Occupational Therapy (Scholarly Articles)

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Occupational therapy in multiple sclerosis
(Cochrane Collaboration and Wiley, 2023-05-03) Kos, Daphne; Eijssen, Isaline; De Coninck, Leen; O'Meara, Ciara; Koen, Marja; Hynes, Sinéad M.
Objectives This is a protocol for a Cochrane Review (intervention). The objectives are as follows: Main objective To assess the benefits and harms of occupational therapy interventions for improving daily functioning, participation, and quality of life in people with multiple sclerosis. Secondary objectives To assess whether the effects of occupational therapy interventions differ according to the format of intervention delivery (individually versus group) and to the location of service delivery (outpatient, inpatient, or home‐based therapy).
Work-related quality of life of occupational therapists in Ireland
(SAGE Publications, 2023-11-25) Hogan, Victoria; Hynes, Sinéad; Hogan, Michael; Hodgins, Margaret
Introduction: Research focused on workforce issues and the working conditions of occupational therapists in Ireland is limited. The aim of this study was to characterise quality of working life and well-being in Irish occupational therapists. Method: A cross-sectional, electronic survey of occupational therapists working in Ireland was conducted. The questionnaire included measures of quality of working life, well-being, workload, organisational constraints and turnover intentions. Results: A total of 157 occupational therapists completed the survey. Quality of work life and well-being scores were lower than available norms. Organisational constraints and workload predicted lower quality of working life, F(7,119) = 13.669, p < 0.0005, while organisational constraints was the only significant predictor of well-being, F(10,123) = 3.698, p < 0.0005. Lower quality of working life predicted turnover intention, F(1,139) = 63.004. p < 0.0005. Conclusion: Results indicate that organisational constraints and workload are significant predictors of lower quality of working life. Lower quality of working life is also related to turnover intention. Quality of working life studies such as this can provide a form of problem diagnosis, in highlighting organisational factors that impede quality of working life.
Community occupational therapy in dementia intervention for people with mild to moderate dementia and their family carers in the UK: the VALID research programme including RCT
(NIHR Journals Library, 2023-06) Wenborn, Jennifer; Mountain, Gail; Moniz-Cook, Esme; Poland, Fiona; King, Michael; Omar, Rumana; O’Keeffe, Aidan; Morris, Stephen; Pizzo, Elena; Michie, Susan; Vernooij-Dassen, Myrra; Graff, Maud; Hill, Jane; Challis, David; Russell, Ian; Sackley, Catherine; Crellin, Nadia; Mundy, Jacqueline; Burgess, Jane; Swinson, Tom; Di Bona, Laura; Field, Becky; Hart, Cathryn; Stansfeld, Jacki; Walton, Holly; Rooks, Sally; Ledgerd, Ritchard; Orrell, Martin
Background People with dementia find it increasingly difficult to carry out daily activities (activities of daily living), and may require increasing support from family carers. Researchers in the Netherlands developed the Community Occupational Therapy in Dementia intervention, which was delivered in 10 1-hour sessions over 5 weeks to people with dementia and their family carers at home. Community Occupational Therapy in Dementia was found to be clinically effective and cost-effective. Objectives Translate and adapt Community Occupational Therapy in Dementia to develop the Community Occupational Therapy in Dementia - the UK version intervention and training programme and to optimise its suitability for use within the UK. To estimate the clinical effectiveness and cost-effectiveness of Community Occupational Therapy in Dementia - the UK version for people with mild to moderate dementia and their family carers compared with treatment as usual. Design The development phase used mixed methods to develop Community Occupational Therapy in Dementia - the UK version: translation, expert review, and adaptation of the manual and training materials; training occupational therapists; focus groups and interviews, including occupational therapists, managers, people with dementia and family carers; consensus conference; and an online survey of occupational therapists to scope UK practice. A multicentre, two-arm, parallel-group, single-blind individually randomised pragmatic trial was preceded by an internal pilot. Pairs were randomly allocated between Community Occupational Therapy in Dementia - the UK version and treatment as usual. A cost–utility analysis, fidelity study and qualitative study were also completed. Setting Community services for people with dementia across England. Participants People with mild to moderate dementia recruited in pairs with a family carer/supporter. Interventions Community Occupational Therapy in Dementia - the UK version is an activity-based, goal-setting approach for people with dementia and family carers, and is delivered at home by an occupational therapist for 10 hours over 10 weeks. Treatment as usual comprised the usual local service provision, which may or may not include standard occupational therapy. Main outcome measures Data were collected through interviews conducted in person with dyads at baseline and at 12 and 26 weeks post randomisation, and then over the telephone with a reduced sample of just carers at 52 and 78 weeks post randomisation. The primary outcome was the Bristol Activities of Daily Living Scale at 26 weeks. The secondary outcomes were as follows: person with dementia – cognition, activities of daily living, quality of life and mood; carer – sense of competence, quality of life and mood; all participants – social contacts, leisure activities and serious adverse events. Results The Community Occupational Therapy in Dementia manual and training materials were translated and reviewed. In total, 44 occupational therapists were trained and delivered Community Occupational Therapy in Dementia to 130 pairs. A total of 197 occupational therapists completed the survey, of whom 138 also provided qualitative data. In total, 31 people attended the consensus conference. Community Occupational Therapy in Dementia - the UK version has more flexibility than Community Occupational Therapy in Dementia in terms of content and delivery; for example, occupational therapists can use the wider range of assessment tools that are already in regular use within UK practice and the time span for delivery is 10 weeks to better meet the needs of pairs and be more feasible for services to deliver. In total, 31 occupational therapists provided Community Occupational Therapy in Dementia - the UK version within the randomised controlled trial. A total of 468 pairs were randomised (249 pairs to Community Occupational Therapy in Dementia - the UK version, 219 pairs to treatment as usual). People with dementia ranged in age from 55 to 97 years (mean 78.6 years), and family carers ranged in age from 29 to 94 years (mean 69.1 years). The majority of those with dementia (74.8%) were married; 19.2% lived alone. Most family carers (72.6%) were spouses but 22.2% were adult children. At 26 weeks, 406 (87%) pairs remained in the trial, and the Bristol Activities of Daily Living Scale total score did not differ at the 5% level when comparing groups (adjusted mean difference estimate 0.35, 95% confidence interval –0.81 to 1.51; p = 0.55). The adjusted (for baseline Bristol Activities of Daily Living Scale total score and randomised group) intracluster correlation coefficient estimate at week 26 was 0.043. There were no significant differences in secondary outcomes. At 52 and 78 weeks, there were no differences between the two groups in Bristol Activities of Daily Living Scale total score and secondary outcomes. The probability that Community Occupational Therapy in Dementia - the UK version is cost-effective at a threshold of willingness to pay per quality-adjusted life-year of £20,000 is 0.02%. In the qualitative interviews, participants reported positive benefits and outcomes. Of the 249 pairs allocated to Community Occupational Therapy in Dementia - the UK version, 227 reached the goal-setting phase, and 838 of the 920 goals set (90.8%) were fully or partially achieved. Limitations The development phase took longer than estimated because of translation time and organisational delays in delivering the intervention. Recruitment to the randomised controlled trial took longer than expected. Fidelity overall was moderate, with variation across sites and therapists. It is possible that Community Occupational Therapy in Dementia - the UK version did not work well in the UK service model in which usual care differs from that in the Netherlands. Conclusions This programme used a rigorous process to develop Community Occupational Therapy in Dementia - the UK version but found no statistical evidence of clinical effectiveness or cost-effectiveness compared with usual care. Qualitative findings provided positive examples of how Community Occupational Therapy in Dementia - the UK version had enabled people to live well with dementia.
A cognitive occupation-based programme for people with MS: acceptability, feasibility, and experiences of people with multiple sclerosis
(Taylor and Francis Group, 2023-07-26) Dwyer, Christopher P.; Oglesby, Megan H.; Joyce, Robert; Hynes, Sinéad M.; Health Research Board
Purpose COB-MS is an eight-session, Cognitive Occupation-Based programme for people with both MS and cognitive difficulty – designed to enhance cognition and daily functioning, through a combination of goal-setting, cognitive strategy engagement, group activities, home-practice activities and one-on-one sessions. This research aims to investigate the acceptability of COB-MS from the perspective of people living with MS, as well as the occupational therapists who facilitated the programme. Materials and methods Two content analyses were conducted on interview data from (n = 11) COB-MS participants and (n = 8) COB-MS facilitators. Thematic analysis was also conducted on the participant interview data. Results Through a, primary, content analysis, participants reported that the COB-MS provided both a positive experience and quality resources. Qualitative improvement and utilisation of their learning beyond completion of the intervention were also identified. Four themes were identified via, secondary, thematic analysis: (1) Group interaction within COB-MS was vital; (2) Online COB-MS had positive and negative effects on participation; (3) COB-MS as a provider of clarity; and (4) Using learned strategies after the completion of COB-MS. Recommendations for future administration are provided. Conclusions Findings suggest COB-MS acceptability, as well as appropriateness and feasibility, indicative of progression to a definitive trial in future research.
Evaluating the feasibility and preliminary efficacy of a Cognitive Occupation-Based programme for people with Multiple Sclerosis (COB-MS): an update to the protocol for a feasibility cluster-randomised controlled trial
(BMC (part of Springer Nature), 2023-01-20) Dwyer, Christopher P.; Alvarez-Iglesias, Alberto; Joyce, Robert; Counihan, Timothy J.; Casey, Dympna; Hynes, Sinéad M.; Health Research Board
Background Cognitive difficulties experienced by people with multiple sclerosis (MS) impact on quality of life and daily functioning, from childcare and work to social and self-care activities. The Cognitive Occupation-Based programme for people with MS (COB-MS) was developed as a holistic, individualised cognitive rehabilitation intervention to address the wide-ranging symptoms and functional difficulties that present in MS, including the ability to maintain employment, social activities, home management and self-care. The aim of the research is to evaluate the feasibility and preliminary efficacy of COB-MS for people with MS. Methods Due to the impacts of COVID-19, trial activities that were planned for in-person delivery were completed remotely. One hundred and twenty people with MS will be assigned to participate in either the COB-MS programme or a treatment-as-usual, wait-list control group as part of this single-blind, cluster-randomised controlled feasibility and preliminary efficacy trial of the COB-MS programme. The COB-MS group will participate in an eight-session occupational-based cognitive rehabilitation programme over 9 weeks. The COB-MS intervention was planned for in-person delivery but was delivered online by occupational therapists to small groups of people with MS. The primary outcome measure is the Goal Attainment Scaling at 12 weeks. Participants will be assessed pre-intervention, post-intervention, 12 weeks post-intervention and 6 months post-intervention. Qualitative evaluations of participants’ perspectives will also be examined as part of the feasibility study. Data, due to be collected in-person, was collected online or by post. The original study design, including the statistical analysis plan, remains unchanged despite the shift to a remote trial conduct. Discussion Results will provide recommendations for a future definitive trial of COB-MS, with respect to both feasibility and preliminary, clinical efficacy.
How does ReDO®-10 work? Understanding the mechanisms of action of an intervention focused on daily activities and health from the perspective of participants
(Elsevier, 2022-05-04) Fox, Jackie; Erlandsson, Lena-Karin; McSharry, Jenny; Shiel, Agnes
Evaluation of a complex healthcare intervention should include careful exploration of the mechanisms through which it brings about change. This paper describes a qualitative evaluation of the Redesigning Daily Occupations (ReDOÂ®-10) programme as it was implemented for the first time with women with stress-related issues in a primary care setting in Ireland. The ReDOÂ®-10 is a 10-week group intervention designed to support participants make changes to their daily activity patterns to have a more satisfying and balanced daily life. Fourteen women were interviewed after completing the programme. The aim was to explore changes that participants perceived they experienced and to understand how the content of ReDOÂ®-10 was thought to bring about this change (if it did). Directed content analysis was used to analyse the qualitative data using the Behaviour Change Wheel and Theoretical Domains Framework as a coding framework. Overall, four BCW functions of ReDOÂ® -10 were identified: Education, Persuasion, Modelling and Enablement. Participants described improved belief in their own capabilities, knowledge and goals around life changes. Many behaviour changes were also described, particularly in relation to doing more restorative activities in daily life. Behaviour change techniques that were identified as important for change were practicing new, restorative occupations in group sessions and as homework and the use of self-analysis activities to understand the relationship between activities and health for these participants. Modelling, support and other effects of group dynamics were also vital in changes that occurred.
Exploring the impact of ineligibility on individuals expressing interest in a trial aimed at improving daily functioning regarding perceptions of self, research and likelihood of future participation
(BMC, 2021-11-27) Dwyer, Christopher P.; McAneney, Helen; Rogers, Fionnuala M.; Joyce, Robert; Hynes, Sinéad M.; Health Research Board
Background Eligibility guidelines in research trials are necessary to minimise confounds and reduce bias in the interpretation of potential treatment effects. There is limited extant research investigating how being deemed ineligible for such trials might impact patients’ perceptions of themselves and of research. Better understanding of the impact of patient ineligibility could enhance design and implementation of future research studies. Methods Eight semi-structured telephone interviews were conducted to explore the impact of ineligibility on self-perceptions; perceptions regarding the nature of research; and the likelihood of expressing interest in future research. Data were collected and analysed thematically through inductive, interpretive phenomenological analysis (IPA). Results Five themes emerged regarding the experience of being deemed ineligible: (1) Being deemed ineligible is emotion and reaction evoking; (2) ‘Doing your bit’: Helping others and increasing the value of research; (3) Communication of ineligibility; (4) Appreciation for those who express interest; and (5) Subsequent perceptions and attitudes towards research. Conclusions The results suggest that being deemed ineligible can elicit negative emotional outcomes but is not likely to change perceptions of or attitudes towards research, possibly due to a desire to help similar others. Ineligibility can impact future participation in some cases, thus reducing the recruitment pool for subsequent research studies. Recommendations are provided to help minimise this risk. Advising of ineligibility in a personal way is recommended: with enhanced clarity regarding the reasoning behind the decision; providing opportunities to ask questions; and ensuring that appreciation for the patient’s time and interest are communicated.
Practical tips for supporting clinicians undertaking a part-time PhD
(Association for Medical Education in Europe and F1000Research, 2020-09-16) Hynes, Sinéad M.
Background: Part-time PhD students are often neglected in research and policy. Clinicians who decide to undertake a PhD usually do so on a part-time basis. It is important that supervisors are aware of the unique challenges that part-time students face. Aim: The aim is to advise supervisors on the best ways to support clinicians who are completing, undertaking, or beginning a PhD. Methods: Literature on the topic, as well as critical reflection and feedback from students was used to develop these tips. Results: Practical tips are presented here to help when supporting part-time PhD students. Conclusion: Clinicians are skilled in many areas but may require additional supports in managing time, integrating into the research environment and developing an academic identity. Supervisors have a key role in supporting their development and advocating on behalf of students when required.
Comparing the effects of a patient-designed-and-informed participant information leaflet in comparison with a standard, researcher-designed information leaflet on recruitment, retention and understanding: A study-within-a-trial
(Elsevier, 2022-06-09) Dwyer, Christopher P.; Joyce, Robert A.; Rogers, Fionnuala; Hynes, Sinéad M.; Health Research Board
Background and aim The process of trial recruitment is vital, given its impact on resources, statistical power and the validity of findings. A participant information leaflet (PIL) is often the initial and primary source of information engaged by potential participants during recruitment. Research suggests that a variety of manipulations to a PIL can be made during its development to enhance understanding, readability and accessibility. In light of this, PIL-design led by Public and Patient Involvement (PPI) may also yield positive effects in this respect, as well as consent and retention. This study-within-a-trial (SWAT) compared the effects of a PPI-developed PIL with a standard, researcher-developed PIL on rates of consent, retention, decision certainty, understanding, readability, accessibility, likeability and decision to consent. Method This SWAT used a double-blind, two-armed randomised design. The SWAT was conducted within a host trial of cognitive rehabilitation in multiple sclerosis. Results A total of 234 people expressed interest in the trial, of which 94 were retained at 6-month follow up. Results revealed no effects on levels of consent and retention between the two PIL groups. Conclusions These null effects provide interesting points of discussion and important implications for not only future research on PILs, but also for future research that involves recruitment to health-related interventions.
Developing consensus-based recommendations for the delivery of dementia services for the LGBTQIA+ community in the Republic of Ireland.
(Health Research Board (HRB) and F1000Research, 2022-03-09) Oglesby, Megan H.; Hynes, Sinéad M.
Background: The number of older LGBTQIA+ adults is set to rise significantly in the coming years. The rising numbers sit together with the rise in the number of people in Ireland diagnosed with dementia. In Ireland, no dementia-specific services exist for people from the LGBTQIA+ community. The aim of this research was to 1) identify the future needs that older LGTBQIA+ people and their care partners living in Ireland have in relation to dementia care service delivery; and to 2) develop consensus-based recommendations for dementia service provision in Ireland. Methods: A six-phase consensus process was used to develop the lists of needs and recommendations: 1) development; 2) national survey; 3) interviews with key stakeholders; 4) international review of best practice; 5) consensus meeting; 6) final member checking. Participants, aged over 50, were based in Ireland, identified as a member of the LGBTQIA+ community or supported someone who is/was. Results: Results are reported from the survey (n=49), individual interviews (n=8), and the consensus meeting (n=10). Participants have concerns related to identity management and suppression, creating an LGBTQIA+ affirmative ethos and workforce, and respect and safety. From the results and consensus process, a full list of ten prioritised needs and recommendations have been developed that focus specifically on dementia care in Ireland for the LGBTQIA+ community. Conclusion: The older LGBTQIA+ community has identified essential priorities for improving healthcare access and safety. These priorities now need to be urgently implemented into clinical and dementia care services.
Mitigating the impacts of confinement and distancing due to COVID-19 through service learning in occupational therapy education: evaluation of the Build-A-Box campaign
(All Ireland Journal of Teaching and Learning in Higher Education (AISHE-J), 2022-02-28) Boylan, Rebecca; Killeen, Hazel; Hynes, Sinéad M.
In response to the COVID-19 pandemic, students, service users and community partners have had to adapt and reform the collaborative approach to service learning. In this paper, we describe the Build-A-Box Campaign, an innovative, pilot, service-learning project that endeavoured to mitigate the impacts of COVID-19 on vulnerable communities. The partnership was between occupational therapy students from the National University of Ireland Galway, community partners and service users. The aim of this study was to explore the utility of the Build-A Box campaign with all stakeholders who participated in it. Student groups partnered with community organisations to develop custom-made boxes for “at risk” service-users. Once the boxes were delivered (n=103), a survey design was used to evaluate the impact of the campaign. Data were collected through postal and online questionnaires from 33 participants (10=students; 5-community partners; 18 service-users). Data were analysed using content analysis and describe the impact that the Build-a-Box campaign had on students, community partners, and service-users. Students and community partners acknowledge the challenges of virtual service learning and the effect of the loss of in-person meetings on relationship-building, the Box, and the student experience. The results indicate areas that should be addressed in planning a similar future project, and limitations of the research are acknowledged in the context of COVID-19.
A scoping review of online international student collaboration in occupational therapy education
(SAGE Publications, 2022-06-11) Hynes, Sinéad M.; Hills, Caroline; Orban, Kristina
Introduction For occupational therapy students, international experiences and access to a global curriculum develops understanding of broad cultural and contextual determinants of health and wellbeing. International placements or study abroad opportunities are not possible for many students and many universities are developing alternative internationalisation opportunities. The aim of this review was to determine what is known from the existing literature on the use of online international student collaboration in occupational therapy curricula. Method A scoping review design was used to search relevant literature on online international student collaboration in occupational therapy education, following a methodological framework for conducting scoping reviews. Seven databases were searched. Search included all articles published up until November 2020. Findings The database searches yielded a total of 2011 results. Following screening and review of articles ten papers met the inclusion criteria and were included in the review. The studies were charted and discussed in the areas of format of the online interactions, reported outcomes of the online interactions, barriers and facilitators in implementation. Conclusion Findings inform curricula designers establishing online international learning and those conducting research in this area. Outcomes indicate the breadth of student learning including culture, diversity, as well as the social determinants of occupational engagement and participation.
Remote administration of BICAMS measures and the Trail-Making Test to assess cognitive impairment in multiple sclerosis
(Routledge, 2022-03-17) Rogers, Fionnuala; Bane, Eimear; Dwyer, Christopher P.; Alvarez-Iglesias, Alberto; Joyce, Robert A.; Hynes, Sinéad M.; Health Research Board
Reliable remote cognitive testing could provide a safer assessment of cognitive impairment in multiple sclerosis (MS) during the COVID-19 pandemic and thereafter. Here we aimed to investigate the reliability and feasibility of administering Brief International Cognitive Assessment for MS (BICAMS) and the Trail-Making Test (TMT) to people with MS online. Between-group differences on BICAMS and the TMT were examined in a sample of 68 participants. Group 1 (N = 34) was tested in-person pre-pandemic. Group 2 was tested remotely. Within-group differences for in-person and virtual administrations were examined for Group 1. No significant differences between virtual and in-person administrations of the CVLT-II and SDMT were detected. BVMT-R scores were significantly higher for virtual administrations (M = 20.59, SD = 6.65) compared to in-person administrations (M = 16.35, SD = 6.05), possibly indicating inter-rater differences. Strong positive correlations were found for in-person and virtual scores within Group 1 on the CVLT-II (r = .84), SDMT (r = .85), TMT-A (r = .88), TMT-B (r = .76) and BVMT-R (r = .72). No significant differences between in-person and remote administrations of CVLT-II and SDMT in people living with MS were detected. Recommendations for future studies employing the TMT and BVMT-R online are provided.
Patterns of occupational engagement among community-dwelling older adults in Singapore: An exploratory mixed method study
(SAGE Publications, 2021-05-04) Koh, Wei Qi; Chia, Yuan Lin; Wen Xu, Lim; Lim, Fiona Y Q; Cheung, Therma W C
Introduction The aim of this study is to understand the patterns of occupations among community-dwelling older adults in Singapore. The objectives are to describe their occupational engagement using the Activity Card Sort Singapore, understand their occupational preferences and perceived barriers and facilitators to engagement. Methods A convergent parallel mixed-method study was conducted over a 5-month period in 2018. Purposive and snowball sampling were used to recruit the participants. Individual 1-h interviews were conducted at participants’ homes. Quantitative data collected include demographic information, Modified Barthel Index scores and activity engagement based on the Activity Card Sort Singapore. Qualitative data was collected using semi-structured interviews. Results 105 participants were enrolled in the study. Overall, older adults engaged mostly in instrumental and social activities. However, leisure and social activities were most preferred. Gender, educational level and age were found to influence occupational engagement. Overall, six main themes relating to perceived barriers and facilitators to occupational engagement were identified: cognition and physical status, self-efficacy, resources, affect and meaningfulness, social influence and environmental factors. Conclusion The findings from this study provided insights into the occupational patterns of community-dwelling older adults in Singapore and their perceived barriers and facilitators to engagement. Recommendations for practice were identified.
Research interrupted: The impact of the COVID-19 pandemic on multiple sclerosis research in the field of rehabilitation and quality of life
(SAGE Publications, 2021-08-26) Maguire, Rebecca; Hynes, Sinéad; Seebacher, Barbara; Block, Valerie J.; Zackowski, Kathy M.; Jonsdottir, Johanna; Finlayson, Marcia; Plummer, Prue; Freeman, Jennifer; Giesser, Barbara; von Geldern, Gloria; Ploughman, Michelle
Background The COVID-19 pandemic has likely had a negative impact on rehabilitation and quality of life (QoL) research in multiple sclerosis (MS). Method We explored perceived barriers to research among 87 researchers, representing 18 countries, both prior to and since COVID-19. Results A Wilcoxon signed-rank test found that significantly more researchers reported experiencing barriers to research since the onset of the pandemic compared to pre-COVID-19 (p < .001), with 78% of respondents reporting at least some barriers since COVID-19. The most commonly-cited barriers related to participant access (n = 38) and interruptions/delays to projects (n = 19). Although no gender differences were found in the number of barriers reported, female respondents were more likely to cite time or competing demands as barriers to research. Females were also more likely to perceive being negatively impacted by the pandemic compared to other genders (p = .007). Conclusions Implications for the future landscape of rehabilitation research in MS are discussed.
A qualitative investigation of reasoning behind decisions to decline participation in a research intervention: A study-within-a-trial
(SAGE Publications, 2021-08-06) Dwyer, Christopher P.; Moses, Anusha; Rogers, Fionnuala M.; Casey, Dympna; Joyce, Robert; Hynes, Sinéad M.; Health Research Board
The current study-within-a-trial explored individuals’ decisions to decline participation in research trialling a chronic illness-focused therapy (i.e. multiple sclerosis). Four themes were identified from seven semi-structured interviews with participation decliners and were confirmed by the host trial’s Patient & Public Involvement (PPI) panel: acknowledgement of the value of research; ‘fit’ of the study; misinterpretation of participant information; and ‘ignorance is bliss’ – discussed in light of theory and research. This study-within-a-trial extends research on trial recruitment and participation decline; while also suggesting that PPI can be utilised in both a practical and impactful manner.
Disclosing a diagnosis in the workplace: Perspective of people with multiple sclerosis
(Cambridge University Press, 2021-02-17) Gill, Laura; Hynes, Sinéad M.
Background: Early withdrawal from the workforce is associated with a diagnosis of multiple sclerosis (MS), with employment retention rates also lower than in the general population. Despite legal requirements, equality in the workplace for people with MS has not been achieved. Disclosure of multiple sclerosis at work is essential for the implementation of accommodations enabling employment retention. Method: An interpretive descriptive study explored participants’ decision to disclose or not disclose their diagnosis of multiple sclerosis and the implications this had on work participation and working relationships. Semistructured interviews were used to collect data from 6 participants. Results: Three themes were identified, using a reflective approach to analysis, from the data: (a) Accommodations; (b) Workplace Relationships; and (c) Balancing Work and Home Life. Participants had mixed experiences of disclosing their diagnosis. Findings supported the implementation of workplace accommodations including physical, cognitive, and structural supports. Concealment of MS was associated with fear of workplace stigmatisation. Conclusion: Disclosure is multidimensional and subjective. It is based on personal, systematic, and social factors. This study was limited by the small number of participants and not including stakeholders in the creation of the topic guide. The results are important for those involved in supporting people with multiple sclerosis to remain in the workplace.
Dating with a diagnosis: The lived experience of people with multiple sclerosis
(Springer, 2021-05-26) Tabassum, Kinza; Fox, Jackie; Fuller, Sara; Hynes, Sinéad M.; Health Research Board Summer Student Scholarship; Health Research Board
Multiple Sclerosis (MS) is a neurological condition which usually manifests between the ages of 20 40 years. This is a critical period for developing relationships, particularly romantic relationships. People with MS can experience sexual dysfunction, limb weakness, fatigue, pain, reduced mood and bladder/bowel dysfunction; potentially affecting their ability to participate in many meaningful activities, including those associated with romantic relationships, dating or engaging in sexual intercourse. Dating or starting romantic relationships can be difficult for people with physical disabilities as they can experience stigma, negative societal attitudes and the fear of requiring care from potential partners. Dating experiences of people with progressive conditions like MS have not been explored in detail. The aim of this study was to develop a rich understanding of how living with MS interacts with/influences dating and developing romantic relationships. The study used a descriptive phenomenological design and a purposive sampling strategy. Colaizzi s descriptive phenomenological method was used to analyze the data (Colaizzi, 1978). Five females and two males, aged 23 51, participated in two online focus groups. Dating with a diagnosis of MS is a highly personal phenomenon, characterized by individual differences in values and experiences. Core to the phenomenon was personal decision-making about disclosure of the diagnosis and ongoing adaptation to the fluctuating nature of the condition with partners in new/developing relationships. The findings will help health professionals working with adults with MS understand this important aspect of their lives.
Developing understandings of occupational (in)justice with occupational therapy students in a transnational project
(Routledge, 2021-02-09) Truman, Juliette L.; Fox, Jackie; Hynes, Sinéad M.; Hills, Caroline; McGinley, Sarah L.; Ekstam, Lisa; Shiel, Agnes; Orban, Kristina
This article describes an innovative transnational education project involving three European universities, funded through ERASMUS+. One of its aims was to develop and provide a curriculum to facilitate students’ understanding and identification of occupational (in)justice by exposing them to marginalised people living in three European communities with differing cultural, social, and political systems. Occupational injustice is an ongoing deprivation or patterns of disruption that creates health burdens, barriers to educational and social opportunities, and risk to the individual’s lifespan. We describe how a transnational educational collaboration offered a new way of facilitating learning of occupational (in)justice in a practical way to stimulate the application of concepts to discipline specific thinking and engage students in debate about new areas of potential practice which are transformational. The educational theory underpinning the project is discussed, together with a description of how authentic learning experiences supported the development of occupational justice knowledge and justice-focused practice.
A feasibility study of the Redesigning Daily Occupations (ReDOTM-10) programme in an Irish context
(Taylor & Francis, 2021-02-08) Fox, Jackie; Erlandsson, Lena-Karin; Shiel, Agnes; Millennium Fund, National University of Ireland Galway; Lund University, Sweden
Despite high demand, mental health services in primary care in Ireland are underdeveloped. People with mild/moderate anxiety, depression and unspecified psychological distress are frequently seen in primary care settings, mostly by general practitioners (GPs). Occupational therapists have the potential to contribute to service-provision with interventions specially designed for the targeted group e.g. the Redesigning Daily Occupations programme (ReDO-10). This study aimed to explore the feasibility of a future RCT of the ReDO-10 programme in Ireland and the contextual factors that would influence future implementation. Using a multi-phase, mixed-method design, qualitative and quantitative data were gathered from key stakeholders: ReDO-10 participants (n¿=¿10), GPs (n¿=¿9) and occupational therapists (n¿=¿2). Acceptability, satisfaction, cultural fit and demand were explored, as well as methodological issues such as appropriateness of recruitment methods, outcome measures and randomization. ReDO-10 was acceptable to participants who reported improvements in their occupational patterns and valued the group-based format. GPs and occupational therapists welcomed the intervention, but acknowledged the limitations of time and resources in the Irish primary care context. ReDO-10 is feasible to explore in a future RCT in Ireland and this study provides important context for future implementation and/or research.

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