Keywords
aphasia - spirituality - religion - coping
Learning Outcomes: As a result of this activity, the reader will be able to:
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Describe the diverse religious and spiritual belief systems those working with persons
with aphasia may encounter.
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Explain the intersection of religion, spirituality, and health within the context
of aphasia.
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Discuss the clinical importance and implications of religion and spirituality.
Awareness of the intersectionality of a person's religious and spiritual belief system
with their mental and physical health is slowly being elevated within the Western
healthcare system. Acknowledgement of the importance of religion and spirituality
in health has been witnessed for thousands of years in practices such as Traditional
Chinese Medicine, Ayurvedic Medicine, and Indigenous Medicines (Kessler et al., 2013;
Ortiz et al, 2008; Shi & Zhang, 2012). Within the contemporary Western medicine, there
was a secularization of healthcare in the mid-20th century (Koenig, 2000); however,
more recently there is a growing recognition that a holistic approach to health involving
the trifecta of mind, body, and spirit is critical in treating humans across a wide
array of illnesses (Karff, 2009). This is particularly relevant in the area of aphasia
rehabilitation as there is a growing literature exploring a more holistic approach
to treating aphasia (e.g., Marshall & Mohapatra, 2017) and an expanding literature
recognizing the cultural and linguistic diversity of the people that we serve (Centeno
et al., 2020; Larkman et al., 2023; Mellahn et al., 2023; Nguy et al., 2022). However,
the religious and spiritual aspects of this holistic approach remain underexplored
and relatively ignored. A greater understanding of the effect of all religions and
spirituality on health is needed in the field of aphasiology in order to improve clinical
services to all individuals affected by aphasia who hold diverse religious and spiritual
beliefs. The need to better understand and provide appropriate clinical services is
included within the American Speech-Language-Hearing Association's (ASHA's) Issue
in Ethics statement (2017) which outlines for speech-language pathologists the requirement
for providing ethically appropriate services to all populations while recognizing
their own and clients' backgrounds. The statement notes religion as one of several
factors to be considered within culture and cultural diversity. Honoring the religious
and spiritual diversity of the people served by speech-language pathologists is a
critical piece of providing competent, individualized, person-centered care.
Religion and spirituality are terms commonly used interchangeably to represent similar,
albeit different, constructs (Ammerman, 2013). This lexical overlap reveals the complexity
of the phenomenon each term struggles to describe—a complexity potentially tied to
one's individual experiences and cultural background. Here we attempt to distinguish
the two terms following Hill et al.'s (2000) suggestion that religion and spirituality
are distinctly different, while acknowledging the many definitions of religion and
spirituality existing in the literature, mostly from a Western perspective. Further
support for differentiating religion and spirituality arises from a survey conducted
in the United States revealing that 27% of adults in the United States consider themselves
as spiritual but not religious, while 48% report being both religious and spiritual
(Lipka & Gecewicz, 2017).
The term religion was established as a modern, Western concept (Fitzgerald, 2000)
defined as a multi-dimensional institution with focus on a divine object, salvation
or ultimate good-based goals, and provides function or meaning to life (Byrne, 1988).
By predominant definition today (Hill et al., 2000), religion includes any “adherence
to a belief system and practices associated with a tradition in which there is agreement
about what is believed and practiced” (Worthington et al., 2011, p. 205). Noting the
complexity of defining spirituality, Swinton (2010) approaches a definition from multiple
interactive perspectives (e.g., generic [human universal without specific traditions],
biological [serves as biological and evolutionary purposes], and religious [transcendence,
projection, and behavior]). Similarly, Puchalski et al. (2009) described spirituality
as a search for meaning and purpose, as well as connectedness to others, self, nature,
and the significant or sacred, interacting with secular, philosophical, religious,
and cultural beliefs. Others suggest that spirituality is an individual's more general
search for closeness to the sacred (Davis, Hook, & Worthington, 2008; Hill et al.,
2000) with sacred being defined as feeling of connectedness to God, nature, humanity,
or the transcendent (Westbrook et al., 2018). In this sense spirituality can encompass
religious spirituality, feelings of those who are spiritual but not religious (Diener
et al., 2011), and any aspect of sacred meaning within one's life (Westbrook et al.,
2018). See MacKenzie and Mumby (2022) and McSherry and Cash (2004) for further discussion
of defining spirituality in the context of healthcare. While recognizing the diversity
of interpretation of the terms religion and spirituality in culturally, linguistically,
and geographically diverse individuals, within the current article we do attempt to
separate the two constructs by using both terms throughout the article. Notably, much
of the literature cited within this article may use different definitions of religion
and spirituality further highlighting the complexity of the topic of religion and
spirituality.
To extend the recognition of religion and spirituality's importance in healthcare
to persons living with post-stroke aphasia while emphasizing the diversity of beliefs,
the current article seeks to provide a brief overview of global religions to highlight
the diverse religious belief systems those working with persons with aphasia may encounter;
explain the intersection of religion, spirituality, and health; review the existing
literature in the area of aphasia and religion, spirituality, and spiritual care;
discuss the clinical importance and implications of religion and spirituality; and
finally, lay out a forward view of the direction this area for exploration may take
within aphasiology.
Global Religions
Within our pluralistic world, more than 85% of people (Hackett et al., 2015) identify
with a religion. Of the world's population, 31.2% identify as Christians, 24.1% as
Muslims, 16% as unaffiliated, 15.1% as Hindus, 6.9% as Buddhists, 5.7% as followers
of Indigenous religions (e.g., African Indigenous religions, Chinese Indigenous religions,
Native American religions, and Australian Aboriginal spiritual frameworks), 0.8% as
followers of other religions (Bahai's, Jains, Sikhs, Shintoists, Taoists, followers
of Tenrikyo, Wiccans, Zoroastrians), and 0.2% as Jewish (Hackett et al., 2015). As
mentioned earlier, each of these religions has traditions that connote beliefs in
some form of divinity, goals for salvation or ultimate good, and provide meaning to
life. To aid speech-language pathologists in recognizing the diversity of the religious
traditions the people they serve may possess, a brief description of these religions
are provided below.
Abrahamic religions, including Judaism, Christianity, and Islam, all originated in
the Middle East as monotheistic and prophetic in nature (Silverstein et al., 2015).
The doctrine of these religions includes a belief that God gives direction to people
through prophets (Vitkovic, 2018). Judaism traces its origins to the prophet Abraham,
the father of the Jewish, or covenant, people (Goldenberg, 2007). Contemporary Jews
refer to Judaism to define both a secular ethnicity and religion, with the latter
focusing on the relation between a loving God and His chosen people (Wylen, 2000).
The purpose of life is found in serving God through the study of the Torah, which
provides salvation from sin (Wylen, 2000). Within Christianity, salvation from sin
comes through the founder Jesus Christ, who called himself the Savior or Messiah (McGrath,
2006). He was a Jewish man (Sonderegger, 2010) proclaimed to be the Son of God (Bloesch,
2005) on Earth to fulfill Mosaic law (Adeyemi, 2006) and perform the atonement for
redemption from sin by giving up his life through crucifixion and being resurrected
(Holland, 1992). Teachings of Christianity include the process to overcome the sinful,
natural state of man and provide meaning to life through an established method to
return to live with God again (Bilezikian, 2009). Within Islam, the life and teachings
of Jesus Christ are viewed as prophetic but not godly counsel (Akyol, 2017). Muhammad
is the founding prophet of Islam, born 570 A.D., who was visited by the angel Gabriel
many times over the course of 20 years (Azzam & Gouverneur, 1985). The messages given
by the angel Gabriel were teachings that came directly from Allah (God) and were recorded
in the Quran (Wheeler, 2002). Muslims adhere to six articles of faith, including belief
in God, eternal life after death, angels, scripture, prophets, and that God has a
plan (Beversluis, 2011).
Eastern religions, such as Hinduism, are viewed as more than a religion but also a
culture or Purushartha-way of life (Rajasakran et al., 2014). There are four Purusharthas
or goals of Hinduism, including dharma (virtue), artha (material wealth), moksha (transcendence),
and kama (pleasure; Salagame, 2013, p. 379). Hindus rely on the teachings in sacred
scriptures called Shruti “that which is heard,” which are canonical revelations like
the Bhagavad Gita and Vedas, and Smriti “that which is remembered,” which includes
humanistic teachings for guidance on worship, daily activities, and rituals (Britannica,
2015). Buddhism is an Eastern religion with a known founder named Siddhartha, who
originally practiced Hinduism (Keller, 2012). After observing the four sights of old
age, illness, death, and an ascetic, and gaining enlightenment through asceticism,
Siddhartha became Buddha (one who is fully awake; Keller, 2012) and shared his pathway
to enlightenment with his followers. Buddhists follow the Four Noble Truths, which
explain the disease of suffering in life, the cause of suffering as desire, the cure
of suffering through desire cessation, and the medicine, which is the path to cease
desire (Gethin, 2010). Another Eastern religion is Confucianism, which is both a system
of thought and behavior that provides traditions, philosophy, religion, and a way
of life for its followers seeking to find harmony (Yao & Yao, 2000).
There are many other established religions that combine philosophy, tradition, and
spiritual beliefs. Within Chinese culture, oracle bone inscriptions from 4000 years
ago provide evidence of early Indigenous religiosity that included ancestral cult,
divination, sacrifice, priesthood, and shamanism (Ching, 2016). Values include veneration
of spirits and ancestors, loyalty, benevolence, wisdom, and honesty. It is also common
to see worship of deities, fortune-telling, feng-shui, the use of charms, and other
adopted values from neighboring religions (Wong, 2011). African Indigenous religions
similarly include ancestral veneration (Ching, 2016). They are diverse, but share
a common emphasis with healing (Shoko, 2016). Additionally, African Indigenous religions
include an emphasis on prosperity, longevity, vitality, and fertility, while also
providing explanations (i.e., sickness is due to imbalances in relationships with
spirits; Olupona, 2014). Traditions are embedded in oral myths, rituals, folktales,
proverbs, paintings, sculptures, music, and dance (Aderibigbe & Medine, 2015). Native
American Indigenous religions vary by nation, tribe, and are commonly passed down
through oral histories that rely heavily on experiential learning and interaction
with land and creatures (Martin, 2001). Key concepts include health, harmony, virtues,
wisdom, and beauty (Gill, 2002). Native American religiosity was persecuted and denied
during early colonialism (Irwin, 1996). Each tribe had its own religion where elders
taught children through stories and ceremonies. Despite the support for and resurgence
of Native American culture, many of these religious traditions have been lost (Reyhner,
2006).
Diverse beliefs across Abrahamic, Eastern, and Indigenous religions provide meaning
to life and greatly influence the day-to-day life of adherents. Understanding the
relation and impact of one's religious beliefs on health is quite complicated given
the number of religions globally and the different religious practices each contain.
Religion can also be a source of great peace, comfort, and direction during turbulent
times in life such as illness or injury. Integrating culturally sensitive care can
lead to more holistic healthcare approaches. By acknowledging the significance of
religious beliefs, healthcare providers can create supportive environments for patients
and the intersection of their religion, spirituality, and health.
The Intersection of Religion, Spirituality, and Health
The Intersection of Religion, Spirituality, and Health
These many global religions combined with their related practices are paths for engagement
in a community and have demonstrated effects on physical and mental health, with psychological
and social factors believed to be routes for these effects (Koenig & Koenig, 2008).
Harold Koenig is noted as a trailblazer in the intersection of religion, spiritual
beliefs, and health (Aten & Schenck, 2007), taking a once fringe topic and bringing
it to a more mainstream awareness (e.g., Koenig, 2000; Koenig et al., 2012); he reports
that an explosion of studies in the area of health and religion and spirituality has
occurred since the beginning of this century (Koenig, 2012). An understanding of this
topic has been pursued by a wide array of disciplines (e.g., economics, law, psychiatry,
nursing, pastoral care) each bringing unique backgrounds to its study, thus resulting
in a scattered dissemination of information (Koenig, 2012). A combination of multiple
disciplines possessing esoteric approaches and differing dissemination outlets along
with consideration of global social, cultural, and economic factors is challenging
when attempting to concisely summarize current knowledge in this area. Similarly,
methodological variables such as defining terms and different approaches to gathering
information about religion or spirituality, as well as under-representation of racially,
ethnically, or other marginalized groups, have influenced contemporary knowledge of
these constructs and their relation to health. However, with these caveats in mind
overall, numerous studies within the area of physical health show that religiosity,
or one's adherence to religious practices, beliefs, and principles (Ellis et al.,
2019), may be a protective agent for increased longevity (Chida et al., 2009; Ebert
et al., 2020; Hummer et al., 1999; Lucchetti et al., 2011; Powell et al., 2003; Wallace
et al., 2019). For example, Li et al. (2016) found in a sample of 74,534 women in
the United States identifying with various religious backgrounds that those attending
a religious service more than once per week (one aspect of religiosity) have lower
levels of mortality. Associating religiosity with mortality and physical health has
been studied across different cultures, geographies, and sex (Hill et al., 2020; Nicholson
et al., 2009; Oman et al., 2002; Seybold & Hill, 2001; Zimmer et al., 2020). One's
religiosity may also be a potent variable (with mixed negative and positive associations)
in diseases related to mortality, such as cancer (e.g., Almaraz et al., 2022; Elkhalloufi
et al., 2022; Fradelos et al., 2018; Kugbey et al., 2020; Moorman et al., 2019; Thuné-Boyle
et al., 2006; Thygesen et al., 2012; Van Ness et al., 2003) and cardiovascular disease
(Brewer et al., 2022; Elhag et al., 2022; Seybold & Hill, 2001; Svensson et al., 2020).
Factors associated with religiosity that may negatively affect mortality include delaying
diagnosis of cancer (Moorman et al., 2019) and a reliance on an external locus of
control (believing God controls health; Kinney et al., 2002), whereas the context
of religious service attendance may have a positive effect on mortality (Bruce et
al., 2022) Relatedly, one religious practice, fasting during Ramadan, has been shown
to improve some aspects of the cardiovascular system (lipid profile, oxidative stress;
Ahmed et al., 2022; Al-Shafei, 2014; Naz et al., 2022), although fasting is not recommended
for all individuals due to some health concerns (Malinowski et al., 2019). Additionally,
Stavrova (2015) and Ebert et al. (2020) noted that any health and mortality benefits
of religiosity across religions and cultures are limited to regions where religiosity
is considered common and socially desirable; therefore, when considering the effects
of religiosity on aspects of health, one should consider the acceptance of practices
in their living context. Contextual acceptance of religious practices is an important
consideration in the area of intersectionality and cultural diversity as it may affect
some aspects of health.
Religiosity and spirituality are noted to have protective effects on multiple aspects
of mental health in general and some clinical populations. A number of studies have
explored the relation between religiosity and spirituality with life satisfaction
and overall well-being across cultures, religions, and countries (Jung & Ellison,
2022; Kim-Prieto & Miller, 2018; Okulicz-Kozaryn, 2010; Sholihin et al., 2022). For
example, across the Jewish and Christian religions, Vishkin et al. (2019) found a
positive correlation between religiosity and life satisfaction. In a review of studies
investigating well-being, Koenig (2012) reported that 79% of studies found a positive
relation between well-being and religiosity and spirituality. Although there are a
large number of studies indicating the benefits of religiosity and spirituality on
well-being, others suggest negligible or small effects (Diener & Clifton, 2002; Garssen
et al., 2021; Okulicz-Kozarn, 2010). Several mediators of these findings have been
suggested (Fiori et al., 2006; Greene & Yoon, 2004). For instance, Fiori et al. (2006)
studied locus of control [external (rewards determined by fate, luck, etc…) and internal
(outcomes rely on one's choices and actions)] and its relation with life satisfaction
and religiosity in the context of age, gender, and race in a sample from the United
States. Differences in locus of control as a mediator for the relation between religiosity
and life satisfaction were found between older and younger adults, as well as male
and female participants, but no differences in race were discovered. Furthermore,
Greene and Yoon (2004) studied the influence of socioeconomic variables on life satisfaction
as it relates to religiosity in a European sample finding that income inequality reduces
perceived life satisfaction. Additionally, Okulicz-Kozaryn (2010) studied a sample
from 79 different countries and found that religiosity with high social capital (e.g.,
value of social networks) positively predicts life satisfaction. These studies highlight
the need to consider multiple variables when determining the role of religiosity and
spirituality in the context of health.
Almost 4% of the global population has a diagnosed anxiety disorder and 4.4% has a
depression diagnosis (WHO, 2017), with indication that these rates significantly or
modestly increased as a result of the global pandemic (Santomauro et al., 2021; Kessler
et al., 2022). These large numbers present an urgency to better understand protective
variables that can mitigate the occurrence of anxiety and depression. In the vast
literature related to religiosity, spirituality, anxiety, and depression, most reports
suggest that religiosity and spirituality offer protection against these mood disorders
(Baetz et al., 2004; Baetz et al., 2006; Hope et al., 2017; Koenig, 2012; Marques
et al., 2022; Moreira-Almeida et al., 2006; Scott et al., 2022; Steiner et al., 2017).
However, there is also evidence that negative or no associations exist (e.g., Lupo
& Strous, 2011; Storch et al., 2002). Relatedly, suicide, which is in opposition to
most faith traditions, may be inversely related to religiosity or more religious geographic
regions (Amit et al., 2014; Koenig et al., 2012; Garroutte et al., 2003; Rasic et
al., 2009) or unrelated to one another (Eshun, 2003). Substance addiction, an additional
mental health disease (Koenig et al., 2020; Volkow et al., 2016), has also been studied
as it relates to religiosity and spirituality. In a 2008 systematic review on this
topic, Chitwood et al. (2008) found that across countries higher levels of religiosity
and spirituality are related to reduced substance use, although there does appear
to be sampling bias with college students and methodological issues across studies.
In more recent work, Mak (2019) showed a positive association between church attendance
and substance non-use. Similarly, a meta-analysis of studies from 2008 to 2018 showed
religiosity was a protective variable in reducing alcohol use (Russell et al., 2020).
Given that there are many reports of religion and spirituality acting as protective
factors in the broad area of health (although we recognize the conflicting evidence),
there have been several proposals describing the mechanism by which religiosity and
spirituality may exert their effects on physical and mental health. Koenig (2012)
offered perhaps the most comprehensive overview explaining how religiosity and spirituality
may have physical and mental health effects. Koenig (2012) provided the following
as potential mechanisms for religion and spirituality's mental health effects: (1)
provides coping resources such as strongly held beliefs; (2) gives meaning to challenging
life situations; (3) provides purpose to life; (4) gives a sense of control over life
events; (5) reduces existential angst; and (6) provides a doctrine about how to live
life and the treatment of others (compassion, love). Overall, he indicates that the
mechanism may be a buffering of stress and elevation of positive emotions which in
turn promotes better mental health. However, he does note that religion can also be
used to promote negative emotions (e.g., exclusion of others) which will have an inverse
relation with mental health.
There is strong evidence that the mind influences many human biological systems including
our immune system, cardiovascular activity, endocrine function, and brain health (Babayan
et al., 2019). Thus, religion and spirituality mechanisms influencing mental health
will have a cascade effect on physical health. For instance, research suggests that
some individuals who rate higher on religiosity engage in less smoking behavior, less
sexual promiscuity, and have better diet/exercise habits (Koenig, 2012; Lalayants
et al., 2020; Whitehead & Bergeman, 2020); avoiding these behaviors positively affect
physical health. Considering one aspect of the mechanism of religion and spirituality
as a buffer of stress, the connection between stress and disease is well-established.
Both acute and chronic stress responses are related to the two biological arms of
the stress response (hypothalamic–pituitary–adrenal axis and the sympathetic–adrenal–medullary
axis) which lay the foundational relation between stress and disease. For instance,
chronic stress engages these systems and affects the immune system by altering lymphocytes
(the main types of immune cells) and can be further broken down into T and B cells;
T cells produce cytokines and B cells produce antibodies (Seiler et al., 2020). These
cells collaborate with other cells to create a balance that supports the immune system.
An imbalance will result in a suppressed immune system which then allows viruses,
bacteria, etc, to propagate within the human body resulting in disease (Seiler et
al., 2020). Vascular and endocrine diseases are also linked to chronic stress (Hahad
et al., 2019). Therefore, religion and spirituality could indirectly protect against
multiple pathophysiologies if they are indeed perceived as stress buffers in an individual.
Stroke, Religiosity, and Spirituality
A more focused look at one aspect of health, stroke recovery, allows us to understand
the contribution of religion and spirituality within the smaller context of stroke
rehabilitation. Keeping with the idea that religiosity and spirituality act as a coping
resource, the summary will be limited to how religion and spirituality may be relied
upon as a coping resource (e.g., religious coping; Zinnbauer et al., 1997) during
the rehabilitative process. In an earlier study exploring religiosity and spirituality
in post-stroke recovery, Giaquinto et al. (2007) examined the relation between these
variables and emotional distress in 162 stroke survivors in Italy. Findings suggest
that religiosity is associated with lower levels of distress, unless the stroke was
believed to be punitive. Relatedly, Johnstone et al. (2008) found spiritual beliefs
in a higher power are positively associated with better mental health. Similarly,
Lamb et al. (2008) found in their systematic review that for older adults (over 65
years) who experienced stroke and reported spiritual beliefs, connection to others
and spiritual connection were potent variables in stroke recovery. Along with recognizing
individual responsibility and the need to follow medical advice, Moorley et al. (2016)
report in their sample of seven African Caribbean women that belief in God was a positive
contributor to their post-stroke health and recovery. For those in which religious
practices were altered (e.g., church attendance), modifications were made such as
turning to personal prayer or reading prayer books. Conversely, within a sample of
40 female stroke survivors who identified as Muslim, religiosity was not associated
with life satisfaction (Omu et al., 2014). Prayer has been noted as an important aspect
of religious coping (Thomas & Barbato, 2020) and for some religious faiths considered
a therapeutic exercise (Osama & Malik, 2019). Robinson-Smith (2002) examined prayer
in eight stroke survivors and found prayers were focused on regaining skills and increasing
confidence, and, overall, contributed to relieving the stroke burden and lessening
the crisis of stroke. Bays (2001) found that faith in God provided hope to persons
post-stroke during recovery. Chow and Nelson-Becker (2010) found that spiritual transformation
as a tool for resilience was important in post-stroke recovery in a sample of females
in Hong Kong. Skolarus et al. (2012) suggested that spirituality may be a mediator
of increased mortality in stroke survivors. However, Morgenstern et al. (2011) did
not find any relation between spirituality and stroke recovery. Although these studies
utilized differing techniques in gathering information (semistructured interviews,
rating scales) across varied time post onset of stroke, religions, spiritual practices,
and countries, the majority of findings suggest that religiosity and spirituality
may be helpful for mental health aspects of stroke recovery. Interestingly, the two
studies not finding an association between religiosity, spirituality, and stroke recovery
(Omu et al., 2014; Morgenstern et al., 2011) both utilized a quantitative approach
to gathering information about religiosity and spirituality. Methodological consistencies
across studies including use of specific rating scales and infusion of qualitative
approaches will further advance our knowledge of the contribution of religiosity and
spirituality to stroke recovery.
Overall, the effects of religiosity play influential roles in physical health, longevity,
disease state, mental health, addiction, immune system function, and human biology.
Many of these topics arise in stroke care and rehabilitation, and may be important
variables to consider. It is for these reasons that the intersectionality of religion,
spirituality, and health becomes poignantly relevant within aphasia rehabilitation.
Aphasia Rehabilitation, Religiosity, and Spirituality
Aphasia Rehabilitation, Religiosity, and Spirituality
In contrast to Koenig's (2012) observation that there was a seismic growth of published
studies in the area of religiosity, spirituality, and health since the turn of the
century, the more discrete area of post-stroke aphasia rehabilitation is experiencing
a slower paced growth. As noted by Sherratt and Worrall (2020) in their review of
posttraumatic growth in persons with aphasia (which includes spiritual change), there
is very little reference to spirituality in the aphasia literature. Additionally,
exclusion of persons with aphasia or strict auditory comprehension inclusion criterion
in post-stroke recovery, religion, and spirituality studies has challenged the growth
of our knowledge in the area of aphasia and religiosity and spirituality (Bays, 2001;
Morgenstern & Kissela, 2015). Given that 30% of stroke survivors live with aphasia
(Grönberg et al., 2022) and reports suggesting over half of adults identify with religious
and/or spiritual beliefs (Smith et al., 2016), there is great importance in better
understanding how these variables may influence post-stroke aphasia recovery. The
existing literature in the area of religiosity, spirituality, and aphasia rehabilitation
is sparse and scattered. Below we attempt to thread together the ideas presented across
the different studies to form a description of the current state of our knowledge
in this area.
There is emerging literature exploring the influence of religiosity and one's spirituality
on post-stroke aphasia recovery across culturally and linguistically diverse populations.
For instance, Kardosh and Damico (2009) noted that “divine will” is attributed as
an important factor in aphasia recovery and linked to one's religious beliefs. Khamis-Dakwar
and Froud (2012) described the religious diversity within Arab Americans and suggests
that Arab American communities' reliance on higher powers and involvement with Church,
Mosque, or community healers are essential during aphasia rehabilitation and need
to be considered in regard to their engagement with rehabilitation. Ulatowska et al.
(2021) refer to the importance of acknowledging the value of religion within Filipino
culture and its contribution to fostering positivity in aphasia recovery. In a primer
describing key principles for aphasiologists interacting with Asian Indians with aphasia,
Hallowell et al. (2012) noted that religious beliefs influence social interactions
and act as a source of control for healing (external source such as dharma) instead
of personal control.
Considering religiosity, spirituality, and post-stroke aphasia across diverse populations
can occur within the context of Living with Aphasia: Framework for Outcome Measurement [A-FROM (Kagan et al., 2008)], the Life Participation Approach to Aphasia (LPAA;
Chapey et al., 2001), or a social model of aphasia rehabilitation (e.g., Simmons-Mackie
& Kagan, 2007. A-FROM recognizes the language environment (e.g., awareness of aphasia
within one's religious or spiritual community), participation (e.g., attending religious
worship), and personal factors (e.g., emotions, religion, personal beliefs) in living
with aphasia and approaching assessment and intervention of aphasia. Additionally,
A-FROM, LPAA, and a social model of aphasia rehabilitation could consider approaching
religiosity and spiritual beliefs as a method of belonging to a social community.
Relatedly, as noted earlier, one's religious and spiritual beliefs may be considered
a coping resource (Pargament et al., 2000) that persons with aphasia could rely upon
to help manage their emotions and attitudes toward their communication impairments.
Coping resources can be considered within the aphasia and neuropsychobiology of stress
framework ([Fig. 1]) proposed by Laures-Gore and Buchanan (2015) in which coping is an individual factor
which may mitigate the stress response.
Figure 1 Framework for aphasia and the neuropsychobiology of stress (Laures-Gore & Buchanan,
2015). (Reprinted with permission from Taylor & Francis Group, The Journal of Clinical
and Experimental Neuropsychology [https://www.tandfonline.com/]. Laures-Gore JS, Buchanan TW. Aphasia and the neuropsychobiology of stress. Journal
of Clinical and Experimental Neuropsychology 2015;37(07):688–700. Doi: 10.1080/13803395.2015.1042839.)
Coping Resources
Addressing the mental health of persons with aphasia is an important part of the rehabilitation
process because of its impact on functional outcomes and mortality (Eriksson et al.,
2016; Morris et al., 1992; Williams et al., 2004; van de Weg et al., 1999). For instance,
post-stroke depression, which has a 60% prevalence in persons with aphasia (Kauhanen
et al., 2000) and its symptoms are 7.408 times more likely to be noted in persons
with aphasia than in persons post-stroke without aphasia (Zanella et al., 2022), can
negatively affect rehabilitation outcomes (Laures-Gore et al., 2020). Furthermore,
stress can interact with language performance in persons with aphasia (Cahana-Amitay
et al., 2011; Silverman McGuire et al., 2020) and post-stroke anxiety can be detrimental
to rehabilitative progress (Shimoda & Robinson, 1998). As a result of aphasia, reports
of social isolation and a reduction of friend networks are frequently noted by persons
with aphasia (Worrall et al., 2016) having a negative effect on one's well-being.
These studies complement other work in the greater aphasia literature emphasizing
the importance of coping resources, styles, and skills on living with aphasia (Harmon,
2020; DuBay et al., 2011). Religion and spirituality can support adjustment to stressors
through meaning making, coping, and resilience (Davis et al., 2019).
Religious coping is conceptualized as understanding and managing stressors in ways
connected to the sacred (Pargament, 1997). Pargament et al. (2011) summarized the
many facets of Pargament's (1997) theory of religious coping by noting it is multimodal
(behaviors, relationships, emotions, cognitions), multivalent (positive; e.g., treating
God as a partner), and negative coping (e.g., passive dependence on God to resolve
the problem, seeing the event as punishment; methods), and it is dynamic (changes
over time). Pargament (1997) also proposed the combined religious moderator-deterrent
model which proffers that as stress increases, religious coping increasingly protects
someone from stress (Xu, 2016). Religious coping has been linked to quality of life
(QOL) in cancer patients (Tarakeshwar et al., 2006) and has been explored as it relates
to the recent COVID-19 pandemic (Thomas & Barbato, 2020).
Within the aphasia literature, in an earlier study investigating coping with aphasia
(Parr, 1994), religious belief was included as one of the coping strategies measured
in 20 persons with aphasia and some of their co-survivors. Fifteen percent of the
participants (3 of the 20 participants) indicated that religious belief was important
in coping with aphasia. One person with aphasia reports that “she has become deeply
religious since her illness, and this reinforces her belief that she can recover fully”
(p. 463). An additional 10 participants in this sample of 20 total participants noted
that they maintained a moderate amount of involvement in religious worship, but did
not view it as helping them to cope with their current situation. The results of the
study indicate that there is great diversity in ways of coping with aphasia and that
for some, religious beliefs may be one of several factors [e.g., fatalism, optimism,
control (Viney & Westbrook, 1984)] in successfully coping with living with aphasia.
Relatedly, Parr (1995) studied roles in persons with aphasia including involvement
in religious practice and found that after acquiring aphasia, some participants reported
more religious involvement.
Holland et al. (2010) analyzed scripts co-constructed by persons with aphasia and
clinicians for themes within the context of monologues and dialogues. Prayers were
noted as a theme in monologues (not dialogues) and 6 of the 28 monologues included
a prayer, testimonial, speech, and lecture theme. The authors noted that church testimonials
or prayers were important in the monologues; however, few clinicians address spiritual
matters. Holland et al. (2010) continued that being unable to say the central prayers
of one's religious convictions could be devastating for many individuals with aphasia
as prayers and testimonials were affirmative and positive. They note that the scripts
reflect a belief that religion played a role in recovery and that prayers were often
utilized for strength and persevering in aphasia recovery.
Through both qualitative and quantitative data collection, Laures-Gore et al. (2018)
explored spirituality in 13 adults with aphasia in the southeastern United States.
Using a modified and truncated version of the Trait Sources of Spirituality Scale (Westbrook et al., 2018), four participants described themselves as spiritual (31%),
whereas nine described themselves as spiritual and religious (69%); characterizations
of what the sacred meant resulted in diverse responses with God or personal deity
as the most common definition. Interviews revealed that 11 of the 13 participants
(85%) noted that religion or spirituality contributed to their recovery from stroke
and importantly to their improvements in communication. Two themes related to their
recovery emerged, a belief that a greater power was in control of events (there was
a plan for their experience) and the other a belief in a greater power as helper,
noting their relation with God was a source of strength during their recovery. Religious
practices (e.g., worship, prayer, meditation, Bible reading) kept them in relation
to God; and people in their lives were important in their recovery (additionally noted
earlier by Holland et al., 2010). Some commented that connection to others has a spiritual
meaning to persons with aphasia. The authors consider this acknowledgement of religion
or spirituality to one's recovery within the context of coping as an individual factor
within the neuropsychobiology of stress framework for persons with aphasia (Laures-Gore
& Buchanan, 2015).
In a series of studies and perspectives, MacKenzie and Mumby along with colleagues
have developed a line of inquiry exploring religion and spirituality in persons with
aphasia (MacKenzie, 2016; MacKenzie & Marsh, 2019; Mumby, 2019; Mumby & Grace, 2019;
Mumby & Roddam, 2021; MacKenzie & Mumby, 2022). For instance, MacKenzie and Mumby
(2023, p. 65) provided accounts from age and occupation-diverse persons with aphasia,
noting that religion and spirituality are not the same thing. One person with aphasia
described spirituality as “looking for a meaningful connection with something bigger
than yourself” (p. 64); connection was echoed by others interviewed. Furthermore,
some viewed religion as a moral compass and the rituals that accompany religion as
important. The authors emphasize that persons with aphasia may have difficulty talking
about abstract things such as religion and spirituality which can make discussions
about this topic challenging. Overall, participants note that aphasia had a profound
effect on their spirituality, affecting their life view and strengthening their spiritual
beliefs. The authors comment that spirituality was part of coping for some of the
persons with aphasia.
Quality of Life
Religiosity and spirituality also have been considered within the realm of QOL (LaPointe,
1999) and studied with both a quantitative and qualitative method. Ross and Wertz
(2003) explored QOL in the United States using the World Health Organization Quality
of Life-Short Form (WHOQOL Group, 1998) which included a religious and spiritual domain.
The authors defined QOL according to the World Health Organization (WHO, 1996) which
included “perceptions of their position in life in the context of culture and value
systems… in relation to their goals, expectations, standards and concerns” (p. 355).
Spiritual/religious/personal beliefs showed some weak discrimination between QOL for
those living with aphasia and a control group (no brain injury or brain damage, no
aphasia) with a 72 to 89% degree of overlap between the two groups and their consideration
of these beliefs affecting their QOL. Such results suggest that both groups view their
beliefs as important contributors to QOL, but it is not indicated which group is higher
or lower in their attribution of these beliefs to QOL. Cruice et al. (2010) in their
study of important variables contributing to QOL in 30 participants from Australia
noted that for one participant her aphasia negatively affected her ability to provide
religious ministry, thus affecting her QOL. This study utilized a structured interview
using six open-ended questions and allowed the participants to define QOL. Additionally,
we note that the larger literature in aphasia and QOL identifies a lack of inclusion
of persons with aphasia in the development of QOL questionnaires (Charalambous et
al., 2020). This exclusion could negatively affect the knowledge gained about the
role of religiosity and spirituality in the QOL of persons with aphasia. Furthermore,
because QOL differs across cultures, it is important to explore QOL more globally
(i.e., beyond the Western perspective) as emphasized in Haraldstad et al.'s (2019)
systematic review.
Life Participation
Fotiadou et al. (2014) explored 10 blogs written in the English language by persons
with aphasia (7 American, 2 British, 1 Turkish) and noted that aphasia was the impetus
for some to become more active members in groups, including religious groups. Reading
religious material is an important aspect for participation of some persons with aphasia
as noted in a case report of a bilingual individual (Spanish and Galician languages;
García-Caballero et al., 2007). Also, in an earlier study conducted in the United
States, religious passages were used to assess auditory comprehension (Waller & Darley,
1978). Dalemans et al. (2008) reviewed literature written in the English language
regarding the social participation of working-age persons with aphasia including the
social domain of community, civic, and social life including religion and yielded
three articles in this area with none describing participation in organized religion.
These findings highlight the need to incorporate religion and spiritual practices
into measures of life participation globally across cultures and languages.
Involving Spiritual Healthcare Providers
Laures-Gore et al. (2021) distributed a survey to spiritual healthcare providers (e.g.,
chaplains, clinical pastoral educators, and pastoral counselors) across the United
States inquiring into their training with aphasia, aphasia awareness, and knowledge
of aphasia. A specific religious affiliation was not a criterion for inclusion in
the survey. The majority of respondents were aware of aphasia and could identify the
correct definition of aphasia. Most respondents had not been formally trained in aphasia.
Given the low awareness in the general public (Code, 2020), these numbers are encouraging.
Baker (2022) described his work with persons with communication disorders from a chaplain's
perspective and highlights the importance of spending time with a person to learn
their language and the importance of building trust, using other forms of communication,
not just verbal, such as gestures, vocalizations, drawing, or writing. Using the eyes
to communicate and the significance of silence as a communication tool (“being with
them in their habitat is valuing them as people,” p. 149). He uses a “book without
words” consisting of photos he's taken that can be used for prayer or reflection.
He recognizes the diversity of rituals across religious and spiritual beliefs and
emphasizes that communication aids need to reference these rituals. From a holistic
perspective, involvement of spiritual healthcare providers specific to a person with
aphasia's religious and spiritual belief system is an important yet understudied area
within aphasiology.
Defining Religion and Spirituality
MacKenzie (2020) described conversations with eight persons with aphasia in acute
or chronic stages of recovery. The guiding research question was “What is it like
to express your spirituality when you have aphasia.” Across the participants, definitions
of spirituality were different; three described spirituality and religion as linked,
whereas others viewed religion and spirituality as two distinct entities. Of those
individuals who identified with a religious belief, several indicated that stroke
and aphasia did not change their faith; one person indicated that God is good. Religious
practices remained important to some of the participants and some remained engaged
in religious activities, although modifications to their activities may have been
needed.
Overall, there is some evidence that religion and spirituality may be important factors
related to coping, QOL, and life participation in aphasia rehabilitation for some
individuals. Engaging spiritual healthcare providers is also important when considering
aphasia recovery. As noted earlier, Holland et al. (2010) highlighted the importance
of gaining the ability to say religious prayers, and others have noted the importance
of engaging in religious and spiritual practices as a method to remain connected to
one's community. The clinical implications for this aspect of rehabilitation are numerous.
Clinical Implications
Calls for considering the religious and spiritual beliefs of people served by speech-language
pathologists in general (MacKenzie & Mumby, 2023; Mathisen et al., 2015) and more
specifically within aphasia (Holland et al., 2010; Laures-Gore et al., 2018; Mumby
& Roddam, 2021; MacKenzie, 2020) are growing. As noted by Mathisen et al. (2015),
speech-language pathologists should become spiritually literate. This call to action
is particularly urgent as revealed by Mumby (2023) who discovered through interviews
with persons with aphasia that obtaining spiritual help during the rehabilitative
process was difficult or not addressed. Relatedly, Mumby (2023) noted that persons
with aphasia emphasized the need for professionals to feel free to talk about spirituality.
As noted earlier, A-FROM and the LPAA both provide structure for addressing religion
and spiritual practices and beliefs in aphasia therapy. Additionally, the need to
better understand coping resources and strategies in persons with aphasia is important
in order to strengthen mental health supports across culturally and linguistically
diverse populations. As well, speech-language pathologists working with persons with
aphasia recognize the importance of patient-centered outcomes.
Life Participation
Religiosity and spiritual beliefs and practices incorporated into the person with
aphasia's life participation will be diverse and solely reliant on one's traditions,
experiences, background, and culture. Furthermore, some person's with aphasia may
not desire to discuss religious or spiritual matters. Only when collaborative goal
setting identifies religion or spirituality as important to the person with aphasia,
then targeting functional goals to support the individual's spirituality or religiosity
may focus around prayer, worship service participation, or participating in small
group discussions about holy texts. Perhaps compensatory methods of spiritual connection
that rely less on linguistic components such as religious art or spiritual music could
be introduced. It may be necessary to raise aphasia awareness within one's religious
or spiritual community including spiritual leaders, or facilitate an exploration of
novel ways to foster life participation within religion and spirituality. Of the utmost
importance is the foundation of person-centered care within all goals. Additionally,
spiritual activities often provide opportunities for social interaction and language
use practice which contributes to positive rehabilitation outcomes (Laures-Gore et
al., 2018). Because the influence of spiritual healthcare providers has been linked
to QOL, coping, anxiety reduction, hospital care satisfaction, and medical decision
making (Damen et al., 2020; Poncin et al., 2020; Timmins et al., 2018), it is necessary
to ensure they are engaged as requested by the person with aphasia and/or family and
prepared to facilitate the person with aphasia's ability to actively discuss spirituality
and religion as the client finds comfortable and relevant to their life.
Mental Health/Coping
As noted in our earlier review, a handful of articles have shown that religious beliefs
and spirituality are important in coping with post-stroke aphasia. Speech-language
pathologists working with persons with aphasia should become familiar with ways in
which the person they are serving may use religious or spiritual beliefs to cope.
Considering that religious coping has a multimodal dimension, coping may take the
form of prayer or religious service attendance. If aphasia is hindering a person's
ability to access any aspect of religious coping, then an important buffer of stress
may be inaccessible to this person, in turn negatively affecting their mental health.
Understanding how one copes with stressors is important in supporting the mental health
of someone with aphasia.
Engaging Spiritual Healthcare Providers
In addition to increasing access to religious and spiritual practices for the person
with aphasia, it is also necessary to involve spiritual healthcare workers such as
chaplains, faith healers, and other religious teachers/guides appropriate to an individual's
culture and belief system in the rehabilitation process (Le Danseur, 2020). These
professionals play a key role in addressing both the spiritual and emotional needs
(Graves et al., 2002) of people with aphasia and have been positively linked to QOL,
coping, anxiety reduction, hospital care satisfaction, and healthcare decision making
(Damen et al., 2020; Poncin et al., 2020; Timmins et al., 2018). Speech-language pathologists,
physical therapists, and occupational therapists have all called spiritual healthcare
providers “invaluable” to the rehabilitation process (MacKenzie, 2016).
A dynamic, interactive approach could be considered while engaging spiritual healthcare
providers across cultures. This approach acknowledges the wisdom of the person with
aphasia, the spiritual healthcare provider, and the speech-language pathologist. Within
this approach, each learns from one another and respects contributions from each while
recognizing the sensitivity of this topic in some cultures. For example, Ovenden and
Mumby (2022) discussed their experiences as Western trained speech-language pathologists
in Eastern Africa and their journey toward understanding religion and spirituality
and its interaction with beliefs about disability within the Ugandan culture. Because
within the Ugandan culture, spirituality is an important part of their identity (p.
118), the authors recognized the need to spend time understanding specific spiritual
dynamics of the communities by learning from the persons they were serving and their
colleagues. They also noted that when Ugandan speech-language pathologists were asked
about the intersectionality of spirituality and speech-language therapy themes related
to hope (change can occur through the natural and supernatural), experiences of negative
traditional practices, clients seeking spiritual over medical healing, and personal
beliefs benefitting speech-language therapy emerged. Ovenden and Mumby's work illustrates
the humility required by speech-language pathologists when learning within a different
culture and becoming culturally sensitive to the religious and spiritual needs of
the persons they serve.
Within the Western medical model and relevant to some cultures, several possibilities
for collaborating with spiritual healthcare providers as part of an interdisciplinary
team could include gathering information about one's spiritual or religious beliefs
at the beginning of the rehabilitative process (as suggested by MacKenzie & Mumby,
2022) along with the speech-language pathologist to involve supported communication
techniques, as well as involvement in the collaborative goal-setting process. Spiritual
healthcare providers may possess aphasia awareness and are familiar with the term
aphasia, but lack formal training regarding how to facilitate conversation with a
person who has aphasia (Mumby 2023; Laures-Gore et al., 2021). Formal training of
supported communication techniques by the speech-language pathologist is an important
ingredient in aphasia recovery and should mirror instruction given to other members
of the person with aphasia's community (e.g., family, friends, and employer). Additionally,
when culturally appropriate, providing formal training to a spiritual healthcare provider
can ensure they maintain realistic recovery expectations for people with aphasia (Sailus,
2015). Ultimately, spiritual healthcare providers are key players in the rehabilitation
team who may need formal training to effectively interact with people who have aphasia.
These suggestions are provided with the recognition that spiritual health providers
take many forms within different cultures and in some instances, the speech-language
pathologist must follow the lead of the spiritual health provider.
Information Gathering
As noted by Brandenburg et al. (2015), gathering information of religion and spirituality
as part of life participation in persons with aphasia rarely occurs. Previous literature
in the area of religion and spirituality in persons with aphasia reveals that different
techniques have been utilized while gathering information about a person with aphasia's
religious or spiritual beliefs and practices. Interviews, script samples, and questionnaires
are examples of information gathering about religion and spirituality that could be
utilized across different cultures. Mumby and Roddam (2021) described a feasibility
study using the WELLHEAD toolkit (a resource for promoting spiritual health; Mumby
& Grace, 2019) and the Spiritual Health and Life Orientation Measure (SHALOM; Fisher,
2010) in addressing the religious and spiritual needs of persons with aphasia (sampling
from the United Kingdom). They described SHALOM as a 20-item rating scale using two
parameters of spiritual ideals and lived experience. Both the WELLHEAD toolkit and
SHALOM were found to be acceptable to persons with aphasia with communication supports
which makes this a promising resource for clinicians and other spiritual healthcare
professionals working with persons with aphasia. Additionally, Laures-Gore et al.
(2018) modified a truncated version of the Trait Sources of Spirituality Scale (Westbrook et al., 2018). Their modification of this scale included a large bold
font and reading the questions aloud with the participant who was previously identified
as having a mild aphasia and living in the southeastern United States. A mixed methods
approach using both qualitative (interviews, story-telling with supported conversation
techniques) and quantitative (aphasia friendly questionnaires) may be beneficial in
gathering religious and spirituality information from persons with aphasia in some
cultures. The studies described here sample participants from the United Kingdom and
the United States. Generalizing findings to other cultures should be considered with
caution. The speech-language pathologist should follow the cultural traditions of
the person with aphasia to most respectfully gather insights into one's religious
and spiritual beliefs if the person with aphasia indicates a desire to share this
information.
Clinical Recommendations
Inclusion of the intersection between the religiosity and spirituality of a person
with aphasia can be placed within the clinical framework of the LPAA model, A-FROM,
and as a coping strategy within a framework for stress and aphasia. Religious and
spiritual beliefs and practices may play an important role in clinical care. Clinical
recommendations include:
-
Asking about religious and spiritual beliefs when designing life participation goals
and when understanding ways of coping utilized by the person with aphasia.
-
Changing perspectives of speech-language pathologists to improve their comfort in
including religious beliefs and practices in the clinical care of a person with aphasia.
-
Including person-centered goals designed by the person with aphasia that may include
religious and spiritual practices and beliefs.
-
Facilitating connection to religious or spiritual communities through communication
support for individuals who develop a new spiritual or religious perspective through
the experience of stroke and aphasia rehabilitation.
-
Including spiritual health service providers in the clinical care of a person with
aphasia if the person with aphasia indicates that is wanted.
Future Directions
The future for growth in the intersection between one's religious and spiritual practices
and beliefs and aphasia rehabilitation is quite promising and multifaceted. Future
areas of research that would improve understanding of the constructs of religiosity
and spirituality include the following:
-
Developing more methods of information gathering of religiosity and spirituality that
are clinically accessible and aphasia friendly.
-
Exploring the potential role of religiosity and spirituality on aphasia recovery across
multiple cultures.
-
Designing longitudinal studies that follow persons with aphasia throughout their recovery
process to determine whether there are fluctuations in beliefs during different recovery
stages and the impact of potential fluctuations on recovery.
Each of these future directions has the potential to improve the rehabilitative process
of persons with aphasia and should continue to be explored within the context of interventions,
educating speech-language pathologists, and through different research methods. There
is sizable room for knowledge growth within this facet of aphasia rehabilitation.
The opportunities for better understanding and incorporating religious and spiritual
beliefs into aphasia rehabilitation are many.
Conclusion
In a pluralistic world characterized by cultural diversity and numerous religions
each with unique histories, doctrine, and practices, it is vital that professionals
involved in the clinical care of persons with aphasia consider an individual's religious
and spiritual belief systems in order to deliver culturally sensitive rehabilitative
services. Religiosity and spirituality are complex with nuanced concepts whose effects
vary from person to person. Future research is needed to better understand the intersection
of religious and spiritual beliefs within aphasia rehabilitation across cultures.
The intersection of religious and spiritual beliefs and practices with aphasia research
and clinical care is crucial in advancing the physical health, mental health, and
language recovery of persons with aphasia.
