Occupational therapists working with adults with intellectual disability in Ireland: survey about scope of practice

The Irish National Intellectual Disability Database study estimates that 31% (n = 8,791) of adults with intellectual disability (ID) receive occupational therapy (Hourigan et al., 2017), a number expected to rise by 17% by 2032 (Department of Health, 2021). There is a significant gap in meeting the occupational needs of adults with ID (Blaskowitz et al., 2021; Department of Health, 2021), where in Ireland up to 9,606 individuals require new or improved service provision (Hourigan et al., 2017). The United Nations Convention on the Rights of Person with Disabilities (UNCRPD, 2006) emphasises that state parties must offer services to enable individuals with disabilities to realise their right to independence and participation. To that end, occupational therapists support adults with ID through analysis of the relationship between the person, occupation and environment (Bathje et al., 2018).

Occupational therapists have expertise in teaching and/or adapting everyday activities of daily living (ADL), vocational occupations and social participation (Johnson et al., 2019). Occupational therapy for adults with ID includes complex seating, environmental adaptation, health management, advocacy and assistive technology (Lilywhite and Haines, 2010; Johnson et al., 2019; Blaskowitz et al., 2021; King et al., 2022). Occupational therapists support adults with ID to maintain independence as they age, particularly relevant given this population is living longer (Washington et al., 2021; King et al., 2022; Haigh et al., 2024). Identified barriers include inadequate resourcing, limited capacity and training, lack of role clarity and challenges implementing evidence-based practice (Clemson and Laver, 2014; Johnson et al., 2019; Mahoney et al., 2019; Blaskowitz et al., 2021). Occupational therapy for adults with ID research has previously been viewed through a lens of disability studies, particularly regarding deinstitutionalisation, as well as health promotion and to a less extent, occupational science (Channon, 2014). In Ireland, occupational therapy has developed from a background of providing curative occupations within institutions (Pettigrew et al., 2017), including for adults with ID, while the drive to expand current services includes occupational therapy involvement in supported employment (Hynes and Harb, 2017) has the potential to support social inclusion for adults with ID.

Occupational therapists can be perceived largely as equipment “assessors” by many of their colleagues (Clemson and Laver, 2014), where the focus can often relate to high-risk situations for a service and client, such as falls or injuries to others (e.g. handling equipment). This can mean that there is less focus available for other valued occupations such as productivity and leisure (Lilywhite and Haines, 2010; Umeda et al., 2017; Blaskowitz et al., 2021). Consistent with evidence from other populations such as older persons (Thawisuk et al., 2022), equipment provision requires extensive administration and follow-up time that can be “hidden” as not directly client facing while there is a challenge for occupational therapists to keep up to date with fast-moving technology for adults with ID (Johnson et al., 2023). The exact number of occupational therapists working in Irish adult ID services has not been quantified (as per discussions with co-authors who are representative of occupational therapists working in ID services in Ireland). A report from the Irish National Federation of Voluntary Service Providers (2019) reports that adult ID services are inadequately resourced. The Disability Capacity Review (Department of Health, 2021) reports that caseload expectations for occupational therapists working with adults with ID are insufficient to meet current and future needs.

We contend that the failure to adequately provide occupational therapy services that can enact occupation-focused care for adults with ID contributes directly to ongoing marginalisation for this group (Blaskowitz et al., 2019), where risk-focused service provision can limit both the realisation of occupational therapy and participation for adults with ID (Field et al., 2024). The aim of this study, therefore, was to understand the perspectives of occupational therapists working in adult ID services in Ireland about their scope of practice and provide information about service development.

We chose to conduct an online survey to facilitate efficient and geographically equitable opportunities for eligible respondents (Sharma et al., 2021). Our survey design was guided by Checklist for Reporting of Survey Studies guidelines (Sharma et al., 2021). Survey plans were initiated and developed with co-authors from the Intellectual Disability Advisory Group (IDAG), part of the Association of Occupational Therapists of Ireland (AOTI), as part of them developing a position statement for this group of occupational therapists. Practicing occupational therapists’ involvement in research is key, to identify core concerns and enhance implementation of findings (Flenady et al., 2022). Survey items were proposed by members of IDAG committee (initials blind for peer review) which were then revised by student researchers (blind for peer review) and academic supervisor (blind for peer review). Ethical approval was obtained from (ethics number blind for peer review). The survey was generated using Qualtrics software (2023 Version) including free text, multiple choice, five-point likert scale ratings and ranked option questions. No target population could be estimated as it is not known how many occupational therapists work in this area specifically, however 88 occupational therapists are aligned with IDAG.

Registered occupational therapists currently working in adult ID services in Ireland were eligible. An information sheet and consent formalities prefaced the survey which had 48 questions across five sections:

1. demographic information;

2. occupational therapy process, about theories, assessment and intervention delivery;

3. challenges and enablers for practice;

4. potential and/or future occupational therapy practice; and

5. free text information questions.

The survey was pre-tested with four occupational therapists and feedback centered around survey flow, question comprehension and timeliness which led to rephrasing, reordering and the removal of some free text box questions to reduce respondent effort.

The survey link was shared via email through AOTI and collaborator networks as well as social media such as Twitter/X and LinkedIn. The survey was open from 16 August 2023 for three weeks, with a reminder after two weeks.

Quantitative results were analysed using IBM SPSS, Statistics License 28. Frequency analyses were conducted on participant demographics, providing descriptive statistics.

Qualitative data from free text responses were analysed using reflexive thematic analysis (Braun and Clarke, 2013). Firstly, both researchers familiarised themselves with the data, and thereafter codes were initially independently developed by two researchers, to capture key patterns within the data. A preliminarly report about initial themes was then provided to the wider group for further refinement. The background and placement experiences of student researchers likely influenced how initial findings were framed. All researchers repeatedly reflected on their interpretations during theme development, ensuring reflexive analysis (Braun and Clarke, 2013).

Fifty-four occupational therapists started the survey, with 50 completing most questions: 43 female and 6 male therapists, with 1 choosing not to report their gender. Given the membership of IDAG is 88 occupational therapists, the response rate likely represents a significant proportion of the target group. The mean age was 40.5 years old, and most were of White Irish background (90%, n = 48). Further details are outlined in Table 1. Please note that all percentage figures have been rounded to the nearest whole number.

The Person-Environment-Occupation model (82%, n = 38) was the most influential model of practice, followed by the Model of Human Occupation (76%, n = 35). The most cited philosophical approach informing practice was overwhelmingly occupation-focused (97%, n = 42). The most common frames of reference were client centred/person centred (97%, n = 45) and sensory integration (72%, n = 33). Table 2 gives further details.

The Poole Activity Level was the most popular assessment tool for assessing occupational engagement (58%, n = 25). Additionally, assessment of occupational performance focused on ADL (87%, n = 40), environmental assessments (87%, n = 40) and social and community participation (74%, n = 34). Table 3 outlines further details.

Therapists engaged in collaborative goal setting “most of the time” with the adult with ID (41%, n = 19) or the supporting staff/caregivers (45%, n = 19). Respondents were less likely to engage family members around goal setting, with 43% (n = 20) citing this happening “sometimes”. More details are available in Table 4.

The primary areas of intervention were ADL (n = 39, 85%), sensory processing and self-regulation (n = 35, 76%), housing adaptations (n = 34, 74%) and environmental adaptations (n = 34, 74%). Figure 1 outlines further intervention areas.

Over half of participants indicated they used outcome measures some of the time (n = 27, 59%). Informal feedback with service users or family was a common non-standardised outcome measure (n = 20, 29%), while standardised tools included the Goal Attainment Scale (n = 11,16%), Canadian Occupational Performance Measure (n = 10, 14%) and Model of Human Occupation Screening Tool (n = 10, 14%).

Respondents had a high rate of continuing professional development (CPD) engagement, with 98% (n = 42) reporting they had engaged in CPD in the preceding year. There was a range of priorities for future learning needs, from training on specific assessment tools and intervention areas and also, notably, developing skills required to advocate for occupational therapy and for adults with ID (building business cases, generating practice-informed evidence).

Three key themes, each with sub-themes, are illustrated in Figure 2.

This theme consisted of three sub-themes: (1) misunderstanding of occupational therapy role among others, (2) responsibility to advocate for occupational therapy and (3) call for evidence-based practice.

“The OT role can be misunderstood and undervalued or overlooked” P – 29.

Theme 1 identifies that “there appears to be a lack of understanding for Occupational Therapy” P – 24, with wider multi-disciplinary (MDT) colleagues who perceived the occupational therapy role focused on adaptive equipment prescription. Although most colleagues “first thought of OT would be in relation to equipment provision” P – 6, they appeared unaware of the occupation-informed specialised knowledge required to prescribe complex equipment.

Unmet seating and postural management were viewed as presenting high risks to client and/or other staff, therefore these referrals took up the majority of time for many. While equipment was acknowledged as a key aspect of an occupational therapist’s work to support clients in valued occupations, therapists perceived that other areas, such as productivity and leisure occupations, may not necessitate equipment for high risk situations per se and could not be routinely supported due to “limited OT staffing” P – 6.

There was a challenge in communicating about the occupational therapy role, with some querying if the issue “Is a lack of understanding of the role or a need to be more vocal?” P – 32. However, it was seen as every occupational therapist’s responsibility to advocate as “there is a large cohort that could benefit from OT, but staff potentially don’t know we can help” P – 3. For example, one respondent reported that: “We are appallingly poor as a profession, at explaining the range of skills that we possess. I become frustrated when I see other disciplines take on pieces of occupational performance as their specialty” P – 9. Such “Role blurring” was identified when respondents observed other professions addressing what they considered to be occupational therapy areas of practice. While the advocacy of occupational therapy at MDT and senior leadership meetings was valued, this responsibility was relevant across grades: “Occupational therapists need to verbalise our philosophy and explain the importance of occupation-based practice” P – 16.

It was important that occupational therapists begin to “reframe the clinical language we use to include more occupation-focused language” P – 35. While no one suggested abandoning the higher-risk work, often related to equipment as a means to prevent injury, advocating for the use of occupation-focused outcome measures was suggested “to showcase OT and assist with making a case for greater OT resources” P – 2.

Participants highlighted that the development of ID-specific, occupation-focused, assessment tools could promote clarity as “[…] the lack of ID specific assessment tools undermines OT role in assessment and intervention” P – 32. For example, participants were aware of the evidence to support health promotion occupational therapy initiatives such as Lifestyle ReDesign^TM also mentioned; “[…] a Lifestyle Redesign project with people who are experiencing more severe-profound level of intellectual disability” P – 18.

“OTs in our service spend their time firefighting urgent issues and just trying to survive. Staff are completely disillusioned, and burnout is widespread” P – 20.

Two sub-themes underpinned this theme: (1) the reality of insufficient staffing and (2) a lack of occupation-focused intervention.

Limited numbers of staff, time constraints, overwhelming and complex caseloads and a lack of occupational therapists in managerial roles were identified as key issues: “There isn’t enough staff in the department to work on occupational performance holistically and therefore equipment and behaviour needs have to be prioritised” P – 8. As one participant suggested: “With sufficient staffing we could develop more service development projects and work on prevention, education, knowledge building for staff and families, but these are the areas that suffer due to time constraints” P – 12.

In a similar way, participants emphasised the importance of having adequate managerial roles to “support and progress the service and implement change” P – 1. It was suggested that a “good balance of experience” P – 19 in the team is important and that “OT manager posts are key also to promoting occupation focused OT services” P – 2. Furthermore, the larger MDT “are not aware of the scope/remit that occupational therapy practice could offer if fully staffed” P – 12. One person recommended that “a priority would therefore be more therapists and therapy assistants so that occupation-focused OT practice can flourish” P – 2.

Many services have been “constrained” to addressing “particular priorities” P – 11 within occupational therapy practice, most commonly related to high risk and injury related assessments, however if resources were available to meet those priority interventions (often involving equipment), occupation focused practice, with and without equipment provision, could be developed; “Current practice is often reduced to emergencies, firefighting, focus on safety and equipment rather than addressing wider needs” P – 11.

This theme was underpinned by two sub-themes: (1) optimising occupation-focused occupational therapy and (2) learning opportunities.

Participants believed that given adequate supports, occupational therapists could move away from a “fire-fighting” P – 11 approach, dealing with primarily high priority/risk-related referrals, towards a more participation-enhancing approach: “With increased posts there is the opportunity for the OT role to expand within services to include a wider focus on occupational roles” P – 17.

There was a desire for further learning opportunities to support professional development relating to both current and future CPD, as well as reflections on pre-registration education. Skills identified included preparing adults with ID for de-congregation, capacity and decision-making supports, environmental supports to support adaptive behaviours, digital and technology supports, sexual health and collaborative goal-setting skills with people who are minimally verbal. Other professional skills mentioned included advocacy skills, stress management, resilience training and presentation skills. Opportunities for career advancement, such as clinical specialist pathways, were a priority. Participants with 11+ years’ experience, often with post-graduate training, reported limited opportunities for advancement; “Additional posts and career development opportunities would create time and space to develop the role of OT” P – 13.

A module in occupational therapy pre-registration education was recommended, that could prompt a formalised discussion of the occupational therapy scope with adults with ID. This could aid occupational therapists in their confidence to advocate for their scope in that area upon qualification.

This is a contemporary study of the occupational therapy role in adult ID services in Ireland. Overall, there was a consensus among participants that, while occupational therapy is valued by many, the profession was not fulfilling its potential for this population. There were some contradictions across the data, where the quantitative findings revealed a strong intention to work in an occupation focused manner, with reports of occupation focused theory and activity-based assessment approaches, the qualitative evidence illustrates frustrations and lack of congruency (for some) between how they would like occupational therapy to be practiced and how they view their practice currently. These findings reflected views from previous similar research, where, despite such challenges, occupational therapists articulate a clear theoretical basis for their work (Lilywhite and Haines, 2010; Johnson et al., 2019; Blaskowitz et al., 2021; King et al., 2022) and can highlight how occupational therapists strived to uphold their occupation-focused approach. There may be a mismatch between occupation focused thinking and occupation focused intervention, where occupational therapists posit to reason in an occupation-focused manner during equipment assessment but then feel unable to practice occupation-focused interventions more broadly. This tension has been highlighted previously by Fisher (2013), where a disconnect can be present between what we do as occupational therapists and how we do it.

Consistent with findings by Clemson and Laver (2014), the perception of occupational therapists as solely equipment providers for high-risk/injury related scenarios, led to limited resourcing for occupations apart from those priority areas. Significant frustration was reported about limits on occupational therapist staffing, leading to a focus on high priority safety-related referrals due to limited resources. An incongruity was highlighted between recognising an occupational therapist’s specialist skillset and how the profession is resourced. Evidence exists endorsing health promotion participation-focused interventions for this population (Lilywhite and Haines, 2010; Blaskowitz et al., 2021,Washington et al., 2021; King et al., 2022; Rana et al., 2024). however, the uptake of existing occupational therapy evidence will remain limited while the workforce is stretched so thin (Lilywhite and Haines, 2010; Upton et al., 2014).

From literature on developing evidence-based practice in occupational therapy, contextually relevant and collaborative training approaches are key (Myers and Lotz, 2017). Participating therapists in this study illustrated a clear commitment to evidence-based practice, being particularly interested in interventions which are occupation focused (Channon, 2014) and enhance lifestyle (Rana et al., 2024) for adults with ID. There was a strong motivation for further CPD across outcome measurement, intervention development and, interestingly, to enhance skills required to advocate and promote occupational therapy. The capture of existing data within services through audit, and resources to implement and evaluate evidence-based practice, could represent a starting point for occupational therapists to develop the evidence for their practice further (Mahoney et al., 2019). Given there were relatively low cited rates of use of occupation-focused measures, enhancing uptake of these could develop occupation-focused evidence and practice, including as part of equipment provision.

Key strengths of this study include that is the first of its kind in Ireland, and one of few international studies, focused on the scope of occupational therapy with adults with ID. In addition, there was significant input from practicing clinicians with IDAG during survey development, analysis and dissemination (including as co-authors) which is imperative to support implementation (Flenady et al., 2022). Combining qualitative and quantitative methodologies complement each other by synthesising different types of data and free text options added depth by exploring new territory (Schonfeld and Mazzola, 2013). The survey was relatively long (average time to complete 40 mins), and as there was a drop-off in response to some questions, a shorter questionnaire may have captured a less in-depth but higher response rate. We cannot be sure how representative our findings are for all occupational therapists working in adult ID, so findings must be interpreted accordingly.

We recommend that further research is conducted to establish a clear scope of occupation-focused practice for occupational therapists working with adults with ID, including development of a position paper. Focus groups or interviews could provide more nuanced information than can be captured via surveys (Flynn et al., 2018) and we are progressing from this exploratory survey phase to a more in-depth qualitative interview study with interested participants. Furthermore, it is important to identify the boundaries of the occupational therapy scope, tackle the complexity of the concept of “role blurring” and explore other possible such as “educational and vocational training, support and coaching for direct care staff in congregate settings, building social capital and client- and policy-level advocacy” (Johnson et al., 2019, p. 2).

Recommendations for practice include enhanced staffing and career progression so that the potential for occupational therapy is strengthened and the expertise of leaders working in adult ID services is recognised. These findings are therefore supportive of government policy recommending doubling the number of occupational therapists working in adult ID services by 2032 (Department of Health, 2021). Whiteford and Pereira (2012) contend that social inclusion is enacted through engagement in daily occupations within one’s local community. There is therefore a need to support adults with ID in social and community integration, as they often face particular challenges such as stigma (Blaskowitz et al., 2019) and social and community integration have been linked to increased health, and lower rates of depression and loneliness (Amado et al., 2013). Given the closely aligned aims of occupational therapy service provision and the mission for disability services to enact rights to participation (UNCRPD, 2006), the findings of this study support potential of occupational therapy to take a leadership role in this area.

It is important to consider how our findings may inform policy. Considering recent significant changes in disability resourcing in Ireland, and the subsequent focus of funding towards children’s services, it is vital that adult ID services equally need attention for staffing and resource allocation. In tandem, further high-quality research is required, where committed time and support to practicing clinicians will be necessary to identify and produce such evidence. Finally, to support adults with ID to realise their right to participate to their potential in society (UNCRPD, 2006), occupational therapists should advocate for inclusive research partnerships with this group to identify evidence gaps, establish best practice and implementation (Raman and French, 2021; Salmon et al., 2018) and such inclusive therapeutic process has been advocated from within occupational therapy literature (Blaskowitz et al., 2019).

In conclusion, this study has highlighted the contemporary scope of occupational therapist practice with adult ID services in Ireland. Key recommendations include the need for:

• sufficient staffing;

• protected clinical and research time; and

• willingness and confidence of occupational therapists to advocate for the role of occupational therapy.

Further evidence-based practice and development of advocacy skills for and with adults with ID is also recommended.

Expedited ethical approval for the study was sought, as the study was deemed low risk, and ethical approval was granted from the University of Limerick Education and Health Sciences Research Board (EHS Rec 2023_06_30_EHS).