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MOxineAiiegbola'MN,Abstract Chronic illness presents challenges and opportunities to the person affected.Personswithchronicillnesshave identified spirituality as aresourcethat promotes quality of life. Few authors andresearchershaveconsideredspirituality asa factor in quality of life. This paper presentstheoreticalandresearch tools to support the inclusion of spirituality ana quality of lifeassessments as inseparable,essential elements in thecareofpersonswith chronic illness. The philosophical underpinnings of nursingare caring and holism. ecauseof these underpinnings, nursing is well positioned to implement spiri-tualinterventions inpractice,propel the development oftheory,andbuitda body ofevidenceto promotequality of life for persons with chronicillnesses.Key words spirituality, quality of life, FAC T-Sp, F ACT-G, chronic, holistic health

Spirituality and Quality of Life in Chronic Illness

he focus of healthcare has shifted from acute, infectiousdiseases to chronic states (Lorig & Holman, 2 0 0 3 ; Lorig,1 9 9 3 ; Schlenk et al. , 19 98). Cnro nicity is an irreversiblestate of disease for which there is no cure (Connelly, 1987 ). Th eprudent individual with chronic disease must employ strategies toreduce the impact of the illness. By reducing the impact of theillness and enhancing health, the individual strives for balancedbio-psycho-social-spiritual health and well-being.The individual's subjective psychological outlook in thepresence or absence of physiological and functional burde ndetermines the individual's perceived quality of life (Burckhart &Anderson, 2 0 0 3 ; Murdaugh, 1997) . Quali ty of l i fe (QOL) thenin the context of chronicity is a mu ltidim ensio nal, multifaceted,dyna mic , subjective view of varying degrees of health-relatedsatisfaction. This health-related satisfaction is connec ted tospiritual well being. Spirituality is an important parr of wellnessand indispensable in holistic, multidisciplinary care (Young &Koopsen, 2005; Hil l & Pargament, 2 0 0 3 ; O 'C o n n e l l &Skevington , 2005) .Some have confusingly represented spirituality as religiosity,but the two, although contiguous, are not synonymous. Spiritual-ity is a broader, overarching d om ain that may includ e religiosity,

but religiosity is not a necessary element of spirituality (Coop er-Effa, Blount, Kaslow, Rothenberg, & Eckman, 2001; Estanek,2006). Spirituality is best described by the apt quote that isattribu ted to Pierre Teilhard de Char din, W e are not human beings having a spiritualjourney, but spiritual beings having a humanexperience -(Teilhard de Chardin, n.d.).

In recent years, numerous documents and research articleshave been published on religiosity and health, but few havefocused on spirituality and health (Peterman, Fitchett, Brady,Hernandez, & Cella, 2002). Even fewer have considered spirittial-ity as a factor in ma intain ing quality of life. Th e p urpose of thispaper is to provide theoretical and research tools to support theinclusion of spirituality and quality of life assessments as insepa-rable, essential elemen ts in the care of persons with chronic

illness. Care that prevents the broken spirit and enhances spirituabalance has the potential for improving QOL. The implicationsof the constructs for practice, theory development, and researchwill be described.Quality of LifeWith todays healthcare delivery system and impact ofmanaged care, it becomes imperative to justify interventions thatpromote quality of life , show cost effectiveness of treatmentoptions (Thomas, 2000), and can holistically include spiritualneeds (Krupski , 2006 ) . Th e subjectivi ty and mult id imensionali tyof individual's spiritual needs result in a phenomenon that is notclearly understood by others, as the individual adapts to diseaseand illness burden. The adaptation of the individual to a gapexisting between expected and actual functional states may havehealth policy implications. Individuals with chronic illness, whounexpectedly tolerate more aggressive therapy, and demonstrateresilience, perplex healthcare providers, stakeholde rs, and expertplanners (Bonomi, 1996; Cella et al. , 1992). In chronic andpalliative care Q O L reports serve as a predictor providingprognostic input regarding survival and well-being (Dharma-Warden, Au, Hanson, Dupere, Hewitt , Feeny, 2004) .Definition of QOLQu alit y of life is the feeling of overall life satisfaction, asdetermined by the mentally alert individual whose life is beingevaluated (Meeberg, 1 993 , p. 37). Th is appraisal is subjective,and encompasses all domains of life, incltiding elements of biopsychosocialspiritual m odel (Hia tt, 19 86). As individualscontend with chronic illnesses, their valuation of life will be baseon the coalescing of ll domains. Health related quality of life (HRQ OL ) m ust include and acknowledge health , il lness, and Q O Las part of the individual's experience.Theoretical approaches to QOLIn chronic illness self-care management has been used as thetheoretical underpinning for improved QOL. Health status alsohas been posited as a direct influence on Q O L (Jenerette ,2004 ).Th ere is also the concept of response shift that explains the

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individual's vacillation and recalibration to adjust to illness-wellness shift and maintain QOL. With all the theoreticalexplanations that exist, the most fundamental is that oftheindividual's subjective, personal valuation.The researchers who developed the Fun ctional Assessment ofChronic Illness Therapy (FACIT) measurement system definedquality of life theoretically as the fundamental subjective appraisaland value system ofthe individual that is multidimensional andincludes physical, functional, emotional, and social well-being(Cella, 1992), All ofth e multi-dimensions are intricately neededto maintain balance and determine quality of life.Measurem ent of Quality ofLifeThe Functional Assessment of Cancer Therapy Ceneral(FACT-C) was developed by Cella, Tulsky, Cray, Sarafian, Linn,Bonomi et al. (1 993). The FACT-C was revised as it unde rwentmultilingual and multicultural testing (Bonomi et al., 1996). Themost c urrent version, FA CT-C, version 4, is a subjective,self-assessment, 27 item core measurement o fthe Functional Assess-ment of Chronic Illness Therapy ( FACIT) measurement system.Th e FACT-C measures four areas of QO L: physical well-being,social/family well-being, emotional well-being and functionalwell-being. This self-assessment questionnaire although originallydeveloped for individuals with cancer, can be used for any chronicillness, such as renal disease, fibromyalgia, AIDS, arthritis, andheart disease (Cella et al,, 1993),In terms of multidimensionality of QOL, four distinct, butcorrelated, areas are measured by the FACT-C: physical, func-tional, em otional, and social well-being.Physical well-beingrefers to perceived and actual body function or disturbances, suchas pain or fatigue.Functional well-being different from physicalwell-being, includes the individual's ability to perform activitiespertaining to social role, personal needs, ambitions, activities ofdaily living, executing responsibilities inside and outside the h ome(Cella et at., 19 93; p. 188). The physical and functional dim en-sions are related b ut can occur independently, as seen when anindividual is able to continue working effectively despite pain.The physical and functional domains are separate but impinge onemotional ^veil-being that is reflective ofaposition on acontin uum , between positive well-being, and negative distress.Comp rehensive evaluation will help to d etermine one's fulcrumpoint on this bipolar dimension. Thesocial well-being includes maintenance of gratifying relationships with friends, acq uaintan-ces and intimate relationships with family members and signifi-cant others (Cella et al,; p, 188-189),

Th e FACT-C was validated in phases on a sample of 545patients and has sound psychometric properties, includingconcurrent and construct validity, an internal consistency estimateof 0,89; and test-retest reliability coefficients ranging from 0,82 to0,93,The FAC T can be used with individuals with cancer andother ch ronic illness such as renal failure, H IV/A IDS, multiplesclerosis, and rheumatoid arthritis (Bonom i, 1996; Cella et al.1993),The developers of the FACIT recognized the importance ofspirituality in chronic illness and assessed spirituality on a separatesubscale, the FACIT-Sp. Brady et al, (1999) found that spiritualwell-being predicted QOL by decreasing the impact of symptomload on well-being. Cotton, Levine, Fitzpatrick, Dold, and Targ(1999) co nducted a study with individuals living with cancer,using the FACIT-Sp and FACIT-C, and found that the more'spiritually w ell' the individual reported, the m ore likely theindividual to have higher Q OL and b etter psychological adjust-ment (p,43). The fmdings indicate the importance of spiritualityin the promotion of quality of life among persons with chronicillness.SpiritualityHealth is a process that Watson (1985) describes as involvingunity and harmony within the mind, body, and soul. Health isrelated to the degree of congruence that exists between a person's

sense of I and me . This congruence or lack thereofistheessence of being. This essence is subjective, personal, influencesevery aspect oflife,gives meaning, value, strength, empowerment,soul, and is called spirituality (Frey, D aaleman, & Peyton, 2005 ;Aldridge, 2005; Brady, Peterman, Fitchett, Mo, & Cella, 1999;Baker,2003;Young :Koopsen, 2005), Spirituality enables theindividual to rise above adversity, cope, and make sense ofthecurrent situ ation. Spirituality invigorates the unique psychosocialstrengths ofth e individual so that he or she can organize andvaltie life (Bartlett, Piedmont, Bilderback, Matsumoto, & Bathon,2003).Although spirituality has been regarded as an importantelement of life, there has been little emphasis on spirituality inmedical care, with providers at times avoiding religious issues,categorizing it as personal and attributin g little therap eutic value(Koenig & Larson, 1998; Koenig et al., 1988), Th us, spiritualityhas been considered elusive, non-scientific, soft, and personal.However, the positive impact (Cooper-Effa et al., 2001 ), andtherapeutic value of spirituality have been documented.In a landmark study Byrd (1988), concluded that interces-sory prayer offered by Christians outside of the hospital forpatients in a Coronary Care Unit (CCU) had beneficial therapeu-tic effect. Since the activity was unknown to the hospitalizedpatients, the outcome may not be related to religion, but rather tospirituality. The patients in the CCU were healed without theirknowledge ofthe intercessors laboring on their behalf for theirhealing. Even though some have been critical ofthe findings of 'the Byrd study, othe r researchers have also docu me nted therelationship between spirituality/religion and health (Koenig & Larson, 19 98). Since health studies have indicated th at spiritual-ity/religiosity are powerful factors influencing adaptation toillness, it then makes sense to desist from the semantic struggle,entertain more research in the spiritual domain, and applyexisting information to improve clinical practice (Weaver &Koenig, 2006). heoretical approaches to spiritualityTranspersonal caring, which was originally defined as hum an-to-hum an connectedness by Watson (1985 , 1996), is a specialtype of therapeutic relationship in which there is caring, con-scious connectedness between the nurse and the patient. Twopeople have come together in a conscious, caring, spiritualrelationship. Th e connection has a spiritual dimension that isinfluenced by the caring consciousness ofth e nurse (1996,Watson, p, 152), The nurse offers self in a therape utic relation-ship with the patient, helping the patient to move towardsphysiologic and spiritual health. This caring relationship is themaxim of the professional nurse.

Other conceptual frameworks have been suggested to explainthe importance of focusing on the spiritual dimension, Hiatt(1986) posits a biopsychosocialspiritual paradigm, which is anamalgamation of spirituality to Engel's biopsychosocial model.The interlocking ofmind,body and spirit reflect the multidimen-sionality of individuals,Peterman et al. (2002) discuss the importance of examiningspirituality void of religiosity to capture the spiritual needs ofindividuals who m ay not express religious traditions or ideations,A theoretical approach to spirituality that is distinct from religionis especially needed due to the rapid global, demographic shiftthat has resulted in individuals ofdiversespiritual b ackgroundsresiding together in communities. Hence, spirituality is not ahomogenous practice, but reflects individual expressions of being,Harrison and colleagues (2005) in trying to explain thespiritual-health relationship refer to Ceorge's summ arization ofincreased social support, positive health practices, connectedness,and psychological en richme nt as explanatory factors of spiritual-ity. T hese factors serve to enhance the positive wellbeing oftheindividual, and propagate increased ability to overcome adverseevents (Harrison et al,, 2005).

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easureme nt of spirituality in hroni illnessSpirituality, as a core doma in, is not com monly measured inQOL chronic illness studies (O'Connell & Skevington, 2005),but spirituality serendipitously emerges when religion is assessedin studies as a side-bar issue, or an add on variable (Hill &Pargament, 2003). O'Connell & Skevington (2005) noted thatwhen authors acknowledge the importance of including measuresofsp irituality,personal beliefs and religion in their study design;these measures have mostly been included in disease specificmeasurem ent tools. Many of the disease specific tools are notapplicable for other population groups.Researchers in developing measures, must first define theconstructs of spirituality and religion, and then plan to includethese constructs in measurement development. Targeting spiritual-ity in measurement of QOL issues may help to preserve, orenhance well being even in the face of considerable symptom loador in the midst of other health decrements (Brady et al., 1999).There has been difficulty in demonstrating, through measure-me nt, the con struct of spirituality as personal and singular (SeeGray in this issue). Spirituality is difficult to measure because ofconfounding variables (Frey et al., 2005) and unclear definitions.Despite the challenge of isolating spirituality from other d omainsof QOL, researchers must consider the imperative to include thespiritual dom ain. This imperative exists because the spiritualdomain encompasses important and unique information withclinical implications and explanatory power (Brady et al., 1999).Without the inclusion ofthe spirituality domain in QOLmeasurement, the information on essence of'meaning to life' islost. One measurement ofsp irituality,not religiosity that needsfurther disctission is the Functional Assessment of Chronic IllnessTherapy Spiritual (FACIT-Sp). The FACIT-Sp is part ofthe largerFACIT measurement system of which FACT-G is the coreinstrum ent. FACIT-Sp is a 12 item spirituality version that canaccompany the FAClT-G scale that measures four areas of QOL,or can be administered as a single assessment.

The FACIT-Sp primarily focuses on existential aspect ofspirituality and faith, and assesses this on two subscales: meaning/peace and faith. The conceptual framework for the developmentof FACT-Sp is based on importance of sttidying relations betweenspirituality, interconnectedness of between mind, body and spirit,and the demographic change from organized worship and religionto a personal search for spiritual fulfillment (Peterman et al.,2002 ). Th e FACIT-Sp was designed to provide an inclusivemeasure of spirlttiality that could be employed in research withpeople with chronic and/o r life-threatening illnesses (p.50).Spirittiality must be examined as a concept, rather than religiosity.Examining religiosity alone would exclude many who do notsubscribe to denominational or specific religious beliefs yet havespiritual beliefs and practices (Peterman et al.).The FACIT-Sp was developed with the input of cancerpatients, psychotherapists and religious/spiritual experts who w ereasked to describe the aspects of spirituality and/o r faith thatcontributed to QOL. FACIT-Sp was validated in two phases withinterviews with over 200 patients, and interviews with severalhospital chaplains.There are 12 items to this scale, which takes one minute tocomp lete, when given as a single assessment. Th e statementspertaining to response to illness within the past 7 days are rankedhy responses that range from notatall alittlebit somewhat quitea bittoverymuch.The FACT-Sp has sound psychometricproperties, including concurrent and construct validity, andCornbach's alpha from 0.81 to 0.88. The FAClT-sp assesses therole of nonreligious spirituality in quality of life and other health-related research , and its use has been documented in two otherstudies (Peterman et al., 2002).mplic tionsSpirituality is intimately interlaced in healthcare issues and isfundamental to our hum an existence and survival (McSherry L

Draper, 1998). Spiritual care is a valid part of healthcare delivery,and all team members must provide spiritual care, with specialsituations referred to pastoral care or chaplains. The spiritualexperience invades all areas oflife.Issues of healthcare andspirituality have a comm on meeting place in the parlor ofsuffering; both offer deliverance and healing in varying degrees.Healthcare providers (HCP) should be concerned about theindividual's spirituality in the context of healthcare provision ,healthcare decision-making, reduction of suffering and enhanc e-ment of quality of life (Young & Koopsen, 2005 ). H ealthcareproviders (HCP) need to open the dialogue halls and practicearenas to invite in the individual's cohabiter, spirituality. Spirituality is the convergence ofissuesfrom the mind, body, and soulconnec tion. This convergence becomes a real, integral, holisticcomponent ofthe whole person. Nursing, because of itsphilo-sophically caring and holistic und erpinning s, is well positioned toimplement spiritual interventions in practice, propel the develop-ment oftheory,and build a body ofevidence to promote qualityof life for persons with chronic illnesses.Practice implicationsDespite many differing camps on the specific impact ofspirituality and religiosity and their combined inter-relatedness oseparate impact on health and well-being, there is a constantthread. The constant thread is that spirituality is important tohealth, and individual expression of quality of life. This constantespouses the im portance of spirituality and caring being the basisof nursing actions (W atson, 1 985; van Leeuwen & Cusveller,2004; McBrien, 2006; Kristeller, Zumbrun, :Schilling, 1999;Watson, 1988).Spirituality is reciprocal in tha t the nurse with an attitu de ofcaring , sensitivity, and competence, provides spiritual care toinclude the full illness trajectory (Bullard, 200 4; Dyson , Co bb, &Forman, 1997), thus increasing individuals' involvement in careand decision mak ing. Th e nurse em its spiritual transpersonalcaring (Watson, 1985; Watson, 2002; Watson, 1988; Young &Koopsen, 2005), and in a reciprocal nature receives spiritualfulfillment and increased spiritual value from caring for theindividual (van Leeuwen & Cusveller, 200 4). The reciprocitycontinues as the nurse grows, matures spiritually, and withincreasing ability and ease is able to identify components ofspirituality that can be further utilized in new situation s. Thisgrowth becomes obvious when the nurse is able to care spontane-ously for the spiritual dimension of patients, regardless of culturereligiosity, and tim e con straints at the bedside, or any othercharacteristic that could possibly induce b arriers. The n and onlythen is the transpersonal caring process fulfilledSpirittial care of patients is expected of nurses by the nursingcode ofethics (ICN (International Council of Nurses), 2000).External regulatory agencies such as the Joint C omm ission on thAccreditation of Healthcare Organizations mandate the inclusionof spiritual care in healthcare delivery. In keeping with profes-sional and mand ated requirements, spiritual care becomes a staplin healthcare delivery. Nurses must also encourage otherhealthcare team m embers to provide spiritual care. To providebest spiritual care, research activity and measurement must beongoing.In keeping with an integrated, holistic, bio-psycho-social-spirittial model, all patients should benefit from sensitive, non-imposing spiritual assessment, and incorporation ofsuch infor-mation into rendered care by clinicians. The role ofthe clinicianis to integrate spirituality, n ot to indoctrina te. Clinical practice,research and education are areas for inclusion of spiritual care(King, 2000; Golberg, 1998; Narayanasamy, 2006). Nursingcurricula should include spiritual assessment in all programs(Watson, 2002). Emphasis should be placed on the impact ofspiritual wellbeing on other aspects of life. Spirituality may act associal support, to buffer against stress and facilitate coping.Spirituality precipitates changes in individual's overall perspectiveof life and disease impact. Cooper-Effa et al (2001) offer concret

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suggestions for clinicians who care for individuals with chronicillness.It is imperative for clinicians to focus more on existentialwell-being rather than on religiosity. Spirituality is a broaderconcept, with possible inclusion of religiosity. The nutse mustattempt to care for the spiritual needs ofthe patient by develop-ing and u sing basic strategies such as listening, and being attentiveto cues and body language. However, when trie individual's needfor care is beyond the scope of nursing practice, it is appropriateto refer individuals for spiritual counseling.Kristler et al. (1999) noted that all members ofthe care teammust be involved in spiritual care, and consult with clergy orchaplains where appropriate. Caregivers should also advocate forprovision of infrastructure to support the reality of spiritual care.The results from Kristller et al. 's study suggest that time con-straints and role uncertainty were factors that attributed to under-addressed spiritual distress experienced by cancer pa tients.Healthcare administrators can play a pivotal role in makingresources and personnel available to address this paucity. Nursescan register their dissatisfaction with improper spiritual care andimpress upon administrators the necessity of making changes toaddress the neglect.

Theoretical implicationsEmerging models of spirituality must reflect the diversity ofpeople an d their spiritual needs, especially those persons wh o arechronically ill. Self care approaches to spirituality with in chron icillness would be helpful. More exploration of spiritual care forindividuals of many faiths and cultures in a diverse society is alsoneeded. Spirituality is evident in all facets of life, among allpeople, and needs explication beyond the usual ethnocentricperspective.Research implicationsNurses can clarify research designs and utilize measurementsthat capture spirituality, using tools that capture the concept in ageneric manner. Rigor has increased in looking at confoundingfactors influencing religion/spirituality and health related Q O Lamong individuals with cancer and life threatening illnesses.Stefanek, McDonald, and Hess (2005) claim the trend willcontinue with the inclusion of demographic, socio-economic,health status and psychological variables (p.459). I t is imperativeto include such variables because they may affect disease out-comes, psychological adjustment and quality of life determinants(Stefanek, McDonald , & Hess , 2005) .Conclus ionThe spiritual/religious link with health related issues andquality of life is known, but it remains unclear what exactly is thisrelationship. Further studies should help to elucidate the role ofspirituality for individuals with specific chronic states, anddem onstrat e relationships of spirituality to Q O L . Studies shouldbe longitudinal, and interventional. Spirituality research activitymust be increased and improved.The discipline of nursing should champion activities to fostercomprehensive inclusion of spiritual care. Nurses must infiuencepolicy makers and administrators to release funds for develop-ment of spirituality research centers, infrastructures and environ-mental conditions to support clinicians' inclusion of spiritualcare. Healthcare team members must incorporate spiritual care,and new findings into practice.

Since healthcare and specifically spiritual care promotedeliverance and restoration, spirituality assessment and subse-quent spiritual care offer deliverance, relief of suffering and mendthe broken spirit. Healthcare providers and clinicians can actuatechange by incorporating spirituality and Q O L assessments in caredelivery, and help individuals organize their lives and improvequality of life.

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Ma xine A'degbola, R N, MS N is-a PhB studentattiThf^Un'iver-'say of'Texa^tArlingtorT School ofNt4rsing;,{m da^National^ j ~ jristitiite forjMjimin^R esearch'Siuinm er'GeneticsJnstiiuie Scholar . 2Faculty,Jil Ggiffo Colkge^ur sirigProgfam , Dallas^TX..Sh

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