Understanding factors that influence goal setting in rehabilitation for paediatric acquired brain injury: a qualitative study using the Theoretical Domains Framework
Sarah Knight
A B C D * , Jill Rodda A , Emma Tavender A , Vicki Anderson A B C , Natasha A. Lannin E F and Adam Scheinberg A C D E
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Abstract
While goal setting with children and their families is considered best practice during rehabilitation following acquired brain injury, its successful implementation in an interdisciplinary team is not straightforward. This paper describes the application of a theoretical framework to understand factors influencing goal setting with children and their families in a large interdisciplinary rehabilitation team.
A semi-structured focus group was conducted with rehabilitation clinicians and those with lived experience of paediatric acquired brain injury (ABI). The 90-min focus group was audio-recorded and transcribed verbatim. Data were thematically coded and mapped against the Theoretical Domains Framework (TDF) to understand influencing factors, which were then linked to the Capability, Opportunity, Motivation – Behaviour (COM-B) model.
A total of 11 participants (nine paediatric rehabilitation clinicians, one parent and one young person with lived experience of paediatric ABI) participated in the focus group. Factors influencing collaborative goal setting mapped to the COM-B and six domains of the TDF: Capabilities (Skills, Knowledge, Beliefs about capabilities, and Behavioural regulation), Opportunities (Environmental context and resources), and Motivation (Social/professional role and identity). Results suggest that a multifaceted intervention is needed to enhance rehabilitation clinicians’ and families’ skills and knowledge of goal setting, restructure the goal communication processes, and clarify the roles clinicians play in goal setting within the interdisciplinary team.
The use of the TDF and COM-B enabled a systematic approach to understanding the factors influencing goal setting for children with acquired brain injury in a large interdisciplinary rehabilitation team, and develop a targeted, multifaceted intervention for clinical use. These represent important considerations for the improvement of collaborative goal setting in paediatric rehabilitation services to ensure that best practice approaches to goal setting are implemented effectively in clinical practice.
Keywords: acquired brain injury, behavioural change, children, family-centred care, goal setting, implementation science, integrated knowledge translation, rehabilitation.
Introduction
Acquired brain injury (ABI) is a leading cause of lifelong acquired disability among children (Chevignard et al. 2010). ABI includes any injury to the brain sustained after birth, and common mechanisms in childhood include head trauma, stroke, encephalopathy, and hypoxia. The child may experience long-term changes to their abilities in many areas including cognition, motor function, speech and language, and emotional/behavioural function, which affects participation in the family, school, and community contexts (Forsyth and Waugh 2010; Galvin et al. 2010; Rivara et al. 2011). In Australia, most children with a moderate or severe ABI have access to a specialised child- and family-centred, interdisciplinary rehabilitation program to support them to achieve the best possible outcomes and enhance participation in everyday life (Chevignard et al. 2010). Despite growing research evidence and the publication of clinical practice guidelines to manage rehabilitation for children with ABI (Knight et al. 2019), there remains a gap between what is considered evidence-based, best practice rehabilitation and what happens in everyday clinical care, which leads to unwarranted variation in care (Harrison et al. 2010).
Goal setting is considered a core component of family-centred care, fundamental to both adult and paediatric rehabilitation (Brewer et al. 2014). Its importance is reflected in the inclusion of goal setting in evidence-based, clinical practice guidelines for paediatric ABI rehabilitation internationally (Rivara et al. 2012; National Collaborating Centre for Women's and Children's Health (UK) 2012; Hebert et al. 2016; Knight et al. 2019; Greenham et al. 2020). These guidelines specify that best practice involves clinicians actively collaborating with children and their families to set goals that are meaningful, relevant, and motivating to the individual and their family (Rivara et al. 2012; National Collaborating Centre for Women's and Children's Health (UK) 2012; Hebert et al. 2016; Knight et al. 2019; Greenham et al. 2020). Collaborative goal setting provides a framework for active partnership between the patient, family, and the rehabilitation team to enhance the physical independence and psychological wellbeing of the patient (Siegert and Taylor 2004). While the theoretical underpinnings of goal setting in paediatric rehabilitation are considered robust, its clinical application is less explored (Pritchard-Wiart and Phelan 2018). Recently, clinicians have described the active inclusion of children with ABI and their families in the goal setting process as challenging due to factors relating to the child and their family (e.g. cognitive or communication difficulties), as well as service-related challenges (e.g. time constraints) (Jenkin et al. 2020).
Interventions to improve collaborative goal setting in paediatric rehabilitation are likely to be complex as several components interact with those involved in the goal setting process (i.e. the child, their family, and the members of the rehabilitation team). Theoretical approaches to intervention development that take into account situational contexts in which the intervention will be delivered and received are increasingly being used in healthcare contexts as a systematic and transparent approach when designing complex interventions (Craig et al. 2008; O’Cathain et al. 2019). By using theory to identify factors that influence and affect behaviour, implementation issues can be identified and addressed in the design of an intervention (Atkins et al. 2017). Theoretical approaches to exploring the factors influencing behaviour have recently been applied in adult ABI rehabilitation settings to address evidence-practice gaps (Jolliffe et al. 2019) and to understand the contextual factors relating to goal setting specifically (Prescott et al. 2018), but these are yet to be used in a paediatric ABI rehabilitation setting.
Identification of the factors that influence behaviour by key stakeholders (e.g. health professionals and those with lived experience) is an essential step in designing effective implementation strategies and interventions (Baker et al. 2015). The Theoretical Domains Framework (TDF) has been used across various healthcare settings to guide an in-depth understanding of influencing factors to increase the likelihood of successful implementation of evidence-based practices (Baker et al. 2015; Bosch et al. 2019; Jolliffe et al. 2019). The TDF was developed to explore and identify influences on a health professional’s behaviour in uptake of evidence and best practices (Atkins et al. 2017). The TDF is based on 33 theories of behaviour and comprises 12 key areas of behavioural change (Steinmo et al. 2015). The Capability, Opportunity, Motivation – Behaviour (COM-B) model complements the TDF as a tool for understanding behaviour and supporting the development of appropriate interventions (Michie et al. 2011). The COM-B model proposes that it is the interaction between the individual’s capability (C), opportunity (O), and motivation (M) that can explain why or why not a given behaviour (B) occurs. It integrates 19 behavioural change frameworks into six sources needed for behavioural change, which include social and physical opportunity, automatic and reflective motivation, and psychological and physical capability (Michie et al. 2011). As shown in Table 1, the COM-B domains map onto the TDF domains.
| COM-B | TDF domain | Definition | |
|---|---|---|---|
| Capability | Knowledge | An awareness of the existence of something | |
| Skills | An ability or proficiency acquired through practice | ||
| Beliefs about capabilities | Acceptance of the truth, reality, or validity about outcomes of a behaviour in a given situation | ||
| Behavioural regulation | Anything aimed at managing or changing objectively observed or measured actions | ||
| Memory, attention and decision processes | The ability to retain information, focus selectively on aspects of the environment and choose between two or more alternatives | ||
| Opportunity | Social influences | Those interpersonal processes that can cause individuals to change their thoughts, feelings, or behaviours | |
| Environmental context and resources | Any circumstance of a person’s situation or environment that discourages or encourages the development of skills and abilities, independence, social competence, and adaptive behaviour | ||
| Motivation | Social/professional role and identity | A coherent set of behaviours and displayed personal qualities of an individual in a social or work setting | |
| Optimism | The confidence that things will happen for the best or that desired goals will be attained | ||
| Intentions | A conscious decision to perform a behaviour or a resolve to act in a certain way | ||
| Goals | Mental representations of outcomes or end states that an individual wants to achieve | ||
| Beliefs about consequences | Acceptance of the truth, reality, or validity about an ability, talent, or facility that a person can put to constructive use | ||
| Reinforcement | Increasing the probability of a response by arranging a dependent relationship, or contingency, between the response and a given stimulus | ||
| Emotion | A complex reaction pattern, involving experiential, behavioural, and physiological elements, by which the individual attempts to deal with a personally significant matter or event |
The aims of this research are to use the TDF and the COM-B to understand the factors influencing goal setting with children and their families in a large interdisciplinary rehabilitation team and to guide development of an intervention to improve its uptake.
Materials and methods
Study design
This study is a qualitative study using a focus group format. A project steering committee (involving authors S. K., A. S., N. A. L., V. A., and E. T.), with expertise in implementation science, paediatric ABI research, and rehabilitation medicine, was convened to oversee and guide the implementation development process. A clinical and consumer advisory group was also formed to provide advice throughout the project. Ethical approval was obtained by the Royal Children’s Hospital Melbourne Human Research Ethics Committee (HREC 38061B) – ‘Improving evidence-based rehabilitation for children with acquired brain injury’. The methodology of this study complies with the Consolidated Criteria for Reporting Qualitative Research (COREQ) (Tong et al. 2007). All participants provided written consent prior to participating in the project.
Definition of collaborative goal setting
For the purposes of this project, collaborative goal setting was defined as:
The multidisciplinary team working in active partnership with the child or young person and family in the formulation and agreement of individualised goals across health domains to develop a unified and coordinated approach across disciplines, goal setting and decision making around intervention plans, and the identification of priorities when considering rehabilitation options.
The target behaviours for collaborative goal setting in rehabilitation for children with ABI were specified in detail through consultation with the project steering ommittee and the clinical and consumer advisory group.
Study setting
This study was conducted in the Victorian Paediatric Rehabilitation Service (VPRS) at The Royal Children’s Hospital, Melbourne, Australia, where a large interdisciplinary team of approximately 40 rehabilitation clinicians is based. The VPRS supports children and adolescents with acquired brain conditions who will benefit from developmentally appropriate, time-limited, goal-focused, interdisciplinary rehabilitation. It is the major service providing inpatient and ambulatory rehabilitation for children and adolescents with ABI in the state of Victoria. The interdisciplinary team has shared goal setting and care planning documentation through electronic medical records, weekly team meetings to discuss goal progress for inpatients and outpatients, interdisciplinary outpatient clinics, and interdisciplinary case conferences to discuss complex issues. Goal setting and the administration of the Canadian Occupational Performance Measure (COPM) (Law et al. 2015) are expected to be routinely facilitated by clinicians for all patients attending the VPRS prior to intervention. The COPM is designed to facilitate collaborative identification of problem areas in patients’ functioning and focuses on the importance of identified problem areas for the patient and family. It facilitates goal setting by identifying areas of need that are important to the patient and family. It is an expectation that goals are frequently reviewed, and that the COPM is re-scored at intervention completion. The ‘F-words in child disability’ tool (Rosenbaum and Gorter 2012) has also been introduced to the VPRS team as an aid to facilitating active child and family involvement in goal setting.
Participants
As goal setting in paediatric rehabilitation typically involves the whole interdisciplinary team who have different perspectives, training, and experiences of goal setting, representation of each clinical disciplines involved in goal setting, as well as people with lived experience of childhood ABI and their families, were invited to participate. An expression of interest process was used with clinicians from the VPRS invited to express interest in participating in the focus group. Purposive sampling was used to recruit clinician participants to ensure representation from across disciplines and years of experience. For parents and young people with lived experience of ABI, participants were recruited through the known networks of the project team via an email to individuals or to the relevant organisations. No inducements were offered for participants. Participants provided written informed consent prior to the focus group.
The focus group included 11 participants (10 female): nine rehabilitation clinicians (paediatric rehabilitation physician, paediatrician, physiotherapist, occupational therapist, clinical neuropsychologist, social worker, speech pathologist, team coordinator, and education consultant) with varying levels of experience in paediatric rehabilitation (ranging from 2 to 20 years) and two individuals with lived experience of ABI (a parent of a child with ABI and a young adult who sustained an ABI as a child). One additional parent representative was unable to participate in the focus group due to illness. Participant characteristics and quotes are presented as group data only to maintain anonymity.
Focus group procedure
A focus group format was used to allow group dynamics to create richer data about attitudes and experiences, and the underlying reasons for specific behaviours (Kitzinger 1995; Tuckerman et al. 2020). A semi-structured interview guide with prompt questions based on the TDF domains was used to structure the discussion. The focus group was conducted face-to-face in a meeting room on the hospital campus and facilitated by J. R. (PhD, research fellow, female), who had training in group facilitation. The focus group discussion lasted approximately 90 min and was audio recorded and transcribed verbatim. All data generated from the focus group including transcripts and written data from the silent idea generation and voting processes were collated for analysis.
Prior to commencement of the focus group session, confidentiality was discussed and participants were informed that Chatham house rules applied. The Nominal Group Technique (a group process of problem identification, solution generation, and decision making that involves incorporating every member’s opinion and tallying frequency of member’s responses) was used to explore the main factors influencing implementation of the target behaviour (McMillan et al. 2016; Hennessy et al. 2019).
The focus group began with silent idea generation regarding influencing factors on goal setting (see Supplementary File S1 for a copy of the form used to support silent idea generation). In the first phase, participants were provided with the goal setting recommendation and asked an open-ended question: What main factor(s) do you think influence the implementation of this recommendation? In the second phase they were provided with a table of the TDF domains and asked to identify factors in each domain that might help or hinder collaborative goal setting. Participants shared the results of their silent idea generation and discussed and clarified all factors until all new ideas were exhausted. Each factor discussed was recorded on butcher’s paper. Each participant was then asked to vote for the factors of most significance for them by placing dot stickers (five per participant) next to the recorded factors. This facilitated recognition of levels of agreement among the group regarding the most important influences of collaborative goal setting. The frequency of votes for each factor were recorded.
Data analysis
We used an inductive content analysis approach (Elo and Kyngäs 2008) to analyse the data in the transcript to ensure that resultant themes were not restricted to the pre-defined TDF domains (McGowan et al. 2020). This approach involved exploring the concepts presented in the session, and then mapping the concepts to the TDF and COM-B. Any factors that did not fit with the TDF or COM-B were coded and grouped accordingly. Analysis of focus group transcript was conducted by three researchers (J. R., E. H., and E. B.) in three steps using NVivo (ver. 12, QSR International).
After data familiarisation, factors influencing collaborative goal setting were inductively coded by identifying patterns in the data and sorting the content into codes, classified by similarity of idea. This was performed concurrently by two researchers (S. K. and J. R.), who first reviewed the codes identified from Step 1, and subsequently refined these codes based on overlapping content categories to create a list of content categories. One researcher (S. K.) reviewed the codes again and further refined the content categories based on overlapping themes.
The factors identified during Step 1 were mapped to the TDF domains using NVivo (ver. 12) by S. K. using a conceptual content analysis approach (Agbadjé et al. 2020) and any disparities were discussed with E. T. (who has expertise in implementation science and psychology) until consensus was reached. All codes could be mapped to a TDF domain. To broaden the understanding of the influences on behaviour change and to inform future development of interventions, codes and TDF domains were mapped to the components of the COM-B system using the pre-set mapping relationship between the COM-B and TDF (Table 1) (Cane et al. 2012).
Following the above analysis, codes identified within each TDF domain were evaluated with respect to their likely relevance to changing the target behaviour. Two criteria were considered concurrently through discussion with the project steering committee: (1) number of votes for influencing factors within each domain received during the nominal group technique (i.e. domains with the highest number of votes were considered more important targets for intervention) and (2) presence of conflicting beliefs.
Results
Influencing factors
Coded content was mapped to the TDF and COM-B. The factors influencing the rehabilitation clinicians’ provision of collaborative goal setting with patients and their families mapped to six of the TDF domains: Skills, Knowledge, Beliefs about capabilities, Behavioural regulation, Environmental context and resources, and Social/professional role and identity, which are grouped according to COM-B (Table 2).
| COM-B | TDF domain | Theme | Votes (n = 55) | Representative quotes | |
|---|---|---|---|---|---|
| Capability | Skills | Variation in skill level and knowledge of goal setting and it’s benefits – clinicians | 8 | ‘Varying levels of skill level in goal setting and I think varying levels of understanding of the importance of interdisciplinary goals.’ | |
| Knowledge | Variation in skill level to set goals – families | ‘Consistency in goal setting.’ | |||
| ‘It’s the staff experience and ability to empower the families at that right, empower them to level at the correct time point … when they’re ready to be more engaged. It’s important for all staff to be able to do that.’ | |||||
| ‘This [rehabilitation setting] is a whole other world for them and their parents.’ | |||||
| ‘[Some families are] quite skilled at saying what all their goals are [while] others are like well you tell me.’ | |||||
| Beliefs about capabilities | Beliefs about the capability of family to engage in goal setting | 10 | ‘The emotional capacity of the parents and how that affects their decisions.’ | ||
| ‘… but the family are still in their grief… [with the role of the clinician being to] help the family to get to that point where they might be able to think about goals.’ | |||||
| ‘To put yourself into a parent’s shoes where they’ve had a major trauma to their child; you know they’re just being protective and then come back to them and allow them time.’ | |||||
| ‘… not just their language barrier but like their socioeconomic status or their educational level. I think we always think of language but there’s other factors that also influence those things.’ | |||||
| ‘There may be a whole range of existing vulnerabilities.’ | |||||
| Differing opinions and expectations | 5 | ‘Having varying opinions on what the parents think the child is capable of versus what the clinicians think [they are] capable [of].’ | |||
| ‘What the family wants may be the best for them or may not be the best and will not always align with what the clinician thinks.’ | |||||
| ‘So the discrepancy between sort of what the service can offer versus what the family needs as far as being involved, or what the family can expect.’ | |||||
| ‘Different opinions on these [goals] … I think that could be an issue in goal setting as well, coming to that compromise.’ | |||||
| ‘They’d have to accommodate their expectations based on what we’re able to provide.’ | |||||
| Behavioural regulation | Accountability | 0 | ‘Like someone, you know, checking that I have done what I’m supposed to do six months later.’ ‘There’s not necessarily, I guess, that accountability built into the process to make sure what’s supposed to happen is happening.’ | ||
| Opportunity | Environmental context and resources | Goal setting process | 8 | ‘Is there going to be a unified approach and, you know, is there a tool that we should be using, or how should that be – like I know that you’ve been going in and using the f-words and things, but just documentation or a process of sort of how that.’ | |
| ‘Having a process about how we provide this information to the families: how and when…’ | |||||
| ‘The upkeep of goals because there were many times throughout my life where I had absolutely no idea what my goals were. And they were written down in a setting. It’s like “what goals have you achieved?” I’m like “what are they again?”’ | |||||
| ‘Like I had a goal set by my own team, my physio and it was never on the one document. So having it clear in the parents’ mind.’ | |||||
| ‘That’s why it falls over cos there’s no process around follow-up.’ | |||||
| ‘Like the importance of reviewing those goals and things over a period of time. Because often the early goals can be quite different to later on.’ | |||||
| ‘It’s not just an initial communication with the family or initial communication. It’s something that needs to be active and ongoing and continually pursued.’ | |||||
| ‘Yeah, see a role for, I guess, that functional need that a family might identify. Cos sometimes I guess the functional need might break down into different aspects, so it might be behavioural or it might be a gate issue, you know if it’s something to do with…’ | |||||
| ‘I think on that as well, for social work sometimes it’s not identified at the beginning but then throughout the admission something pops up and it might not come from the coordinators. It might just come from another team member, yeah.’ | |||||
| ‘In relation to that, I sort of feel like it’s a review, like the importance of reviewing those goals and things over a period of time. Because often the early goals can be quite different to later on.’ | |||||
| ‘Is there going to be a unified approach, and you know, is there a tool that we should be using, or how should that be – like I know that you’ve been going in and using the f-words and things, but just documentation or a process of sort of how that’ | |||||
| Structure of service delivery | 15 | ‘Constraints that [are] inherent in the structure of … service delivery’ | |||
| ‘It just assumes that [goal setting] somehow magically happens but that’s a whole kind of process and a fairly resource-intensive process.’ | |||||
| ‘Just the economy of time for delivery.’ | |||||
| ‘There’s no ceiling on your caseload.’ | |||||
| ‘How you balance those responsibilities with your active discipline responsibilities and intervention.’ | |||||
| ‘I guess a barrier to developing [a] unified, coordinated approach across disciplines is different priorities for different disciplines, different caseloads, different EFT, different resources.’ | |||||
| ‘No it’s not so much about capacity, it’s about. I guess … different priorities.’ | |||||
| ‘I think something gives, and often it’s unfortunately these sort of things [i.e. goal setting] that do have to give.’ | |||||
| ‘We want to give it [documentation of goals] to the family in writing.’ | |||||
| ‘Duplication of work and duplication of documentation that I know impacts our staff daily … it is barrier around some of these things because it is just that extra step all the time for staff.’ | |||||
| Motivation | Social/professional role and identity | Who is responsible? | 4 | ‘Varying levels of understanding of the importance of interdisciplinary goals as well. I think there’s varying levels of discipline-specific goal setting happening.’ | |
| ‘Who is responsible for it?’ | |||||
| ‘Some[one] who is responsible for upkeep and so they’re not all with ten different people’ | |||||
| ‘Formulating what the needs are, relevant to the goals and prioritising that, I guess the process for that and how that, who takes responsibility or the lead on that. What the process is for that happening.’ | |||||
| ‘Sometimes it’s not identified at the beginning but then throughout the admission something pops up and it might not come from the coordinators. It might just come from another team member.’ | |||||
| Empowering families is an important part of the clinician’s role | 5 | ‘To support them [the families] … to be able to kind of exercise choice and to guide them in … the goal setting process.’ | |||
| ‘Thinking about where the family is at.’ | |||||
| ‘Help the family get to that point where they might be able to think about goals.’ | |||||
| ‘Support for families to participate in meaningful active partnerships.’ | |||||
| ‘It’s a two-way street.’ | |||||
| ‘Comes back to that issue with families, particularly those that are coming from quite disadvantaged backgrounds, to support them, to, I guess, be able to kind of exercise choice and to guide them in, I guess, the goal setting process.’ |
Capability
Participants described that there was variability in the skill level required of clinicians to actively involve children and family members in goal setting (8/55 votes). This included variation in skills and knowledge of the use of tools/frameworks to support goal setting (e.g. COPM, F-words), varying knowledge of the benefits of goal setting, and lack of skills and knowledge to support and empower families to be active partners in the goal setting process. One clinician reported ‘varying levels of skill level in goal setting and I think varying levels of understanding of the importance of interdisciplinary goals’. Empowering families to be an active partner was described as a skill required by all rehabilitation clinicians, ‘It’s the staff experience and ability to empower the families … at the correct time point … when they’re ready to be more engaged. It’s important for all staff to be able to do that’.
The families’ level of skill to actively engage in collaborative goal setting was described as variable. Overall, some families were described as inherently ‘quite skilled at saying what all their goals are’ compared to other families who relied more on support from the rehabilitation team, for example ‘others are, like, well you tell me [what the goals should be]’.
Overall, influencing factors relating to clinician’s perceptions of a family’s capacity to engage in collaborative goal setting received 10/55 votes, suggesting it was an important factor in achieving collaborative goal setting. The impact of emotional factors (4/55 votes) was summarised by a participant as the ‘emotional capacity of the parents and how that affects decisions’, as well as the ‘changing stages’ of the family’s emotional adjustment in response to trauma and how that can affect the family’s capacity to engage in goal setting at various stages post-injury. Sociocultural factors (6/55 votes) were also perceived by participants to have an impact on collaborative goal setting, as illustrated in the following quote: ‘not just their language barrier but like their socioeconomic status or their educational level. I think we always think of language but there’s other factors that also influence those things’.
Differing opinions and expectations received a total of 5/55 votes, and this was described to affect collaborative goal setting when it occurred within the family unit (3/55 votes), as well as when it arose between the family and the rehabilitation team (2/55 votes). For example, one participant described the challenge of ‘having varying opinions on what the parents think the child is capable of versus what the clinicians think [they are] capable of’. Participants also described the mismatch in that ‘what the family thinks may be the best for them … will not always align with what the clinician thinks’. It was also discussed in relation to service capacity limitations, ‘so the discrepancy between sort of what the service can offer versus what the family needs as far as being involved, or what the family can expect’. As a result of varying opinions and expectations, participants were aware of the need for compromise and negotiation to form part of the goal setting process: ‘they’d [the family] have to accommodate their expectations based on what we’re [the rehabilitation service] able to provide’.
A lack of accountability for completing and reviewing goal setting with families was also raised as an influencing factor in the focus group, although it did not attract any votes: ‘Like someone, you know, checking that I have done what I’m supposed to do six months later’ and ‘There’s not necessarily, I guess, that accountability built into the process to make sure what’s supposed to happen is happening’.
Opportunity
Most of the influencing factors were coded to the Environmental context and resources domain (23/55 votes). The themes identified within this domain were: (1) goal setting process (8/55) and (2) structure of service delivery (15/55).
The provision of a standardised and clear process for collaborative goal setting (8/55 votes) was raised as an influencing factor to ensure that goal setting was prioritised for all patients, that goals were reviewed (5/55 votes), and that information about goals was communicated with families (3/55 votes). This process was referred to as ‘the upkeep of goals’ by the young person with lived experience of ABI: ‘The upkeep of goals [is important] because there were many times throughout my life where I had absolutely no idea what my goals were. And they were written down in a setting. It’s like, “what goals have you achieved?” I’m like, “what are they again?”’. Without a process for goal review, the evolving nature of goals was described as a challenge to collaborative goal setting as explained by one participant as ‘it’s not just an initial communication with the family … it’s something that needs to be active and ongoing and continually pursued’.
The structure of service delivery received a total of 15/55 votes. Participants concurred that collaborative goal setting was resource-intensive, which is reflected in the following quote by one of the participants: ‘It just assumes that [goal setting] somehow magically happens but that’s a whole kind of process and fairly resource-intensive process’. Time constraints (4/55) were viewed as a barrier to collaborative goal setting, with a participant commenting, ‘There are constraints within rehab that we do have timetables, we do see kids 9 am–5 pm Monday to Friday’. Duplication of work (3/55) was also described as a barrier, which clinicians believed could be exacerbated if documentation of goals was provided to families: ‘Duplication of work and duplication of documentation that I know impacts our staff daily … it is a barrier around some of these things because it is just that extra step all the time for staff’.
Staffing continuity and part-time roles (4/55) and different clinical priorities (4/55) of the various disciplines in the team were also believed to have an impact on the team due to variation in schedules affecting care coordination and wide variation in when different members of the clinical team could provide assessment and therapy to address the goals: ‘I can’t see someone for another two months cos they don’t have a spot but [the other clinician] can see them next week’.
Motivation
Sub-themes that mapped to Social/professional role identity (6/55) included: (1) Who is responsible? (4/55) and (2) Empowering families is an important part of the clinician’s role (2/55).
Participants highlighted the lack of clarity of who within the interdisciplinary rehabilitation team was responsible for ensuring that the collaborative goal setting process was completed (4/55 votes) – that is, ‘someone who is responsible for the upkeep and so they [the goals] are not all with ten different people’. A participant also described ‘not working as a team’ when setting goals with families, highlighting the challenges of interdisciplinary team coordination of goal setting as ‘here are the goals, but we’re not keeping it co-ordinated’. Further, while it was acknowledged that collaborative goal setting formed part of the clinicians’ role, some participants described it as an additional responsibility, and ‘how you balance those responsibilities with your active discipline responsibilities and interventions’ was raised as an ongoing challenge.
Rehabilitation clinicians were clear that supporting and empowering families to be active partners in the goal setting process was an important part of their role (5/55). They described that their role was ‘to support them [the families] … to be able to … exercise choice and to guide them in … the goal setting process’ and explained active partnership as ‘it’s part of that building capacity in families’. Participating clinicians described the importance of ‘thinking about where the family is at’ emotionally, ‘help the family get to that point where they might be able to think about goals’ and providing ‘support for families to participate in meaningful active partnerships’.
Discussion
While clinical practice guidelines recommend that children with ABI and their families actively participate in goal setting during rehabilitation, the successful implementation of collaborative goal setting processes in the rehabilitation environment is challenging. In this study, we used behaviour change theory to explore the factors influencing variations in care to inform the development of an intervention to improve goal setting with children with ABI and their families in a large interdisciplinary rehabilitation service. Key influencing factors affecting collaborative goal setting were mapped to: Capabilities (Skills, Knowledge, Beliefs about capabilities, Behavioural regulation), Opportunities (Environmental context and resources), and Motivation (Social/professional role and identity).
The influencing factors identified in the current study are a common finding in other studies exploring factors influencing the uptake of evidence-informed recommendations in adult rehabilitation settings and in emergency department management of traumatic brain injuries (Tavender et al. 2014). Several environmental barriers were raised including lack of time and resources to allow clinicians to engage in collaborative goal setting with families (O’Keefe et al. 2021). Previous studies in paediatric rehabilitation goal setting have noted that time constraints/resources are a barrier to effective collaborative goal setting. The unique findings of our study were the acknowledgement that there is a lack of accountability, as well as a lack of clarity in who was responsible within the interdisciplinary team for ensuring that the goal setting processes were completed with each family.
A recent review highlighted the need to provide more opportunity for family involvement in goal setting (Brewer et al. 2014). Our findings support this, demonstrating that the family’s capacity to engage in the process is a key factor influencing collaborative goal setting. Prior research has indicated that family function can be significantly impacted when a child has a moderate to severe ABI (Rashid et al. 2014). In our study, we found that parents’ emotional capacity was frequently identified as a barrier to goal setting. Caregiver distress has been previously identified, with reports that adaptation can vary by parental role (Wade et al. 2010; Rashid et al. 2014). Mutual understanding of parental coping styles and concerns has been suggested as a way to facilitate successful family adaptation (Wade et al. 2010), which is necessary for active partnership in neurorehabilitation. The changing stages of the emotional capacity of caregivers and the need to ‘think about where the family is at’ adds complexity for the clinician when facilitating goal setting within the outpatient setting. The dynamic state of family preferences of parental participation in goal setting for children with cerebral palsy has been previously reported (Darrah et al. 2012). To promote participation, clinicians are required to enhance psychosocial functioning by facilitating the caregiver’s understanding and acceptance of the impairment whilst also highlighting the child’s capacity and potential (King et al. 2018).
Differing priorities was an important theme which highlighted the lack of a unifying approach as a key barrier. Forsyth (2010) argues that the philosophy of a rehabilitation programme rather than the team composition or facilities is the hallmark of success (Forsyth 2010). In particular, he defines this as ‘goal focused working’, which he likens in nomenclature to the International Classification of Function, Disability and Health (ICF) focus of ‘participation over impairment’ (Forsyth 2010). This is a strategy to reduce conflict within a team as it changes the focus from clinician-imposed goals to client-focused goals (Armstrong 2008). To achieve this, having a defined goal setting process has been recognised as a vehicle for providing greater clarify of focus and enhanced interdisciplinary team work including communication and collaboration (Brewer et al. 2014). Our study reported a lack of standardised goal setting process and related poor communication of goals as factors affecting goal setting. This has previously been identified in studies investigating goal setting in cerebral palsy (Pritchard-Wiart et al. 2010; Darrah et al. 2012). A recent review highlighting the use of the ICF framework as a goal-setting approach as it focuses on how body function can facilitate participation, which has a holistic impact on the child’s life (Nguyen et al. 2019). A defined goal setting process may help prevent duplication of documentation, which was an additional barrier linked to caseload. This is important, as heavy clinical caseloads is a barrier to goal setting, which has also been previously identified (Tam et al. 2008).
Clinical implications
The key theoretical domains underpinning barriers for both groups were Behavioural regulation and Environmental context and resources. Practically speaking, our study highlights the need for a standardised goal setting approach and established team processes which can be used by clinicians working in paediatric rehabilitation. This will also address mismatched expectations and continuity issues related to the domains of Social/professional role and identity. To address the domain of Skill, education and training are required to improve clinician understanding and skill in collaborative goal setting. Automated prompts and goal setting templates for clinicians to complete may further facilitate the goal setting process, streamline documentation to avoid duplication, and serve as a reference for the various disciplines involved (Environmental context and resources domain). Having the functionality to digitally share the goals with families, such as through family portals, may promote family engagement in the process and act as a prompt for families experiencing limitations in their capacity to be involved in goal setting (Behavioural regulation domain) (Manias et al. 2020). This will overcome some of the barriers to active partnership between clinician and families, which is central to goal setting.
The results of the current study are being used to systematically develop interventions targeting the goal setting process at the VPRS. These interventions have included: (1) review and development of a new process of care for goal setting by the interdisciplinary rehabilitation team in a series of planning meetings, (2) development of a family education handout about goal setting, and (3) the development of an e-learning module for rehabilitation clinicians about collaborative goal setting. The e-module is currently being evaluated and is freely accessible via the Royal Children’s Hospital online learning platform (www.learn.rch.org.au).
Strengths and limitations
This study has several strengths including using a theoretical framework to systematically explore influencing factors, the involvement of rehabilitation clinicians from several different disciplines and those with lived experience, and the use of the nominal group technique to ensure that all focus group participants could contribute. The use of the TDF and COM-B provide useful frameworks for understanding behaviour and determining the content and targets for future interventions in paediatric rehabilitation. Moreover, this study adds to the limited literature on goal setting in paediatric ABI. However, there were limitations to this study. First, focus group participants were recruited from a single large interdisciplinary rehabilitation team at a paediatric tertiary hospital and therefore data may not be generalisable to other settings. Second, while the composition of the focus group was determined by purposive sampling to ensure representation of the disciplines involved in goal setting from the interdisciplinary team and of people with lived experience. It is important to note that there were fewer people with lived experience in the focus group compared to rehabilitation clinicians. While this was intentional as the focus of this project was primarily on understanding the behaviour of the interdisciplinary rehabilitation team in order to guide the development of behaviour change interventions, this may have meant that the results were skewed to the perspectives of health professionals. Future research should endeavour to have greater representation of people with lived experience in projects aiming to improve paediatric rehabilitation services. Third, while focus groups may support a richer data set, the involvement of professional peers and family members in a single focus group raises the potential for social desirability bias. Strategies like silent idea generation and dot voting were devised to mitigate this, but voting was not anonymous. This setting may have also led to bias in regard to the influencing factors raised during the focus group, which is why a content analysis of transcripts and silent idea generation worksheets were undertaken to ensure ideas were representative. Finally, while the outcome should have a greater chance of success than a less comprehensive approach, the development process we used was lengthy and resource intensive. Despite the limitations, this study provides insightful data derived from both clinicians and families, which can be used to develop practical solutions to address this important area of rehabilitation.
Future research
Conclusion
The TDF and COM-B have allowed for factors believed to influence collaborative goal setting in a paediatric ABI interdisciplinary rehabilitation setting to be identified. Key factors relating to Capabilities (Skills, Knowledge, Beliefs about capabilities), Opportunity (Environmental context and resources), and Motivation (Social/professional role and identity) were described, which provide theoretically driven targets for the development of intervention designed to increase the occurrence and quality of collaborative goal setting by rehabilitation clinicians and families in paediatric rehabilitation for children with ABI. Our study highlights factors that influence collaborative goal setting in paediatric rehabilitation. The systematic development, implementation, and evaluation of targeted interventions to determine whether goal setting can be more consistently implemented in this context represent important next steps for future research.
Data availability
The data that support this study cannot be publicly shared due to ethical or privacy reasons and may be shared upon reasonable request to the corresponding author if appropriate.
Declaration of funding
We are grateful for funding from the Royal Children’s Hospital Foundation and a Victorian Government Infrastructure Grant. N. A. L. is supported by a Heart Foundation (Australia) Future Leader Fellowship.
Ethics standard
The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008.
Acknowledgements
We would like to show our appreciation for the participants who volunteered their time to take part in the focus group, in particular the staff at the Victorian Paediatric Rehabilitation Service (Victoria, Australia) and the lived experience representatives.
Author contributions
A. S. and S. K. conceived the study and obtained ethical approval. A. S. and S. K. supervised the conduct of the study and the data collection. J. R. conducted the focus group and managed the data. J. R. and S. K. conducted the data analysis. S. K. and J. R. drafted the manuscript, and all authors contributed substantially to its revision.
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