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Spirituality as a Determinant of Health for those with

Disabilities

Kieren Faull, MSocSci


Queen Elizabeth Hospital
PO Box 1342, Rotorua
New Zealand
(Tel: 64-7-348-0189 ext. 877)
(Fax: 64-7-348 1660)
Email: research@qehospital.co.nz

Thomas J. Kalliath
Department of Psychology
University of Waikato
Private Bag 3105
Hamilton, New Zealand
(Tel: 64-7-856-2889 ext. 8670)
(Fax: 64-7-856-2158)
Email: kalliath@waikato.ac.nz

November 17, 2000

Running Head: Spirituality, health, disability

Correspondence should be addressed to Kieren Faull, Queen Elizabeth Hospital


PO Box 1342, Rotorua, New Zealand.
Spirituality as a Determinant of Health for those with Disabilities?

ABSTRACT

Disability is commonly viewed as permanent loss of physical, cognitive and social

aspects of self. Rehabilitation interventions are aimed to return the individual to full

health by either restoration of past physical, cognitive or social capabilities or

strengthening aspects of self to counter such loss. For many, rehabilitation

interventions do not result in a complete return to past physical, mental or social

health. Does this mean that people with disability can never be healthy? Or does it

indicate that our perception and definition of health does not reflect the essence of

health? We argue that when people with disability redefine themselves and their

conception of health in terms other than levels of physical, social and cognitive

functioning, good health is an attainable goal. We discuss evidence that suggests why

spirituality could be a primary determinant of health


Disability has been defined as any restriction, caused by an impairment (loss

of health) that reduces the individual's ability to perform an activity in the manner or

within the range considered for a normal human being (WHO, 1997). The reduction

in physical, social or cognitive function, resulting from impairment often impacts

negatively on individuals wellbeing. If we accept the WHO definition of health as

a state of complete physical, mental, and social wellbeing and not merely the absence

of disease or infirmity, then good health is an unobtainable goal for those with

disabilities (National Health Standing Committee, 1998; WHO, 1980; 1997). We

argue that if people with disability restructure their perceptions of self and health in

terms other than levels of physical, social and cognitive wellbeing, then good health is

an attainable goal for those with disabilities. In this paper, we draw a clear distinction

between the concepts of spirituality and religion and propose a working definition of

spirituality. We review research on spirituality and its relationship with overall health

and wellbeing, and discuss why spirituality could be a primary determinant of health.

Disability Defined

Scientific advancements in health research have enabled many to regain health

by treatment of disease and traumatic injury. However, health professionals frequently

observe and comment on the discrepancies evident between patient's physical disease

status and the level of illness that is experienced (Fitzgerald, 1997; Fuhrer, 1994).

Disease is biological degradation resulting from causes that are attributable to physical,

psychological and social malfunction or trauma and identified by objective diagnosis of

symptoms and physical findings. Illness is the subjective experience of the disease, such

as pain, depression, helplessness or physical disability (Broderick, 2000). Analysis of

global health highlights the fragility and complexity of the health construct that cannot

be fully defined as simply the absence of disease (Sen & Bonita, 2000). Within the
context of acute ill-health experiences, modern medicine is largely effective at

addressing both the objective symptoms while the subjective experience of illness is

generally short term. For patients with chronic conditions, that is disabilities, complete

health appears to be an unattainable goal if good health is defined as 'the absence of

disease, a state of complete physical, mental and social well-being (National Health

Standing Committee, 1998). Health-care utilisation and expenditure for those with

disabilities is, on average, substantially higher than those who are not categorised as

disabled (DeJong, Batavia & Griss, 1989; Rice & LaPlante, 1992; Rice, Max & Trupin,

1995, Max, Rice & Trupin, 1996, Ministry of Health, 1999), suggesting that current

health goals are targeting what may be unattainable for many with chronic conditions.

Permanent loss of physical, cognitive or social function is assumed to indicate a loss or

lessening of ability and therefore the individual is categorised as disabled. Such

categorisation may reflect the mindset of the assessors as to what health is rather than

the perspective of those people with disabilities (Ballard, 1994; Durie, 1996; Munford,

1995; Varian, 1991; Vash, 1981).

Tepper, Suton, Beatty and DeJong (1997) and others (Fuhrer, 1994; Gregory,

1998; Cwikel, 1999, Joslyn, 1999, Mehlman & Neuhause, 1999; Kriegsman & Deeg,

1999) argue that definition of disability cannot be separated from the agendas of the

definers and challenge the adequacy of any singular definition of disability as well as

the appropriateness of a pathological approach to this issue.

Definition of individual health status based solely on social, cognitive or

physical 'dysfunction', 'less than normal' or 'disease' does not consider that subjective

factors may also be major determinants of health. Fuhrer (1994) proposes that a

definition of disability not only needs to include the concept of disablement but also the

subjective concept of enablement. Disability can be viewed as a two-sided coin, loss of


observable aspects of self but also an opportunity for growth and development of the

more intrinsic aspects of self. The subjective side focuses on the individual's perception

of their health and self rather than simply measurement of observable physical, social

and cognitive health.

A more comprehensive definition of disability that incorporates the concept of

enablement as well as disablement would enable the individual's perception of life in

general to become the focus. Such a focus would reflect the 'individual's implicit

standards rather than any particular objective condition and both cognitive and

emotionally toned judgements are involved' (Fuhrer, 1994, p.359). What are the factors

that determine whether or not those with disabilities achieve a state of complete

wellbeing?

Determinants of Health for those with Disabilities

Social health or the strength, magnitude and degree of intimacy or closeness of

relationships with others have been found to be strongly related to physical health status

(Fratiglioni, Wang, Ericsson, Maytan & Winblad, 2000; Fuhrer, Rintala, Hart,

Clearman & Young, 1992).

Similarly, cognitive health including level of self worth/esteem, degree that one

can perceive meaning and make sense of life experiences also appear to impact physical

health (Akkasilpa, Minor, Goldman, Magder & Petri, 2000; Benjamin, Morris,

McBeth, Macfarlane & Silman, 2000).

The inter-relationships of stress, social support, cognitive and physical health

have been the focus of a large body of research. Meaningful relationships with others,

our interpretations and perceptions of experience are all factors that influence stress

levels (Lazarus & Folkman, 1984; Scheier & Carver, 1988, Oulette-Kobasa, 1983).

Also, strong relationship exist between the level and duration of stress and the
prevalence of illnesses such as cancer, cardiovascular diseases, chronic pain and fatigue

syndromes, asthma, diabetes and some forms of arthritis (Cohen & Williamson, 1991;

Frese, 1985; Jemmott & Magloire, 1988; Moss, Moss & Peterson, 1989; Taylor, 1991).

The evidence of relationships between overall wellbeing, defined as the

subjective aspects of cognitive, social health with physical health suggests that

subjective aspects of self are important determinants of health. The experience and

perception of social relationships and connection as well as cognitive beliefs and values

appear to be integral to health. For many, relationships, connections, beliefs and values

are seen as derived from the spiritual dimension.

Spirituality versus Religion

Sloan, Bagiella and Powell, (1999) point out, there does not seem to be clear

separation of the concept of religion from spirituality or even such intertwined concepts

as social support, group identity, and self concept. Many studies indicate a relationship

between religion and health status (for example, Idler & Kasl, 1997; Koenig, Hays,

George, Blazer, Larson & Landerman, 1997; Levin, 1994, Park & Cohen, 1993,

Pargament & Hahn, 1986). However Sloan, et.al. argue that there is a lack of rigorous,

quantitative studies that clearly test possible relationships of spirituality with health.

Often religion/health studies cite a link between church attendance, religious

involvement and better health status, but do not address confounding variables that may

provide other reasons for the association between health and religion. For example,

attendance at church requires physical fitness and mobility or, at least, a high level of

social support to enable such attendance. Hence, those who regularly attend church may

be healthier simply because they regularly perform this social activity or may be a self-

selected sample who receive high levels of social support. Likewise, there appears to be

no studies that compare the health of those who regularly attend religious organisations
with others who regularly attend similar but secular social organisations. Hence,

enhancement of self-worth and lowering of stress through group interaction, identity

and role performance has not been accounted for.

The paucity of quantitative research on spirituality seems to be due to the lack of

a clear definition of spirituality and unclear rationale and theory relating to the possible

relationship of spirituality to health. These factors have been compounded by the lack of

reliable and valid quantitative instruments to measure spirituality or measures that

clearly focus on spirituality rather than religion (Jones & Faull, 1999; Sloan, Bagiella &

Powell, 1999).

Religion is a collective or group concept that relates to common behaviours and

beliefs (norms) while spirituality is an externally-orientated phenomenon that is

individually unique but focuses on relationships and connections with other people,

objects and phenomena to attain full self health. The fundamental difference is that

religion is based on others spiritually-derived knowledge that binds individuals to a

particular perception of self and the world while spirituality is based on direct

connection with spiritual sources that results in individually unique knowledge about

self and the world. Fitzgerald (1997) views it as freeing the individual to strive towards

the experience of one's full potential and knowledge of one's place through accessing

relationships and connections with external resources. Moustakas (1956) states that

spirituality is about a self that is both externally orientated and sustained, about being

and 'becoming', and is defined by the spiritual connections of the individual, rather than

by others. But if spirituality is such an individually unique concept, how does one

construct a universal definition? The answer seems to be by not focussing on individual

details such as particular beliefs or practices (religion) but by examination of the

common intent or goal of these behaviours and thoughts.


Spirituality defined.

Analyses of the literature on spirituality has identified four common themes

(Dyson, Cobb & Forman, 1997; Selway & Ashman, 1998; Weaver, Flannelly,

Flannelly, Koenig & Larson, 1998), these are:

1. Relationships: The strongest theme, is the existence of strong relationships within

self, between self and others, external spiritual forces and nature.

2. Relatedness/Connectedness: This theme is intrinsically interwoven with

relationships. It is not enough to intellectually acknowledge a relationship but the nature

of the relationship must be such that it is experienced and perceived as an essential

component of self. That is, the individual is perceived as part of a self system rather

than the complete self system. The individual's health is dependent, to some extent, on

the degree of connection with others, nature and external spiritual forces as well as the

level of health of those one is connected to.

3. Meaning: The characteristic of the individual's relationships and connections

determine the interpretation they have of the purpose of their life. Included in this

construct is the concept of hope, which is evident in such attributes as a positive

attitude, appreciation of nature, others and life in general.

4. Beliefs/Clarity of Principles: This does not refer specifically to religious beliefs but

rather the preceding three themes enable the development of a personal belief system

that is clear, strong, rigorously upheld and provides a structure for rationalisation of life

purpose and experience. It is the presence of a strong belief system that is indicated by

the clarity of interpretation of life meaning. It is the vehicle by which the individual

comprehends, interprets and reacts to experiences.

These themes are reflected in New Zealand Maori models of health. For

example, the health concepts of Durie's (1994) Whare Taha Wha and Pere's (1997) Te
Wheke. Both models emphasise the centrality and influence of spirituality over all

dimensions of the self system. Relationships that are perceived as inherently connected

to the individual self system are forwarded as determiners of one's perception,

behaviour and interpretation of experience in line with the individual's unique life

meaning and beliefs.

Spirituality research has been largely confined to qualitative studies that focus

on what spirituality might be rather than what it might do with regard to health (Do

Rozario, 1997; Fitzgerald, 1997; Vash, 1981). The scarcity of rigorous research on the

effects of spirituality may result from the deeply personal and controversial nature of

the topic, including beliefs that somehow spirituality is 'of another world',

unapproachable or sacred. Another reason could be the tendency for the concept of

spirituality to be viewed as the same as the behaviour termed religion. It seems that the

aim of religion-health research is to prove that one set of collective beliefs and practices

are more effective than others, rather than investigating the dynamics of the spiritual

dimensions effects on other dimensions of health. But what is the probable

relationships of spirituality to health?

Rationale for the Relationship of Spirituality to Health.

Our individual identity or self concept is constructed through identification with

others, life roles as well as self-perception of our physical form, mental and social

abilities. We tend to view our identity as relatively stable and permanent where positive

changes are seen as any experience that adds to our identity or self concept. Disability

directly challenges both the permanence and sustainability of a self concept that is

founded on our physical, social and cognitive dimensions. Challenge to self requires the

use of coping strategies to adapt to such a threat.


Breakwell (1983) identified three coping strategies, firstly, Inertia or passive

coping, entails doing nothing in the hope that the problem or challenge to self will

resolve itself. Secondly, Action, which requires the individual to do something to

address the challenge to self and assume control of the outcome. For those with

disabilities an action strategy may include seeking knowledge of the disease, a focus

on a return of physical flexibility and fitness, experimenting with various medications

and supplements, the sourcing and use of functional aids, examination and change of

attitudes and lifestyles or praying to seek a cure. While these two strategies are

essential processes of rehabilitation, they imply that rehabilitation and any possibility

for health must focus solely on the return of former function, occupational role and

lifestyle. Pargament (1997) refers to these two options as the Conservation of Ends

whereby the individual attempts to preserve who they perceive themselves to be

(Inertia) or reconstruct and regain their pre-threat identity (Action).

Often, the reality of disability is that there are radical and ongoing physical,

social and cognitive health changes. In such a context, Breakwell's (1983) third

coping strategy, Transformation, provides a option for positive development because

(rather than in spite) of ongoing change. This strategy requires that the individual

access personal resources that may have been previously dormant to allow the

adoption of new definitions of self, health, occupational roles and lifestyle. It has been

long argued that the only mechanism that will ensure such change or growth of self is

by the sourcing of completely new self-knowledge only available through spiritual

connection (James, 1890; Pettitt, 1988; Vash, 1981; Do Rozario, 1997; Matthews,

2000). The central assumption of this concept of self and health is that all people have

an inherent spiritual core to their being but that, for many, this core may lie dormant

and unacknowledged (Do Rozario, 1997; Fitzgerald, 1997).


For example, for those experiencing terminal cancer their perceptions of

permanence, order, control and personal power is challenged in the extreme. It has been

found that those with a strong spiritual dimension of self face death with more

openness, honesty and preparedness. (Dyson, Cobb & Forman, 1997; Weaver,

Flannelly, Flannelly, Koenig & Larson, 1998). Furthermore, those with 'healthy

spirituality' were found to live longer and access coping mechanisms that assist

themselves and significant others to adjust positively to death (Kazanjian, 1997). The

evidence reviewed here suggests that there may be links between individuals spiritual

self and coping.

In many instances, loss is not quite so dramatic but a cyclical process of loss,

regain (or partial regain of loss) then further loss and so on. Such an uncertain process

brings into focus the fragile nature and finiteness of the physical, cognitive and social

dimensions of self. Collins (1998) identified the occupational therapists role as one of

strengthening, or even initiating the connection between spirituality and outward

behaviour. Egan and Delaat (1994) state that spirituality is 'expressed through

engagement in everyday life, that is, occupational performance in work, self-care, and

leisure' (p.100). They concluded that spirituality is not a component of self or being,

but rather spirituality is the individual and therefore the true or core self and remains

whole despite injury and illness. Furthermore, they provide a revised version of the

model of occupational performance that places spirituality at the core and all other

dimensions of self and influences on self (for example, the social environment, work,

and leisure) radiating from this inner core. The implication is that when the spiritual

self is robust then one has the means of coping with all circumstances that affect the

individual.
Research specific to the experience of disability supports these views. Do

Rozario (1997) states that the persons inner and interactional world of values,

beliefs, attitudes and inspiration helps to mediate, buffer and determine the process

of successful coping (p.428). Do Rozarios (1997) research identified a process of

adaptation (or coping) from which she developed a five-step process of progression

towards the attainment of health. This model attempts to encapsulate what she

observed in people with disabilities when they experience dissolution and decay of

their perceived selves. In essence, it is a spiritually based process whereby the

individual chooses what she terms as either 'death' or 'resurrection of self'. Attempts to

retain or regain pre-disability cognitive, social or physical health without a central

focus on growth of the essence of self (spirituality), Do Rozario claims are the path

towards self-destruction. Similarly, Vash (1981) concludes that the adversity of

disability is a positive opportunity for the development of the potential and truth of

self.

Conclusion

The physical, cognitive and social dimensions of health have all been

acknowledged as determinants of health (WHO 1980, 1997). However, a large body

of research have supported the role of spirituality as a determinant of health,

especially for people with disabilities. Such findings support theories of positive

coping with change, spiritually focused self-theory and arguments for a more

comprehensive definition of health and disability than that proposed by WHO. We

argued in this paper that often people face adversity that leads to permanent loss of

former physical, social or cognitive functioning. From a traditional WHO health

perspective, such dysfunctional states are perceived and defined as ill health.
However, if spirituality is viewed as the core and essence of life, indeed the only

permanent dimension of self, then health would be perceived and defined somewhat

differently than just optimal functioning of the objective dimensions of self. Indeed, if

overall health is dependent on the health of the spiritual dimension as we have argued

here, then accessing this dimension ought to lead to positive effects on the health

status of the cognitive, social and physical dimensions.

What does this mean for rehabilitation counselling? The magnitude of

relationships, connections, life purpose and sustainable belief structure would be

indicators of present spiritual acknowledgement and utilisation. The argument

forwarded here is that all people have the inherent potential to access these resources.

Therefore, a focus on moving perception away form a focus on loss of self to those

aspects of self (for example, relationships with self, other and nature) and purpose in

life will facilitate the individual to explore themselves and their place in the world. A

spiritual focus does not rely on the health professional raising such issues directly

(unless prompted by the client) but to provide a catalyst for the individual to begin

their own journey of discovery if they so wish.

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Biographical Note

Kieren Faull has a Masters of Social Science (Waikato) and is a doctoral

health psychology researcher at Queen Elizabeth Hospital, Rotorua, New Zealand.

Personal experience of disability has led to a midlife career change form farming and

shearing to that of researcher with a focus on the concepts of health, self and coping

with adversity.

Dr. Thomas Kalliath is a Lecturer in the Department of Psychology at the

Waikato University in New Zealand. He received his Ph.D. from the Washington

University in St. Louis, USA. His current teaching and research interests are in

organizational change and development, experiential learning, job burnout and

spirituality. Tom has published in some of the leading journals in the field, and has

over 24 years of work experience as a hospital administrator, organizational

development consultant, and an academic in India, the USA and New Zealand.

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