Complex Problems, Care Demands, and Quality of Life Among People Living With HIV in the Antiretroviral Era in Indonesia

Complex Problems, Care Demands, and Quality of Life Among People Living With HIV in the Antiretroviral Era in Indonesia

Accepted Manuscript Complex problems, care demands, and quality of life among people living with HIV in the antiretroviral era in Indonesia Linlin Lin...

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Accepted Manuscript Complex problems, care demands, and quality of life among people living with HIV in the antiretroviral era in Indonesia Linlin Lindayani, MSN, RN, Yen-Chin Chen, MSN, RN, Jung-Der Wang, MD, ScD, Nai-Ying Ko, PhD, RN PII:

S1055-3290(17)30253-4

DOI:

10.1016/j.jana.2017.10.002

Reference:

JANA 969

To appear in:

Journal of the Association of Nurses in AIDS Care

Received Date: 19 December 2016 Accepted Date: 2 October 2017

Please cite this article as: Lindayani L., Chen Y.-C., Wang J.-D. & Ko N.-Y., Complex problems, care demands, and quality of life among people living with HIV in the antiretroviral era in Indonesia, Journal of the Association of Nurses in AIDS Care (2017), doi: 10.1016/j.jana.2017.10.002. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

ACCEPTED MANUSCRIPT Complex problems, care demands, and quality of life among people living with HIV in the antiretroviral era in Indonesia

Linlin Lindayani, MSN, RN Yen-Chin Chen, MSN, RN

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Jung-Der Wang, MD, ScD Nai-Ying Ko, PhD, RN

Linlin Lindayani, MSN, RN, is a doctoral student, Institute of Allied Health Sciences,

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College of Medicine, National Cheng Kung University, Tainan, Taiwan, and teacher, College of Nursing, Persatuan Perawat Nasional Indonesia West Java, Indonesia. Yen-Chin Chen, MSN, RN, is a doctoral student, Institute of Allied Health Sciences, College of Medicine,

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National Cheng Kung University, Tainan, Taiwan. Jung-Der Wang, MD, ScD, is a chair professor, Department of Public Health, College of Medicine, National Cheng Kung University, Tainan, Taiwan. Nai-Ying Ko*, PhD, RN, is a professor and deputy director, Department of Nursing, College of Medicine, National Cheng Kung University, National

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Cheng Kung University Hospital, Tainan, Taiwan ([email protected]).

*Corresponding Author: Nai-Ying Ko: [email protected]

Disclosures

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The authors report no real or perceived vested interests that relate to this article that could be

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construed as a conflict of interest.

Acknowledgments

This study was supported by the Directorate General of Resources for Science, Technology and Higher Education (Ministry of Research, Technology and Higher Education). We would like to thank Mrs. Christantie Effendy for permission to use the Bahasa version of the PNPC. We are most grateful to all patients enrolled in this study for their valuable participation.

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Abstract People living with HIV (PLWH) suffer from physical and psychological distress that palliative care could alleviate. Our cross-sectional study identified HIV-related problems and demands for

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palliative care at different disease stages, and their interactions with quality of life (QOL) in 215 PLWH from a referral hospital and an AIDS non-government organization in Indonesia. A brief survey of demographic information, the Bahasa version of Problems and Needs of Palliative

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Care, and the WHOQOL- HIV BREF (Cronbach’s alpha = .89), were used for data collection. Mean age was 33.5 (SD = 4.7); 66% were male. Fatigue (67%) was the most prevalent symptom,

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and the symptom sleeping problems (54.9%) was the priority for palliative care. Higher spiritual and financial demands were found in PLWH with stage-IV HIV. Multivariable analysis indicated negative associations between QOL and psychosocial problems, and demands for social and financial support. Interventions focused on psychosocial issues would improve the QOL for

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PLWH.

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Keywords: HIV, palliative care demands, psychological symptoms, quality of life

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Complex problems, care demands, and quality of life among people living with HIV in the antiretroviral era in Indonesia Indonesia is ranked as having the third-largest number of people living with HIV

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(PLWH) in the Asia and Pacific region (Joint United Nations Programme on HIV/AIDS

[UNAIDS], 2015). The estimated number of PLWH in Indonesia increased significantly from

5,846 in 2004 to 690,000 in 2015; the number of AIDS diagnoses also increased from 4,973 in

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2004 to 77,112 in 2015, while the estimated number of deaths due to AIDS was 35,000 in 2015 (Ministry of Health Republic of Indonesia, 2015). The Indonesian government has been

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providing free antiretroviral therapy (ART) for PLWH since 2004 and, at present, about 62% of PLWH receive ART (Ministry of Health Republic of Indonesia, 2015). The fatality rate dramatically declined from 13.86% in 2004 to .02% in 2015 due to the success of ART in reducing the HIV-related mortality rate (Chu & Selwyn, 2011; Ministry of Health Republic of

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Indonesia, 2015).

The World Health Organization (WHO, 2005) has recommended integrating palliative care into HIV health services in addition to continuous care from diagnosis to the end of life.

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Globally, as of 2014, the estimated number of people around the word in need of palliative care at the end of life was 20.4 million, of which 5.7% were PLWH (World Hospice Palliative Care

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Association, 2014). In Indonesia, as of 2014, 234.12 to 353.39 per 100,000 adults were in need of palliative care, and 9.97 to 13.33 per 100,000 were PLWH (World Hospice Palliative Care Association, 2014). Although the Indonesian government issued a policy to integrate palliative care into HIV health services in 2012, the provision of such care in Indonesia is still in the developmental stage, and only available in seven cities on the three major islands (Rochmawati, Wiechula, & Cameron, 2016). Currently, cancer patients receive the first priority for palliative

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care in Indonesia, and only one non-government organization (NGO) provides home-based palliative care for children living with HIV. As a result, PLWH in Indonesia suffer from a high disease burden and often die at home with insufficient support from health care professionals

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(Effendy et al., 2014; Ibrahim, Haroen, & Pinxten, 2011). Achieving palliative care goals

requires nurses to care for patients physically, socially, psychologically, and spiritually. This strategy can be effective only if the needs and demands of PLWH in Indonesia are known.

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There is a lack of information about the problems of and demands for palliative care among PLWH at different disease stages in the current ART era. Previous evidence reported that

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physical and psychological distress were the most common problems related to the demand for palliative care, while spiritual issues were found to be a less common problem for PLWH (Halman, Carusone, Stranks, Schaefer-McDaniel, & Stewart, 2014; Harding et al., 2012; Herce et al., 2014; Simms, Higginson, & Harding, 2011). More specifically, PLWH have reported a

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high prevalence of pain, lack of energy, worry, insomnia, and sexual dysfunction (Merlin et al., 2012; Namisango et al., 2014; Perry et al., 2013; Wilson et al., 2016). HIV is categorized into clinical stages 1 to 4, based on clinical manifestations, regardless of CD4+ T cell count (WHO,

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2007). A study investigating the symptoms experienced in different disease stages emphasized that PLWH in the late-stage suffer more from physical and psychological symptoms, such as

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feeling hungry, tired, worried, and sad, than those in the early stages of disease, but this work only explored physical and psychological symptoms (Namisango et al., 2014). Moreover, studies on the need for palliative care have shown pain relief and symptom management, psychological support, spiritual care, and food and financial support as the major palliative care needs for PLWH (Herce et al., 2014; Lofgren et al., 2015). People with late-stage HIV have been shown to be more in need of medical and psychological support and housing, but the related study did not

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compare demands at different disease stages (Halman et al., 2014). Evidence has indicated that HIV palliative care is effective in the management of pain symptoms, anxiety, and improving the quality of life (QOL; Harding et al., 2013). Although

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QOL is the core outcome and included in the definition of palliative care, few studies have

examined the interactions between problems, demands, and QOL in PLWH. Only one study has been conducted in a cancer population that emphasized a correlation between impaired QOL and

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increased physical, psychological and spiritual needs, as well as higher levels of anxiety and depression (Buzgova, Hajnova, Sikorova, & Jarosova, 2014). A review of the literature on the

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determinants of QOL among PLWH indicated that immunological status, the presence of symptoms, depression, and social support have been consistently associated with the QOL, but did not specifically identify patients’ needs in this context (Degroote, Vogelaers, & Vandijck, 2014). Understanding the specific problems or demands associated with QOL would enable

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health care professionals to better provide direct care to improve the QOL of patients. However, the majority of evidence generated so far about problems and demands in relation to palliative care for PLWH has been related to physical and psychological symptoms, and few studies have

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assessed the complexity of problems and demands for palliative care at different disease stages and their interactions with QOL. We aimed to identify the prevalence of problems experienced

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by PLWH in Indonesia, the priority for HIV palliative care demands at different disease stages, and to determine the interactions between problems, demands, and QOL. Methods

Study Design and Subjects We conducted a cross-sectional study with convenience sampling. Subjects were recruited from an HIV clinic at a referral hospital and an AIDS NGO in Bandung, Indonesia.

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Bandung is a large city and has been ranked as having the sixth highest HIV prevalence in Indonesia (Ministry of Health Republic of Indonesia, 2015). Subjects were eligible if they were older than 18 years with an HIV diagnosis, and were able to understand written and spoken

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Bahasa Indonesia. Subjects with poor cognition, psychiatric disorders, or pregnancy were excluded. Procedure

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After obtaining human subject approval from the institutional research board from the Universitas Padjadjaran, we approached the managers of the clinic and NGO, where we

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introduced the study purposes, inclusion and exclusion criteria, potential benefits, and efforts that would be taken to protect the subjects. The managers then informed eligible participants about the study prior to data collection. During clinical visits to the hospital and/or biweekly social group meetings held at the NGO, the managers introduced eligible subjects to us and we invited

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them to participate in the study. If they expressed a willingness to do so, we asked them to provide written informed consent and told them they had the right to withdraw from the study at any time and for any reason. Subjects who agreed to participate completed the research

Measures

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questionnaire in a private location before their scheduled appointments.

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A brief self-administered demographic information form was collected via paper and

pencil, which included the participant’s date of birth, gender, education level (low education defined as less than 9 years of education, and higher education as more than this), living area, household income per month (low economic status defined as under the regional minimum salary, ≤ $150 USD, and higher economic status if above this), and insurance coverage. Data of time since diagnosis with HIV, mode of HIV transmission, CD4+T cell count in cells/mm3 for

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the previous 6 months, ART, and HIV clinical stages were abstracted from the medical records. HIV clinical stage was categorized as 1 to 4 according to the WHO classification in 2007, which

and does not require a CD4+T cell count (WHO, 2007).

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refers to clinical manifestations that guide the diagnosis, evaluation, and management of HIV,

Patient problems and demands for palliative care. Problems and demands for palliative care were assessed using the Bahasa version of the Problems and Needs for Palliative Care

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(PNPC) short version, which consists of 34 items. The PNPC asks to which degree subjects actually experience a problem (Yes/Somewhat/No) and their perceived needs for professional

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support (Yes, more/The same as I am receiving now/No). The validity and reliability of the English version has been established in seven domains: daily activities, physical symptoms, autonomy, social issues, psychological issues, spiritual issues, and financial problems; the Cronbach’s alpha of the English version has been reported as 0.69 to 0.86 for problem aspects

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and as .70 to .86 for perceived needs (Osse, Vernooij, Schade, & Grol, 2004). The PNPC was translated into Bahasa Indonesia by Effendy et al. (2014) for use in patients with cancer. For the purpose of our study, one question in the psychological domain was modified from fear of

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metastases to the fear of disease progression. The PNPC in our study included 35 questions with a Cronbach’s alpha of .89 for problem aspects and .85 for perceived needs.

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Quality of life. QOL was assessed using the Bahasa version of the World Health

Organization Quality of Life Assessment (WHOQOL-HIV Brief), which consists of 31 items and uses a five-point Likert scale, in which 1 indicates the lowest grade of satisfaction or perceived as strongly negative, while 5 indicates the highest satisfaction or perceived as strongly positive (World Health Organization Quality of Life Assessment [WHOQOL] HIV Group, 2004). Scores are scaled in a positive direction, where higher scores denote higher quality of life

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(O’Connell & Skevington, 2012). The English version has been shown to have adequate internal consistency reliability (0.70), with Cronbach’s alpha ranging from .72 to .82 (O’Connell & Skevington, 2012). The WHOQOL-HIV Brief was translated into Bahasa using a forward-

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backward translation technique and pilot tested on 45 PLWH in Indonesia (Lindayani, Anna, & Emiliyawati, 2009). The internal consistency of the overall score was .85, and ranged from .70 to .85 for each domain. The Cronbach’s alpha in our study was .89.

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Data Analysis

Analyses were conducted using the Statistical Package for the Social Sciences (SPSS)

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version 22.00 for Windows. A descriptive analysis was applied for demographic and clinical variables, problems and demands for palliative care, and QOL. The comparison of problems and demands for palliative care and QOL at different disease stages was evaluated by a general linear model (Tukey’s test) after adjusting for age, gender, education, monthly income, ART, and

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number of dependents. The interactions between problems, demands, and QOL were analyzed using multiple linear regression and path analysis. Multiple linear regression was also applied to estimate the determinants of QOL after adjusting for age, gender, income, residence, education,

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and clinical variables (current CD4+T cell count, duration-to-date, receiving ART or not). Because we speculated that the total number of problems and demands for palliative care would

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be highly correlated, we used a variance inflation factor (VIF) to test for collinearity. Each domain in the problems was highly correlated with the domains in demands for palliative care (VIF > 4; O’Brien, 2007). A path analysis was used to examine whether identified problems mediated the relationship between demands and an overall score of QOL. The following three equations were used: (a)  =  +  +  ; (b)  =  + ́ + ; and (c) I =  + α +

 (MacKinnon, Lockwood, Hoffman, West, & Sheets, 2002). In these, QOL (Y) was the

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dependent variable; demands (X) was the independent variable, and problems (I) was the intervening variable (mediator). ε1, ε2 and ε3, coded unexplained variability, and the intercepts were β01, β02, and β03. In the first equation, the dependent variable was regressed on the

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independent variable. The τ coefficient in this equation was an estimate of the total or unadjusted effect of demands on QOL. In the second equation, the dependent variable was regressed on the independent variable and the third variable. The τ′ coefficient in Equation (b) was an estimate of

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the effect of demands on QOL taking into account the problems. In Equation (c), α represented the relation between the independent and intervening variables. In a mediation context, the

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difference τ – τ′ represented the indirect (mediated) effect of demands on QOL by causing changes in the mediator.

Results

A total of 215 (62.3%) participants of the total 345 patients who came to the clinic and

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social groups during the data collection period agreed to join this study. Respondents were younger than the non-respondents (M ± SD = 33.5 ± 4.7 vs. 35.3 ± 5.2 years of age), and there was a higher proportion of females than males (34% vs. 20%). The majority of the participants

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were single (53%), resided in an urban area (53.3%), and had a low education level (70.2%), low economic status (68.8%), and low rate of insurance coverage (98.6%). The majority of study

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participants (68.8%) indicated injecting drugs as the primary risk factor for HIV transmission. Most patients (86.5%) had disclosed their HIV status to family members. The mean time living with HIV was 5.8 years (SD = 3.25, range: 0 - 14 years). More than 80% were receiving ART, with a median current CD4+T cell count of more than 350 cell/mm3. Problems and Demands for Palliative Care at Different Disease Stages Figure 1 depicts the most common problems and the priority of demands for palliative

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care in PLWH. Physical problems were identified as the most frequent problems and demands, followed by psychological, financial, and social problems. Specifically, fatigue was the most common problem experienced by PLWH (67%), followed by sleeping problems (57.2%), pain

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(53.5%), fear of disease progression (52.6%), and extra expenditures because of the disease (47%). Sleep problems (54.9%) was the highest priority demanding more attention and care from health professionals, followed by pain management (51.6%), financial support (32.1%),

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management of fear of disease progression (30.2%), and perception of self-stigma (26.5%). After controlling for demographic and clinical factors, compared to people at early stages

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(I + II) of HIV, people at late-stage (IV) HIV exhibited statistically significantly higher demands for palliative care (stage IV = 6.91 vs. stage III = 4.83, & stages I + II = 5.24, p = .026). At the late-HIV stage, subjects reported significantly higher financial and spiritual problems and required more financial and spiritual support than patients at earlier stages (p < .05). There were

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no significant differences in the physical, psychological, social, autonomy, and activities of daily living (ADL) domains at different disease stages for either problems or demands for palliative care (Figure 2).

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Predicting QOL

The mean overall WHOQOL-HIV score was 78.9 (SD = 9.08; range: 46 - 101). There

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were no significant differences in any of the WHOQOL-HIV domain scores at different disease stages after controlling for potential confounding factors. Higher income and ART were the major factors associated with increased overall scores and in the three domains of QOL (physical, psychological, and social domains; Table 1). However, income was found to have an additional effect on the environmental domain. After adjusting for demographic and clinical variables, the number of psychological and social problems, and social and financial needs were

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significantly associated with overall scores for QOL and the social domain. Meanwhile, the number of psychological problems and the demands for financial support were associated with

Interactions between Problems, Demands, and QOL

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the psychological domain.

It can be seen in the path diagram in Figure 3 that perceived problems partially mediated the relationship between demands and QOL, which indicated that problems mediated the

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relationship between demands and QOL. In step 1, demands were significantly associated with QOL, and the total effect (τ) was -.49. In step 2, the effect of demands on QOL was reduced but

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continued to be significant when problems were entered in the regression model. The indirect effect of demand-QOL, as mediated by problems (τ-τ′), was -.46. In step 3, problems were significantly associated with demands (direct effect [β] = -.54), and these results indicated that problems partially mediated the relationship between demands and QOL.

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Discussion

Fatigue was the most common problem reported by PLWH, and sleep problems were the first priority for palliative care demands. This was different from previous studies in which pain

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was reported as the most prevalent and the first priority demand for palliative care (Harding et al., 2012; Herce et al., 2014; Merlin et al., 2012; Simms et al., 2011). In the era of ART,

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pathogenic HIV-related fatigue remains poorly understood but it is likely that complex mechanisms contribute to the problem. A possible explanation for HIV-related fatigue could be long-standing HIV infection, the adverse effects of ART, and/or less than ideal adherence to ART (Claborn, Meier, Miller, & Leffingwell, 2015; Payne et al., 2013). Recent work conducted by Wilson et al. (2016) supported the notion that fatigue was the most common distressing symptom in HIV, and the prevalence of fatigue was higher in our study (67%) than in Wilson’s

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work (47%). Studies also have suggested that poor sleep quality may increase the feeling of fatigue (Byun, Gay, & Lee, 2016), and that this may mediate the association between distress and fatigue (Marion et al., 2009). Professional care focused on sleep problems would thus be a

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viable solution for psychological distress and fatigue in the era of ART.

Our study found spiritual and financial demands to be higher in late-stage HIV as

compared to those in early stages. Previous studies have not compared the demands for palliative

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care at different disease stages (Halman et al., 2014; Herce et al., 2014). More than 80% of Indonesian people are Muslim and, for Muslims, the concepts of death, the afterlife, and

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consignment to Jannah (paradise) or Jahannam (hell), are associated with good and bad deeds (Lapidus, 1996). Therefore, it is important for health care providers to promote spiritual care, especially for those in late-stage HIV. With regard to financial problems, although the services for ART are free of charge in Indonesia, PLWH still have to pay for related medical diagnostic

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tests, other medications, and transportation (Ibrahim et al., 2011). People in late-stage HIV in particular have additional expenditures for comprehensive health care and follow-up after hospitalization (Halman et al., 2014; Ibrahim et al., 2011). According to our findings, on

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average, for each clinical visit, PLWH have to pay $5 to $32 USD, and the majority of our participants were of low socio-economic status, with more than 90% uninsured. Indonesia started

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to develop its National Health Insurance system in 2014, but the proportion of people registered is still low, especially in the case of self-employed and/or unemployed individuals, with the majority of PLWH in these groups (BPJS Kesehatan, 2015). It is thus very important for the Indonesian government, especially in the Bandung region, to increase the quantity and quality of free health care services dedicated to HIV. In our study, poor QOL was associated with higher psychological and social problems

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and increased social and financial demands. The relationship between such demands and QOL was significantly and partially mediated by these problems. Other studies have noted that the presence of symptoms and psychological problems were consistently associated with poor QOL

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(Degroote et al., 2014), but no association was found between demands and QOL in PLWH. In a study of cancer patients, poor QOL was associated with higher levels of anxiety and depression and increased physical, psychological, and spiritual needs (Buzgova et al., 2014). In our study,

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social problems, such as difficulty finding someone to discuss the disease with and perceived HIV self-stigma, were the major issues for PLWH in Indonesia. Due to fear of being

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discriminated against, PLWH in Indonesia tend not to disclose their status to others, not to use condoms in their sexual activities, and not to seek and receive treatment for HIV, which will also affect the QOL (Liu, Xu, Lin, Shi, & Chen, 2013). Direct intervention for psychological and social problems would help to meet patient demands and might, in turn, improve QOL. It is also

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important to address the significance of the impact of HIV-related discrimination on psychological and social problems, and to promote zero-stigma campaigns, as recommended in the UNAIDS strategy (UNAIDS, 2010).

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Consistent with a study conducted in Taiwan (Hou et al., 2014), receiving ART was a strong predictor of QOL in our study. This finding highlighted the fact that initiation of ART was

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very important to improve QOL, particularly in the physical, psychological, and social domains. According to Indonesia’s guidelines for HIV treatment, ART is given to patients with CD4+T cell counts of less than 350 cells/mm3 and/or people in HIV clinical stages III and IV (Ministry of Health Republic of Indonesia, 2014). However, there is generally limited access to ART in rural areas, because such treatments are only provided at those hospitals for tertiary and/or secondary care located in urban areas. Our study provides direct evidence suggesting that the

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Indonesian government should follow the 2015 WHO guidelines to provide initiation of ART regardless of CD4+T cell count, and to improve accessibility to ART in rural areas (WHO,

Limitations

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2015).

Our study had the following limitations. First, we applied the PNPC instrument that was originally developed for patients with cancer, not PLWH. The PNPC might lack validity with

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regard to addressing important HIV-related issues, such as disclosure, methadone therapy, and HIV co-morbidity. Second, the findings might not be generalized to various levels of the health

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care system in Indonesia, because we only included one tertiary HIV hospital in Bandung, Indonesia. Indonesia has 34 provinces distributed on more than seven large islands. Nonetheless, although selection bias in this research cannot be ruled out, our study recruited participants from a tertiary HIV hospital and an AIDS NGO, which have similar demographic characteristics to

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PLWH across Indonesia.

Conclusion

In conclusion, our findings indicated that fatigue was the most common problem and that

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sleeping problems should be the first priority in HIV palliative care. Moreover, spiritual and financial demands were higher for people with late-stage HIV, and receiving ART was a strong

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predictor of QOL. ART plays an important role in improving QOL, particularly in the physical, psychological, and social domains. Moreover, poor QOL was associated with higher psychological and social problems and increased social and financial demands. The association between demands and QOL was significantly and partially mediated by problems. The findings thus suggest that direct intervention for problems would help meet patient demands and might improve QOL for PLWH. Future research should tackle the issues of providing spiritual care,

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especially for patients with late-stage HIV, and should address effective treatments for sleep

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problems as well as fatigue in PLWH.

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life. Retrieved from www.thewpca.org

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Key Considerations •

Palliative care improves quality of life for people living with HIV (PLWH) and is

of implementation of palliative care for PLWH. •

Fatigue is the most prevalent problem and sleeping problems should be the first priority in HIV palliative care.

Patients with late-stage HIV show greater demands for spiritual and financial support, and

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recommended by the World Health Association (WHO), but in Indonesia there is still a lack

more attention to these demands may improve the quality of life (QOL) of PLWH.

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The Indonesian government should follow the 2015 WHO guidelines to provide initiation of antiretroviral therapy (ART) regardless of CD4+T cell count, and to improve accessibility to

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ART in rural areas.

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Table 1 Regression Coefficients (Standard Error in Parentheses) of Determinants of WHOQOL-HIV Scores Based on a Multiple Linear Regression in People Living With HIV. Overall score WHOQOL

Physical domain

Psychological domain

Gender (female vs. male) Income1

-1.59 (1.25)

-.56 (.32)

-.84*(.32)

2.67*(1.09)

.50*(.27)

.60*(.31)

Residence2

2.30*(1.21)

.19 (.31)

Environmental domain

-.25 (.31)

.03 (.28)

.76**(.27)

.72**(.25)

.56*(.28)

.32 (.29)

.44 (.27)

.28 (.18)

.02 (.01)

.008 (.04)

.009*(.04)

.008 (.04)

.004 (.003)

.002*(.001)

.000 (.001)

.000 (.001)

.001 (.001)

Receiving ART4

2.08*(.81)

.64**(.21)

.42*(.21)

.34*(.20)

.28 (.18)

.12

.11

.12

.09

.07

-.27 (.34)

-.20*(.10)

-.01(.09)

.006 (.08)

-.07 (.07)

-.11**(.37)

-.14 (.12)

-.34**(.11)

-.31**(.11)

-.21*(.09)

-.88*(.43)

-.03 (.12)

-.18 (.11)

.27*(.11)

-.12 (.09)

.23

.20

.25

.28

.19

.11

.09

.13

.19

.12

-.93*(0.45)

-.06 (.12)

-.17 (.12)

.26*(.10)

-.12 (.10)

-.17 (.12)

-.34**(.11)

-.30**(.10)

-.17 (.09)

.21

.28

.29

.21

.01

.03

.01

.02

# physical symptoms # psychological problems # social problems R² ∆R²

∆R²

.18***(.29) .25

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# demands for social support # demands for financial support R²

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Duration to date, years CD4+T cell count3

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Social domain

.02

Note: ART = antiretroviral therapy; 1high/low; 2rural/urban; 3cells/mm3; 4yes/no; *p < .05; **p < .01; *** p < .001.

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PHYSICAL-DOMAIN Fatigue

67

23.3 57.2 54.9

Sleeping problems

53.5 51.6

Cough

28.8

15.8

Sweating/hot flushes

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Pain

18.1

22.3

PSYCHOLOGY-DOMAIN Fear of disease prognosis

52.6

30.2 22.3

Fear of physical suffering

22.3

Depressed mood

47

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Coping difficulty

39.5

33

18.6

31.6

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Angry and frustation

16.3

FINANCIAL DOMAIN Extra expenditures

32.1

SOCIAL DOMAIN Finding others not receptive

34

17.2

Perceived HIV self-stigma

26.5

33.5

31.6

15.8

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Problems in the relationship

47

AUTONOMY DOMAIN

Being dependent of others Experiencing loss of control

16.7

24.2 33

13

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SPIRITUAL DOMAIN

Concerning the meaning of death Difficulties to accept the disease

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Difficulties to be engaged

26

16.3

22.3

8.8

21.9

9.3

ADL DOMAIN

Personal transportation % of patients reporting problems

11.2

0

10

15.3

20

30

40

50

60

70

80

% of reporting demands for care

Figure 1. The prevalence of problems and priority of demands for palliative care in people living with HIV in Indonesia (N = 215). Note. ADL = activities of daily living.

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Figure 2. Mean scores of domains for problems and demands for palliative care at different disease stages.

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Note: ADL = activities of daily living; Every model was adjusted for gender, age, education, monthly income, ART, and number of dependents; Solid fill indicates the problems for each domain; No fill indicates demands for palliative care for each domain; ♦ indicates stage I+II of HIV disease; ■ indicates stage II of HIV disease; ▲ indicates stage IV of HIV disease; p < .05 in bold are considered statistically significant.

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Problem .86*** (α)

Demand

QOL -.49*** (τ)

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-.54** (β)

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Figure 3. Path diagram and equation for the mediational QOL model. Note: Total effect for demand-QOL (τ) = -.49; Direct effect of demand-QOL (τ′) = -.02; Indirect effect of demand-QOL mediated by problem (τ-τ′) = -.46; *p < .05; ** p < .01; *** p < .001; QOL = quality of life.