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Wellbeing and visual impairment: the role of existential spirituality.

October 2, 2012

 

 

 

 

 

 

 

First published in print: http://bacpspirituality.org.uk/thresholds

 

 

What do we mean by “wellbeing”?

 

 

In June 2011 London was host to the UK Vision 2020 Conference. The lively and thought-provoking debates were peppered with talk of ‘a vision of the Big Society’, underlining a holistic, joined-up approach to visual impairment services. One term surfaced frequently during these talks: ‘wellbeing’.  This concept was used frequently in relation to ‘individual needs’, ‘empowerment’, ‘health outcomes’ and ‘quality-of-life’. ‘Wellbeing’, and the many ideas and concepts that fall within its broad reach, has thus begun to establish itself within the main discursive practices in public health care and in the realm of vision impairment. 

 

Yet what do we understand by the term “wellbeing” in relation to sight loss and eye conditions? Are we talking about eye health and physical wellbeing in terms of mobility and functionality? Or do we also mean a sense of social wellbeing:  participation in local communities, networks of friends and family that may offer support? And what about the impact that sight loss has on emotional wellbeing? How does visual impairment affect self-esteem, self-concept and levels of satisfaction with life? 

 

It can be argued that vision loss has an impact upon all of these areas of a person’s wellbeing, and furthermore, these areas of wellbeing are all reciprocally related to one another. Research has indeed begun to address these areas of wellbeing in relation to visual impairment, however there remains at least one other area of wellbeing which arguably plays a crucial role in just how “well” we feel, regardless of social and cultural differences, and may indeed impact upon all the other areas of wellbeing combined:  spiritual wellbeing. However, before considering what role spiritual wellbeing plays in relation to visual impairment, it is important to ask exactly what do we mean when we talk about “spirituality” and “spiritual wellbeing”? Research suggests that the concept is far from clear.

 

What do we mean by “spirituality”?

 

It seems that spirituality is ‘a broad concept that encompasses values, meaning and purpose’[1], and precise interpretations of it are rare. Indeed, there is no universal definition that can be operationalised and measured[2] since all humans have individual belief and value systems that influence their understanding of it. Nevertheless, three general distinctions have been highlighted in the literature[3]:

 

(a) spirituality and religion as the same concept. (When people refer to spirituality they mean religious faith.  Spirituality = Religion.)

 

(b)  spirituality as a concept separate from religion. (An existential concept that is not attached to any religious faith and that addresses an individual's firmly held values, giving meaning and purpose in life. Spirituality = Existential).

 

(c) spirituality as an ‘umbrella term’ that encompasses both (a) and (b) above. (Spirituality is the general term which describes both religious and existential or secular ways of thinking and is therefore more inclusive).

 

The first view focuses on the religious implications of spirituality (which include belief in a god and the rituals and practices that support those values). The second view attends to spirituality as the vast "search for meaning in life, wholeness, peace, individuality, and harmony" separate from religious affiliation[4]. Researchers, however, often ignore the crucial distinctions between existential and religious spirituality and use the term ‘spirituality’ and ‘religion’ interchangeably in discussing relationships between ‘spirituality’ and health[5]. However, it is becoming increasingly clear from the literature that distinguishing between the constructs of religious and existential spirituality is critical for researchers and for consumers of that research[6]. Specifically, it has been found that religious faith may inform or promote spiritual wellbeing in some individuals, but may not be essential or beneficial for others[7]. This suggests that more research is needed into the specific role of existential spirituality in health, since this ‘component’ of spirituality is often overlooked or assumed to be the same as ‘religion’. Some authors have therefore suggested that future research must make a clear distinction between religious and existential spirituality in order to lend empirical support for the specific importance of existential spirituality for health outcomes.

 

Spirituality and holistic wellbeing

 

So why may spirituality be important? Previous research has found that a sense of spirituality may help people adjust emotionally, physically and socially to chronic health conditions.[8] [9] In these studies it is suggested that spirituality plays a mediating role in holistic wellbeing by acting as a “buffer” against the negative effects of stressful life events on physical and emotional health.[10] Such research has found that spirituality provides individuals with a sense of meaning, direction and purpose in life, and this can help them and their families manage and adapt to difficult situations in life such as physical and mental illnesses or the stress and depression brought on by long-term health conditions. In this way, a sense of spirituality can be seen as positively influencing physical, emotional and social wellbeing. It may increase an individual’s self-esteem, confidence or resilience (‘emotional wellbeing’).[11] This in turn may help and motivate individuals to talk about their situation and find support through their family, friends and community and give them a sense of ‘connectedness’ (‘social wellbeing’). By feeling emotionally stronger, and being connected with a network of support and resources, the individual may then feel stronger physically, and more able to function in the way they would like to. Spirituality therefore may also increase a sense of ‘physical wellbeing’. This suggests that spirituality acts as a “go-between” in the pathway from illness and disability to wellness, “buffering” the direct negative effects of chronic conditions and improving psychosocial outcomes.

 

The conclusions of such studies suggest that a sense of spiritual wellbeing may positively influence rehabilitation, treatment or therapy outcomes by giving meaning to experiences, feelings and thoughts. The problem, however, is that in many of these studies the concept of ‘spirituality’ is not defined at the beginning of the research, or the term ‘religion’ and ‘spirituality’ are used interchangeably, assuming they mean the same thing. This makes it difficult to arrive at any clear conclusions about the specific role of existential spirituality from such research.

 

Spirituality and vision loss

 

Recent research has begun to consider the ‘holistic’ nature of wellbeing: the importance of not just the physical, but also the emotional, social and spiritual[12]. The findings of such studies suggest that people can utilize emotional, social, and spiritual factors to directly affect their physical health. Although much work has been done in examining the relationship between emotional, social and physical wellbeing, the exploration of spirituality, and specifically existential spirituality, in relation to specific health conditions remains under-investigated.

One such under-investigated area is that of visual impairment. Little is known about the relationship between spirituality and visual impairment, the role of existential spirituality and the meaning of spirituality and wellbeing for blind and partially sighted people. Although very few studies have explicitly explored this topic, there is a growing awareness in visual impairment research that ‘wellbeing’ is a holistic concept, and therefore it represents something broader, bigger and all-encompassing than measureable, physical outcomes. The few studies in existence into visual impairment and spirituality have all underlined this point.[13] [14]  Such studies suggest that existential spirituality plays a significant role in adapting to vision loss and emotional wellbeing by providing people with meaning and purpose in life and encouraging positive psychosocial development. These findings therefore suggest that the role of spirituality for individuals with visual impairment needs to be further examined.

 

 

 

 

Current research

 

As this paper has highlighted, although there are various interpretations of spirituality and its relationship to wellbeing in healthcare settings, “meaning” and “purpose in life” have been suggested as primary components of a definition of existential spirituality.[15] Nevertheless, a gap remains in the literature on spirituality and vision-specific wellbeing, with very few studies explicitly considering the role spirituality plays in adapting to vision loss. Furthermore, how blind and partially sighted individuals define spirituality remains unexamined. 

 

There is a clear need to give voice to the narratives of visually impaired individuals so they can explain what spirituality means to them. The term ‘wellbeing’ is a contested one, but largely it is beginning to be understood in a more holistic way. Likewise, visual impairment research and services who have traditionally concentrated on physical, functional outcomes are beginning to appreciate this holistic nature of wellbeing by including an awareness of emotional and social support in their strategy and research. However there remains a gap in such research and services. There is still a lack of explicit acknowledgement, appreciation of and giving voice to the spiritual side of wellbeing.  As such, in order to try to fill this gap, and to make the concept of vision-specific wellbeing truly holistic, research has begun as a doctoral project at the University of Sunderland. This qualitative research project tries to understand what spirituality means for visually impaired people and its effects on vision-specific wellbeing. Specifically, it examines concepts of wellbeing, existential understandings of spirituality, and forms of ‘spiritual engagement’ such as meditation, yoga, mindfulness and connecting with nature. It is hoped that the outcomes of this research will help to inform a wider, holistic framework for understanding vision-specific wellbeing. Results of this study will become available in late 2012, and it is hoped that this will begin to bridge the gap between understandings of existential spirituality and vision-specific wellbeing.

 

 

 

 

 

 

 

 

 

 

 

 

 

References

 

 

[1] Dossey L. Healing Words. San Francisco: Harper Collins/Harper San Francisco; 1993

 

[2] Koenig, H.G.  Is religion good for your health? The effects of religion on physical and mental health. Binghamton. NY: The Haworth Press; 1997

 

[3] Swinton, J. Researching spirituality and mental health: A perspective emerging from the United States and the United Kingdom. Australian Journal of Pastoral Care and Health. 2009; 3 (1)

 

[4] Tanyi, R. Towards clarification of the meaning of spirituality. Journal of Advanced Nursing. 2002; 39(5): 500-509.

 

[5] Efficace F, Marrone R. Spiritual issues and quality of life assessment in cancer care. Death Studies. 2002; 26(9): 743–756.

 

[6] Edmondson,D, Park, CL, Blank, TO, Fenster, JR, Mills, MA. Deconstructing spiritual well-being: existential well-being and HRQOL in cancer survivors. Psycho-Oncology. 2008; 17: 161–169.

 

[7] Riley BB, Perna R, Tate DG et al. Types of spiritual well-being among persons with chronic illness: their relation to various forms of quality of life. Archives of Physical Medicine & Rehabilitation. 1998; 79(3):258–264.

 

[8] Harrison, MO, Edwards, CL., Koenig, HG, Bosworth, HB, Decastro, L, Wood, M. Religiosity/ spirituality and pain in patients with sickle cell disease. Journal of Nervous and Mental Disease. 2005; 193: 250–257.

 

[9] Laubmeier, KK, Zakowski, SG, Bair, JP. The role of spirituality in the psychological adjustment to cancer: A test of the transactional model of stress and coping. International Journal of Behavioral Medicine. 2004; 11: 48–55.

 

[10] Mytko, JJ, Knight, SJ.  Body, mind and spirit: Towards the integration of religiosity and spirituality in cancer quality of life research. Psycho-Oncology. 199;  8: 439–450.

 

[11] Nosek, M A, Hughes, RB.  Psychospiritual aspects of sense of self in women with physical disabilities. Journal of Rehabilitation. 2001; 67(1): 20–25.

 

[12] Nichols, L., Hunt, B. The Significance of Spirituality for Individuals with Chronic Illness: Implications for Mental Health Counseling [Internet] 2011 Jan 1 [cited 2012 April 25]. Available from: http://www.faqs.org/periodicals/201101/2263928981.html

 

[13] Wang, C, Chan, CLW, Ng. S-M, Ho, AHY. The impact of spirituality on health-related quality of life among Chinese older adults with vision impairment. Aging & Mental Health. 2008; 12(2):267-275

 

[14] Brennan, M. Spirituality and religiousness predict adaptation to vision loss in middle-aged and older adults. International Journal for the Psychology of Religion. 2004; 14:193–214.

 

[15] Daaleman, TP, Kuckelman Cobb, A, Frey, BB. Spirituality and well-being: an exploratory study of the patient perspective, Social Science & Medicine. 2001; 53(11):1503-11.

 

 

 

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