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Beresford B, Clarke S, Maddison J. Therapy interventions for children with neurodisabilities: a qualitative scoping study. Southampton (UK): NIHR Journals Library; 2018 Jan. (Health Technology Assessment, No. 22.3.)

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Therapy interventions for children with neurodisabilities: a qualitative scoping study.

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Chapter 4Therapy interventions: approaches and techniques

Introduction

An objective of this study was to describe current approaches and practices in the delivery of therapy interventions to children with non-progressive neurodisabilities. In this chapter, we present findings regarding this that have emerged from our interviews with professionals. We offer a broad view of the current situation placing this, when necessary, in the historical context of the development of physiotherapy, occupational therapy, and speech and language therapy. Parents’ reports of their experiences of therapy – for example the approaches and specific techniques – are presented in Chapter 5.

Understanding therapy interventions

Physiotherapy, occupational therapy and speech and language therapy can be described and understood at three levels:

  • the overall approach a therapist brings to the assessment and management of a case
  • the schools of thought that inform views regarding the appropriate way to manage a case
  • the specific techniques, procedures, activities and equipment used.

There is some interaction, or interdependency, between these levels (Figure 2). Certainly, the two higher levels influence what a therapist actually ‘does’ with a child. Equally, the overall approach will determine, at least to some extent, what are regarded as legitimate or acceptable schools of thought.

FIGURE 2. Therapy intervention constructs and their interconnections.

FIGURE 2

Therapy intervention constructs and their interconnections.

In this chapter, we report what our interviews with professionals reveal about these different ways of conceptualising or understanding therapy interventions. We also report how thinking on these matters is shifting and changing. We do not claim that this is the only way to understand and conceptualise therapy interventions, but is the clearest solution we found to presenting interviewees’ accounts.

The overall approach

Four different, but interconnecting, facets appear to contribute to this concept of the ‘overall approach’:

  1. the objective of the intervention
  2. the role of the therapist
  3. the role of the child and family
  4. the place of the therapy in the life of the child.

The World Health Organization’s International Classification of Functioning, Disability and Health

Before moving on to describe each aspect of ‘overall therapy approach’ in turn, it is useful to offer a brief overview of the WHO’s ICF, published in 2002. This conceptual model was widely referred to in our interviews. It was clear that it not only offers a language and framework by which therapy interventions can be understood, but has also been a catalyst for change in the overall approach of therapies. It is a conceptual model that has been endorsed by all three profession,2022 with guidance issued to support its implementation (e.g. College of Occupational Therapists, 2004; Royal College of Speech and Language Therapists, 2005) as well as being integrated into the training of new therapists.23

In 2002, WHO proposed a conceptual model of disability that sought to bring together elements of the pre-existing medical and social models of disability, and incorporate them into a biopsychosocial model of disability.16 Figure 3 offers a representation of this model.

FIGURE 3. The ICF model of disability and health.

FIGURE 3

The ICF model of disability and health.

The meanings of the terms used in this model are as follows.

  • Body functions: physiological functions of body systems (including psychological functions).
  • Body structures: anatomical parts of the body such as organs, limbs and their components.
  • Impairments: problems in body function or structure such as a significant deviation or loss.
  • Activity: the execution of a task or action by an individual. Activity limitations are difficulties an individual may have in executing activities.
  • Participation: involvement in a life situation. Participation restrictions are problems an individual may experience in involvement in life situations.
  • Environmental factors: these make up the physical, social and attitudinal environment in which people live and conduct their lives.

p. 10.16 Reprinted from Towards a Common Languages for Functioning, Disability and Health: International Classification Framework. World Health Organization, © 2002. URL: www.who.int/classifications/icf/icfbeginnersguide.pdf (last accessed 21 December 2017)

Overall approach: the objective of the intervention

In describing the overall objectives of a therapy intervention, interviewees framed this in terms of the ICF model. Three possibilities were described.

  1. First, the ‘deficit model’: here remedying physical/body dysfunction and distortion is seen as the end point, or objective, of therapy interventions or, as one interviewee described it, ‘fixing the child’ (OT-PB-01). This model can be regarded as the original starting point of all three professions.
  2. The second approach focuses on the achievement of specific activities, or occupations, that the child’s physical impairments have limited or rendered difficult, for example walking or articulating verbal speech. When interviewees offered a chronology of the emergence of these different models, this approach was described as emerging in the 1990s.
  3. The third approach is child/family focused, goals focused, in which the objectives of therapy are driven and guided by the child’s/family’s goals and desires. These goals should be expressed in terms of the child’s participation in everyday life, or life situations, that is relevant and meaningful for a child of that age (e.g. learning, self-care, communicating, moving about, friendships and being part of a family), rather than outcomes related to body structure/function or achievement of specific skills or activities. Within this approach, addressing dysfunction or impairment is no longer the key focus. This opens up alternative ways of intervening which may be as, or more, successful. One example is achieving independent mobility through the use of a wheelchair rather than through a lengthy and intensive physiotherapy programme. Another example is teaching a child to use augmentative and alternative communication systems and devices to communicate, or supplement verbal communication, rather than simply seeking to achieve verbal communication through speech and language therapy input:

The really complex ones, you can do as much therapy as you like, and it probably won’t make much difference – so let’s focus on the environment and the equipment and stuff . . .

A1

A slightly different, or concurrent, conceptualisation emerged from interviews with occupational therapists. It had a more dichotomous stance: a ‘deficit-focused’ model versus a focus on achieving occupation, or participation, through modifications to the environment and/or providing equipment to facilitate the child’s engagement or participation.

The operationalisation of these approaches

A number of issues emerged during our discussions with interviewees regarding these three possible approaches to understanding the objectives of a therapy intervention.

First, there was clear evidence that all the approaches are being used by therapists. Furthermore, not all interviewees believed that the different approaches were incompatible. Thus, some viewed them as being necessarily connected, with achievements of particular skills or reducing pain, for example enabling higher-level outcomes (expressed in the goals identified by children or parents) to be achieved, even if not explicitly identified at the outset of the intervention:

[Let me give you this example] . . . A 7-year-old boy, with quite a severe impairment, was delighted that his newly acquired ‘pick-up and release skills’ meant he could now take a tissue out of a box and wipe his nose himself. He is now independently participating in his own personal care, and this gave him better self-esteem in the classroom.

K1

Start with the child or impairment, working on the body structure and functions as a means to an end to achieving the desired occupation. Start with the occupation, looking both at the child and the environment to see what can be done to achieve the occupation. Both approaches are still occupational therapy. Yet the same situation can be looked at in different ways, involving different interventions, and with different people. That can be confusing and challenging . . . and it’s a sensitive topic within the profession. Some favour one, some the other, and others use a bit of both.

N1

Second, a goals-focused approach was widely endorsed and, reportedly, operationalised. However, the implementation of participation-oriented, goals-focused approaches within the therapies was viewed by some as ‘under development’ as opposed to already achieved:

. . . in my service you can see a three-generation approach. The first generation used to do ‘body function/structure stuff’ working on things like fine motor skills, co-ordination, range of movement and postural stability. Then, about 12 years ago, with the second generation, it became much more about targeting an activity and participation. However, in reality it was more about targeting activity and the child’s skills than true participation. Now a third-generation model is needed, where [we] really target participation. [So my question is] . . . ‘What’s our third-generation approach going to be so that it actually targets participation head-on through the right hypothesis-change mechanism?’.

L1

There’s been a bit of a shift in terms of whether body structure and function is meaningful in its own right, or whether it’s an intervention which enables children to participate in something. We’ve started on that shift, but we aren’t all the way.

F1

This was also evidenced in some of our interviews when interviewees described goals that ranged across all of the ICF concepts. Thus, a goals-focused approach was being operationalised, but not necessarily within a framework of participation.

Third, it was not clear whether the shift to goals-focused approaches was simply a matter of the influence of new ‘ways of thinking’ informed by both ICF and family-centred practice,24 or whether stringent cuts in funding had forced therapists and services into a position where intense work on body structure and function was no longer possible.

Fourth, there appeared to be a degree of confusion about the differences between the ICF concepts of ‘activities’ and ‘participation’, and the definitions offered for both varied considerably. Participation, as set out in the WHO report, was viewed by some as challenging in terms of its definition and measurement, in terms of both appropriate time points and the indicators of participation used. This is something we discuss in detail in Chapter 7.

Finally, new ways of working, intervention programmes and practices have emerged or been developed in response to this shift in approach from deficit to activities or goals-focused approaches. Examples of these referred to by study participants included, for physiotherapy, the MOVE programme (www.move-international.org/) and for occupational therapy, goals-directed training.25

Overall approach: the role of therapist

There was a consistent view that, over recent years, the role of therapists in the delivery of interventions to children with neurodisability has shifted. A number of interviewees – and across all therapies – referred to a ‘consultative model’ whereby the therapist assesses the child, develops an intervention programme and then trains, or ‘upskills’, others (assistant practitioners, parents, child, classroom assistant and/or teacher) to deliver it, with supervision and ongoing monitoring. This approach was regarded as more prevalent within community, rather than secondary care or acute, settings.

Two drivers for this change were presented by interviewees. First, many interviewees noted the reduction in funding for therapies for children with neurodisability, which had forced changes in the way therapists worked. The way NHS trusts have chosen to address resource constraints has, however, differed. In some trusts, specialty posts have been maintained – albeit operating in a consultative role – whereas in others, posts have been lost and/or downgraded. A second driver – attributed to the number of ‘influential leaders’ in the field – was the acknowledgement that, to be effective, therapy interventions cannot be restricted to what are relatively occasional sessions with a qualified therapist in a clinic setting:

. . . it’s an intelligent way of capacity building. Also, in schools it’s the staff who know the children better than the therapist does. The therapist will come in one or two times a term so it would be ludicrous to expect a change with that amount of contact.

R2

There was a diversity of opinion as to whether or not this change is for the better. The dominant concern was that non-therapists may not be sufficiently skilled or competent to respond to changes in functioning or to evaluate the impact of the interventions and adjust the intervention accordingly:

There is something about the skill of the therapist in working with any one child with particularly complex needs, to be able to tune in to how the child is responding to what you are doing with them. . . . To make the kind of adjustment that you need to do to make the therapy work there and then, and to know whether you can push onto something more complex . . .

O2

. . . I think intervention effectiveness is actually being diluted . . . by having less skilled staff. I can understand why they are doing it, but I think it’s short-sighted.

Z1

A second concern was adherence to intervention programmes. This was typically spoken about in terms of the multiple demands on people’s time and/or a lack of understanding of the intervention programme and its objectives. Finally, this represented a very significant change in the day-to-day work of therapists that may be difficult to accept and assimilate:

Within practice there is a reluctance to change that [move to less hands-on and more activity-based therapy], particularly among those who have been trained in manual handling of patients and how to support and help them move.

F2

Furthermore, it was noted that parents may struggle to accept the consultative approach. Many interviewees believed that seeking the input of private practitioners was often due to a desire for more intense input from a qualified therapist.

Overall approach: the role of the child and family

The goals-focused approach described earlier was often spoken about alongside descriptions of a change in the way children, and their families, are regarded within the context of a therapy intervention. The shift in thinking described was from regarding the child/family as passive recipients to viewing them as active participants in the therapy intervention. Some interviewees referred to this is a move from the ‘expert practitioner’ model to the ‘expert parent’ model:

We are looking for children and families to be active in the rehabilitation process. So, instead of a child coming into hospital and having all this therapy done to them, they are a real active participant in what they are doing and they’re actively involved in their rehabilitation process.

L2

Occasionally, this shift was located, or attributed, within a wider change in the NHS to a focus on self-management. This was perceived to be driven by both an outcomes-focused approach and constrained resources.

Again, there was a sense that this study was being conducted at a time when thinking within each of the professions on such matters was in a state of change. Thus, we had interviewees who firmly advocated opposing approaches. Equally, there were interviewees who described the approach they were working towards, but had not yet attained:

I want us to get to the situation where we are working with families, giving them the right information – and doing that well and early enough – so that they can be empowered to . . . make decisions.

A1

Therapists have always worked very closely with parents, and older children too, in terms of goal-setting and goal preferences. The idea of offering people informed choice is not there . . . at the moment.

P2

With respect to the move to place children and families more centrally in decision-making and ‘condition management’ processes, a number of interviewees referred to ‘health-coaching’ models or programmes which were informing or influencing changes in their ways of working.

Overall approach: integrating therapy into everyday life

The final interconnecting strand within the concept of ‘therapy approaches’ is integrating therapy interventions into everyday life. Again, interviewees spoke of a shift in thinking: taking therapy out of clinic settings, and delivering in the settings and environments where the child spends his or her time. Linked to this were notions of integrating the therapy procedures into everyday activities and aiming to design the intervention to maximise engagement and motivation:

I say to families that it’s no good just doing things for a short time, so it’s better to incorporate activities into everyday life, or position their child so they can do something else as well. That way activities get embedded and done more often, and so more likely to make a difference.

F1

Once more, the extent to which this approach was dominant in an individual therapist’s practice was dependent on the extent to which their practice reflective goals-focused, participative approaches.

A number of constraints to adopting such an approach – particularly around the settings in which therapists practised – was noted, particularly when, in the past, therapy was delivered in outpatient clinic settings. Here, commissioners could be reluctant to resource therapists working in the child’s everyday settings.

Schools of thought

One of the topic areas NIHR wanted this study to investigate and report on was current ‘schools of thought’ within physiotherapy, occupational therapy, and speech and language therapy. This has proved difficult to elucidate.

However, it is possible to present three sets of ‘schools of thought’ revealed in our interviews with study participants:

  1. ‘traditional’ schools of thought
  2. emerging schools of thought
  3. early intervention.

We have conceived schools of thought as distinct from ‘overall approach’ that we reported in the previous section.

Traditional schools of thought

Different schools of thought advocate, or stipulate, different techniques or procedures to use with a child. Alternatively, they may posit different views on the mechanisms of change underlying technique or procedure. This notion of distinct schools of thought appears to be very similar to that observed in other specialisms. (For example, psychological interventions typically sit under different schools of thought, such as psychodynamic, gestalt and cognitive–behavioural.)

Although the notion of different specific schools of thought was referred to by interviewees across all three professions, it emerged most strongly in our interviews with physiotherapists. This was both in terms of the way they may act to firmly ground (or constrain) an individual therapist’s approach or, more typically, as an area of controversy or concern. In both respects, neurodevelopmental approaches (e.g. the Bobath approach), sensory integration theory and conductive education were the most frequently mentioned. Bobath and sensory integration theory also emerged as divisive schools of thought in our interviews with occupational therapists. A concern about, or active rejection of, these schools of thought was explained in terms of their basis being located within a ‘deficit model’ of intervention, and/or existing evidence on their impact/effectiveness.

As is a common theme through many of our data, there was a sense that these distinct, traditional schools of thought were, and would continue to become, less dominant. One of the key drivers for this appears to be the ongoing, higher-level reconstructions of what therapy is and what its objectives should be, which we described in the previous section.

Emerging schools of thought

The shifts in overall approach described earlier – from a deficit model to activity-based and now goals-focused/participation ways of working – appear, however, to have led to the emergence of new schools of thought within the professions. Of those described to us during the study, these typically drawing on principles or approaches developed within other specialisms. For example, cognitive–behavioural, problem-solving approaches, sometimes referred to as ‘coaching’, were reported as being used within occupational therapy. Global notions of ‘goals-focused approach’, family-centred practice and ‘evidence-based practice’ were referred to across all therapies as ‘schools of thought’ that the professions were adopting.

Early intervention

The final school of thought, applicable across all therapies, was the notion that early intervention is essential, and this should be the time when the intensity of the intervention is at its greatest. The rationale for early intervention is that it is likely to yield greater impact: supporting development and preventing permanent damage and/or deterioration. This argument is based on notions of neuroplasticity, physical and cognitive development.

Thus, it was also typically reported that the intensity of therapy interventions decreases as the child grows older (or in terms of time since brain injury). However, what was less clear was the rationale for tailing off therapy; indeed, it was a source of concern among some interviewees. Often this was expressed with respect to physical changes associated with puberty or to a child’s ongoing cognitive or communication development, and the implications this may have for the child’s needs for therapy input:

Younger children get more research and more therapy. Therapy is front-loaded so families get most at the preschool stage, some in primary school, rarely any in secondary school and none as adults.

N2

Techniques, procedures and equipment used by the different therapies

The purpose of this scoping study was not to provide an account of the enormous range of techniques, procedures and equipment currently being used by therapists in England. A different methodology would be required to generate such data. (We have, however, collated a list of all the techniques, procedures and equipment described to us by study participants. This can be found in Appendix 6.)

Rather, what this study has achieved is an overview of the practice of physiotherapy, occupational therapy and speech and language therapy. We describe this in terms of a number of concepts:

  • professional autonomy
  • responsive practice
  • managing prognostic uncertainty
  • the role of protocols and care pathways
  • working out of a tool box
  • mode of delivery.

Professional autonomy

A first overarching principle of practice within therapies is the concept of professional autonomy. In many interviews, therapists were presented as working in an autonomous, individualistic way within their scope of practice (or qualification):

Assessment and hands-on work is probably more individualised, but we all sign up from the same baseline.

F1

. . . certain institutions or individuals will have a favoured approach but ultimately it’s individual choice. Each physiotherapist is an autonomous practitioner . . .

M2

This autonomy operated both in the choice of interventions and in the intensity, or dose, of the interventions. Despite this notion of autonomy, some interviewees noted that, within the NHS, practice has become more standardised over the past decade, driven by emerging evidence and the shift in overall approach to providing these therapies. The publication of protocols and the implementation of care pathways – both described below – also contributed to a standardisation of practice.

Responsive practice

The ability to make an ongoing assessment, even within the context of specific session, of the way a child is responding to an intervention and/or their ability or motivation to engage with an activity or procedure (sometimes on a moment-by-moment basis) was regarded as a core therapy skill. Responding to the child, and their response to an intervention, meant that therapists may be continually tailoring either their work with a child or the overall management of the case:

At the beginning of a session I may not have a definitive goal in mind, but will have an idea of what I’m hoping to achieve and structure the session accordingly. Over time, I may adapt and change the goals in order to make progress. So it’s a very fluid process and we need to be responsive and adaptive to get the best out of the child.

M2

Managing prognostic uncertainty

With more complex cases, the issue of prognostic uncertainty and a lack of evidence of intervention effectiveness could lead therapists to trial a number of interventions, sometimes simultaneously, to establish a child’s potential capabilities and/or which technique suited the child best:

Parents with children with cerebral palsy always ask ‘[When] is my child going to talk, is spoken language going to be possible for them?’ And we can never answer that question because each child is so different. So it may be we set off on an eclectic approach, [thinking] . . . ‘let’s do some work on vocalisation or signing or symbols as well . . .

V2

The role of protocols and care pathways

Participants used the term ‘protocol’ in two distinct ways. First, it was used to refer to the way in which a team or service managed a referral to their service. Here, both the terms ‘protocol’ and ‘care pathway’ were used. Thus, some study participants described the development, and early implementation, of a number of care pathways within their service, each specific to a particular presenting need or diagnosis. Typically, these were multidisciplinary, or integrated, pathways specifying who and when different professional groups should become involved with a child, and for how long.

Second, and more specifically, some techniques or presenting clinical needs were identified as having clear protocols in terms of assessment and/or management. For example, frequent references were made to NICE guidance on the management of spasticity. Interviewees drew attention to the fact that for many children with neurodisability, especially those with complex needs, there will be individualistic practice happening alongside protocol-informed practice(s).

Issues were raised of adherence to protocols, particularly when others were delivering the treatment, and the potential difficulties of implementing a protocol in an appropriate way for a particular child:

Protocols are anyway problematic because children vary and delivery is not always under their control. Children are at different ages and different stages and living in different families. . . . [And] to have protocols – good, evaluated ones – is one thing, but to implement them in families’ everyday life is another.

M1

However, a much greater proportion of therapists’ work was reported as lacking any protocols. As a result, there could be great variation in the way in which a case was managed:

[There is] . . . huge variation in the interventions they receive. Not only in what they receive but in how often and from whom they receive it.

N2

It’s been quite easy to write a pathway [protocol] for children with, say, hemiplegia receiving CMIT [constraint-induced movement therapy], or for those having Botox [botulinum toxin] injections as there’s quite a lot of evidence or guidance to draw on. Whereas all the others just get based on your clinical experience of managing other children . . . and what you see in the child.

C1

Working out of a toolbox

Within the notion of professional autonomy described above, many interviewees described themselves as working out of a ‘toolbox’:

What you tend to find in practice is that most practitioners use an eclectic approach. It’s a little bit of this and a little bit of that. . . . it’s a little bit of what you’ve got in your toolbox.

K2

We have a great big menu of interventions to choose from.

P2

It’s about having that huge toolbox and choosing the right thing for the child, on the day almost.

W2

Thus, in each case, a therapist brings a range of techniques, procedures, activities or items of equipment. There follows, through assessment of the child and the wider context, a process of clinical decision-making as to what particular ‘tools’ to choose, something that we report on in the following section.

Our analysis suggests that a number of factors influence the content of an individual therapist’s toolbox:

  • the ‘overall therapy approach’ to which the individual therapist adheres
  • their position, or beliefs, regarding schools of thought
  • their training
  • practices they have learnt from colleagues
  • trends or ‘fads’
  • team/clinical lead views
  • the techniques, etc., that commissioners will fund
  • clinical guidance (e.g. from NICE) or guidance or recommendations from professional bodies
  • evidence.

There is a lot of individualistic work going on. We have very experienced therapists with strong beliefs based on their own clinical experience, which can be very powerful.

P1

The notion of ‘embedded’ or ‘inherited practice’ was frequently mentioned. This was much more likely to be grounded in clinical consensus rather than in any evidence base:

There is a good level of consensus of opinion in what’s best in treatments and approaches to treatment which is cascaded down to therapists. . . . the team generates practice which then perpetuates down.

I2

There is an awful lot of tacit knowledge that’s handed down through the profession . . . certain techniques, [and] ‘that is how you do it, [and] this is the right way to do it . . .’

F2

Embedded practice was also seen as a barrier to change in therapy approaches or to evidence suggesting that an intervention may not be effective:

. . . but a lot of therapists have done this [refers to a particular technique] for 30 years. [And] they can’t stop doing it if you don’t put anything in its place.

F2

Trends or ‘fads’ in terms of particular techniques, procedures, activities or equipment were frequently mentioned by interviewees. Some were enthusiastic in their descriptions of, for example, a new technique that they or their team had started to use. Others were greatly concerned about the lack of an evidence-based rationale for adopting new techniques, equipment or practices. Furthermore, the commercial interests of manufacturers, or organisations, in promoting new techniques or equipment worried some interviewees. A further concern was that the successful use of a technique with a small number of children, or with respect to children of a particular developmental stage or diagnosis, could lead to wide-scale roll-out within a locality (or more broadly), which may not be appropriate:

There’s a massive growth in [name of technology] at the moment . . . and that’s very liberating for lots of young people . . . but it’s often being rolled out to children who are not ready yet . . . families and teams are spending an awful lot of money on technology that’s not being used effectively, and ultimately gets abandoned.

O2

That said, there was an understanding of why therapists can be drawn to new (untested) practices and equipment. These are often presented, or marketed, with an anatomical or neuromuscular ‘rationale’ and some persuasive case studies. Furthermore, new techniques or practices may offer therapists a structure and process to their work. For example, a manual, an assessment pro forma and guidance on intervention intensity may be offered. Some interviewees believed that this could be very appealing to practitioners who were trained to be autonomous and work in a very individualistic way, but within a discipline where there is little sound evidence on which to base clinical decision-making:

You can book to go on your [name of course] or your [name of other course], and then you have your kit . . . [and then] . . . you know what you’re meant to be doing.

S1

You’re taught in a staged way. It’s a clear, almost manualised, road map of what to do. It’s a qualification ‘in something’. It fills a gap.

P1

Finally, the role of evidence in informing the content of a therapist’s ‘toolbox’ was typically regarded as very limited. However, included in our study sample were settings where sustained attempts were being made to use evidence, when possible, to specify intervention approaches. In these situations, evidence was (often) being drawn across from adult rehabilitation and/or other diagnostic groups.

Mode of delivery

A less common topic referred to in relation to therapy practice was mode of delivery. It appeared that, in the majority of interviews, study participants assumed that the research team already knew that they were referring to individually delivered interventions. However, a few interviewees reported using group-delivered interventions, and this typically appeared to be in relation to the management or treatment of non-complex issues.

Factors affecting decision-making in the management of a case

One of the objectives of this study was to describe the factors that therapists reported as influencing their decision-making regarding the ‘therapeutic prescription’. We explored this in our individual interviews and focus groups with physiotherapists, occupational therapists and speech and language therapists.

The focus groups provided a useful opportunity to explore frontline practitioners’ views of the relative importance of factors brought to play in clinical decision-making in the management of a case. This exercise was conducted during six focus groups, with a total of 14 groups or subgroups completing this exercise. Participants were asked to rank the following factors:

  • child’s and family’s characteristics and resources
  • child’s presenting clinical/functioning needs
  • clinical experiences managing similar children
  • professional training
  • research evidence on intervention effectiveness
  • time and/or resources available to the therapist.

Table 12 sets out the results of that ranking exercise.

TABLE 12

TABLE 12

The relative influence of factors in clinical decision-making in the management of a case: therapists’ views (n = 14)

Not unexpectedly, the dominant factor in decision-making was the therapist’s assessment of the child’s presenting clinical/functional needs, and it is important to note here that some groups explicitly stated that they had assumed this to also refer to the child’s, or parents’, goals. Only 3 of the 11 groups identified a different factor as the most important in informing clinical decision-making. In all cases, this factor was their professional training. A number of groups noted that the nature of other health interventions a child is receiving (e.g. other therapies, or medical/surgical interventions) may influence clinical decision-making and, in some cases, play a dominant role.

Clinical experience typically featured as a strong, but not the most important, influence on clinical decision-making. Here, many groups reported that they drew on not only their own clinical experience, but also that of colleagues. Discussing cases was an inherent part of their practice, and thus turning to others for input and advice was important and, possibly, more valuable or relevant than research evidence.

Views regarding the strength of influence of family characteristics and resources varied between therapists working in different settings. Those based in community teams viewed this as having a greater influence on decision-making than did those based in residential or school settings. Furthermore, the extent to which this factor was relevant to decision-making varied between families. Here, the key issue was the family’s capacity to take on a programme of therapy:

We know that some families will be able to take on therapy programmes and carry out a significant amount, but for others we know that we can’t possibly ask them to take this on as it would put an unbearable load on them and create an additional stress.

G1

A further aspect of the role, or influence, of the family on clinical decision-making was revealed in our discussions with therapists. This concerned the pressure that therapists can feel parents place on them to ‘do something’ or try a particular approach.

A few interviewees developed this further, noting that a therapists’ implicit desire to help a child may influence their clinical decision-making:

. . . our own internal drivers to offer something positive into what can be quite catastrophic situations . . .

G2

Therapists typically stated that resource issues should not influence their clinical decision-making. However, it was acknowledged that local directives can restrict the options open to a therapist. This can be at the team level; for example, clinical leads may adhere to particular approaches and practices. It may also operate at a trust level, with clinical decision-making affected by directives about whether specific procedures will be funded, the intensity of input (e.g. the frequency, number and duration of sessions) and/or the settings in which a therapist is permitted to work (e.g. clinic vs. home- or community-based work).

Research evidence was typically identified as having the least, if any, influence on clinical decision-making. The most frequent explanation for this was that there was a lack of evidence or that the existing evidence was not applicable to a particular diagnostic group:

Dysathria research does not include participants with learning disabilities, so that rules out most of our kids.

G1

. . . it’s the same thing every time we try to do evidence-based guidelines: there is no evidence for use with children with ABI [acquired brain injury].

D1

Other explanations included scepticism about existing evidence, particularly if such evidence raised questions about a technique or approach that the therapist strongly believed, from their clinical experience, had positive impacts for children. In addition, therapists described coming to the decision that, for a particular child, existing evidence was not relevant or meaningful:

. . . research doesn’t necessarily work for everyone . . . it’s all about assessing it on a case-by-case basis.

G1

A number of therapists referred to the difficulty accessing or ‘keeping up with’ evidence:

. . . there are so many diverse presentations among people we see that it’s hard to know all of the evidence.

C1

Participants often reported looking to outputs from national professional bodies, or NICE, that summarised evidence and considered its implications. We also came across instances of services/teams or professional/clinical excellence networks seeking to collate and synthesise evidence in order to produce internal, or member, guidance:

It translates the evidence for you, and it’s really useful when it’s done like that.

C1

We further discuss views on the perceived state of evidence in Chapter 8.

Copyright © Queen’s Printer and Controller of HMSO 2018. This work was produced by Beresford et al. under the terms of a commissioning contract issued by the Secretary of State for Health. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.
Bookshelf ID: NBK476026

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