People with disabilities participate in community settings less than peers. This occurs due to physical and psychosocial barriers. One area of regular community participation is in faith settings, however there is a lack of evidence on how to support inclusion in these settings. This systematic review identifies what supports people with disabilities and their caregivers reported that assists with participation in faith settings. A review was conducted and articles were evaluated. The studies were analyzed for specific supports and then compared to determine the frequency at which the supports were mentioned. It was concluded that physical accessibility and a welcoming, supportive attitude were the supports mentioned most often. Two out of the three top results represent low-to-no cost supports to increase inclusion.
For people with disabilities, community participation is considered an important indication of positive health outcomes and overall rehabilitation (Chang et al., 2013). People with disabilities often experience decreased community participation due to a variety of barriers which can result in decreased quality of life, mental health, overall health, and social outcomes (Amado et al., 2013; Chang et al., 2013). According to the American Occupational Therapy Association (AOTA), “all people, regardless of abilities, should have access to, choice of, and an opportunity to participate in a full range of community activities” (Ideishi et al., 2013, p. 1). According to AOTA's Occupational Therapy Practice Framework (2014, p. S21), community participation is defined as “engaging in activities that result in successful interaction at the community level (e.g., neighborhood, organization, workplace, school, religious or spiritual group).”
Additionally, the World Health Organization's International Classification of Functioning, Disability, and Health (ICF) (2001, p. 16) lists the importance of considering “community, social, and civic life” when looking at activities and participation of an individual when considering the overall impact of disability The ICF encourages examination of barriers and facilitators to participation when looking at the environmental impacts on disability (World Health Organization, 2001). In a world where people with disabilities are increasingly able to be physically included in different settings, the focus has transitioned to social inclusion as well (Amado et al., 2013). For people with intellectual and developmental disabilities (IDD), physical inclusivity is often not the main barrier to participate in community settings (Amado et al., 2013). The United Nations Convention on the Rights of Persons with Disabilities states that social inclusion or participation is a right and an obligation for society (United Nations, 2006).
One area of regular and ongoing community participation for a majority of people in the United States is within faith settings (Kessler Foundation & National Organization on Disability 2010). According to Boswell et al., (2007) participating in faith traditions can provide people with disabilities with purpose and meaning, connections with their community, a place to express creativity, and a place to experience acceptance. Minton and Dodder (2003) reported that people with disabilities express a desire to participate in religious activities. However, it is well documented that people with disabilities and their families participate less in faith-based settings; this is due to a variety of barriers (Kessler Foundation & National Organization on Disability, 2010; Poston and Turnbull, 2004). Barriers identified in the literature are physical and psychosocial in nature. Attitudinal barriers, a lack of understanding, acceptance, and support have been noted in various studies (Ault et al., 2013a; Ault et al., 2013b; Carter et al., 2016). Many position statements, professional opinion papers, and studies which use religious leaders and congregants as participants, call for the need to increase inclusion for people with disabilities in faith settings (Carter, 2016; Collins & Ault, 2010; Collins et al., 2001; Goldstein & Ault, 2015; McGee, 2010; Poston & Turnbull, 2004; Richie, 2015; Slocum, 2016). However, only recently has research included the perspectives of those with disabilities or family members of people with disabilities in identifying supports for participating in faith settings. There is a mantra from the disability community when discussing disability policy and research that says “nothing about us, without us” that encourages those enacting change to include voices from the disability community (Scotch, 2009). Therefore, the aim of this systematic review is to examine supports to participation in faith settings as identified by people with disabilities or their caregivers and families. The question that guided this review is: For people with disabilities or their families, (Population), what supports increased participation (Intervention) in faith-based settings (Context)?
A systematic literature review was conducted as outlined in the following sections. It was conducted by two experienced occupational therapists. The two researchers conducted the review independently and then compared results until a consensus was reached regarding the inclusion of articles and analysis following the four-step process of Gough et al., (2012). This four-step approach included a systematic search, a screening of the literature, appraisal of literature, and data extraction and synthesis.
The systematic search stage began by accessing the following online journals: The American Journal of Occupational Therapy (all volumes) and the databases EBSCOhost, Cochrane Reviews and PubMed using the specific search engines: Academic Search Complete, CINAHL/CINAHL Full Text, ERIC, Health Source, MEDLINE Psychology and Behavioral Sciences Collection, and Psych Info. This comprehensive search included all of the previously listed databases which have been known to contain information regarding disability research. Searches from the date of inception till present time of all the databases were used. The only limits utilized were for articles to be written in the English language and peer-reviewed. Various interchangeable terms were utilized to identify “inclusion” and “participation” as well as various terms to encapsulate any sort of faith participation. For the purposes of this study, research discussing all types and denominations of faith-participation were considered. Boolean phrases and the use of an asterisk with roots of words assisted with expanding the search. The following search terms were utilized:
Disabilit* OR Develop* Disabilit*
Inclus* support* OR inclusi* OR participate* OR integration
Church OR religio* OR faith OR Worship OR congregation
NOT: school, education, employ*
A hand search was also completed with relevant articles to identify any further studies that were not identified through the online searches. The following inclusion and exclusion criteria were applied:
Inclusion: All types of disability.
Exclusion: Articles that did not specifically include people with disabilities or their caregivers as research participants, community participation outside of church/religious participation, expert opinion, and unpublished dissertations.
Screening of the Literature
After the comprehensive literature search, a screening process was utilized to pare down the relevant information (See Figure 1 for the PRISMA flow diagram). A total of 441 references were identified through EBSCOhost using the various search engines. No additional references were identified through PubMed, Cochrane Reviews, the American Journal of Occupational Therapy, or through hand searches. Of those articles identified, 357 were excluded based on title and/or abstract of the article due to not being relevant to this systematic review. Eighty-four full-text articles were then accessed to see if the study met eligibility criteria, of which 79 did not. Of those that did not meet eligibility criteria, 21 were expert opinions, essays or literature reviews, 54 were deemed to be not relevant based on further inspection as they did not relate to the topic of interest, and four were excluded because the subjects did not include people with disabilities or caregivers of people with disabilities. A total of five research articles met inclusion criteria and were reviewed, see Table 1.
Appraisal of Included Studies
The appraisal for each study included in this review was based on the Mixed Methods Appraisal Tool (MMAT). This tool allows studies that are qualitative, quantitative or mixed-methods in nature to be compared based on methodological quality (Pluye et al., 2011). See Appendix A for the application of the MMAT for the studies included in this review. All studies were included regardless of methodological quality for this review. A percentage of MMAT criteria met was utilized to objectively compare study quality across methodological domains.
All of the studies reviewed included clear objectives of the study and utilized data collection that sufficiently answered the research questions. For the qualitative studies included, both studies utilized sources and data analyses that were relevant to address the research questions.
The MMAT is comprised of four questions and is meant to be a tool to compare qualitative, quantitative, and mixed-methods studies. The questions, while they assist with analyzing the quality of a research study, are limited and not comprehensive for any one type of methodology. The researchers included the analysis table in Appendix A to narratively highlight some of the strengths and weaknesses of each study following the MMAT criteria to provide a more comprehensive analysis of the studies. The translational science of increasing inclusion for people with disabilities in faith settings is in its infancy and thus all peer-reviewed literature has been deemed valuable for this systematic review.
Data Extraction and Synthesis
Information regarding the study design, population, respondents, and a summary of results were extracted by these independent authors from each included article and are detailed in Table 2. The five studies were manually analyzed to determine what supports the respondents listed as being helpful for participation in faith settings for people with disabilities. The results were then compared across studies to identify common supports. The supports were compared between the two researchers until consensus was met to ensure agreement of themes. All supports were then listed in a table and the frequency of a given support were totaled. This information can be found in Figure 2.
The total study sample (n = 1,012) from all of the articles that were reviewed included 945 respondents that identified as having a disability or being the caregiver of a person with a disability. The Griffin et al., article (2012) was the only study included that also had respondents that were not individuals or caregivers of a person with a disability. In this study, the rest of the respondents (n = 67, or 47% of study participants) were leaders from various faith communities such as pastors or other lay leaders. All of the studies included respondents that identified from various faith traditions (e.g. Buddhism, Judaism, Mormon, Quaker) but the majority of respondents were from Christian faith backgrounds, including Catholic and Protestant traditions. The participants from all of the included studies were largely individuals or families of individuals with IDD (n = 1,261, 93%). Other identified disabilities included in the articles were: traumatic brain injury (n = 20, 1.4%), orthopedic impairment (n = 17, 1.2%), emotional or behavioral conditions (n = 42, 3.1%), and significant health impairment (n = 16, 1.1%).
Ault et al. (2013b) used a qualitative, open-ended response survey while the other studies utilized quantitative close-ended surveys (Ault et al., 2013a; Carter et al., 2016; Griffin et al., 2012). The Hobbs et al. (2016) article utilized individual interviews for data collection. All of the studies were conducted within the United States and were published between 2012–2016.
For further analysis, the findings were then categorized by the researchers into two groups—physical accommodations and social-emotional accommodations (Table 3). The further classification of the supports can be used for translational change for congregations as practical ways to increase participation for people with disabilities in their congregations. Often, the discussion of inclusion for those with disabilities centers around physical accessibility of the facilities. Faith-based institutions are currently exempt from the Americans with Disabilities Act (ADA; 1990) which means they are not required to follow physical accessibility guidelines to eliminate barriers for people with physical disabilities. Additionally, congregations may reside in historic buildings where options for making physical accommodations may not be feasible or may be too costly. This researcher wanted to highlight that improving physical accessibility of a faith-setting is only one of the various supports mentioned in the literature. Likewise, there are many supports that have been mentioned in the literature that include low-to-no cost for faith based settings to implement to support people with disabilities. All of the supports to participation mentioned were extracted from the results of the included articles. See Figure 2 below for a chart that displays the frequency of supports mentioned in the literature.
The top three supports mentioned throughout the articles were physical accessibility, welcoming and positive attitudes, and education and training for congregants. These three supports were equally mentioned in four out of the five assessed articles as helpful for increasing participation for people with disabilities. While physical accessibility isn't always a problem for people with IDD, the top mentioned supports are very applicable in supporting participation for people with IDD.
Other supports mentioned in three of the five articles include: parental support during worship services, parental support outside of worship services, spiritual counseling or counseling groups, specialized worship services for people with disabilities, and accessible materials. All of these aforementioned supports were listed by individuals and families of individuals with IDD as helpful to increase their participation. Supports mentioned in two out of the five articles included: support groups, the role of a leader or advocate within the congregation to support the person with a disability, and volunteers, peers or tutors to assist people with disabilities. Other supports mentioned in only one of the reviewed articles included: providing transportation support, providing financial support, offering roles within the congregation that a person with a disability could fulfill, providing resource centers, having a relationship with a disability community or organization, providing modified services, providing supports for vocational training, encouraging parents of people with disabilities to take a leadership role to educate the community, and providing adaptive social events or teams.
The supports mentioned in all of the articles were further broken down into physical and social-emotional supports by the researchers to assist with application. Some supports such as positive and welcoming attitudes and providing specific roles which people with disabilities can participate in, are of little-to-no cost to a congregation and could be very practical first steps for a congregation interested in increasing participation for people with IDD. Additionally, one of the supports listed, having an identified leader or advocate within the congregation, could help families and other leaders in the church to bridge the gap and address some of the barriers and needs that people with disabilities and their families may encounter.
While physical accessibility was a top mentioned support, it was not the only support mentioned in a majority (4/5) of the articles. One of the themes that reoccurred throughout most of the articles was the theme of congregations having positive and welcoming attitudes towards people with disabilities (Ault et al., 2013a; Ault et al., 2013b; Griffin et al., 2012; Hobbs et al., 2016). This highlights the importance of attitudinal shifts that still need to occur within our society to support participation for people with disabilities. Attitudinal barriers as a limitation to participation in society for people with IDD has been well documented (Anaby et al., 2013; Centers for Disease Control and Prevention, 2017; Law et al., 2007; Rimmer & Rowland, 2008). According to the results of this systematic review, it is understood that these attitudinal barriers that people with disabilities experience in society, also occur within faith environments. Changing thoughts and attitudes towards people with disabilities often happens through education and relationship, both of which could be of little-to-no cost to a faith institution as well.
Three-out-of-five articles included both the need for parental supports during and outside of worship services (Ault et al., 2013a; Ault et al., 2013b; Carter et al). A majority of parents (55.3%) polled in Ault et al. (2013b) reported being expected to stay with their child with IDD during worship services instead of allowing the child to attend the children's programming without the parent, thus impeding the parents' own faith participation as well. Parents and caregivers of children with developmental disabilities are at a higher risk of marital dysfunction, mental illness, and caregiver burnout (McConnell and Savage, 2015; Weiss, 2002). These risks can be exacerbated by isolation due to decreased participation in valued community activities, such as faith settings. Therefore, providing supports like respite or other assistance outside of the weekly worship services may have positive implications for the families and caregivers of individuals with a disability. Other inexpensive actions that can be taken include: spiritual counseling, specialized worship services, accessible materials, providing support groups, having a disability advocate in the community, providing peer tutors, establishing relationships with disability organizations, and providing resources to members.
One surprising finding in the Carter et al. (2016) article was that there was a large discrepancy between the number of supports rated by parents as being helpful and the number of supports actually offered at the respondents' respective congregations. This further highlights that people with disabilities and their families are not receiving enough support within their faith setting to participate to the extent of which they desire. Ault et al. (2013a) reported that almost one third (32.3%) of parents of people with disabilities have changed their places of worship due to their child not being supported or welcomed. Almost half (46.6%) of the parents surveyed had limited their own participation in a religious activity directly due to their child not being supported. Additionally, Carter et al. (2016) found a positive link between the number of supports offered within a congregation and the amount and duration of time that a family attends that congregation.
The implications for this systematic review are two-fold. The first implication is to demonstrate that research on community inclusion, and more specifically religious participation, for people with disabilities from their perspective is in its infancy and further studies need to be completed to determine how best to support this population. Secondly, this study describes important supports that faith congregations can put into place to increase participation for individuals with disabilities and their families.
Often disability inclusion is thought in terms of costly physical accommodations that may not be feasible or affordable for congregations. These researchers wanted to highlight that physical inclusion, which may include costly renovations, is only one support listed in the literature to increase participation for people with disabilities. Furthermore, these researchers found that many supports mentioned by people with disabilities and their caregivers or families included low-cost options which congregations could begin adopting more readily than some of the more expensive supports that were mentioned.
The supports were divided between “physical accommodations” and “social emotional accommodations.” The physical accommodations included supports or changes to the physical environment as well as social environment and these supports tended to be more costly. Whereas the social emotional accommodations included low-to-no-cost supports such as congregations having a welcoming/positive attitude towards people with disabilities, having leaders who are knowledgeable about various disabilities and who act as role models to support inclusion, and offering roles within the congregation that people with disabilities could fulfill. These supports to participation could easily be adopted into any congregation or community setting. The list found in Table 3 can further provide practical, evidence-based supports for those interested in promoting participation for people with disabilities in their congregation.
There are limitations to this study, beginning with the design of the studies chosen which have limited strength of evidence due to their survey design. While the author conducted a comprehensive search of the literature, only five articles were found that addressed this topic explicitly from the perspectives of people with disabilities or their caregivers. Thus, all studies found were included, regardless of level of evidence or quality to begin assisting congregations in ways to be more inclusive. Another limitation of this study is that it is difficult to compare results across studies. The authors tried to facilitate comparison by doing a comprehensive frequency count (Figure 2) of supports that were mentioned throughout all of the articles. Several supports were combined such as respite care which was included under “parental supports outside of worship services.” However, even with the frequency distribution provided, it is difficult to compare results across studies due to the various study designs and how results were reported. For example, even though most parents reported physical accessibility would be a top support for their congregation to have overall, it was listed between “not at all helpful” or only “a little helpful” for their family across studies since the majority of the respondents did not have an orthopedic impairment. Thus, the wide variation of needs for individuals with disabilities necessitates that these are broad suggestions, not specific to any one disability or condition, which may be seen as a limitation to this study.
Another limitation of this study is the concern for validity within studies. Many of the studies utilized instruments that were created by the researchers and not validated in populations prior to their respective studies. Thus, the tools that the authors utilized could have been biased, or could have missed valuable information. Additionally, with one of the qualitative studies (Hobbs, Bonham & Fogo), the actual format of the questions were not included, thus there could have been a leading question bias with the interview questions. Additionally, unpublished research articles and dissertations were not included in this systematic review which may have resulted in relevant research findings being omitted. Yet, the authors made every attempt to control for each limitation with their final goal to ultimately increase family participation in faith settings.
This is the first systematic review conducted on identifying specific supports to increase participation for individuals with disabilities in faith communities. The most frequent actions a group can make to increase participation for all members in faith-based settings are:
Offer welcoming/positive attitudes towards all members
Make the environment more accessible
Provide education and training to members
Offer parental support during worship services
Equip parents with support outside of worship services
Provide spiritual counseling
Host special worship services for people with special needs
Make available accessible materials
Provide support groups
Create the role of an advocate to support individuals with special needs
Come up with peer tutors, volunteers or hire assistants
Despite the limitations, this systematic review provides valuable information and insights into specific supports that congregations can provide to increase participation for individuals with disabilities. The World Health Organization's ICF model encourages clinicians to consider barriers and supports to participating in activities such as community life (2001). Until recently, participation in religious settings for individuals with disabilities has not been studied, yet remains an important part of most peoples' lives. Participation in religious communities can have a positive impact on one's physical and mental health (George, Ellison and Larson, 2009). Future research should include more rigorous and generalizable studies so that people with IDD can participate to the extent that they desire in congregations. Future studies should focus on evaluating the effectiveness of listed supports on increasing participation for individuals with disabilities in faith settings. Future research could also examine the impact of increasing participation in faith settings on satisfaction and quality of life measures for individuals with disabilities.
We would like to thank members of Valerie's dissertation committee—Dana Howell, Ph.D., OTD, OTR/L, FAOTA, Pat Kitzman, Ph.D., PT, Melinda Ault, Ph.D., and Kelly Leigers Ph.D, OTR/L. for their guidance and support.