Spiritual Needs as Expressed by People Living with HIV: A Systematic Review

: It has been previously demonstrated that religiosity and spirituality can help support people living with HIV. Despite this, little work has been undertaken on this theme. Using the PRISMA methodology, we reviewed academic literature from 2008 to 2020 to summarize how people living with HIV deﬁne spiritual needs. We found ﬁfty-nine distinct types of approach that were related to this theme and were grouped into four main categories: religious needs, social needs, existential needs, and emotional needs. Religious needs were more frequently cited, including individual prayers, the ingestion of miraculous medicines, and so on. The study calls attention to the concept’s multidimensionality and the cultural differences in the included papers. It reveals the need of each culture to research, to ﬁnd an adequate meaning of spirituality, and to cater to the spiritual needs for people living with HIV as part of their healthcare, before setting health policies.


Introduction
The Acquired Immunodeficiency Syndrome (AIDS) diagnosis is marked by a set of feelings, attitudes, and practices that reveal the difficulty of assigning a new meaning to life and suffering (Espirito Santo et al. 2013). The scientific knowledge of this disease has increased the survival of people living with human immunodeficiency (PLWHIV), thus making this a chronic disease. Poorolajal et al. (2016) found that after highly active antiretroviral therapy, people could survive for more than ten years (HAART).
Religiosity/spirituality (R/S) may represent a kind of support to the exposed fragility of the disease (Ferreira et al. 2012), thus improving life quality (Da Cruz et al. 2017) for PLWHIV (Ferreira et al. 2012;Caixeta et al. 2012) according to the World Health Organization (WHO) proposition, which included this indicator in the WHOQOL-HIV (World Health Organization 2003). Despite this, individuals with AIDS may be affected by guilt, fear, anxiety, depression, and suicidal ideation, among other reactions that are associated with the disease's stigma (Chambers et al. 2015).
According to Koenig (2015), religion involves beliefs related to transcendental practices, generally through rules to guide one's conduct in the world, and teachings about life after death. Religion is often organized and practiced by a community, but it may exist outside an institution and be practiced individually. On the other hand, spirituality, according to Puchalski et al. (2014), is "the aspect of humanity that refers to the way by which individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and the significant or sacred".
Moreover, spirituality is related to personal dimensions, where the answers to fundamental questions concerning the meaning of life are sought out. It includes a set of practices, attitudes, values, and feelings which are born from the relationship that the individual has with themselves and with others, which then gives meaning to life and the individual's personal stories, which are influencing and being influenced by social, cultural, biological, psychological, and religious factors.
Spiritual needs are defined by Murray et al. (2004) as the "needs and expectations which humans have to find meaning, purpose, and value in their life, such needs can be specifically religious, but even people who have no religious faith or are not the members of an organized religion have belief systems that give their lives meaning and purpose".
In 2010 Büssing and Koenig, based on the literature review and the biopsychosocial spiritual approach (Sulmasy 2002) for chronic disease care, they highlighted the multidimensional character of spirituality, as well as identifying and distinguishing four interconnected dimensions of spiritual needs: 1.
Social needs are associated with people's connection with themselves or others (love, feeling of belonging, and communication with close people).

2.
Emotional needs are associated with the necessity of peace (interior peace, hope, equilibrium, ability to forgive, and fear of recurrence).

3.
Existential needs are associated with having a life meaning or objective (life meaning and being attributed a role in life).

4.
Religious needs are associated with transcendence (spiritual resources, relationship with God, sacred, and prayers).
Having these dimensions as a reference, they also proposed as an instrument to investigate spiritual needs-the Spiritual Needs Questionnaire (SpNQ), initially written in the German language by Büssing and Koenig (2010). This questionnaire avoids religious terminology and relies on the biopsychosocial-spiritual or "holistic" health perspective. Büssing et al. (2014) largely agreed with Puchalski's and Murray's definitions and considered it when he developed SpNQ, creating a less religious tool to measure spirituality. He included the secular and individualistic dimensions for a broader definition of "spirituality", plus the roles of well-being and quality of life in his concept. The SpNQ then allows measuring spiritual and existential psychosocial needs (Valente et al. 2018).
Since HIV/AIDS is a chronic disease, its healthcare should go beyond clinical complaints, and the need to amplify health professionals' knowledge to include R/S as a need to be delivered is clear (Da Cruz et al. 2017. However, according to Espirito Santo et al. 2013, the clinical-biomedical model still prevails in many hospitals where R/S is still not entirely incorporated into the practice, despite substantial academic production on the matter.) Assistance with the spiritual needs (SN) of PLWHIV can be a source of support and can help their resilience when facing physical and mental health threats (Da Cruz et al. 2017). Moreover, the relevance of this theme is still under scrutiny (Chambers et al. 2015;Doolittle et al. 2018), and little is known about how PLWHIV define and express these needs.
This study aims to conduct a systematic review to uncover the approaches used to address the spiritual needs of PLWHIV. We will verify if they fit the spiritual needs dimensions that were proposed by Koenig and Büssing, with the leading research question: are the Koenig and Büssing approaches and dimensions found in the SN expressed by PLWHIV?

Materials and Methods
To achieve the objective, we did a systematic review, using the PRISMA methodology (Moher et al. 2009) which is widely accepted for elaborating systematic reviews and metaanalysis.
We performed our search using Health Science Descriptors (DeCS) in Portuguese, Spanish, and English Languages using the following descriptors: "pessoas que vivem com aids e espiritualidade", "AIDS e espiritualidade", "AIDS e necessidades espirituais", "pessoas que vivem com AIDS e necessidades espirituais"; "people living with AIDS and spirituality, "aids and spirituality", "AIDS and spiritual needs", "people living with AIDS and spiritual needs"; "personas que viven con SIDA y espiritualidad", "SIDA y espiritualidad", "SIDA y necesidades espirituales", "personas que viven con SIDA y necesidades espirituales". Two independent researchers searched separately, with strict adherence to the inclusion criteria. Both discussed the discordances between them to find a standard view about it, and whether to include the study in the review.
The search occurred between August 2018 and March 2019, including studies published between 1 January 2008 and 31 December 2018. The choice of databases was based upon the availability of articles and their relevance. Four databases and a search mechanism were searched: PubMed, LILACS, Science Direct, Scopus, and Google Scholar. Google Scholar was included because the authors needed to amplify the search, and for the Portuguese Language, it is the one that provides the highest number of references.

Criteria for considering studies for this review:
In each search, the inclusion criteria were articles written in Portuguese, English, or Spanish, available free of charge on the Internet, due to the economic constraints in Brazil, which focused on the spiritual needs or spirituality of PLWHIV who were older than 18 years of age, and which satisfied all the above criteria simultaneously.
Exclusion criteria were defined as repeated articles, reviews, and articles that used spirituality/religiosity constructs as elements for a "quality of life" assessment. Quality of life was excluded because, in these studies, the focus was not on spiritual needs per se, but how, and to what extent, spirituality may positively or negatively affect quality of life. Spiritual needs were defined above, and the definition of quality of life, according to the WHO, is "an individual's perception of their position in life in the context of the culture and value systems in which they live and concerning their goals, expectations, standards, and concerns" (World Health Organization 1998).
Quantitative and qualitative studies were included.
The study was not registered in the PROSPERO database because it was considered to be a scoping review, not eligible for inclusion in this international database.

Risk of bias assessment:
As this study is aimed at subjective perceptions regarding the spiritual needs expressed by PLWHIV, the authors did not have concerns about bias assessment in the included studies.
The research established the following baseline information: 1. Journal, publication year, work title, and authors.

2.
Place where the study was conducted. 3.
The population that was included in each study.

4.
Objectives and study design.

5.
How spiritual needs were defined and expressed by the individuals included in the studies.

Results
The selection process is shown in Figure 1. The search in the bibliographic databases found 1594 studies, in which the titles were selected independently by two researchers, resulting in 455 articles. One hundred and eighty-three studies were excluded by duplication, with 272 abstracts that remained to be read. A new selection excluded 134 articles because they did not meet the inclusion criteria, with 138 articles remaining for complete reading, given that five were not available for free and 75 did not meet the inclusion criteria. After reading the studies, this review included 51 articles. They are listed in Table 1.
Since 2016, the interest in this topic has grown a lot, with 26 studies published since then (50%). It is interesting that from 2008 to 2012, research on the theme was present only in public health, medical, and psychology journals, and from 2012 onwards, nursing journals started leading publications on this topic.
Most of the included references came from Google Scholar, and the lowest number of included references came from PubMed. South America was the region with the most significant amount of published research concerning this theme (n = 20), followed by the USA (n = 12), and Africa (n = 10).
Most of the studies were done in community organizations, public institutions, and medical centers for PLWHIV treatment. Researchers in the health sciences area, especially nursing, were the most interested in the theme.
The qualitative approach was more frequent (31 studies = 60%), and the qualityquantitative was used less often (6 studies). Physical contact and a sense of family and place of belonging.

PLWHIV
To examine ways of confronting HIV/AIDS.

2009
Four major county hospitals, a university hospital, and community medical clinics in the Greater San Francisco Bay Area, USA (Pérez et al. 2009)

PLWHIV
To examine the effects of spiritual striving, social support, and acceptance coping when dealing with changes in depressive symptoms among adults living with HIV/AIDS.

Quantitative
Social support. Acceptance coping.

2009
Participants were paid volunteers; sample was recruited through physicians' offices, specialty clinics, service organizations, and hospitals in Miami, USA (Löckenhoff et al. 2009)

PLWHIV
To examine the association between five-factor personality domains and facets and spirituality/religiousness, as well as their joint association with mental health in a diverse sample of people living with HIV.   (Ridge et al. 2008) 44 PLWHIV "How are spirituality and religion woven into the stories of people living with HIV, and how do these storylines influence coping?" Qualitative Religion to help them cope.
One-to-one counselling. Collective prayer. Individual prayer. Networking with others for emotional and material support. Participation in meaningful and culturally relevant activities. Physical contact and a sense of family and place of belonging.
Appearing here as well, but less frequently, were practices such as the possession of devil spirits (Selman et al. 2013); spells and cures (Kwansa 2011); spiritual blessings and other spiritual practices (Ferreira et al. 2012); practices that lead to the return of power or of lost energy when ill (Rios et al. 2011); fortune-telling practices or clairvoyance; and the ingestion of miracle medicines (Ashforth 2011).

Discussion
The relationship between spirituality and health has hardly been studied over the last 30 years. Regarding PLWHIV, most of the papers have focused on the religious influence of clinical outcomes of disease, mental health, disease prevention, adhesion to treatment, etc., but spiritual needs, and their role for these people, have scarcely been studied.
It is worth remembering that "defining" spiritual needs is quite complex, because it involves several aspects, and their importance and meaning is attributed on an individual basis. There is no consensual definition of what it means. Murray's definition is too broad and may not address the specificity of each patients group. The results in Table 1 showed that the spiritual needs for PLWHIV have a multidimensional comprehension, with a list of diverse elements and practices, which included prayers, meditations, social support, fortune-telling, or clairvoyance. It is worth noting that this multifaceted interpretation may be associated with cultural differences, objectives, and institutional resources, and with the methodological diversity among the studies included in this review. Even so, the lack of a clear and updated definition is a limitation for the study of SN.
If we add together all PLWHIV who participated in the included studies, we have 3571 people expressing their spiritual needs in several ways and cultures. This indicates that, even with the inclusion of R/S among those elements that contribute to the quality of life in PLWHIV, according to a proposal by the WHO in 2003, we may consider the difficulties of defining SN, and the extent to which this topic can be broader and more subjective in terms of quality of life in research and healthcare.
This review showed that in 43 studies, SN were linked to religious needs, with existential and emotional needs appearing in second place, with five studies each. Third, came social needs. Although none of the included studies had used the SpNQ, these results corroborate the suitability of Koenig and Büssing's proposed approach to investigate spiritual needs for PLWHIV.
Even though HIV/AIDS is considered a chronic disease, previous studies of carriers of other chronic diseases showed different results when using Büssing and Koenig (2010) Spiritual Needs Questionnaire (SpNQ). In cancer patients in a secular society, this tool demonstrated that the need for donation and interior peace were stronger than religious needs (Büssing et al. 2013a). The same results are observed in fibromyalgia patients (Offenbaecher et al. 2013). In Chinese and Polish patients with chronic diseases, these exact needs were more frequent (Valente et al. 2013a(Valente et al. , 2013b(Valente et al. , 2015. In Brazilian PLWHIV, religious and existential matters play a significant role in spiritual needs, as Valente et al. (2018) demonstrated. These findings may indicate differences in SN between different groups of chronic illnesses, which are measured by the SpNQ.
It was demonstrated that the repercussions of AIDS and HIV infections are physical, psychological, social (Reychler et al. 2013), and spiritual. The implications of the issues discussed in this review for practice in health services are related to the fact that attention to PLWHIV should not be restricted to meeting religious needs, as is done in most hospitals where humanized care is present. Even though they are more frequent in the results of this review, it is necessary to expand care to listen to these people's emotional, existential, and social needs. The same goes for health policies aimed at this population.
The inclusion of SN in healthcare may be valuable for PLWHIV's treatment, as it indicates how these people look for support to become stronger when facing the adversities imposed by the disease (Da Cruz et al. 2017), and how to improve the coexistence of these people with themselves and their disease.
The limitations of this review were the economic constraints that limited the inclusion of paid articles. Another limitation was not including non-peer reviewed articles, conference papers, legal databases, or public opinions. Future research may confirm these results, with more significant and broader themes up for consideration.

Conclusions
Through a systematic review, the present study aimed to uncover how PLWHIV approach their spiritual needs. Fifty-nine distinct definitions were identified and grouped into four main categories: religious needs, social needs, existential needs, and emotional needs, corroborating the adequacy of Koenig and Büssing's spiritual needs dimensions, and the approach that is present in the SpNQ for the study of SN in different cultures.
Assessing the spirituality of different populations is essential for the subsequent elaboration of interventions related to this theme in health settings.
The study calls attention to the lack of a clear and updated definition for SN, the concept's multidimensionality, and the cultural differences in the included papers. It reveals the need of each culture to research, and to find an adequate meaning of spirituality to cater to the spiritual needs of people undergoing healthcare, before setting health policies.
The study demonstrated the significance of being aware of such content for health professionals. Its possible association with therapeutic issues such as adhesion, social support, individual conflicts, and singularities that may help PLWHIV when confronting the disease, was also emphasized.