The Implications of Bereavement in Low Vision Rehabilitation

Project Overview

Low vision rehabilitation services are designed to improve the quality of life of people and promote their independence, however, studies warn about the non-acceptance of low vision rehabilitation services as a major barrier to reaching those who need it. In this context, it is necessary to consider that low vision involves a significant loss of the ability to see and is irreversible. This loss is complex and has a wide impact, and the natural response to a loss is grief. Therefore, the purpose of this study is to analyze the grieving process from the perspective of people with low vision using a qualitative approach to explore the factors that facilitate the acceptance of visual rehabilitation.
 

Low vision rehabilitation "[...] is designed to increase functional ability and improve quality of life by addressing the challenges imposed by visual limitations" (Kaleem, West, Im and Swenor 2017). Despite being the main and best alternative for low vision care, "[...] rates of uptake are low, with only 5% to 10% of those with low vision enrolling in these services" (Kaleem, West, Im and Swenor, 2017). This is due to multiple reasons, but one way to simplify it is to think that there are two types of barriers: 1) those related to the health system and provider knowledge such as "[...] lack of referral or miscommunication between patients and providers on the benefits of low vision services" (National Academies of Sciences, Engineering, and Medicine, 2016), and 2) access and economic factors such as the cost of services, location and vision insurance coverage (National Academies of Sciences, Engineering, and Medicine, 2016).
Coupled with the systemic barriers are barriers to acceptance, which are those imposed by the patient. A study conducted in India on the causes of missed referrals to low-vision rehabilitation services (LVS) found that 53% of missed referrals were due to non-acceptance by the patient and warn that "[...] low acceptance of these services by the patient was the main barrier to effective delivery of available resources, in spite of the easy availability of the services in the institute" (Kumar, Monir, and Rao, 2014). Another study presenting a review the literature regarding barriers that hinder access to low vision care from the perspective of individuals, notes that (70.6%; 24/34) of older nonusers of LVS who self-reported vision loss that notably affected their daily functioning felt that they could "manage" critical tasks, had a visually able helper, or felt that they were not "blind." (Lam and Leat, 2013).
Barriers that limit the use of low vision rehabilitation are multifactorial, however, the non-acceptance of services is something that seems almost contradictory, and while this non-acceptance is not the response that is ideally expected from a patient, this response might suggest that we need to go beyond the issue of health care access, since vision loss affects other aspects such as "[...] quality of life, independence, and mobility and has been linked to falls, injury, and worsened status in domains spanning mental health, cognition, social function, employment, and educational attainment. " (National Academies of Sciences, Engineering, and Medicine, 2016)
This non-acceptance response can also be interpreted as a natural response to loss. According to the American Psychological Association, bereavement is defined as "the anguish experienced after significant loss" (2021). This type of loss implies that their eyesight will not return, will not improve, or may even get worse, and it might generate other types of losses.
Because of its complexity and broad impact on people's lives, "[...] traumas of vision loss are not fundamentally different from adjusting to any other significant crisis, change, or loss. In fact, visual impairment is a severe chronic health (and functional) loss condition, and thus is a significant crisis by definition" (Bergeron y Wanet-Defalque, 2012).
We should assume that vision loss involves a grieving process and with it emotional and psychological work. According to the theoretical model proposed by Elisabeth Kübler-Ross, there are 5 stages of grief that are not chronological and is an individualized experience: 
The first stage of this model of grief is the defense mechanism of denial, whereby the reality of what is happening is denied. The second stage is anger; here, people are emotionally upset and may be angry with themselves or with others. The third stage is bargaining, in which the individual attempts to negotiate a compromise with some form of deity. The fourth stage is depression, in which the individual feels sadness, regret, fear, and uncertainty. Finally, the fifth stage of the model is acceptance, which occurs when the individual accepts his or her situation. (Kübler-Ross, 1970).
This theoretical model attempts to explain the grieving process that comes with the death or loss of a loved one; however, it also has been used to analyze other types of significant losses, among them the loss of health and visual impairment. A study by Bergeron and Wanet-Defalque (2012) explores the pattern of adaptation in patients who have been diagnosed with visual impairment and found that "[...] acceptance was positively correlated with well-being and denial with depression, while acceptance was negatively correlated with depression and, likewise, denial with well-being".
So, from this notion, acceptance is the condition that allows a person to use all the resources available to cope with their situation. If low vision rehabilitation is an intervention that promotes adaptation, there are two key concepts about the grieving process that are important to highlight: denial and acceptance, in this regard Bergeron and Wanet-Defalque (2012) explain the following:
In the context of vision loss, denial is defined as disbelief and refusal to acknowledge the impairment, whereas acceptance refers to the full recognition of vision loss and the subsequent acquisition of new behaviors. Traditionally, acceptance is considered the last stage of the grieving process for adjustment to vision loss.
Therefore, it is possible to think that a better understanding of the grieving process associated with visual impairment may offer relevant information on the elements that facilitate acceptance of LVS and how to make them available to patients in a relevant way.
The purpose of this research study is to analyze the grieving process from the perspective of people with low vision from a qualitative approach to explore the factors that facilitate the acceptance of LVS.
 

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Team Members

Jared Reyes, PhD
Research Program Manager Ron Schuchard, PhD FARVO
Executive Director Donald Fletcher, MD
Medical Director, Envision Low Vision Rehabilitation Center

References & Publications

  • American Psychological Association, 2021. Dictionary of psychology. https://dictionary.apa.org/grief
  • Bergeron CM, Wanet-Defalque M-C. Psychological adaptation to visual impairment: The traditional grief process revised. British Journal of Visual Impairment. 2013;31(1):20-31. doi:10.1177/0264619612469371
  • Kaleem MA, West SK, Im LT, & Swenor BK. Referral to Low Vision Services for Glaucoma Patients: Referral Patterns and Characteristics of Those Who Refer.  Journal of Glaucoma. 2017;26(2):e115-e120. https://www.aoa.org/assets/documents/EBO/939-010KALEEM2017.pdf
  • National Academies of Sciences, Engineering, and Medicine, 2016. Making Eye Health a Population Health Imperative: Vision for Tomorrow. Washington, DC: The National Academies Press. https://doi.org/10.17226/23471