The spread of HIV/AIDS continues to be a major problem for publichealth around the world. People living with HIV/AIDS (PLWHA)steadily climbed from 35.6 to 36.9 million between 2015 and 2017,with 940,000 people dying from HIV/AIDS during the aforementionedperiod.1 Similarly, the number of PLWHA in Thailand increased from445,000 to 450,000 with approximately 15,000 people dying from HIV/AIDS during the abovementioned period.2 Due to the increasing numbersof people receiving antiretroviral therapy (ART), HIV-related deaths havedropped by 38%,1 and AIDS has changed into a chronic disease drawingnew challenges for health care providers.3
PLWHA are faced with stressful life events related to the illnessincluding physical health problems resulting from declining immune status,psychological distress related to stress, anxiety and depression, socialisolation due to social stigma, fear and uncertainty about death, loss ofself-control, self-blame, internalized conflict, and hopelessness.3-9 Theaforementioned problems might lead PLWHA to become spirituallydistressed and commit suicide.4,6,9 Spirituality is a broad concept consistingof several key features and it is the source of human beings that can helppeople to accept themselves and their illness, find meaning and purpose inlife, create inner strength, maintain hope, improve the sense of selftrancendence,create relationships and connect with other people as well asa higher power, divine or God.3,8,9-11 Moreover, spirituality can play a vitalrole in supporting PLWHA. According to the studies of Ironson et al (2006),12Ironson et al (2016),13 and Black and Slavice (2016)14 it was found thatspirituality/religiousness significantly correlated with better CD4 cell countand controlling of viral load. Consequently, spirituality has a significanteffect on controlling disease symptoms and slowing the progression ofdisease,5,15 while ensuring life-satisfaction, quality of life, well-being,5,16 andlong-term survival.13
According to the literature review, limited research studies have beenconducted in Thailand about the role of spirituality among PLWHA. Mostresearch studies were quantitative research studies and focused on the level of spiritual well-being and factors predicting spiritualwell-being among PLWHA, while only three qualitative studieswere found to address spiritual well-being. The first studyexamined spiritual healing in Buddhists with HIV.18 The secondstudy highlighted the good spirit of people living with HIV /AIDS, and the last study explored spirituality and spiritualneeds based on asymptomatic HIV experiences.18 Theparticipants aged in these researches ranged from 26 to 58 years. The focus was on Thai Buddhism without studyinghomosexual groups and none of the studies directly addressedspiritual roles among PLWHA.Qualitative meta-synthesis from systematic literaturereviews can provide in-depth understanding about the roles ofspirituality based on the viewpoints and experiences of PLWHA. The findings from this study can be applied to createappropriate spiritual care and spiritual need interventions forPLWHA. Moreover, it may increase the effectiveness ofantiretroviral therapy in order to encourage life quality, longevityand spiritual well-being.
Meta-ethnography synthesis was applied in the presentstudy, utilizing seven steps of Noblit and Hare in this metaethnography review.19-24
1. Getting Started: Determine the research question: In thisstep, researchers can find the question from qualitativestudies. In this review, the question was: How do the rolesof spirituality affect people living with HIV/AIDS?
2. Determining What Information Is Important andRelevant to This Study. In this meta-ethnography, theresearchers selected the articles that studied people livingwith HIV/AIDS and emphasized the roles of spirituality.Moreover, owing to the restriction of meta-ethnography,this cannot be generalized to other fields.
2.1Searching Strategy: A systematic review for examiningand unifying literature was utilized. CINAHL,PubMed, Science Direct, Clinical key, Willey LibraryOnline, Thai LIS and Thai Jo databases were searchedfor articles published from 2000-2018 with thekeywords “spirituality”, “HIV/AIDS” and “spiritualroles”. The screening of titles and abstracts was aimedat finding articles meeting the following inclusioncriteria: 1) Qualitative researches studying the roles ofspirituality among PLWHA; 2) Full-text articles only; 3) Primary sources; and 4) literature reviews.
2.2 Quality Appraisal: The articles that did not showqualitative data were excluded. Figure 1 shows theeligibility of assessment of all articles used in thisreview by using consolidated criteria in reportingqualitative research (COREQ).25
The initial search yielded 142 articles that wereincluded in this review. The abstracts of the studies were readand screened to exclude non-matching content. Thus, 129articles were excluded from this study (81 articles did notfocus on spirituality, 14 articles were quantitative studies, 3articles were mix-method studies, 2 articles were literaturereviews, 1 article was a duplicate, 15 articles were not studyingPLWHA, 11 articles were review articles, models of care andacademic articles, 1 article was not published in English, and1 article was out-of-date). Next, the researchers read everyfull-text paper selected to identify thirteen studies andexcluded two studies (one study was a mix-method study; onestudy did not involve the roles of spirituality). In the last step,eleven articles involved 310 PHLWA (Figure 1). Data weregathered from interviews, focus groups and observation ofparticipants (from qualitative approach, phenomenologicalstudy, and grounded study) conducted in the USA, Cameroon,Brazil, Belgium, Canada, and Thailand. (Table 1)
Figure 1: Search strategy to identify publications included in the review.
Table 1: Selecting articles that were relevant
3. Reading the Studies: Three crucial processes wereconducted in this phase including:
4. Identifying Associations among the Studies: Therelationships among the different studies were considered.The researchers examined the different papers for commonand recurring concepts. Subtheme and theme wereestablished in this step.21 Tables were used to show theoverall concept of study that was normal for metaethnographyreview. In the present study, the researchersextracted the results of the selected eleven studies, thenidentified and coded the concept of spiritual roles amongPLWHA, listing in terms of initial code with definitionsand frequencies in the dataset, then grouped and analyzedthe same meanings of spiritual roles of PLWHA in thethemes in order to determine how the studies were related(see Table 2).
Table 2: Summary theme, sub-theme and coding from the data
5. Interpreting and Comparing the Studies. In this phase,the researchers interpreted the concepts and correlationsin one study for comparison with the concepts andcorrelations in other studies. Fundamentally, there are threeways for comparing the concept with other conceptsincluding: 1) Reciprocal interpretations; 2) Controversyinterpretation; and 3) Line of argument presentation.
6. Synthesizing Interpretations: This phase is aimed atcreating a new whole of the parts.22 Figure 2 shows theResultsParticipants perceived the benefits from spiritualityincluding enhancing peace and happiness, cultivating innerstrength, illness understanding and self-acceptance,self-healthcare, developing a sense of compassion, findingpurposes of life, maintaining hope, creating relationship anda sense of connection. Some participants reported the negativeof spirituality, which was an internalized conflict.1. Positive roles of spirituality 1.1 Enhancing Peace and Happiness: Religiouspractices and spiritual beliefs helped patients to enhance theirpeace and happiness. Participants indicated a feeling ofcomfort, relaxation, peacefulness and happiness.synthesis of this review towards the roles of spirituality ofPLWHA.
7. Expressing the Synthesis: This synthesis shows theinformation about the roles of spirituality from theperspective of PLWHA. Researchers or healthcare providerscan use the information to create the intervention forenhancing spiritual well-being among PLWHA.
Figure 2: Synthesis of translation: The roles of spirituality of people living with HIV/AIDS
Participants perceived the benefits from spiritualityincluding enhancing peace and happiness, cultivating innerstrength, illness understanding and self-acceptance,self-healthcare, developing a sense of compassion, findingpurposes of life, maintaining hope, creating relationship anda sense of connection. Some participants reported the negativeof spirituality, which was an internalized conflict.
1. Positive roles of spirituality
1.1 Enhancing Peace and Happiness: Religiouspractices and spiritual beliefs helped patients to enhance theirpeace and happiness. Participants indicated a feeling ofcomfort, relaxation, peacefulness and happiness.
'I listen to a lot of church music that comes on TV or onthe radio. A lot of gospel. My mother, when she was alive,would always put that on every day. And it gives me comfort.I usually hum along with the songs. I like to hear the music,and it is very relaxing and gives me a peaceful feeling. So, ithas made me feel a lot better, just something to lift my day abit.’8
1.2 Cultivating Inner Strength: The participantsperceived the benefits of spirituality in the form of cultivatinginner strength, including self-control, self-empowerment,self-consciousness and relieving the fear of death.
“I wouldn’t be able to do this today, without, spirituality,without a relationship with my heavenly father, because I’mdaily renewed, I’m daily cleansed, I’m daily strengthened.”29
‘…consciousness reminds us to be careful… before doingsomething we should think first to protect mistake’27
1.3 Illness Understanding and Self-acceptance:Participants perceived that spirituality helped them to redefinethe meaning of illness, understand and accept illness, reduceself-blame, increase self-acceptance, and self-esteem.
‘Yeah, in the beginning when I was first diagnosed andeverything, I was angry at myself. I felt like, this was happeningbecause I let it happen and I was getting like I couldn’t standmyself for it. But it took a lot of time, and through thespiritual part of my life I’ve gotten to be understanding that Ihave to forgive myself and I have to forgive him [man thatinfected her] and God forgives both of us.’8
‘After living with this disease and facing the dying experience,I understood that being born, getting old, being sick and dyingis a normal cycle of human beings and natural experiences.In the past, I hardly thought about dying. But now I could seethe reality of life. Nothing is permanent. We should learn tolet go, then we can obtain inner peace.’9
1.4 Improve Self-health Care: The participantsperceived that spirituality led them to accept the illness andpromote healthy lifestyles
.‘…We just only take ART on time every day, do regularexercise, eat healthy food and the most important thing ishaving a clam mind. We have to face HIV with a brave smile... I think, sometimes, having HIV is good because it motivateme to take more care of myself.’11
1.5 Developing a Sense of Compassion: Participantsperceived that spirituality led them to create a sense ofcompassion including feeling sympathy, empathy andresponsibility to others.
‘I use condoms. I bring them with me all the time. When Igo out with friends I bring the condoms. If I am not ready todisclose my HIV status, I don’t have a girlfriend or I don’t havesexual intercourse.’1
1.6 Finding Meaning of Life: Participants perceivedthat spirituality helped them to find the meaning of life.
‘Probably more affirmed than anything. I feel more that Ihave a purpose and I’m going to fulfill it before I pass away.And that’s the only reason I’m alive is that I have somethingto do. I may not know what it is, it may not be something thathas big proportions. It may be just something like talking toyou. But I think there’s something I have to do before I passaway. There must be a reason.’8
‘…I have my future plan. I set a goal that I have to have abetter life than I have right now. All I need is to have a betterlife in every aspect.’11
1.7 Maintaining Hope: Participants perceived thatspirituality encouraged them to maintain hope, make choicesand enjoy their second chances.
‘To me it’s just like I get a second chance. Grace, to me,means I get another chance! …and I thank Him (God), forgiving me another chance.’29
‘I know that the scientists are searching for the drugs tocure HIV. So, I have to take care of myself well and I have tosurvive until that time comes.’11
1.8 Creating Relationships and a Sense of Connection:Participants perceived that spirituality created interpersonalrelationships, feelings of support and a sense of belonging aswell as a sense of connection with a higher power, divine orGod.
‘When I think of spirituality—I think of my spirit, I think ofGod and I think about what I believe in-my belief in God. Tome spirituality is the ability to step out of yourself and justbecome one with God.’29‘…I have survived because of them. My parents, mybrother, my sister, my wife and my children are very valuableto me. They have given me constant support. I feel happy whenI am with them and my inner strength increases each day’.10
2. Negative Roles of Spirituality
Some of the participants, including both gay andheterosexual men and women, described a negative feelingfrom spirituality in the form of internalized conflict, includingthe feeling of guilt, condemned, and going to hell.
‘I feel guilty continuing to do what I do. ... I just cannotbear it any longer. ... Why can’t I just stop this evil? I do nothave enough will. How can I hear God’s message for that longand still do what I am doing? There might be something wrongwith me!’7
According to the findings, spirituality is expressedthrough religious practice and faith in a higher power, divininityor God. In the Western context, PLWHA indicated that theillness had drawn them to use religious and spiritual practicesmore than in the past. Most of the participants described thatthe sources of spiritual support resulted from believing inGod.3,7-8,26,28-31 On the other hand, PLWHA in Thailandindicated that the source of spirituality came from religiouspractice, family support and adherence to the Lord Buddha’steachings.9-11,27 The above factors provided the PLWHA withthe power to manage stressful life events and illness. Theparticipants described the positive roles of spirituality in life.
Enhancing Peace and Happiness: Religious practiceand spiritual beliefs helped the participants to enhance peaceand happiness. In the Western context, the dynamic existence,evolutionary relationship with God or a universal spirit isessential to creating theories of faith and spirituality.26O’Brien32 explained that spirituality is the core of humanbeings. Thus, spirituality can help chronic illness patients copewith stressful life events and illness, which is a crucial factorthat affects spiritual well-being. There was a significantpositive relationship between spirituality and psychologicalchange (e.g. depressive, mood states, mastery and selfesteem).33 In Thailand, Buddhist teachings play a crucial rolein supporting participants comprehend and reconcile thatnothing is permanent. According to Buddhist doctrine, the FourNoble Truths are as follows: 1) Characteristics of suffering(Dukkha), 2) The origin of suffering (Samudaya), 3) Suffering’s cessation (Nirodha), and 4) The fact or process of ending ofsuffering (Maka) called the Noble Eightfold Path. The abovefactors are important for Thais and Buddhist PLWHA toenhance peace and harmony of life.9
Cultivating Inner Strength: The participants perceivedthe benefits of spirituality in terms of cultivating inner strength.Thus, the participants expressed strength by using religiousand spiritual coping to provide a feeling of inner strength,self-control, empowerment, a will to survive or have a secondchance, relief from fear of death and self-consciousness.Mostof PLWHA believed everything was provided by God whoalways supported and helped people through every momentof life.3,8,29,30 Furthermore, the participants believed Godprovided the heaven for the afterlife. Hence, PLWHA wereable to face death and die bravely without fear of death.8However, Thai people perceive that there is nothing permanentand they live life with satisfaction, which is important in reachingpeace and harmony in life.9 The above factors can cultivateinner strength for PLWHA who are Buddhists.9-11
Illness Understanding and Self-acceptance: Theparticipants perceived that a higher power or God had a purposeto inflicting this illness on them. He aimed at teaching theparticipants, changing lifestyles, creating relationships andforming connections.8-9,11,27,29,31 Spiritual roles helped theparticipants reduce self-blame, forgive self and others, andcreate self-esteem.27 Being diagnosed with HIV triggered thepatients to participate in spiritual reflections in an attempt tofind meaning in life and might have brought the participantscloser to God, increase church attendance or enhance spirituality.30The above factors were able to adjust the perspectives of PLWHA into positive views leading to understanding of theillness, acceptance of illness and self. In Buddhism, theparticipants believed that ‘Nothing is permanent’ (LordBuddha’s teaching), which helped the participants accept theillness and life because this concept taught PLWHA understandingabout the disease and acceptance of trust of life.9 Thus, the participants were able to manage with life-struggleand illness with peace and harmony.9 Moreover, when PLWHAaccepted both illness and self, they were able to improveself-esteem and well-being similar to other people.9-11
Improve Self-health Care: The participants perceivedthat spirituality improved self-health care because spiritualityassisted them to find the meaning of illness, understanding theillness, and accepting their illness.8,11,31 It encouraged them tofocus on healthy lifestyles in order to increase longevity bytaking medication, performing regular exercise, eating healthyfoods, getting plenty of rest, sleeping well and preventinghealth risks.9 Ironson et al.,12 and Dalmida et al.,29 found thatthe spiritual well-being of PLWHA was correlated withmedication adherence (antiretroviral therapy), increased CD4helper T-cell counts, decreased HIV viral load, controlledsymptoms of the disease and decelerated disease progression.Moreover, spiritual well-being predicted longevity for morethan 17 years after diagnosis with HIV.
Developing a Sense of Compassion: In the presentstudy, spirituality developed a sense of compassion forPLWHA. The participants believed that God wanted them tohelp others and respond to the needs of others. The participantsavoided risky sexual behaviors to reduce stigmatization byusing a condom every time during sexual intercourse, ortubal ligation in order to prevent spreading HIV to children.11 Moreover, the participants practiced self-care in order to reducethe feeling of being a family burden, increased their capacityto support families and sought to prevent family members fromfeeling sad when they passed away.11,28 The abovementionedfactors are beneficial not only for PLWHA, but also for societyas a whole to reduce stigmatization and prevent HIV transmission.
Finding Meaning in Life: The participants explainedthat spirituality helped them to find the meaning of life becauseHIV/AIDS accerelated them to recognize that their lifespanwould be shortened and they tried to find what was theirpurpose in life for the rest of their life. Having a meaning inlife supported them to set a goal and drive them to achievetheir goal with fostering hope for a better life in the future.8,11For example, living with longevity to work, helping others orlooking after their family. Thus, they understood why theywere still alive and what they had yet to do for their future life.Fisher J34 indicated that finding a purpose in life is animportant domain of spiritual well-being. Carolyn et al.,35found that finding meaning in life was related to perceivedcontrol, optimism and psychological well-being.
Maintaining Hope: The participants explained thatspirituality helped to maintain hope, to make choices or takesecond chances for the future because they had to confrontphysical problems, psychological distress and living with anincurable disease.29 PLWHA put more focus on holding to thepurpose God had in mind for them in expanding their livesrather than on being able to articulate a special purpose.29 Basedon the perceptions of PLWHA, God always provides a secondchance for life and a heaven in the afterlife when PLWHA passaway. Consequently, the participants maintained life with hopeand some believed a cure for HIV would be provided by newdrugs in the future.11 Highfield&Carson36 Fisher34 indicatedthat hope is a crucial domain of spiritual well-being.
Creating Relationships and a Sense of Connection:The participants perceived that spirituality createdinterpersonal relationships, feelings of support, and a sense ofbelonging in addition to a sense of having a relationship witha higher power or God. The participants perceived that goodfriendships came from church attendance and created a senseof belonging. Moreover, the aforementioned activities createda sense of connection with a higher power or God. Thus, theparticipants were empowered in coping with a difficultsituation, stressful life events and a life-threateningdisease.8,28,29 Thai people perceive the source of spiritualsupport to be family, which helped them to maintain hope andinner power for dealing with illness and stressful life events.11Carson,37 Hungelmann et al.,38 and Fisher34 indicated that relationships with self, others, environment, a higher power,divine or God were key sources of spiritual support.
Negative Roles of Spirituality: Some of the participantsincluding both gay and heterosexual men and womendescribed a negative feeling from spirituality in the form ofinternalized conflict3,7,8,26,27 which was expressed byinappropriate sexual behavior. PLWHA perceived that theywere sinners that influenced church attendance and hadnegative effects on the spiritual dimension.3 This issue isimportant for health care providers in providing appropriatespiritual care for this group with the aim of reducing internalconflict and spiritual distress.
The qualitative meta-synthesis study about the roles ofspirituality among the PLWHA participants in the studyprovided a unique insight into PLWHA perceptions. The studyproposed to synthesize and explore the spiritual roles thataffected PLWHA. The following eight main themes in positiveroles of spirituality of PLWHA emerged from the studies:
However, there wasa negative role of spirituality for PLWHA, namely, internalizedconflict. Evidence from this study provides in-depthunderstanding for healthcare providers to create spiritual carefor PLWHA.
There were some limitations to this study. We only focusedon full-text qualitative studies that were published inseven databases; CINAHL, PubMed, Science Direct, ClinicalKey, Wiley Library Online, Thai LIS and Thai Jo, during 2000-2018. Therefore, some studies were not included in thisstudy. However, further research should include studies frommore databases in order to obtain a deeper insight and moredata relevant to the study.