Low vision rehabilitation services: Perceived barriers and facilitators to access for older adults with visual impairment

Abstract

Introduction

The aim of this study is to describe the barriers and facilitators to accessing low vision rehabilitation services in Massachusetts, USA, and determine differences between communities with and without existing low vision rehabilitation services for older adults with visual impairment.

Method

A sample of older adults with visual impairment (n = 64) from both communities participated in the study. Barriers and facilitators to accessing the services were explored through focus groups and prioritized during one-on-one interviews, which allowed for comparison between communities.

Results

Twelve themes were identified: (a) bureaucracy and funding (public policy); (b) public awareness and stigma (community); (c) services available, knowledge of providers, care coordination, transportation (organizational); (d) people and lack of awareness of family/friends (interpersonal); and (e) income, health status, knowledge, self-advocacy, and time (individual).

Conclusion

This study provides insights into the perceived barriers and facilitators of accessing low vision rehabilitation services for older adults with vision impairment living in Massachusetts, USA. Key findings indicate the need for improved awareness of these services at the provider and consumer level, coordinated care, increased education on the efficacy of occupational therapy low vision rehabilitation services, client-centered care provided when the client is ready to accept services, and service provision that addresses sociodemographic factors.

Keywords

Health services accessibility low vision rehabilitation occupational therapy

Introduction

Visual impairment affects nearly 20% of adults over the age of 65 years, worldwide (Lighthouse International, 2014; World Health Organization, 2010). Four of the five major causes of visual impairment and blindness are age-related: age-related macular degeneration, glaucoma, cataracts, and diabetic retinopathy (Lighthouse International, 2014). With an aging population, the rate of adults with visual impairment is expected to double by 2030 (Centers for Disease Control and Prevention, n.d.). Crews and Campbell (2004), found individuals with visual impairment were at an increased risk for greater functional limitations in daily activities, higher rates of systemic health conditions, increased social isolation, higher prevalence of depression, and increased risk of falls. Vision rehabilitation services may provide older adults with visual impairment compensatory strategies such as using tactile cues, electronic magnification, or organizational strategies to maintain health and independence. Despite service capacities, lack of access to vision rehabilitation services is present for all races and visual impairment categories (Matti et al., 2011; Overbury and Wittich, 2011; Overbury et al., 2008; Sloan et al., 2014). Lack of referral, knowledge of visual health, and awareness of rehabilitation services all affect utilization and functional outcomes (Casten et al., 2005; Proser and Shin, 2008).

A literature review was conducted to investigate the perceived barriers and facilitators to accessing low vision rehabilitation services (LVRS) for those with visual impairment. The following common barriers to accessing LVRS were identified: (a) public policy factors: lack of state and federal funding, and lack of coverage for prescriptive lenses or devices (Pollard et al., 2003; Sloan et al., 2014; Spafford et al., 2010; Walter et al., 2004); (b) community factors: perceived negative social implications, stigma (Matti et al., 2011; Overbury et al., 2008; Pollard et al., 2003; Spafford et al., 2010); (c) organizational factors: lack of awareness of available services and/or need for services by providers, education of providers, transportation, lack of communication between providers (Boyce et al., 2014; Overbury et al., 2008; Pollard et al., 2003; Spafford et al., 2010; Walter et al., 2004); (d) interpersonal factors: lack of understanding of visual impairment by friends and family (Overbury et al., 2008; Pollard et al., 2003); and (e) individual factors: socioeconomic status, education, lack of awareness of services, or efficacy of interventions (Matti et al., 2011; Overbury and Wittich, 2011; Overbury et al., 2008; Pollard et al., 2003; Southall and Wittich, 2012; Walter et al., 2004).

Services to individuals with visual impairment are underutilized by beneficiaries of service provision and are under supported by state and federal governments (P Saner, 2017, personal communication). One reason may be a lack of awareness of LVRS. Although medical and social service resources are available for older adults with visual impairment, poor utilization, variable access in certain communities, and limited integration of service streams inhibits access to services. Given these challenges, the purpose of this research was to identify the perceived barriers and facilitators to accessing LVRS for older adults with visual impairment in Massachusetts, USA, among people living in communities with (W) and without (W/O) existing LVRS. The Social Ecological Model (SEM) is a model that considers the interrelationships between public policy, community, organization, interpersonal, and individual factors and how these factors influence access to care (McLeroy et al., 1988). The Social Ecological Model was used to help understand the personal perspective of barriers and facilitators to accessing care and the relationship between community resources and health systems for older adults with visual impairment.

Methods

Study design

Qualitative descriptive inquiry was used to understand the perceived barriers and facilitators of older adults living with visual impairment through focus groups, and then further explored at the individual level through one-on-one follow-up interviews (Colorafi and Evans, 2016). With this low-inference descriptive methodology, data interpretation is less transformed and closer to the actual words and stories shared by participants, allowing for a clear description of the phenomena (Sandelowski, 2010). The researcher obtained written informed consent for participation in the research study from each individual. Consent forms were produced in large print or provided verbally.

Participants

Using stratified purposeful sampling, older adults with visual impairment who resided in select communities within Massachusetts with and without existing LVRS were recruited for the study. Communities were selected based on high prevalence of people with visual impairment and/or number of older adults registered as legally blind. For the purposes of this study, LVRS were defined as comprehensive services that addressed the functional implications of visual impairment, such as occupational therapy services within the clinic and/or community that supports safety and independence in the home and community (Kaldenberg and Smallfield, 2013). Members of low vision support groups (LVSG) located in these communities were invited to participate. LVSGs were selected as the source for participant recruitment as they are peer led and facilitated within community centers; members self-identify as having a visual impairment and are often self-referred. Before participation, LVSG leaders were educated about the purpose of the study and then communicated details of the study to members and identified members who may have interest in participating in the focus groups. Only members who identified as being interested in participating in the focus groups were contacted. To participate in the study, older adults needed to (a) self-identify as experiencing visual impairment, (b) be a member of an LVSG, and (c) be 50 years of age or older. Table 1 provides the number of participants in each focus group, the estimated prevalence of visual impairment, and number of older adults registered as legally blind by community type.

Table 1.

High and low resource communities.

Town	Number of participants	Estimated prevalence of visual impairment per 1000 adults aged ≥ 65 years	Number of residents registered as legally blind
W #1	8	47.46	241
W #2	8	56.64	271
W #3	7	44.50	211
W #4	7	47.14	483
W/O #1	7	51.77	463
W/O #2	11	49.33	458
W/O #3	9	57.21	81
W/O #4	7	46.18	150

Estimated prevalence rates were calculated using a synthetic estimation; number of residents registered as legally blind was provided by the Massachusetts Commission for the Blind, 2018.

W: with low vision rehabilitation services; W/O: without low vision rehabilitation services.

Data collection

Barriers and facilitators to services were explored through focus groups. The focus groups allowed for sharing of multiple perspectives and understanding the lived experience in accessing LVRS for older adults with visual impairment living in these communities. All participants then took part in a follow-up one-on-one interview, in which they prioritized key barriers and facilitators to accessing LVRS identified in the focus groups. Participants were also asked to identify additional barriers or facilitators not included in focus groups that they felt were important to include. Demographic and service utilization data was also collected.

Focus groups

Focus groups were conducted in conjunction with scheduled LVSGs in all communities to facilitate optimal engagement. Each focus group lasted 1–1.5 hours and included 7–11 people. The focus groups were organized via a semi-structured interview guide, which was facilitated by the Principal Investigator, to explore participant’s perceptions of barriers and facilitators to accessing LVRS. This guide, created by the researcher and informed by a review of the literature, was used to ensure procedural consistency among the focus groups. The discussion question in the guide explored the influences on health-seeking behavior and perceived influences on access to LVRS. A sample of the questions include, “As a result of your visual impairment, have you stopped doing activities that are important to you?” “Can you tell me about them and why you are no longer doing them?” and “In what ways do you think you could benefit from using services designed to help those with declining vision?” Focus groups were facilitated at LVSGs, and were audiotaped with permission and transcribed. Field notes were written during and immediately after each focus group and interview by the Principal Investigator. Audio-recorded interviews were transcribed verbatim for analysis.

Follow-up interviews

Follow-up interviews were conducted via phone, which was conducted by the Principal Investigator. Each interview lasted 1–1.5 hours. During the interviews, participants prioritized the barriers and facilitators they identified in focus groups and verbally completed demographic questionnaires about service utilization. The interviewer verbally shared the barriers and facilitators that were identified in the focus groups; then participants were asked to prioritize the top three to five key barriers and facilitators according to their own experiences with accessing LVRS. These responses were used to further identify key barriers and facilitators and permitted comparison between communities with and without existing services.

Data analysis

Initial coding was completed and organized using QSR International NVivo qualitative data analysis software (version 11). The researcher read each transcript twice for accuracy before initial data coding. The researcher took written notes and created memos throughout the coding process to record thoughts or questions that arose during the data analysis phase. As additional interviews were coded, a codebook with definitions was created; new codes were added throughout the coding process, and some codes with shared definitions were combined into one. Data collection continued and new codes were added until no new codes were identified. Once final codes were established, the codes were grouped into themes. The themes were confirmed with a second reader, a research assistant. The assistant reviewed two randomly selected transcripts from each category (communities with and without LVRS) using the same line-by-line coding method and recorded written notes and memos about codes. The researcher (Principal investigator) and research assistant discussed findings and identified discrepancies until a resolution was reached. Initial codes were reviewed and codes with similar ideas were grouped, and defined. These initial codes were confirmed and then grouped into themes, which were organized by the levels of the Social Ecological Model (McLeroy et al., 1988). These findings were then compared to the existing literature.

All participants took part in a follow-up interview to prioritize identified barriers and facilitators from an individual perspective. These identified key barriers and facilitators were documented for each participant and frequencies were calculated for all barriers and facilitator prioritized. The barriers and facilitators were ranked according to prevalence rate of response from participants. Prioritized barriers and facilitators were then compared between communities with and without LVRS.

Study trustworthiness

To ensure rigor, each member of the focus group was contacted via phone to schedule a follow-up one-on-one interview. This method provided opportunities for member checking, to verify accuracy and truthfulness of interpretation of focus group and explore emergent themes in greater detail (Birt et al., 2016). Each participant was asked to clarify questions that arose from initial focus group analysis and confirm key themes. In addition, the researcher practiced reflexivity to reduce potential bias. This included writing field notes during and immediately following each focus group, thus allowing for ongoing reflection. Reflexivity was also enhanced through use of a second reader for thematic development and refinement.

Findings

Sixty-four older adults (communities with LVRS = 30, communities without LVRS = 34) with self-reported visual impairment participated in the study. Please refer to Table 2 for participant characteristics. The age range of the 64 participants was 50–98 years of age, with a mean age of 74.70 (SD = 1.71) years. The majority of participants identified as female, white, living alone, and registered as legally blind (visual acuity of 20/200 or worse). Participants’ visual diagnoses varied and included age-related macular degeneration, glaucoma, diabetic retinopathy, corneal disorders, and a combination of visual conditions. The majority of participants received regular eye care, but few reported receiving comprehensive LVRS.

Table 2.

Descriptive characteristics of participants stratified by low- and high-resourced communities.

	Communities without LVRS (n = 34)	Communities with LVRS (n = 30)	Between group differences	Total (n = 64)
Demographic			P-value
Age, mean (SD)	74.29 (2.46)	75.17 (2.40)	0.42	74.70 (1.71)
Gender, %
Female	79	70	0.78	75
Male	21	30	0.62	25
Race, %
White	88.20	70	0.83	79.70
Non-White	11.8	30	0.18	20.3
Marital status, %
Married	34.71	26.67	0.33	31.25
Not married	65.29	73.33	0.33	68.75
Education, %
High school	52.90	46.67	0.72	50
Some college	17.65	16..67	0.92	17.60
College or higher	29.45	36.66	0.61	32.40
Service utilization
Legally blind, %	79.41	50	0.15	65.63
Low vision eye exam, %	38.24	40	0.91	39.06
LVRS, %^a	26.47	23.33	0.80	25

Only participants who received a low vision eye exam had received low vision rehabilitation services (LVRS).

Focus group results

Twelve themes were identified and organized into the five levels of the Social Ecological Model: (a) bureaucracy and funding (public policy); (b) public awareness and stigma (community); (c) services available, knowledge of providers, care coordination, and transportation (organizational); (d) people and lack of awareness of family/friends (interpersonal); and (e) income, health status, knowledge, self-advocacy, and time (individual). Please refer to Table 3 for the complete list of themes.

Table 3.

Emerged themes organized by level of the Social Ecological Model.

Level	Themes
Public policy	Bureaucracy and funding
Community	Lack of knowledge and stigma
Organizational	Lack of services Lack of knowledge–provider Lack of coordination of care Transportation Lack of individualized care
Interpersonal	Lack of support and lack of knowledge–others
Individual	Lack of knowledge–self Time Cost Readiness to accept services

Public policy

When discussing barriers and facilitators to accessing LVRS, several participants described the influences of public policy on accessing care. This included challenges created by the visual impairment continuum, financial, or age restrictions on service provision, and the lack of funding for service provision for older adults. When discussing the continuum of visual impairment, one participant responded, “You have access or don’t based on where you fall along some arbitrary continuum” (W #1). All focus groups discussed the bureaucracy of policy restrictions or qualifications required for obtaining services. One participant stated, “You can fall through the cracks of not meeting the right criteria for getting services … there’s qualifiers as far as income or age” (W #2). Another participant discussed the policy and funding challenges of service delivery within the Commission for the Blind, “Unless you’re in a working situation, the commission isn’t with you as much as they are in a working situation. It’s like we’re lower class citizens. And it’s like you said, they only have so many resources” (W/O #4).

Community

Many participants in each of the focus groups discussed lack of public awareness surrounding visual impairment and the stigma associated with vision loss. One participant stated, “I was at my doctor’s office yesterday, and I am supposed to follow a nurse. Where’s the nurse? … That happens a lot” (W/O #1). Another participant stated, “There is just not enough awareness for that [visual impairment]. Even within the disabled community there is not enough awareness” (W/O #2). Others discussed the associated social stigma of visual impairment. One participant reported, “There is a stigma in our society about blindness. There are a lot of stereotypes about blindness, what blindness looks like, who is blind and who isn’t” (W/O #2).

Organizational

Organizational factors that influence access to LVRS and lack of services available in their community were identified as a significant barrier in each of the focus groups. One participant shared,

Services for the blind are probably understaffed, there are too many clients. They take a cookie cutter approach because they don’t have time to do it all individually. It costs a lot of money to help us adapt. And the administration is trying to cut money everywhere. And society goes in waves of helping those in distress (W/O #2).

Participants discussed significant barriers regarding the lack of understanding of available services and of referrals provided by their healthcare provider. One participant reported,

I haven’t been to my eye doctor in several years. I like him very much, but every time I would go, every 6 months, he would say your eyes are healthy. There’s nothing wrong with them. Everything is wonderful, except you’re blind and there’s nothing I can do (W/O #4).

Participants in all focus groups reported hearing, “There is nothing more I can do” from their eye care practitioner while seeking support and services to assist with adjustment and improving functional abilities. One participate said,

Knowledge is a huge thing … providers should know what’s available. There can be a disconnect between when people go to see their doctor and they say I have vision problems and they’re like ok well go figure it out versus when you’re declared legally blind then they might take more of a role in making the connections (W #1).

Further, a lack of care coordination in relation to their vision loss was raised in all focus groups. One participant reported, “All the agencies that are so important to us don’t talk to each other” (W #1).

Similarly, transportation as either a barrier or facilitator and its importance in terms of coordinated care was identified by participants in all focus groups. Many discussed access to public transportation, community ride programs, or other paid services. One participant stated, “Taxis are expensive. And, so it makes it difficult. But I do the best I can, but it’s not great” (W #1). Another participant reported that he participated in a pilot transportation program: “It was excellent. I say it was excellent because it suited me to a tee. And I think I’m the average consumer” (W #1).

A transportation system providing an appropriate level of support was identified as a key facilitator. For example, a door-to-door system was found to be more beneficial than a curb-to-curb service. Some communities offered their own transportation systems; some had set limitations, such as to doctors’ appointments, whereas others were more flexible to the individual’s transportation needs. One participant stated, “I will never move out of my community because of the transportation” (W/O #3). Many discussed the challenges of time, as some systems required advanced planning, “I call maybe a week ahead and then you have to call 2 days before they’re supposed to pick you up” (W/O #1). Shared rides that required additional time due to frequent pick-ups and drop-offs were identified as a barrier. One participant stated, “A 30-minute eye doctor appointment can take all day” (W/O #4).

Interpersonal

Interpersonal factors as both barrier and facilitator to accessing care were described in all focus groups. Friends and family were identified as an influence in accessing low vision services. These people could act as a facilitator by providing assistance and support. One participant shared,

My daughter makes my doctor’s appointments, she’ll call them and assign somebody to come and meet me at my place and we go and we go together in the car and they stay with me though the appointment and it is strictly volunteer (W #1).

However, many participants verbalized fears of being a burden by asking friends and family for frequent assistance. In other instances, lack of awareness from the general public created a barrier to understanding the individual’s needs. For example, one participant reported, “If I don’t have my cane then people will look at me like I’m crazy and tell me ‘No, you’re not blind’”(W/O #2). Another participant noted that her family overcompensates and limits her independence, “You know when in social situations … they feel obligated to say like ‘Oh, there’s a curb here.’ or ‘Watch out for that.’ They don’t want me to fall when I’m with them” (W/O #3).

Many participants identified access to peer support groups as a facilitator to accessing care or understanding services available within their community. Participants discussed how they were referred to the peer support groups. For some, their eye care provider provided the referral; some were referred from the Commission for the Blind, whereas others were referred by friends or family. One participant discussed the importance of the peer support group, “We learn from each other more than anything else” (W/O #2).

Individual

Individual factors that inhibited or facilitated access to care were raised in all focus groups. Financial factors affecting access were identified in seven out of eight focus groups. Many services required out of pocket expenses, which created an access barrier. Participants noted, “There are devices and those kinds of things that can help you,” “They are really expensive”, and “Money is the bottom line” (W/O #1). Others reported that having financial resources was a facilitator in accessing services or technology. One participant stated, “There are so many advancements and technologies that are available if you can afford them” (W #1).

Many participants discussed the impact of other chronic conditions on access to LVRS. One participant stated, “There are all of these things that have an impact on my life as someone who has encountered and daily encounters increasing visual impairment as well as hearing impairment and other health challenges” (W #1). Addressing multiple chronic health conditions created barriers for everyday tasks, as well as managing multiple appointments and medication regimens. Others discussed the challenges of maintaining confidentiality when assistance is needed for reading forms or health information. One participant shared,

What about medical confidentiality, that’s the thing that drives me crazy. Everybody wants to send me letters and stuff but then I got to have somebody read. I don’t want people knowing about my medical stuff, that’s my stuff (W/O #3).

Many participants discussed the technology divide that affected their health literacy and medical management. One participant stated, “Technology is overwhelming” (W #4). Others discussed needing to be connected to technology for health information or communication with health providers or community services. One participant commented, “It is assumed that people communicate via email, but I don’t have access. Here is a newsletter from the center; if it wasn’t for something like this [peer support group] or my friends I wouldn’t hear anything” (W #1). Another stated, “There is a need for more accessible information, so you feel informed” (W #1).

Limited self-awareness of services available within their communities was described in all focus groups. One participant stated, “I’m very lucky I think because I don’t know anything, he [my doctor] doesn’t tell me anything, so I don’t know anything” (W/0 #4), illustrating lack of self-awareness of services or need for referral. Many discussed the challenges of the visual impairment continuum and how that affected access to services. One participant stated, “There’s lacking in that [services]. Everybody’s puts you in a different bracket … you have access or don’t have access based on where you fall” (W #1).

Many participants discussed acceptance of their vision loss or readiness for services as a barrier to the delivery of care. Some discussed how services are provided episodically and do not meet the chronic nature of their visual condition. One participant stated, “When you’re first referred they have everybody descend on you and then close the case” (W #3). Many reported feeling unready or unable to identify their needs when first diagnosed, “I don’t know what I need!” (W/O #2). Participants felt that they needed time to adjust to their loss and slowly be introduced to strategies to assist in daily tasks: “They only offer it when you’re too new to deal with it, and there’s no way you’re going to want to talk to someone about it. It’s about the timing and repeat” (W/O #2). Ongoing needs and progressive nature of vision loss was a frequent topic: “There are continual changes that get worse and worse. It doesn’t get better. And every time it changes, there’s something new to adjust to” (W/O #2).

Being a self-advocate in accessing care was identified by many participants in all focus groups as a facilitator. Many voiced the importance of speaking up and asking for help: “You can’t be shy about asking people” (W/O #3). One participant stated, people need to “be individually proactive according to his or her lifestyle and get yourself informed about what is available” (W/O #1).

Lastly, time was identified as a barrier for many focus group participants. Some discussed the delays in terms of accessing services and the effects of managing multiple chronic conditions on time and access. Because many rely on others or public transportation, the time needed for going to appointments was significant. Many also discussed the frustration of time and how long it takes to do everyday tasks. One participant stated, “I used to do my checkbook in 20 minutes, now it takes me an hour and a half (W/O #1), and another stated, “It’s exhausting being in our world” (W/O #2).

Follow-up interviews

There were no significant differences found in identified barriers between communities in terms of perceived barriers to accessing LVRS. However, financial resources as a facilitator was only identified within communities with existing LVRS. Table 4 provides frequency of prioritized factors by community.

Table 4.

Prioritized barriers and facilitators by community.

	Communities with LVRS (n = 30)	Communities without LVRS (n = 34)
Barriers
Knowledge–provider	77%	91%
Knowledge–consumer	90%	76%
Lack of coordination of care	53%	44%
Transportation	27%	35%
Readiness	20%	15%
Lack of individualized care	10%	12%
Bureaucracy/policy	7%	6%
Lack of support	7%	0%
Cost	3%	6%
Environment/physical access	0%	6%
Lack of services	0%	6%
Time	0%	3%
Facilitators
People	97%	100%
Peer support groups	67%	76%
Self-advocacy	43%	62%
Resources/financial	40%	0%
Transportation	30%	15%
Senior center	10%	0%
Location/closeness to services	3%	3%
Delivery services	3%	3%

LVRS: low vision rehabilitation services.

Discussion

Previous research identify barriers and facilitators to accessing low vision services for older adults with visual impairment; however, none have examined differences between communities with and without existing LVRS. Many of the key themes identified from the data are consistent with previous studies, including knowledge of provider, transportation, restrictions created by policy, people, and financial resources (Boyce et al., 2014; Matti et al., 2011; Overbury and Wittich, 2011; Overbury et al., 2008; Pollard et al., 2003; Sloan et al., 2014; Southall and Wittich, 2012; Spafford et al., 2010; Walter et al., 2004). However, additional themes identified in these data are less clearly identified in previous research. This includes lack of care coordination within the medical and social services systems, readiness to receive services, lack of individualized care, influence of peer support groups, and the importance of self-advocacy.

Consistent with previous findings, lack of practitioner’s knowledge of available LVRS, requirements for access to these services, and the efficacy of interventions were identified as primary barriers in communities with and without existing LVRS (Southall and Wittich, 2012; Spafford et al., 2010; Wittich et al., 2013). Given that only participants who reported having a low vision eye exam in this study accessed LVRS, it is essential that eye care practitioners understand the importance of and provide referral to LVRS (see Table 1). Best practice guidelines have been established for optometry and ophthalmology and have been integrated into optometry and ophthalmology curricula (Kammer et al., 2010; Fontenot et al., 2017). Ongoing education and advocacy for low vision rehabilitation may improve access for older adults with visual impairment. Occupational therapy practitioners should continue to advocate for referral to LVRS for their clients and continue to educate low vision providers on the efficacy of our interventions.

Likewise, challenges associated with transportation systems were similar to those reported in previous studies (Spafford et al., 2010; Wittich et al., 2013). Although communities differ in terms of types of available transportation systems, participants in both communities identified accessible transportation as a barrier. Cost, time, and type of service were all significant barriers to access. Future research should explore effective models of transportation for older adults with visual impairment to access the community. Transportation should be considered when scheduling occupational therapy LVRS and coordinated as part of the scheduling or follow-up processes. Transportation is an essential component of coordinated care for older adults with visual impairment.

Policy restrictions for access to service provision have been discussed in previous studies as a lack of provider awareness of qualifying factors for referral to services (Matti et al., 2011). Continued education for eye care, primary care, as well as rehabilitation service provider education could improve awareness of available services and qualifying criteria for service provision. Occupational therapy should advocate for our important role in supporting engagement in valued occupations and addressing safety for older adults with visual impairment.

All focus group members discussed the influence of people, most often family and friends, on access to LVRS. Consistent with previous studies, lack of awareness of visual impairment was often discussed as a limiting factor for access (Spafford et al., 2010). Others discussed the positive influence of social support in obtaining access, when there was awareness of the functional implications of visual impairment. As families and caregivers are influential in accessing LVRS, family and caregiver education should be considered an important piece of comprehensive LVRS.

Consistent with the existing evidence, financial resources were identified as a significant factor in accessing LVRS (Spafford et al., 2010). Participants in this study identified the cost of glasses and low vision devices as a barrier to care. Several studies reported that individuals with lower socioeconomic status were less likely to access LVRS or the devices necessary to improve functional independence and quality of life, because of lack of ability to pay (Chiang et al., 2011; Gold and Simpson, 2005; Walter et al., 2004). To maximize service provision and client outcomes, occupational therapy must consider cost and financial resources when working with older adults with visual impairment and making recommendations, specifically for assistive technology or environmental modifications, as these are often costly.

Newly identified themes

Care coordination was identified as a primary barrier for participants in both communities. Previous literature discussed the limitations created by lack of communication, which ultimately led to delayed referral to services (Southall and Wittich, 2012; Wittich et al., 2013). Nearly half of eye care providers found blindness registration for their clients with visual impairment as the final stage of their medical management. In addition, they were unclear on their role in referral or the availability of services for their clients within their communities (Boyce et al., 2014; Chiang et al., 2011). In this study, only 16 participants (25%) reported receiving LVRS and 100% reported the need for additional services. This perception of difficulty in referral and lack of information delayed connection to social and rehabilitation services. Participants discussed the need for coordinated services and the importance of a referral from the eye care practitioner. Connection between providers should occur at all levels throughout the healthcare and social service systems with regular communication about treatment, expectations, and client needs.

Individual readiness to receive LVRS was identified as a barrier to access. Many participants verbalized difficulties in adjusting to vision loss and the challenges associated with provision of LVRS when first diagnosed. About 10–30% of individuals with visual impairment have been found to have clinically significant depression (Casten and Rovner, 2013; Horowitz et al., 2005), and Rovner et al. (2011) found that LVRS decreased incidence of depressive disorders by 50%. Participants discussed the need to grieve the loss of their vision and come to terms with the permanence of the visual impairment before the start of LVRS. Service provision should consider the readiness of the individual to accept LVRS and be provided at the appropriate time to meet the individual’s identified needs. In addition, many participants receiving care from their Commission for the Blind discussed the lack of individualization of the services received. Occupational therapy practitioners should be aware of the individual’s readiness to receive services, including factors that facilitate or inhibit willingness to participate, such as having a positive attitude, having formal supports, or community resources (Mohler et al., 2015). Service provision should include client-centered, evidenced-based interventions that integrate the individual’s priorities for care and readiness to receive services.

Lastly, participants identified the influence of peer support groups and the importance of self-advocacy as facilitators in accessing services. Previous literature found psychological barriers of fear, perceived vulnerability, and stigma as barriers in accessing LVRS (Lam and Leat, 2013; Pollard et al., 2003; Southall and Wittich, 2012; Spafford et al., 2010). Participants reported that peer support groups are a source for information, social network, and a safe space to discuss fears and frustrations related to vision loss. Many participants identified peer support groups as the only source of information regarding services. However, the majority of participants were unaware of comprehensive LVRS, believing there was “nothing that could be done” to support their independence, making self-advocacy difficult. These findings highlight the importance of education to consumers and practitioners on the efficacy and availability of LVRS. Occupational therapy practitioners should explore community resources (roles in support groups) and advocate for LVRS for older adults with visual impairment both in the clinical and community settings.

Limitations

Although this research study was designed to minimize bias, there are limitations to this study. First, sampling was limited to those in Massachusetts, USA, and as such, results may only reflect the perceived barriers and facilitators of this sample of older adults in Massachusetts. Secondly, focus groups were conducted at LVSG; responses from other members of the group may have influenced the contributions of participants. Further, because members have been successful in seeking social supports (peer support groups), use of LVSG as a source of participant recruitment may not be reflective of all adults living with visual impairment. As a result, these findings may not be generalizable, as resources and constraints may vary significantly in different parts of Massachusetts, the USA, or internationally.

Conclusion

As the majority of low vision diagnoses are progressive and chronic, LVRS needs to be provided to address the ongoing needs of the individual. Currently, most services, including low vision eye care and occupational therapy services are provided as episodic care (Saner, 2017, personal communication). Occupational therapy practitioners can advocate for service delivery and provide education on the efficacy of LVRS. As occupational therapy practitioners often work in both medical and community-based settings, we are positioned to provide education to both healthcare providers and the public on services available for those with visual impairment to maintain or improve occupational performance.

This study provides insights into the perceived barriers and facilitators of accessing LVRS for older adults with visual impairment living in Massachusetts. Key findings indicate the need for (a) improved awareness of LVRS at the provider and consumer level to improve referral; (b) coordinated services that address both medical and social services and the chronic nature of visual impairment; (c) increased education to health care providers, consumers, and society on the efficacy of occupational therapy LVRS; (d) client-centered approach to care that is provided when the client is ready to accept services; and (e) service provision that takes into consideration sociodemographic factors. Each of these aspects need to be considered when providing or planning occupational therapy services for older adults with visual impairment.

The results of this study can be used to inform the development of a new model of service delivery that address the identified barriers and includes best practices for LVRS. Continued research is needed on effective models of practice that address the chronic nature of visual impairment, program outcomes, and efficacy of occupational therapy interventions.

Key findings

Low vision is a chronic condition that requires ongoing, coordinated service provision.

There is a need for improved awareness of LVRS at the provider and consumer level.

Care should be client centered and foster self-advocacy and peer support.

What the study has added

This study emphasizes the chronic nature of visual impairment and the need for coordinated, client-centered LVRS that considers client readiness. Peer support and self-advocacy are important facilitators to access services.

Footnotes

Research ethics

This study was granted ethical approval from Boston University Charles River Campus Institutional Review Board (expedited review, protocol #4534E; approved: June 28, 2017).

Consent

All participants provided informed consent to participate in this study.

Declaration of conflicting interests

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

Funding

The author received no financial support for the research, authorship, and/or publication of this article.

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