Used to assess child and parental psychopathology and consisted of standardized well-validated screening questionnaires including the following: the Strengths and Difficulties Questionnaire (child psychiatric adjustment) [13], The General Health Questionnaire [14] (parental psychiatric disorder), and the Impact of Events Scale [15] (PTSD symptoms in children and parents).Feedback from families regarding the appointment was requested 3 months after discharge using a questionnaire designed for the study with 5-point Likert scales to quantify how useful the family found the meeting and the leaflet.


## 4. Results

Of 14 eligible families 12 were contactable; 4(33%) attended appointments. Four families failed to respond to the invitation, and 4 declined to attend: two because the travel distance to the hospital was too far; one family noted they wanted to return to a normal life; one parent declined saying she had symptoms but was unable to face coming to the appointment.In the 14 families approached, the median age of the child (7 boys, 7 girls) was 11 years (range 8–14), and median length of PICU stay was 3 days (range 1–18). Admission diagnoses were asthma (6), infectious diseases (8), seizures (2), and diagnosis not documented (2). Both parents were invited; only mothers attended. There was no significant difference between the 4 participating and the other 10 families with regard to gender, age, and length of PICU stay. Demographic and illness data for children from the 4 attending families are shown in Table1.Table 1
Child characteristics for the 4 families who attended the follow-up appointment.
Age (years)
Gender
Length of PICU stay (days)
Diagnosis
11
Male
2
Status asthmaticus
11
Female
18
Respiratory failure
12
Female
5
Tuberculosis
13
Male
1
Status asthmaticusOf the 4 families who attended, none had major physical health problems; all reported and discussed psychological difficulty in the child. Three had sleep problems (i.e., difficulty getting to sleep, nightmares, and anxiety about sleeping alone; two children were sleeping in their mother’s bed: one for 6 weeks after discharge and the other still doing so at follow-up). Two children displayed anxiety; separation anxiety(1) and in another anxiety linked with experiencing similar physical symptoms to those that had led to admission. PTSD avoidant symptoms were reported for two children, including not wanting to be reminded of the hospital and becoming upset when this was spoken about; another child refused to attend hospital when physical symptoms developed after discharge. Mixed behavior/oppositional/anxiety symptoms were reported for one child.All attending mothers experienced psychological difficulties, which they discussed. These included anxiety about their child becoming unwell again, manifested as checking on them more frequently than prior to the illness, anxiety if their child was late home from school, and “panic” if the school telephoned for any reason. Two parents also reported intrusive and avoidant PTSD symptoms including flashbacks, avoidance of thoughts and places linked with the admission, avoiding talking or thinking about the admission, and hypervigilance with regard to their child, such as watching them closely when playing outside. Psychiatric questionnaires were only completed by 2 families and were therefore not considered further. One family returned the feedback questionnaire, strongly agreeing that the meeting and advice in the leaflet had been useful and that this type of appointment should be offered to all families.


## 5. Discussion

It is feasible to arrange a joint psychiatric/paediatric outpatient follow-up appointment for families following PICU discharge. This was taken up by one-third of families approached; all families attending reported and discussed psychological sequelae.All attending mothers reported child difficulties including sleep disturbance, increased anxiety, and PTSD symptoms in both children and parents. This is in-keeping with the PICU follow-up intervention by Colville et al. [10] and with studies which have documented high levels of psychiatric symptoms in children and parents following critical illness [1–6]. Parents more stressed at hospital discharge were more likely to attend and benefit from the psychological follow-up [10], suggesting that interventions are addressing an unmet need.These findings may help inform future interventions. To increase accessibility to psychoeducation, written information about possible psychological sequelae after discharge may be preferable, complemented by telephone support and guidance. To address specific psychopathology such as PTSD which is associated with abnormal processing and poor organization of autobiographical memories [16], parental completion of diaries during PICU admission, as reported by adult Intensive Care Units [17], is worth exploring. Finally, special attention could be helpfully focused on identification of families at high risk for mental health sequelae and interventions targeted at this group through facilitating contact with local paediatric/CAMHS services.



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