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The British Journal of Occupational Therapy logoLink to The British Journal of Occupational Therapy
. 2022 Oct 28;86(5):349–358. doi: 10.1177/03080226221126901

A protocol for removing environmental barriers to independent living (REBIL): An adapted evidence-based occupational therapy intervention to increase community participation for individuals aging with long-term physical disabilities

Szu-Wei Chen 1, Emily Somerville 1, Megen Devine 1, Susan Stark 1,✉
PMCID: PMC10961972  NIHMSID: NIHMS1910840  PMID: 38529197

Abstract

Background:

People aging with long-term physical disabilities are living longer and experiencing the challenges of aging, including the onset of secondary and age-related health conditions. People aging with long-term physical disabilities are at high risk of falls, fall injuries, diminished functional abilities, and compromised participation. However, no available programs support people aging with long-term physical disabilities to participate safely at home and in the community. The proposed study is to examine the feasibility and efficacy of an adapted intervention: removing environmental barriers to independent living.

Method/Design:

A single-blinded randomized controlled trial will be conducted. Participants who are 45–65 years old; self-report difficulty with ⩾2 daily activities; have had a physical disability for ⩾5 years; and live within 60 mi of the research lab are eligible. All participants will receive an initial in-home evaluation before randomization. The treatment group will receive removing environmental barriers to independent living (total five visits) intervention, which is tailored. The waitlist control group will be offered the same intervention after 6-month follow-up. Expected outcomes are high acceptability, fidelity, and adherence; low safety risk; improved community participation and daily activities performance; and fewer environmental barriers and fall hazards.

Discussion:

Findings will serve as preliminary evidence for occupational therapy community practice. Outcomes will also inform future large, pragmatic trials.

Trial Registration: ClinicalTrials.gov identifier NCT04589988

Keywords: People with physical disability, aging, home activity participation, falls, community participation, randomized controlled trial

Introduction

The United States (US) is facing an unprecedented demographic shift. Older people are living longer and will comprise one-fifth of the population by 2040 (Courtney-Long et al., 2015). People with physical disabilities are also living longer and experiencing the challenges of aging (LaPlante, 2014). People aging with long-term physical disabilities (PAwLTPD) are individuals with lifelong and early-onset disabilities, such as cerebral palsy, spinal cord injury, and muscular dystrophy, who live into mid- and later-life (Kinne et al., 2004). PAwLTPD also include individuals who acquire disabilities in midlife from illness or injury, who are increasingly surviving into later life (Vos et al., 2015). Estimates suggest that about 12 million people older than 65 years are aging with early-onset disabilities (Iezzoni et al., 2001), and people with disabilities aged 45 years and older report decreased independence as their age increases (Courtney-Long et al., 2015).

In addition to their physical disabilities, PAwLTPD are also at risk of all common age-related chronic conditions and impairments that threaten the health and independence of the general middle-aged and older population. Examples include hypertension, heart disease, diabetes, arthritis, falls, obesity, depression, and cognitive decline (Kinne et al., 2004). The onset of these conditions is often earlier for PAwLTPD than for their counterparts without disabilities, and these conditions may have a greater impact on their functional abilities (Molton et al., 2014). Furthermore, PAwLTPD simultaneously may experience secondary conditions associated with their primary disabling condition, including pain (McColl et al., 2004), fatigue (Jensen et al., 2007; Patti et al., 2002), weakness (Patti et al., 2002), pressure ulcers (Whiteneck et al., 1992), urinary tract infections (Whiteneck et al., 1992), and bladder or bowel dysfunction (Patti et al., 2002). These aging-related changes in ability and secondary conditions can be more disabling and have a greater effect on independence and community participation than the primary disability itself (Gray et al., 2008).

Studies have shown that PAwLTPD aged 50–65 years have significantly lower participation rates than those aged 18–49 years, and strikingly, they had participation patterns similar to adults aged 65 or older for many destinations (e.g., dining out, visiting friends, volunteering or working, and shopping) (Gray et al., 2008). Community participation degradation patterns are similar to other trajectories of functional decline for PAwLTPD (Verbrugge et al., 2017). In addition, people aging with conditions such as multiple sclerosis, muscular dystrophy, and spinal cord injuries have demonstrated fall rates over double the rates of community-dwelling older adults (Vos et al., 2015). High rates of activity restriction, including community participation, are reported as a consequence of falls in people aging with disability (Vos et al., 2015). Preliminary data from our team have also shown that PAwLTPD are at high risk for falls, fall injury, and fear of falling. From our qualitative data, service providers have also indicated that they did not have fall prevention programs targeting PAwLTPD, nor did they feel that they adequately addressed the needs of this group. Due to the potential negative impacts of falls on health and participation for PAwLTPD, an intervention that could prevent falls and address participation barriers is needed.

Currently, there are gaps in service delivery, including occupational therapy, to support the independence of PAwLTPD as they age. Traditional services target either aging populations or disability populations, causing this growing segment of the population to fall through service gaps at alarming rates (LaPlante, 2014). Even when this group is able to access services, they are less likely to receive evidence-based interventions, as few interventions have been evaluated for effectiveness in this emerging population. To bridge the gap of service delivery and advance knowledge in supporting aging in place for PAwLTPD, we propose an occupational therapy intervention called removing environmental barriers to independent living (REBIL). REBIL is informed by two evidence-based occupational therapy interventions, community participation transition after stroke (COMPASS) (Somerville et al., 2019) and the home hazard removal program (HARP) (Stark et al., 2021). As people with long-term physical disabilities age, the fit between their personal abilities and environment changes. Learning to manage new difficulties with performance and barriers in the environment will enable people to maintain participation in valued activities safely as they age in the community.

COMPASS and HARP are both complex interventions delivered by occupational therapists in the home. COMPASS focuses on function during the transition from inpatient rehabilitation to home, and HARP focuses on reducing fall risk. Both interventions use environmental modification and strategy training to address function and fall risk. Environmental modifications (e.g., installing grab bars by the bathtub) improve daily activity performance for people with various health conditions and decrease the rate and risk of falls among older adults (Stark et al., 2017, 2021). Strategy training uses guided discovery to enable the participant to independently identify problematic activities, environmental barriers, and fall risks in the home and community (Stark, 2004).

Objectives and hypothesis

The objective of this study is to (1) determine the feasibility of REBIL and (2) estimate the magnitude of efficacy of REBIL on the primary outcome and exploratory outcomes. For the first objective, we will conduct a process evaluation to evaluate the feasibility and to aid in the interpretability of the trial. We will test the hypothesis that REBIL will have high acceptability (80% retention), high therapist fidelity (95% of elements and 90% of dose delivered), high adherence (80% of modifications in use), and low safety risk (no increased rate of falls or health care use compared to control group) at 6 months. The second objective will help us select optimal endpoints for a large, pragmatic trial. We will test the hypothesis that REBIL is superior to usual care at 6 months on the primary and exploratory endpoints. We followed the Standard Protocol Items: Recommendations for Interventional Trials guidelines to present the protocol.

Methods

Trial design and setting overview

This study is a single-blinded randomized controlled trial to examine the feasibility of REBIL to increase home and community participation and prevent falls in PAwLTPD. All participants will receive an initial, 75-minute, in-home evaluation and will then be randomized to either the treatment group or the waitlist attention control group. Participants in the treatment group will receive the tailored home modification intervention (i.e., REBIL) provided by trained occupational therapists. Interventionists will be trained for approximately 4 hours with didactic classroom or online training and self-directed readings. Certification will include a written test and supervised completion of each visit following the intervention protocol. Participants in the control group will receive interview visits provided by a trained occupational therapist or trained occupational therapy student remotely for an equivalent amount of time to the treatment group. The control group interview includes a series of guiding questions under the following topics: perceived neighborhood environment, community participation, physical activity, and effects of the COVID-19 pandemic on participation. The waitlist control group will be offered the intervention after the 6-month follow-up is completed. All follow-up assessments will be conducted by trained raters blinded to group allocation. All study procedures were approved by the institutional review board at [University].

Recruitment and eligibility

To reflect the larger PAwLTPD population, we are recruiting potential participants through various sources, including (1) members of a statewide community-based research network (Minor et al., 2020), (2) participants who have completed a survey from a related prior project, and (3) word of mouth. A trained research team member will contact participants and use a phone script to provide detailed information about the study, discuss potential problems that could interfere with participation, answer any questions, and screen their eligibility. The eligibility criteria include: (1) age 45–65 years, (2) self-report of difficulty with two or more daily activities using the Older Americans Resources and Services (OARS) activity of daily living (ADL) scale, (3) onset of a physical disability (e.g., spinal cord injury, cerebral palsy, post-polio syndrome, stroke, amputation) at least 5 years prior to participation, and (4) residence within 60 mi of our research lab. We will exclude those currently institutionalized. The occupational therapist will obtain e-consent from all participants before the baseline visit.

Randomization and blinding

Upon completing the initial evaluation (details of instruments are provided in the outcome measurement section), an occupational therapist will elicit randomization. Participants will be allocated using a 1:1 ratio by block randomization sequences generated a priori using a computerized probability model. The allocation ratio will be maintained at periodic intervals. Groups will be balanced for race and sex. Randomization sequence concealment will be achieved by using Research Electronic Data Capture (REDCap), a secure, web-based application designed to support data capture for research studies. Outcome raters and data analysis personnel will be blinded to group allocation. However, the nature of the intervention does not allow for interventionists and participants to be blinded to group allocation.

Intervention

REBIL is a complex intervention informed by two evidence-based interventions, COMPASS (Somerville et al., 2019) and HARP (Stark et al., 2021). REBIL incorporates a set of effective treatment strategies to address issues of participation in home and community settings and to prevent falls in PAwLTPD. REBIL was developed using a community-engaged approach, including data from a cohort survey, focus groups, and key informant interviews to minimize potential roadblocks to uptake and adherence (see Appendix for themes generated from the focus groups and interviews and the corresponding adaptations to REBIL). The treatment will be provided by an occupational therapist and includes five visits, 75-minutes each, over 8 weeks. Sessions are spaced 1–2 weeks apart. Key elements of the intervention are described below.

We used an environment-press model to guide the treatment (Lawton and Nahemow, 1973). This model posits that removing environmental barriers and hazards and adding supports (e.g., handrails on the stairs, using accessible transportation) matched with the individual’s unique abilities and limitations will improve the outcome of daily activity performance, reduce falls, and improve community participation (Lawton and Nahemow, 1973). The two essential components of REBIL are (1) removing environmental barriers and fall hazards in the home and community and (2) strategy training. During the intervention, participants will identify activities in the home and community with which they have difficulty. The occupational therapist and the participant will collaborate to identify environmental barriers that increase the difficulty of the activities as well as fall risks present in the home and community. The occupational therapist will use strategy training, a process in which the participant and the occupational therapist work together to identify and implement compensatory strategies (e.g., adaptive equipment, architectural modifications, task modification) to remediate barriers and fall hazards in the home and community. Strategy training facilitates long-term effects of the intervention by giving the participant the self-efficacy to independently problem-solve barriers and hazards after formal treatment has ended.

The intervention consists of three active ingredients: (1) tailoring, (2) motivational enhancement (ME), and (3) active practice. First, the occupational therapist will tailor the compensatory strategies to each individual’s pattern of functional loss and unique home and community environments. Tailoring is necessary given the unique abilities and environments of each individual participant (Stark et al., 2017), and control over changes to an individual’s home environment has been demonstrated to increase treatment adherence and acceptance (Cumming et al., 2001). The therapist will use a shared decision-making process with the participant to discuss expected outcomes and determine the final prescription based on the participant’s choice. Although problem areas addressed and hazards removed are participant-specific (i.e., tailored), the process to identify and address the problems is systematic and reproducible. Second, the therapist will use ME, a client-centered directive method for enhancing motivation to promote behavioral changes, to negotiate a change plan. ME has been shown to improve treatment adherence (Cummings et al., 2009) and is used in this intervention to help increase long-term use of implemented strategies. Third, the therapist will demonstrate the use of modifications and/or equipment and fall prevention strategies, then the participant will practice completing daily activities with the therapist. The active practice may include caregiver training if appropriate. Home modifications coupled with active practice of daily activities and the use of fall prevention strategies have been shown to improve functional performance in individuals with disabilities (Stark et al., 2017; Figure 1).

Figure 1.

Figure 1.

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The logic model and key components of REBIL intervention.

EB: evidence-based; COMPASS: community participation after stroke; HARP: home hazard removal program.

A treatment manual has been developed following the stage model proposed by Carroll and Nuro (2002). The manual includes a conceptual framework, standardized assessments, treatment goals, intervention elements, and delivery format, including a visit-by-visit grid outlining the key components of each visit.

Outcome measurement

A summary of outcome measures used can be found in Table 1. To examine the feasibility of the study, we will evaluate the process outcome based on reach, fidelity, adherence, cost, and safety. Reach will be evaluated by recruitment and retention. The effort of recruitment from study team members will be evaluated by referrals, time to achieved recruitment goals, and qualitative reports about recruitment issued from the study team, assessed using a recruitment log documented on REDCap. Retention will be evaluated based on dropout rates (i.e., attrition) and reasons for declining participation in the study. Fidelity will be evaluated by comparing the dose of the intervention received by participants (number of minutes, number of sessions, and proportion of recommendations implemented) to the planned dose. We will use a visit-by-visit checklist outlining the pre-, mid-, and post-treatment visit requirements for each treatment session. The therapists will check off the action once it is completed. Initial treatment adherence will be evaluated at the last visit as the number of recommendations implemented per recommendations suggested. Long-term adherence will be calculated as the number of recommendations still used 6 months post-intervention per recommendations implemented. We will also examine reasons for abandonment of home modification strategies. Cost of service provision in the treatment group will be evaluated by time and materials spent. We will record occupational therapist time (direct and indirect) and contractor time to provide service. The hourly wage of the contractor will be estimated using wage rates for [area] as reported by the US Bureau of Labor Statistics (National Compensation Survey, 2013). All costs of modification equipment will be retrieved from invoices. Costs will be estimated from the payer perspective (e.g., Medicare allowable will be used to estimate covered clinical encounters) (Gold et al., 1996). Safety will be evaluated by the number, rate, and severity of falls, as well as health care utilization for participants in both groups. Falls will be collected using a monthly Fall Report during the 6-month follow-up period via phone or online survey. The rate and severity of falls will be calculated using a standardized algorithm established by Tinetti et al. (1988). We will also use a health care utilization Form to track the number of emergency room and physician visits, number of hospitalizations, and number of days in therapy.

Table 1.

Summary of outcome assessments.

Outcome Measure Explanation Collection time point
Process outcome: Feasibility Reach Referrals, time to achieved recruitment goals, recorded recruitment issues; dropout rate, reasons for declining participation Recruitment; retention T1, T2, T3
Fidelity Number of minutes, number of sessions, and proportion of recommendations implemented Dose of the intervention received by participants per plan Tx
Adherence Number of recommendations implemented per recommendations suggested; reasons for abandoning home modification strategies The continuous use of home modification strategies provided T3
Cost Recorded occupational therapist time (direct and indirect); contractor time to provide service; cost of modification equipment Time and materials spent Tx
Safety Falls report; health care utilization form Self-report of falls; health care utilization T2, T3
Primary endpoints: Occupational performance and fall hazards Community participation Reintegration to Normal Living Index Self-report measure to assess the extent to which a person is able to complete normal life activities T1, T3
ADL/IADL performance and environmental barriers at home In-home occupational performance evaluation Performance-based assessment focusing on performance of and barriers to participant-chosen in-home activities (among 44 listed activities) T1, T3
Environmental fall hazards Westmead Home Safety Assessment short form Checklist of fall hazards in different areas of a house/apartment T1, T3
Exploratory outcomes: Activity participation, falls, fall prevention behaviors Activity participation Nine participation domain measures; List of 25 different activities Provides descriptive information on activity participation and types of help needed; activities in four areas of participation (routines, recreation, responsibilities, and relationships) T1, T3
Falls Monthly fall report Self-report of falls, includes health care utilization T2, T3
Fall prevention behaviors Falls prevention strategy survey Addresses protective behaviors related to fall risk among adults; reflects the frequency with which respondent engages in 12 different fall prevention behaviors T1, T3
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T1: baseline; T2: 6-month follow-up period; T3: 6 months post-evaluation; Tx: treatment; ADL/IADL: activity of daily living/instrumental activity of daily living.

The primary efficacy outcomes of the study include community participation, ADL and instrumental ADL (IADL) performance, impact of environmental barriers on ADL/IADL performance, and environmental fall hazards. Community participation will be measured using the Reintegration to Normal Living Index (RNLI; Daneski et al., 2003; Wood-Dauphinee and Williams, 1987). The RNLI is a self-report measure to assess the extent to which a person is able to complete normal life activities. It contains 11 items to quantify participation in activities such as basic self-care, functional mobility, work and school, recreational pursuits, and travel in the community. The RNLI has a total score range from 0 to 100, with a higher score indicating a higher level of normal living. ADL/IADL performance and environmental barriers will be measured using the In-Home Occupational Performance Evaluation (I-HOPE; Stark et al., 2010). The I-HOPE is a performance-based assessment focusing on the performance of 44 in-home activities plus two activities that participants can freely fill in. The participant chooses and prioritizes activities that they have difficulty with or that they worry about having difficulty with in the future. Then the participant rates their performance and satisfaction with their chosen activities, using a 5-point scale for both. Last, the therapist observes and rates the participant’s performance and barriers to performing the chosen activities. The I-HOPE contains four subscales, including limitations in daily activities, self-reported performance, satisfaction with the performance of problematic activities, and the magnitude of environmental barriers that influence performance. These four subscales have high internal reliability (Cronbach α = 0.77–0.78) and inter-rater reliability (ICC = 0.94–1.0) (Stark et al., 2010). Environmental fall hazards will be identified using the Westmead Home Safety Assessment (WeHSA) short form, a performance-based assessment of fall hazards in different areas of the home (e.g., bedroom, kitchen, bathroom, driveway). This instrument has established content validity and has shown good-to-excellent inter-rater reliability (Clemson et al., 1999).

The exploratory efficacy outcomes of the study include self-reported activity participation, falls, and fall prevention behaviors. Activity participation will be measured using the Nine Participation Domain Measures, which was created based on (1) the Health and Retirement Study Activity Supplement and (2) the Panel Study of Income Dynamics, and the Midlife in the United States Survey (Lee et al., 2019; Morrow-Howell et al., 2014; The University of Michigan, 2015). The Nine Participation Domain Measure includes descriptive information on activity participation and types of help needed. We modified the measure to allow for additional qualitative responses describing barriers and limitations to activities. We will also use the Participation Scale to measure activity participation. The Participation Scale is a list of 25 different activities in four areas of participation: routines, recreation, responsibilities, and relationships (Yorkston et al., 2008). Participants will rate their participation frequency, importance, and self-efficacy in completing the activity on a 5-point Likert-type scale. As mentioned previously, falls will be recorded using a Fall Report for 6 months. Fall prevention behaviors will be measured by the Falls Prevention Strategy Survey, which addresses protective behaviors related to fall risk among adults (Finlayson et al., 2009). Response options reflect the frequency (never, sometimes, regularly) with which the respondent engages in 12 different fall prevention behaviors.

Covariates of interest include demographics and level of depressive symptoms. Basic demographic information will include age, race and ethnicity, sex, gender identity, level of education, marital status, primary disability, use of a mobility device, and living arrangement. Level of depressive symptoms will be measured using the patient-reported outcomes measurement information system (PROMIS) Depression Scale–Short Form 8-item. Total raw scores will be converted to uncorrected t-scores. A higher score indicates a higher level of depressive symptoms. A score of 50 is the average for the US general population with a standard deviation of 10 (Schalet et al., 2016). A study flow diagram is presented in Figure 2.

Figure 2.

Figure 2.

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Study flow diagram.

Data management and monitoring

All collected data will be entered, managed, and stored in REDCap. The data and safety monitoring board (DSMB) consists of the principal investigator (PI), study coordinator, biostatistician, and data manager. The DSMB will have access to the final dataset. The PI, study coordinator, and data manager will be responsible for developing and implementing data management procedures including data flow and procedures for data entry, error identification and correction, and preparation of quarterly reports on enrollment and participant status (e.g., withdrawals). The PI and study coordinator will also monitor adverse events and prepare independent safety monitoring body reports. Because risk in the proposed study is considered minimal, the DSMB will meet semiannually to review overall study progress, safety, and efficacy. At each meeting, the PI will review the progress of the data collection process, evaluate any unanticipated or anticipated effects of study participation, and monitor the integrity and accuracy of the data generated from the study. The PI will present study progress and interim analyses made by the biostatistician at each meeting. The PI will also be responsible for executing recommendations made by the DSMB. If more frequent monitoring is required, it will be implemented accordingly.

Statistical methods

First, we will conduct a basic descriptive analysis to examine the distributional characteristics of each variable and inter-correlations among variables. Second, we will determine whether participants are representative of the eligible population by comparing baseline sociodemographic characteristics (e.g., age, gender, education) of the study population with those who were eligible to participate in the study but declined to participate. Continuous variables will be analyzed with the appropriate parametric or nonparametric methods (e.g., unpaired t test or Mann–Whitney U test) to test for differences between the participants in the study and those who refused. Discrete variables will be analyzed with the appropriate nonparametric test (e.g., chi-square test of association) to test for differences between the participants in the study and those who refused. Next, we will compare baseline characteristics between the intervention group and control group using unpaired t tests and chi-square tests. If statistical assumptions are not met, we may use Mann–Whitney U or Fisher exact tests.

We will examine the process data before the efficacy analyses (Oakley et al., 2006). Aim 1 is to examine the feasibility of a larger trial by conducting a process evaluation. We will conduct between-group comparisons of process endpoints collected at 6 months (e.g., health care utilization rate, dosage delivered, and adherence rate) using unpaired t tests or chi-square tests. We will also compare the characteristics of participants who completed the assigned intervention to those who did not for differences in disability severity and comorbidities. Descriptive statistics will be used for costs per participant and adherence.

Aim 2 is to test the hypothesis that REBIL will result in greater improvements in participation and daily activity performance than the control group at 6 months post-intervention. Mixed-model repeated-measures analysis of variance will be used for longitudinal analyses of variables measured at more than two time points (i.e., RNLI, I-HOPE, and WeHSA). The focus of this analysis will be the significance of the interaction between group and time. Hypotheses will be tested for interactions in terms of the equality of changes over time in the intervention and control groups. Contrasts will be used in testing the null hypothesis that changes between two specific time points in one group are equal to corresponding changes in the other group. I-HOPE scores will be analyzed with analysis of covariance with the 6-month score as the dependent variable and the baseline value as the covariate. For all analyses, we will determine whether required distributional and model-specific assumptions are satisfied. To explore potential trial endpoints, we will select the best independent indicator of participation and compare the measures for sensitivity and statistical efficiency with data collected 6 months after the intervention.

Sample size calculation

Although statistical significance is not the goal of this study, we have estimated a sample size using a power analysis for a two-sided, two-sample, unequal-variance t test using G*Power with a significance level of 5% and power of 80% (Faul et al., 2007). The sample size calculation includes a correlation between baseline and follow-up measures and is based on analysis of change scores, which is equivalent in efficiency to the proposed analytic model. Data were used from a pilot study with a total of 113 community-dwelling older adults. We estimated the sample size for the mechanism of action (reducing environmental barriers). Environmental barrier mean changes in intervention and control groups were 26.28 (SD = 18.03) and 10.09 (SD = 22.27), respectively. A sample size of 50 (25 in each group) is needed to provide 80% power.

Dissemination

On publication of the study results, participants will be invited to attend one of three repeated community meetings, during which the results of the study will be reported. Participants will receive a mailing announcing the meetings and summarizing the study findings. The meetings will be held during daylight hours in a fully accessible auditorium with accessible parking and access to public transportation. During the meetings, a written report will be distributed, and the results will be presented by the study investigators, followed by a question-and-answer period. Refreshments will be served, and participants and their family members will be thanked for their generous support of the project.

Discussion

Currently, there are no services to support aging in place and preventing falls for PAwLTPD. It is also unclear whether modifying environmental barriers for people with disabilities who are in the earlier stages of the aging process could be an effective mechanism to reverse the negative participation trajectory. Given that the existing literature (Gray et al., 2008; Vos et al., 2015) and data show high fall rates and downward participation trajectories in PAwLTPD, there is a strong need for an intervention to support safe participation at home and in the community. This study proposes to examine the feasibility and preliminary efficacy of a complex intervention (REBIL), which was informed by two evidence-based interventions (COMPASS and HARP), to address these service and knowledge gaps.

REBIL is novel given that it is, to our knowledge, the first intervention of its kind to target PAwLTPD. Existing fall prevention programs target the older adult population and may not fully meet the needs of PAwLTPD. Further, REBIL combines fall prevention components into the home modification intervention, as not all current home modification programs are equipped with fall prevention components (Clemson et al., 1999). We anticipate that the outcome will yield high acceptability (80% retention), high therapist fidelity (95% of elements and 90% of dose delivered), high adherence (80% of modifications in use), and low safety risk (no increased rate of falls or health care use compared to control group) at 6 months. Participants will have higher levels of community participation, have higher scores in ADL/IADL performance, and experience fewer environmental barriers. Participants’ homes will also have fewer fall hazards. However, as this is a study protocol that will be implemented, there may be potential issues that we cannot foresee. For example, attrition over the 8-month study period is unknown and is not within the control of the study design. If the attrition rate is high or a pattern is found in the reasons for attrition, we will need to re-evaluate the design of the study; attrition may also limit study findings.

This study will raise awareness among occupational therapy practitioners and other rehabilitation professionals regarding the current state of service for PAwLTPD. It will demonstrate the use of an evidence-based home modification program incorporating a fall prevention element to enhance daily activity participation and decrease falls and related injuries for PAwLTPD. Study findings will serve as preliminary evidence for occupational therapy community practice. The study outcome will also lay the groundwork for future large, pragmatic trials. As knowledge regarding the possibility of early intervention for preventing downward participation trends in PAwLTPD is still unclear, this study has the potential to answer this question. Although this study is proposed for use in the US, it has the potential to be implemented in other countries in the future, as issues regarding daily activity participation and fall prevention for PAwLTPD are global.

Acknowledgments

We also thank Marian Keglovits, OTD, MSCI, OTR/L, for the review and feedback and Katelyn Storey for helping to format citations and tables.

Appendix.

This table presents the themes generated from the focus groups and informant interviews and their corresponding adaptation for the REBIL intervention.

Themes Description How it informed REBIL
Aging with disability Includes onset of new weakness and fatigue, secondary health conditions, and functional impairments, as well as declines in ADLs and IADLs directly or indirectly related to the underlying cause of disability. Inclusion of strategies for identification of new functional impairments during the assessment process (algorithm, training module)
Strategy training for the individual to address future changes associated with aging with disability
Education on aging with a disability in interventionist training manual
Additional health issues Includes onset of new disease and/or injury and health complications or exacerbations Education on falls
Comorbid condition assessment
Home hazard removal
Falls behavior assessment
Strategy training addressing functional impairments associated with new health issues
Attitude/coping and self-management Includes positive or negative attitudes and coping or management skills, as well as desire for independence Strategy training for increased safety awareness in ADL/IADLs
Provision of resources through the technical assistance helpline and training to access resources to enable independence
Social isolation versus social connection Includes positive social connectedness and participation Community participation goals supported by intervention
Inclusion of caregivers
Use of trained experts available on a technical assistance helpline
Lack of financial resources and/or lack of access to health care Includes funding for services Modifications paid for by program
Technical assistance line staffed by experts to connect with health care resources and financial support
Social services and supports Includes “unmet needs” for services and supports as well as the provision of services and supports, such as with ADLs, IADLS, home modifications, personal assistance service (PAS), and technology Technical assistance helpline staffed by experts to connect with resources to fill unmet needs
Strategy training to identify barriers and potential solutions
Professional assistance in identifying appropriate supports for unmet needs
Environmental and accessibility barriers Refers to built environment and/or systemic and policy barriers that affect access to information and resources to support independent living and participation Information provided in accessible manner during intervention
Strategy training on identifying and reducing environmental barriers to participation in the home and community
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Footnotes

Research ethics: This study was approved by the Institutional Review Board at Washington University in St. Louis on November 6th, 2017 (IRB number: 201710186).

Patient and public involvement in data: During the development, progress, and reporting of the submitted research, patient and public involvement in the research was included at all stages.

Consent: The occupational therapist will obtain e-consent from all participants before the baseline visit.

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study is developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90DPCP0001). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this manuscript do not necessarily represent the policies of NIDILRR, ACL, or HHS, and one should not assume endorsement by the Federal Government.

Contributorship: SWC was involved in conducting the literature search and writing the manuscript and will be involved in follow-up outcome rating, data management, and interim data analysis. ES was involved in obtaining ethical approval, participant recruitment, and data management and will be involved in obtaining informed consent, initial evaluation, and intervention provision. MD was involved in writing the manuscript. SS was involved in securing funding and conceiving the idea of the project, protocol development, and will be involved in monitoring the operations of the study and ensuring compliance with quality-assurance requirements, preparing interim reports, and publication of study reports. All authors have reviewed and edited the manuscript and approved the final version of the manuscript.

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