Perception of blind rehabilitation services among adults with acquired blindness in Nigeria: Attention to functional goals

Abstract

Like other sub-Saharan African nations, Nigeria has a relatively high proportion of adults with acquired vision loss. This study investigates the impacts of becoming blind in adulthood and how the use of blind rehabilitation services addresses functional needs, supports activities of daily living, and enhances participation in educational, vocational, and community activities. Adopting a qualitative and interpretative approach, we conducted in-depth interviews with eight adult users of blind rehabilitation services. Three broad themes were identified: (1) psycho-emotional responses to vision loss; (2) impacts on participation in education, employment, and community; and (3) positive impact of blind rehabilitation services. Findings are discussed in the context of the international literature, and suggestions that may enhance the blind rehabilitation services are made.

Keywords

Adults functional goals perceptions qualitative rehabilitation services vision loss

Introduction

Globally, it is estimated that 285 million people are living with visual impairment and, of these, 39 million are blind (Pascolini & Mariotti, 2011). About 90% of these individuals live in low-income nations, and 82% of people living with blindness are aged 50 and above (Pascolini & Mariotti, 2011). Nigeria is categorised as a sub-Saharan country in Africa; in the sub-Saharan countries, the prevalence of blindness among those aged 50 years and older is estimated to be one of the highest in the world at 9% (Abdull et al., 2009). In the last national visual impairment survey carried out in Nigeria, it is estimated that there are 4.25 million people of 40 years and older, who have moderate or severe vision loss that interferes with everyday activities, and 1.13 million are blind (Kyari et al., 2009; Rabiu et al., 2012). There is a high prevalence of acquired visual impairment among middle age adults in Nigeria (Kyari et al., 2009), the most common causes of which are cataracts, uncorrected refractive errors, and glaucoma (Abdull et al., 2009; Rabiu et al., 2012).

Having good vision is an integral part of many key life experiences, such as education, employment, and social relationships (Boerner & Cimarolli, 2005; Stelmack, 2001; Thurston, 2010; Wang & Boerner, 2008). The impact of acquiring a visual impairment in adulthood, after the development of visual memory, has been shown to impact activities of everyday living such as reading, dressing, eating, writing, mobility, and communicating or interacting with others (Culham et al., 2002; Pagliano, 2005; Stelmack, 2001). Furthermore, living with blindness is associated with loss of self-dependence, depression, diminished employability, difficulty in maintaining employment, and interference with functional life goals (Boerner & Cimarolli, 2005; Owsley, McGwin, Lee, Wasserman, & Searcey, 2009). Therefore, it is expected that adults with acquired visual impairment in Nigeria may experience functional limitations and that visual rehabilitation services aiming to address these limitations may be required (Luxton, Bradfield, Maxson, & Starkson, 1997; West et al., 2002).

Visual rehabilitation services

Visual rehabilitation services encompass optical and non-optical services. Non-optical services provide people living with visual impairment with adaptive devices and techniques to independently perform daily activities (Culham et al., 2002; Owsley et al., 2009; Stelmack, 2001). Non-optical visual rehabilitation services (also known as blind rehabilitation services) assist clients with developing compensatory skills using assistive technology with the aim of supporting clients to live safe, productive, and independent lives (Crews & Luxton, 1992; Luxton et al., 1997). Several studies have shown that people living with blindness can increase independence in vision dependent daily living tasks through a combination of assessment, rehabilitative counselling, and rehabilitative training (Hinds et al., 2003; Owsley et al., 2009; Stelmack, 2001). Adults with acquired blindness in Nigeria are no exception (Duke, Bassey, Odumu, Ameh, & Wolffe, 2013). Research suggests that lack of access to rehabilitation services can be a trigger for depression and, in some cases, may result in people never receiving needed services (Kuyk et al., 2008).

The blind rehabilitation model in Nigeria mainly comprises rehabilitative counselling, braille literacy, activities of daily living, orientation and mobility, and assistive computer technology (Bassey, 2016; Duke et al., 2013). This model aims to reduce experience of functional limitation and restricted participation for people living with vision loss (Ajobiewe & Ayena, 2012; Bassey, 2016; Duke et al., 2013; Ozoji, 2003).

Research literature regarding the impact of becoming blind in adulthood in Nigeria is relatively scarce. However, a few studies have been found that people with visual impairment in Nigeria perceive health, communication, accommodation, financial/economic, and psycho-social problems as major issues (Ajobiewe & Ayena, 2012; Kelly, Ajuwon, & Wolffe, 2015; Ozoji, 2003). In an early study of people living with acquired blindness receiving vocational rehabilitation services, Knowles (1969) investigated differences between those whose vocational rehabilitation was successful and those for whom it was unsuccessful. Knowles identified five key factors linked to the success of vocational rehabilitation services: good orientation and mobility skills, a high level of vocational classification prior to rehabilitation, a younger age at the onset of visual impairment, a greater number of years of visual impairment, and a younger age at rehabilitation commencement (Knowles, 1969). However, more recent research is needed to increase our understanding of the impact of becoming blind in adulthood and the extent to which blind rehabilitation services support clients in their daily living activities and to meet their functional goals. This study aims to address this gap in knowledge with a qualitative study that explores the functional implications of becoming blind in adulthood and the experiences of blind rehabilitation services for a sample of adults living with acquired blindness in Nigeria. Following an examination of the research findings, suggestions are made about how blind rehabilitation services in Nigeria might better address the functional needs of clients.

Method

As we sought to understand the lived experiences of adults with acquired vision impairment, the study adopted a qualitative methodology and an interpretative approach. The interpretative approach focuses on the meaning participants attributed to their personal experiences. The aim was therefore not necessarily to create interpretations that might be generalisable to other populations but rather to gain new perspectives and deeper insights into the topic under investigation (Lopez & Willis, 2004).

Participants

Eight participants were selected from a pool of 70 adults living with a visual impairment who have completed the blind rehabilitation programme offered through the Nigeria Association of the Blind (NAB), a minimum of 2 years prior to being recruited for this study. All participants are members of NAB, the umbrella organisation serving people living with visual impairment in Nigeria. A letter of permission was sent to the President of NAB and upon gaining this permission, a letter of introduction was sent to NAB which presented an overview of the research, highlighting the rationale for the study. NAB distributed the letter of introduction via email to adults with acquired visual impairment who had had visual rehabilitation training with the organisation. As a result, 13 potential participants contacted the researchers through email to indicate their willingness to participate in the study. Upon receipt of their email, each participant was contacted by the researcher, and eligibility determined during a screening telephone interview. A total of 11 participants met all recruitment criteria, and the consent form and participant information sheet were sent via email to them.

Purposive sampling was used to ensure an equal gender mix (four males and four females). Criteria for inclusion were: aged between 18 and 59 years (working age), acquired visual impairment at the age of 18 years or later, and absence of other forms of disability. Eight participants between the ages of 24–54 agreed to take part in this study (four males and four females) with an average age of 37 years. The participants all lived in urban areas, in four of the six geopolitical regions of Nigeria. Four were married and lived with their spouses, and the remaining four had never been married and lived with their parents. As noted in NAB’s record and which was confirmed by each participant, seven were totally blind, and one was legally blind, having significantly low vision. Of the eight participants: five became blind from Glaucoma, two from trauma, and one from retinitis pigmentosa.

Of the eight participants: one was a secondary school graduate; five had undergraduate degrees, and two were undertaking undergraduate studies. Three participants were employed by federal agencies, one was employed by a private agency, two were unemployed, and two were university students. The occupations of the participants included account officer, medical practitioner, education administrator, and vocational rehabilitation instructor. Six participants had been blind for 4–8 years, one for 11 years, and one for 16 years.

All study procedures and materials were approved by the Flinders University Social and Behavioural Ethics Committee, and formal consent to participate was provided by participants. Data were collected via in-depth interviews. Interviews were conducted via telephone, lasted between 35 and 45 min and were audio recorded using a digital recorder. The interviews were semi-structured with the application of an interview protocol, enabling participants to talk about their experiences of living with blindness. The interview protocol was formulated by the researchers using concepts derived from the research literature around vision loss and rehabilitation. Probes were used to prompt additional detail and clarify meaning, as required. The interviews focussed on experience of vision loss, use of blind rehabilitation services, and whether the service has been addressing functional limitations and improving activities of daily living. Transcripts were de-identified to maintain confidentiality, and access to transcripts was limited to the research team. Quotes from participants are referred to pseudonym.

Data analysis

Audio data from the interview was transcribed verbatim into text. Manual thematic analysis began with the first interview and proceeded concurrently with data collection. Initially, interview transcripts were read to obtain a general understanding of each personal story, then transcripts were compared and contrasted to identify similarities and differences in experiences and practices (Creswell, 2012; Punch & Oancea, 2014). Preliminary analysis of the interviews identified major themes and variations within the participants’ stories that described their experiences of living with blindness. As the data were synthesised, themes that represented the experience of living with blindness and corresponded to the implications of vision loss were identified deductively (i.e., being guided by pre-existing theory). Data were organised or reduced into themes by identifying words or phrases that best described the common experiences of participants. Illustrative quotes were arranged under codes and, finally, sub-themes were grouped to form three broad themes that are discussed in the next section. Although only one of the research team (E.B.) collected the data, all of the research team independently analysed transcripts in the initial stages of data analysis to identify, discuss, and reach agreement on themes.

Results

During the initial data analysis, up to nine themes were identified. Owing to the frequency of which themes were mentioned, three overarching themes were developed from participants’ accounts which reflected their experiences of living with blindness and of participating in blind rehabilitation services in Nigeria. These were as follows: (1) psycho-emotional responses to vision loss; (2) impacts on participation in education, employment, and community; and (3) positive impact of blind rehabilitation services.

Theme 1: psycho-emotional responses to vision loss

The impact of living with blindness caused participants to think it would be impossible to achieve their life goals. Participants described their initial reactions to vision loss as traumatic: ‘I was hopeless’; ‘I was devastated’; ‘I didn’t know what to do’; ‘Everything crumbled before me’; and ‘I was depressed and attempted suicide’.

Miss A was 29 and has been blind for 11 years, recalls her conversations with her mother when she first lost her vision:

I even told my mother that it [would be] better for me not to be in this world. Where will I start from? Where will I go, or what will I do? I was confused but my mother kept advising me that I shouldn’t talk like that, I should not think of it. There is no single day that I did not cry.

In a similar way, Mr E was 42 and has been blind for 4 years, recalls his concerns about achieving his educational goals in the face of his vision loss:

After becoming blind, there is nothing I could do because my ambition and everything was focused on my education. As a human being, I was hopeless, and I was thinking that it’s all over.

Miss M was 33 and has been blind for 8 years, she was so traumatised by her vision loss that she attempted suicide:

I was devastated, I couldn’t believe that it was me that couldn’t see anymore, I didn’t believe that I will be led as one that is blind. Everything was crumbling before me, my academics was seriously affected, and I also attempted suicide twice . . . I saw no reason to live, and I didn’t know how to handle it, so I attempted suicide.

However, psycho-emotional responses varied even among participants who had lost their vision due to the same degenerative condition, that is, glaucoma. While some were devastated and even suicidal, others felt psycho-emotionally prepared due to the loss over time and previously observing the impact of glaucoma on family members, as in the case of Mrs B who was 39 and has been living with a significant low vision for 5 years:

I have members of my family who have glaucoma to the extent where a lot of them actually have no vision at all, so I knew what the disease was capable of doing, and I’ve also seen them overcome that challenge in various ways. So I knew that I had this situation . . . that needs to be managed.

Similarly Dr D who was 43 and has been blind for 4 years noted his gradual adjustment as his eye condition progressed, and therefore had more measured psycho-emotional response to his vision loss:

It was something that started at my adolescent age; it was not something that started suddenly. So it was part of me, and I got used to it. Because of that it’s like I was part of it. I think my reaction was normal.

For some participants, their religious faith had helped them cope with their changed circumstance. For example, Mr J who was 32 and has been blind for 5 years frames his vision loss as divine intervention and God’s will:

I felt bad because I couldn’t do those things that I love to do but I still believe that I will get my sight back so when this thing happened, I said to myself that God was in control. . . I believe in the healing power of God, and I believe that I will get my sight back . . . maybe I didn’t do what I’m supposed to do, maybe God wants to restrict me from doing what I’m not supposed to do or maybe [my vision loss] is a way to refine me.

It appears that the psycho-emotional consequences of vision loss can be devastating and also that the degree of psycho-emotional response varied among the participants in this study. Individual differences in experience resulted from religious faith and family experiences rather than the suddenness or gradualness of vision loss.

Theme 2: impacts on participation in education, employment, and community

According to participants, their vision loss impacted on their functional ability in various life domains, such as education, vocation, or employment, as well as their mobility and activities of daily living. Mr E’s goal was to complete his university education, but when he could no longer read and write, he no longer believed he could complete his studies. Similarly, Miss M reported: ‘everything was crumbling before me, my academics was seriously affected, and my career was gone’.

Dr D highlighted the impact of his vision loss on his medical career:

I can’t read. In fact, at work, when they bring lab result I will want to write it down; it was difficult for me, and patient will be complaining . . . I can’t even see what I am putting down.

Mrs B also found her vocational performance was significantly impacted by her vision loss as she could no longer use the computer:

When I was returning to work . . . I then realised I really couldn’t function the way I had done normally . . . I couldn’t use the computer anymore, I will spend so much time on the computer and achieve little.

Therefore, for these participants, their functional limitations decreased their productivity and capacity to contribute in their workplaces. For other participants loss of functional abilities prevented them engaging in their communities. For example, Dr D reported that he had to step down from a leadership position in his church due to his vision loss:

I took some leadership role in the church. I dropped most of them because then I discovered that my vision is no longer strong. I can’t read the Bible, so I can’t do the readings in church.

Therefore, his vision loss impacted on his ability to participate in his church community and resulted in the loss of social standing as a church leader.

Living with blindness also had a significant impact on the mobility of participants. Dr D noted,

I could move around by myself in the past. But nowadays, at times I have to depend on people to take me to some places, because the retinitis pigmentosa was affecting my night vision, and now that it is affecting my day vision I now I have to depend on people occasionally to go to places.

Miss M also noted her loss of independence due to diminished mobility:

I asked myself, is it that I will go to the street and someone will be leading me because I can’t move on my own?

Independent mobility was a major concern for participants, with each reporting that their vision loss resulted in some degree of impairment in this area. Overall, for these participants vision loss was associated with reduced participation in education and vocational opportunities as well as less community participation.

Theme 3: positive impact of blind rehabilitation services

Each of the participants in this study experienced varying degrees of functional limitation as a result of becoming blind in adulthood. However, some of these limitations were addressed through participation in blind rehabilitation services. Dr D went to the blind rehabilitation service on the recommendation of his ophthalmologist:

I thought all hope was lost but . . . the ophthalmologist gave me [hope], that if I can go for the rehabilitation program I will be ok . . . So I went for the rehabilitation, and I think I’m happy I did it.

For Dr D, participation in the blind rehabilitation programme gave him encouragement and hope in adjusting to his life post-vision loss.

Other participants found encouragement and support by having the opportunity to meet other adults living with acquired vision loss. Miss M reflected that sharing experiences and coping strategies with others had been very positive for her own adjustment to living with vision loss:

It was the first time I will be coming out after two years . . . Coming out and meeting people of my type, people that have been visually impaired before me. Getting one or two encouragements from them, chatting with them, and learning from their true life experience of how they have been able to cope was helpful to me.

Some participants anticipated that blind rehabilitation services would increase with functional abilities, while others were surprised by the positive impact it had on their lives as described by Mr E,

It was so nice because I’m a person that could not believe that something like that, something of that nature is in a place like that and will restore my lost hope. As I said earlier, I was hopeless when I got blind, but getting to the rehabilitation unit, my hope was restored and I went back to school.

Participants discussed the various modules in the blind rehabilitation programme and the effects of these modules on their functional abilities. The blind rehabilitation services encompassed: Braille literacy; computer training, using screen reader software; orientation and mobility, to enhance their ability to move around independently; and routine activities of daily living. For example, Mrs B related the positive benefits to her life of computer training with assistive technology (a Jaws screen reader), which improved her functional capacity and independence at work: ‘It’s the only way I’m able to function now. Without it, I wouldn’t be able to do a thing’. Overall, participants reported that these modules enhanced their functional abilities across different life settings, including workplaces and school environments.

In addition, participants noted that they had greater confidence in interacting and communicating with others following their rehabilitation programme. However, this was noted not to be a specific focus of the programme but rather an indirect outcome. For example, Mrs B reported: ‘when you become more confident in your ability to communicate generally it has a positive impact on your social interactions’. Similarly, Mr J observed that he was growing in social confidence, and he felt that appearing socially confident would encourage people to treat him with greater respect. He notes,

If I am properly dressed and walk up to you with confidence, I don’t allow you to pity me, I’m like you and I talk to you with confidence. I talk to you the way any other person will talk to you and you will not see the disability in me.

Even though participation in blind rehabilitation services seemed to enhance participants’ confidence, the lack of visual cues for a person with visual impairment remained a functional barrier for many participants. For example, Dr D felt unable to make new friends, as it was difficult for him to initiate conversations: ‘the relationship I initiated before I lost my sight, are the ones I am maintaining . . .’.

While generally participants were positive in their views of blind rehabilitation services, participants did identify barriers to accessing such services. These barriers included the geographic location of blind rehabilitation services (i.e., having to travel a long distance), inadequate transportation, lack of rehabilitation personnel and absence of a specific module of blind rehabilitation. As noted by Mr N who was 54 and has been living with blindness for 16 years,

‘The doctor gave me a referral letter to center for rehabilitation for the blind. I couldn’t go to the place for three years because the place was far and I don’t have the money to enrol. So when I heard that a non-profit organisation was conducting a free vision rehabilitation, I quickly attended and they gave me a white cane’.

In terms of a lack of a module around education and employability, Ms G who was 24 years old and has been living with blindness for 5 years, reported that she commenced her rehabilitation programme in her home city, however the training was mainly Braille literacy which was not helping her. Furthermore, the centre was lacking in computers, software, and personnel for computer training. She noted,

‘I started my rehabilitation at the rehabilitation centre in my state but I couldn’t cope with braille which was the main thing they do there. I needed to learn computer technology to help with my education and I left for another rehabilitation at a distant state . . .’.

Discussion

This study examined the impacts of acquired vision loss on a group of adults in Nigeria. Participants reported negative emotional reactions on learning of their visual impairment. The psycho-emotional responses identified in this study align with findings from previous research that the diagnosis of an eye condition may lead to anxiety, distress, low morale, depression, uncertainty about the future, and a perceived reduction in the quality of life (Culham et al., 2002; Dodds, Bailey, Pearson, and Yates, 1991; Hinds et al., 2003; Reeve, 2004; Stephens, 2007; Thurston, 2010; Watermeyer, 2009). Evidence gathered in this study indicates that becoming blind in adulthood is associated with depression, consideration of suicide, and even attempting suicide.

In addition, the findings of this study indicate functional limitations following vision loss and a resultant impact on participants’ mobility and daily living activities as identified elsewhere in the international literature (McCabe, Nason, Turco, Friedman, & Seddon, 2000; Vu, Keeffe, McCarty, & Taylor, 2005). These limitations in turn are associated with reduced participation in educational and vocation opportunities as well as social and community participation.

In spite of the psycho-emotional and functional implications of vision loss, the findings demonstrate that adults living with blindness in Nigeria can regain psycho-emotional stability and develop functional skills through completion of the modules offered by the blind rehabilitation services. Not only had this, but the opportunity to share experiences and coping strategies with other adults experiencing vision loss, considerably benefitted the adults in this study.

The findings presented here are consistent with the concept and aims of blind rehabilitation services, that is, to facilitate and support people in acquiring compensatory skills to enable them to be productive and self-reliant (Crews & Luxton, 1992; Luxton et al., 1997). Therefore, our findings demonstrate the significance of blind rehabilitation services in Nigeria to address psycho-emotional changes in adults with acquired vision impairment, and regain functions in various life domains such as education, employment, and activities of daily living.

Furthermore, the findings suggest that blind rehabilitation services can assist working-age adults with acquired visual impairment in regaining self-confidence to undertake tasks of everyday living and to communicate and interact with other people. However, the study demonstrated that the lack of visual cues due to blindness is challenging to overcome and resulted in a stagnation of the social networks as participants maintained existing relationships rather than starting new ones. Wang and Boerner (2008) posited that social interaction depends heavily on visual information and is a contributory factor to the diminished social relationships experienced by people with visual impairment. We therefore suggest that blind rehabilitation services in Nigeria may benefit from the addition of a ‘social module’ to specifically support clients in building social confidence, effective communication, and expanding social networks which are significantly impaired by vision loss (Boerner & Cimarolli, 2005; Wang & Boerner, 2008); this should be tailored to the social goals of clients. Such skills would also likely improve participation in community life and improve overall well-being of adults with acquired blindness in Nigeria.

Findings from this study also demonstrated some barriers to blind rehabilitation services, such as, distant location of the service and cost of transportation. These findings aligned with the work of Overbury and Wittich (2011) in Canada who similarly identified these as barriers to access of vision rehabilitation services. In addition, the absence of trained personnel for a specific blind rehabilitation module or the absence of a particular type of rehabilitation module in a centre can be a barrier for the up-take of blind rehabilitation services. These findings are also consistent with the work of Gerber (2003) which identified lack of training as a barrier to the use of assistive computer technology. Hence, resulting in barriers in terms of participation in education, employment and community activities (Crudden, Sansing, & Butler, 2005; Gerber, 2003).

This study was not without its limitations. We acknowledge that there is potential for recall bias given that for some participants it might have been close to 2 years post their rehabilitation programme, hence the ‘accuracy’ of their recollections may be questionable. In terms of reflexivity, because of our experiences of working with people with disabilities, including one of the researcher’s experience of working with people with visual disabilities in Nigeria (E.B.), we sought to address concerns relating to bias and pre-conceptions in relation to the central phenomenon being studied. Thus, the process of ‘bracketing’ was adopted for this study, whereby the researchers attempted to put aside pre-conceptions and assumptions about the phenomenon being studied and remained open to participants’ descriptions of their lived experiences and the effect of visual rehabilitation services (Tufford & Newman, 2012).

Conclusion

Becoming blind in adulthood, results in functional limitations among adults with acquired blindness in Nigeria. These limitations include difficulty to move around, addressing the psycho-emotional responses to vision loss, and diminished ability to undertake daily living tasks. As a result, adults with acquired vision loss experience a less economically productive life and experience reduced opportunity for participation in education, the labour market and the community. Experiences of reduced participation and engagement may be associated with reduced psychological health and well-being.

Our participants viewed blind rehabilitation services as a support programme that brought hope and restored their functional ability. From the perspective of these participants, the modules of the blind rehabilitation services addressed the psycho-emotional responses to vision loss and their functional limitations. However, participants noted that blind rehabilitation services in Nigeria do not address their social goals, which includes developing new relationships, communicating, and interacting with others. Therefore, it is suggested that blind rehabilitation services in Nigeria should be tailored to each individual’s social goals beginning from the point of rehabilitative counselling. Such an expansion of current service offerings is expected to facilitate the social well-being of adults with acquired vision impairment.

Footnotes

Funding

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

ORCID iD

Ruth Walker

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