Introduction
This study involved a national electronic web-based survey for paediatric intensive care healthcare professionals to understand the context and professional perspectives of delivering early rehabilitation and mobilisation (ERM) within UK PICUs.
Study management
The work package was led by BRS. JYT co-ordinated survey responses and developed the on-line tool. The study management group provided input into survey questions and designs. The study was piloted in Birmingham and Nottingham by JYT, Emily Brush and Francesca Ryde. Statistical analysis of the full survey was undertaken by JYT, BRS, JMen, JMan and JMc. Qualitative analysis of the free-text responses was undertaken by JYT.
Aims and objectives
To explore how healthcare professionals describe ERM, identify current ERM practice and understand perceived barriers and facilitators of ERM.
Methods
A web-based survey (administered through www.smartsurvey.co.uk) was developed that included 25 questions that related to the study aims. The survey was piloted with multidisciplinary teams of health professionals (n = 40) at two PICUs to assess acceptability and comprehensiveness. Minor changes to improve question clarity were made. Pilot responses were excluded from main survey analysis.
The University of Birmingham granted institutional ethical approval on 5 February 2019 (reference ERN_18-1134). Consent was implied through survey completion.
The survey was administered using a chain-referral method. A UK Paediatric Critical Care Society Study Group (PCCS-SG) member from each UK PICU (n = 29) was contacted via e-mail and requested to identify and cascade an invitation e-mail to members of their local MDT (including at least one physiotherapist, doctor and nurse). Participating PICUs were sent a survey link between May and August 2019 to distribute. Three follow-up reminders were sent at weekly intervals to PICUs that had not responded.
Statistical analysis was performed using R version x64 3.5.1 (R Foundation for Statistical Computing, Vienna, Austria). Data were analysed using descriptive statistics, with categorical responses expressed as numbers (percentage), with Likert scales (median IQR) used to express the frequency of practice or level of agreement. Ranking of perceived ERM benefits was calculated using the sum of ranked scores of respondents’ top five important benefits (five points for first, reducing to one point for fifth placed).
Free-text data from the open-ended responses were analysed using a qualitative content analysis approach.58 Two researchers independently familiarised themselves with the data and conducted open-coding, utilising NVivo™ (QSR International, Warrington, UK) software for data management. Codes were then discussed, summarised and organised.59,60 Anonymised, free-text quotes from respondents are used in the reporting of this analysis to add context and clarity.61
Results
Demographics
We received responses from PCCS-SG link members in 26/29 (90%) UK PICUs. A total of 191 health-care professionals opened the survey link with 124 (65%) submitting responses, with a median of 4.5 participants (IQR 3–6) per PICU.
Most respondents were nurses (n = 34, 27%), physiotherapists (n = 28, 23%) and doctors (n = 22, 18%) (see Appendix 3, Table 36). Respondents also included occupational therapists (OT) (n = 19, 15%), play therapists (n = 7, 6%), psychologists (n = 7, 6%), dieticians (n = 6, 5%) and SLTs (n = 1, 1%). Almost three-quarters of health professionals had ≥5 years’ experience, with 48 (39%) ≥15 years.
Description of early rehabilitation and mobilisation
We invited participants to describe ERM in their own terms, with 104 (84%) responding. Participant definitions of ERM aligned to four categories, ‘Activity-focused’, ‘Tailored’, ‘Promote recovery’ and ‘Timing of ERM’ (Table 1). Overall ERM was an individualised package of graded interventions, based on an activity-focused programme, to reduce the sequelae of critical illness or injury. However, responses differed for when ERM should be initiated, often emphasising the need for individualisation.
| Category | Subcategories | Examples |
|---|---|---|
| Activity-focusedERM is activity-focused, with consideration of seating and equipment, primarily delivered by nursing and allied healthcare professionals with optimised sedation management to promote patient engagement. There is a lack of consensus on what is routine care compared with purposeful ERM activity | Activity – mobilising, positioning, stretching | ‘ERM provided includes – passive movements of limbs, periodic change of position, use of splints on extremities and if stable in the long-term patients – sitting up in tumble form chair and mobilising out of bed.’ (Doctor, 67)‘We aim to get the children sitting upright, either over the edge of the bed or in appropriate seating as soon as possible.’ (OT, 001)‘Nursing staff are taught the importance of regular position changes for patient … and positioning to maintain ranges of movement and prevent foot drop.’ (Nurse, 017) |
| Core healthcare professional involvement – physiotherapist, nurse, OT | ‘We try and mobilise patients as soon as able when not invasively ventilated – physio led.’ (Doctor, 058)‘As physiotherapists, we work with the OT and nursing staff to either re-position, sit up in bed, sit on the edge of the bed or stand whilst on the ventilators.’ (Physiotherapist, 069) | |
| Additional healthcare professional involvement – psychology, dietician, play therapist, SLTs | ‘Speech and language therapy become involved usually when nursing or medical staff identify a need for referral.’ (Doctor, 003)‘We have a Play Specialist on PICU, who assists with communication tools/toys.’ (Nurse, 082) | |
| Seating and equipment | ‘Specialist seating need – linking in with OT to ensure appropriate seating available.’ (Physiotherapist, 019)‘We have also in the past asked adult (services) to use their moto-med bike and used this with teenagers, but this can be a challenge as it is very far from PICU and it is often in use.’ (Physiotherapist, 014) | |
| Sedation management | ‘Working with the medics to wean sedation as quickly as possible. This promotes faster ability to mobilise and progress in their rehabilitation.’ (Nurse, 034) | |
| ‘Routine care’ vs. ‘purposeful ERM package’ | ‘Some centres define ERM as passive range of movement, repositioning or providing splints. We would deem this as essential core cares rather than ERM; the large majority of our patients will have positioning and movement plan from day 1 of admission.’ (Physiotherapist, 111) | |
| TailoredFollowing the assessment of needs and patient and family preference, ERM activities are personalised to the individual patient | Assessment of need | ‘We have a programme where patients are categorised to one of 3 levels. Each level provides nursing and therapy staff with activities aligned to the acuity of the patient.’ (Nurse, 040) |
| Individual preference | ‘Parents will tell us what their child enjoys doing and make suggestions, often provide toys/games from home.’ (Nurse, 076)‘Discuss with parents what patient enjoys doing, watching etc. Discuss options regarding taking patients “out” where possible if long-term patients.’ (Nurse, 015) | |
| Promote recoveryThe purpose of ERM is to normalise the PICU environment, to create an environment that addresses holistic needs, sustains or promotes development and supports recovery from critical illness | Normalising PICU environment | ‘Provide activities they would use for their enjoyment. This enables them to be more relaxed and less aware of what is going on with/around them.’ (Play specialist, 102)‘Being in PICU can be a frightening experience. Not only is a child/young person away from home, but also away from their usual environment, family and friends. There are unfamiliar sounds, smells, equipment and people. The play specialist can help to make the stay much more enjoyable and children/young people to cope and understand.’ (Play specialist, 055) |
| Sustain/promote child development | ‘Encouraging the patient to regain or further their development in a therapeutic fun manner.’ (Play therapist,102) | |
| Restoration/recovery | ‘Interventions aim to promote physical recovery – movement, and ability to engage in activities and psychological recovery – orientation, speech, ability to play and attend school.’ (Nurse, 021) | |
| Timing of ERMThe optimal timing of ERM initiation is challenging for healthcare professionals to define, although likelihood perceived to increase with increased LOS. Influenced by the perceived stability of patients and the balance of risk to benefit | ‘Early’ poorly defined | ‘I like to think we consider it within 2–3 days we have a better idea of the patients’ PICU journey and how long they are going to stay. The reality is it’s usually longer … usually week 2 of admission if they are still on the unit.’ (Physiotherapist, 090)‘There is no formal plan for who decides if a patient should start ERM and when …. Currently the delivery of ERM is fairly ad hoc, based on what is highlighted from daily handover each morning.’ (Physiotherapist, 083)‘We provide ERM as a structured programme … every patient after 24 hours of admission is considered for ERM.’ (Doctor, 012) |
| Patient stability, risk and benefit | ‘Members of the PICU team with less experience of early rehab can deem ERM “unsafe” which can occasionally act as a barrier.’ (Physiotherapist, 016)‘Usually ERM activity is not considered until patients can physiologically tolerate movement and are stable with observations.’ (Nurse, 008) | |
| ‘Long-stay’ | ‘ERM is often thought about as a patient comes up to extubation or has failed extubation, and we feel that the reason for failure may be because of critical care weakness.’ (Physiotherapist, 031)‘We provide very little ERM on PICU, other than for long-term patients, which is often, in my opinion, delayed.’ (Nurse, 007) |
Most respondents considered ERM to be a priority, either crucial 15 (12%), very important 67 (55%) or important 35 (29%) in the care of PICU patients (see Appendix 3, Table 37).
Availability of established early rehabilitation and mobilisation protocols
Respondents were asked to describe the content of established ERM protocols within their PICU. Only 12 (10%) participants from 5/26 PICUs reported having an established ERM protocol. The most common components of ERM protocols were ‘physical therapy not requiring additional equipment’ (9/12, 75%) and ‘OT interventions’ (8/12, 67%). Only 4/12 (33%) referred to play therapy or SLT, and no ERM protocol specified input from psychologists or psychiatrists.
All participants were asked about the content of non-ERM protocols in their PICU. Only 18/124 (15%) participants reported that guidance for physical or OT activities existed in other, non-ERM protocols that were used in the PICU setting (see Appendix 2, Table 35).
Recipients of early rehabilitation and mobilisation
Despite the paucity of ERM protocols, 51 (41%) respondents reported that all PICU patients ‘always’ or ‘very often’ received ERM (Table 2). ERM was reported to be more likely to be delivered to patients when PICU LOS exceeded 28 days. Patients admitted for 28 days or more were more likely (91, 75%) to ‘always’ or ‘very often’ receive ERM in comparison to only 17 (13%) of those reported to stay fewer than 3 days. Participants reported that patients with acquired brain injury (75, 60%) and severe developmental delay (54, 44%) were ‘always’ or ‘very often’ likely to receive ERM.
| By age group | Always,n, (%) | Very often,n, (%) | Sometimes,n, (%) | Seldom,n, (%) | Never,n, (%) | Don’t know,n, (%) | Not applicable,bn |
|---|---|---|---|---|---|---|---|
| All PICU patients (any age) | 6 (5) | 45 (36) | 48 (39) | 14 (11) | 0 (0) | 11 (9) | 0 |
| >10–18 years old | 18 (15) | 40 (32) | 43 (35) | 8 (6) | 1 (1) | 14 (11) | 0 |
| >4–10 years old | 16 (13) | 42 (34) | 41 (33) | 10 (8) | 1 (1) | 14 (11) | 0 |
| 1–4 years old | 13 (10) | 42 (34) | 39 (31) | 13 (10) | 1 (1) | 16 (13) | 0 |
| Infants and <1 year old | 6 (5) | 47 (38) | 32 (26) | 20 (16) | 3 (2) | 16 (13) | 0 |
| By LOS in PICU | |||||||
| PICU > 28 days | 43 (35) | 48 (39) | 14 (11) | 4 (3) | 0 (0) | 15 (12) | 0 |
| PICU > 7–28 days | 27 (22) | 46 (37) | 26 (21) | 8 (6) | 0 (0) | 17 (14) | 0 |
| PICU 3–7 days | 12 (10) | 32 (26) | 40 (32) | 19 (15) | 5 (4) | 16 (13) | 0 |
| PICU < 3 days | 3 (2) | 14 (11) | 39 (31) | 33 (27) | 17 (14) | 18 (15) | 0 |
| By diagnostic category | |||||||
| Acquired brain injury | 36 (29) | 39 (31) | 16 (13) | 11 (9) | 4 (3) | 18 (15) | 0 |
| Severe developmental delay | 11 (9) | 43 (35) | 39 (31) | 12 (10) | 3 (2) | 16 (13) | 0 |
| Cancer | 11 (9) | 24 (19) | 36 (29) | 14 (11) | 4 (3) | 35 (28) | 0 |
| Pre-existing physical morbidity | 9 (7) | 38 (31) | 44 (35) | 12 (10) | 4 (3) | 17 (14) | 0 |
| Mechanically ventilated | 9 (7) | 38 (31) | 39 (31) | 18 (15) | 5 (4) | 15 (12) | 0 |
| Congenital heart disease | 9 (7) | 24 (19) | 39 (31) | 15 (12) | 6 (5) | 31 (25) | 0 |
| Respiratory illness | 7 (6) | 35 (28) | 39 (31) | 22 (18) | 3 (2) | 18 (15) | 0 |
| Sepsis | 7 (6) | 28 (23) | 44 (35) | 20 (16) | 5 (4) | 20 (16) | 0 |
| Multiorgan failure | 5 (4) | 14 (11) | 32 (26) | 35 (28) | 12 (10) | 26 (21) | 0 |
| Mechanically supported (e.g. extracorporeal life support) | 4 (3) | 8 (6) | 14 (11) | 13 (10) | 47 (38) | 38 (31) | 0 |
| Healthcare professional team members and parent or family member(s) involvement in ERM (when applicableb) | |||||||
| Physiotherapist | 86 (70) | 27 (22) | 4 (3) | 2 (2) | 0 (0) | 4 (3) | 1 |
| Nurse | 54 (44) | 49 (40) | 9 (7) | 5 (4) | 0 (0) | 6 (5) | 1 |
| Parent or family member | 36 (29) | 56 (46) | 19 (15) | 7 (6) | 1 (1) | 4 (3) | 1 |
| OT | 23 (19) | 34 (29) | 29 (24) | 20 (17) | 6 (5) | 7 (6) | 5 |
| Doctor | 22 (18) | 20 (16) | 26 (21) | 30 (24) | 13 (11) | 12 (10) | 1 |
| Play therapist | 12 (10) | 24 (21) | 39 (34) | 26 (23) | 9 (8) | 5 (4) | 9 |
| Dietician | 10 (8) | 20 (17) | 12 (10) | 29 (24) | 37 (31) | 13 (11) | 3 |
| SLT | 4 (3) | 11 (9) | 40 (33) | 35 (29) | 20 (17) | 10 (8) | 4 |
| Psychologist | 3 (3) | 11 (10) | 24 (23) | 32 (30) | 30 (28) | 6 (6) | 18 |
Perceived benefits of early rehabilitation and mobilisation
Participants ranked the 5 most important potential benefits of ERM out of 13 options (Figure 3). The most important outcomes identified were: (1) reduced PICU LOS, (2) improved psychological outcomes for patients after PICU, (3) reduced days of MV, (4) improved participation in activities of daily living and (5) improved patient satisfaction.
FIGURE 3 Perceived benefits of ERM. Ranking of participants’ potential top five perceived benefits of delivering ERM within PICUs. Sum of rank score: ranking of top five (1–5) (first-placed rank scored five points to fifth placed scored one point). Ranked scores of 121/124 (98%) participants. (Figure not reproduced here; see the original article.)
Initiation and delivery of early rehabilitation and mobilisation
The decision for ERM initiation was perceived by respondents to be primarily led by physiotherapists (96, 77%), doctors (92, 74%) and bedside nurses (64, 52%). Parents were felt to initiate ERM by only 24 (19%) of respondents (see Appendix 3, Table 38).
Factors that influenced ERM initiation included patient stability (69, 56%) and LOS, specifically within 3 days of admission (31, 25%). Five (4%) respondents reported they would not consider ERM at all. The influence of perceived clinical stability is demonstrated in respondents’ free-text comments:
We are involved as early as required depending on the child/young person medical stability and their rehabilitation needs.
Usually, ERM activity is not considered until patients can physiologically tolerate movement and are cardio-vascularly stable.
Assessment of patient stability and tolerance of ERM were less well described. Most respondents (98, 79%) provided subjective cues or informal clinical criteria. These included monitoring of vital signs, physiological changes, observation of behavioural changes and documentation of AEs.
Physiotherapists (113, 92%), nurses (103, 84%) and parents or family members (92, 75%) were ‘always’ or ‘very often’ involved in the ongoing delivery of ERM, with less frequent input from other members of the MDTs (see Table 2).
Barriers to early rehabilitation and mobilisation implementation
Figure 4 presents the perceived barriers of ERM. The most significant factors identified as barriers at the institutional levels were insufficient resources/equipment (83, 69%) and inadequate funding (73, 61%). Participants provided examples of resources having to be shared across organisations or having to be specially ordered to deliver ERM to patients.
FIGURE 4 Perceived barriers of ERM. (Figure not reproduced here; see the original article.)
All equipment shared with the whole therapy department at present, therefore dependent on availability.
Most PICUs had access to standard lifting 22/26 (85%) and specialist static seating equipment 25/26 (96%). However, bedside or in-bed cycling machines were only available in 10 (38%) of PICUs (see Appendix 3, Table 39).
A lack of established protocols (69, 57%), ERM champions (68, 57%), space (68, 56%) and robust patient-screening processes (63, 58%) were also issues identified by respondents.
Limited staffing was the most frequently reported barrier to ERM being delivered (101, 79%). Approximately half of the respondents agreed issues such as training, patient safety, lack of decision-making authority and delays in recognition of patients’ ERM needs were barriers to ERM initiation. However, only 25 (21%) identified that the impact of ERM potentially prolonging the working day was a barrier.
At the patient level, the two most frequently reported barriers to delivering ERM were physiological instability (101, 81%) and sedation (91, 73%).
Institutional, patients and provider barriers to ERM
Table 2 shows the percentage of responses for the categories strongly agree, agree, neutral, disagree and strongly disagree. Responses ranked on the cumulative score of percentage ‘strongly agree and agree’.
Summary of findings to inform the PERMIT study
- This national survey of healthcare practitioners (HCPs) from UK PICUs identified the importance of ERM as an intervention which participants believe can improve the physical, psychological and cognitive recovery of critically ill or injured infants and children across all ages.
- Our findings indicate support for ERM, but highlight uncertainty with suitability, variability with the definition of this complex intervention, variation in timing of initiating and which patient groups should receive ERM.
- Key barriers to ERM delivery were identified (e.g. funding and staffing) and potential clinical (e.g. improved psychological outcomes) and economic (e.g. reduced PICU LOS) benefits to patients and PICUs.
- Our results indicate uncertainty and wide variation in time to start ERM (24 hours to over 7 days), increasing agreement for ERM to be considered after longer periods on PICU, and support for the concept of ‘as early as the patient’s clinical condition allows’, which may be much longer.
- The uncertainty of the content of ERM also adds to the challenge for healthcare professionals to appreciate when ERM could be delivered. Understandably, normal bedside nursing care (e.g. functional positioning) may be considered acceptable earlier than more advanced physical therapies requiring multiple staff (e.g. sitting a ventilated child out of bed or in-bed cycling).
- Our survey identified that clinical stability is the most influential patient factor for initiation.
- The reported lack of ERM protocols in most (21/26) UK PICUs reinforces a strong requirement for evidence-based standardised protocols with optimal timing, intensity, frequency and duration of ERM. There is a need for flexible protocols to allow for tailoring rather than prescription.
- ERM was more likely to be delivered to patients admitted for >28 days, among patients with acquired brain injury or severe developmental delay across all age ranges. Most published ERM intervention studies to date have excluded patients <3 years of age.20,15 However, this represents 60% of the UK PICU patient population,62 and this age group was as likely to receive ERM as older children in our study. Future ERM trials should include all PICU age groups to ensure ERM content and efficacy are assessed across all potential patients.
- Our results show that within the UK NHS setting, doctors, physiotherapists and nurses have an equally significant role in the decision to initiate ERM.
- Nurses’ and parent’s roles are also important in both initiation and delivery of ERM. In our study, 91% felt ‘involved’ in delivery of ERM. However, parents were reported to be the least likely group to initiate ERM (19%), although becoming influential in its ongoing delivery.
- The key barriers to ERM practice were (1) at institutional level: insufficient resources, equipment and funding; (2) at provider level: limited staffing, training, protocols and slow recognition of readiness for ERM; and (3) at patient level: physiological instability, risk of ETT dislodgement and amount of sedation.