Sense of Grip on Disease Among Persons Living with HIV: Insights from a Mixed-method Study in a Tertiary Care Hospital of Kolkata, India

Abstract

Background:

Individuals with chronic disease must comprehend their diagnosis (sense) and gain control over the ailment (grip on disease). However, HIV-AIDS is different due to stigma and discrimination. Yet, persons living with HIV, with a robust sense of grip on disease (SoGoD), can lead satisfying lives. This study aimed to assess the SoGoD status and its associates, and then elicit the perspective of the stakeholders.

Materials and Methods:

This mixed-method study was conducted among People Living with HIVs (PLHIVs) visiting a tertiary care hospital in Kolkata, India, from November 2023 to January 2024. The quantitative strand of the study was conducted among 120 PLHIVs on antiretroviral therapy (ART), and then the qualitative strand was conducted by in-depth interviews (IDIs) with study participants and key informant interviews (KIIs) with healthcare personnel. SPSS software was utilized for quantitative data analysis, and factors associated with the SoGoD were analyzed using logistic regression models. Qualitative data were analyzed thematically.

Results:

Among the study participants, 34% have a dynamic grip. Illiteracy (adjusted odds ratio [aOR] = 7.22, 95% confidence interval [CI] = 1.94–10.97), current marriage (aOR = 4.44, 95% CI = 1.61–12.27), no history of substance use (aOR = 2.79, 95% CI = 1.99–7.85), and lesser stigma and discrimination (aOR = 5.41, 95% CI = 1.96–7.86) were significantly associated with dynamic grip. Self-care, family and community support, and integrated institutional care were identified as major ways to enhance disease grip.

Conclusion:

Since HIV is a heavily stigmatized disease, measures such as early family engagement and counseling, and comprehensive and adaptable institutional care should be undertaken to improve their disease grip.

BACKGROUND

HIV-AIDS is a relatively new disease to mankind, first identified in the early 1980s, and its causative agent, HIV, was discovered not until 1986. Even after that, no treatment was available for almost a decade, which resulted in a global epidemic of HIV-AIDS. India, too, witnessed its first case of HIV in 1986 in Chennai, which only increased over time. Currently, it is estimated that over 24.01 lakh People Living with HIV (PLHIV) in India.[1] In 1993, the first antiretroviral therapy (ART), Zidovudine, paved the way for highly active antiretroviral therapy, which started a transformative era in HIV management, converting what was once a death sentence into a chronic, manageable disease requiring lifelong treatment.

Chronic diseases, by definition, persist throughout a person’s life, demanding a multifaceted approach to their medical, social, and psychological needs. The World Health Organization characterizes chronic diseases as those lacking a definitive cure but needing ongoing management through medical treatments and health behavior interventions.[2,3,4,5] As per Maiello et al., the management of chronic diseases involves a critical experience that includes affective, visceral, and bodily dimensions, which often cannot be described through words.[6] This amalgamation of experiences can be translated into narratives through a process termed “Sense-making.” However, the development of psychological competencies required for coping with the disease can be referred to as a “Grip on Disease.”[6] Thus, the “Sense of Grip on Disease” model, rooted in narrative, semiotic, and socioconstructive perspectives, aimed to explore the critical experiences that individuals undergo post-diagnosis and its impact on their mental competencies, essential for holistic management of their disease.[6,7,8] However, the unique trajectory of HIV as a chronic disease is different from other chronic conditions, not only because of its medical course but also due to the sociocultural factors. A specific challenge faced by PLHIV is that of stigma and discrimination, uncommon in many other chronic diseases.[9,10]

Stigma and discrimination against PLHIV manifest in various forms even after the implementation of the HIV-AIDS (Prevention and Control Act, 2017. It can lead to negative consequences, such as concealment of diagnosis, denial of social and economic resources, social isolation, heightened stress, emotional vulnerability, and compromised health-seeking behavior. These factors collectively contributed to a diminished quality of life for PLHIV across physical, mental, and social domains. In this aspect, a robust sense of grip on disease (SoGoD) becomes important for individuals living with HIV, which empowers them to lead a fulfilling life despite the challenges posed by their condition, ultimately improving their quality of life. So, the chronic nature of HIV infection paired with social stigma requires a comprehensive approach that can capture both measurable factors and lived experiences of a PLHIV, to explain the meaning-making process that shapes their psychological coping and disease management, i.e., SoGoD status. Thus, we adopted a mixed-methods approach, more specifically an explanatory sequential design, because the subsequent qualitative phase is crucial to explore the contextual and sociocultural reasons behind quantitative findings. In this context, our study aimed to assess the SoGoD status among PLHIV and then determined the factors associated with it, with a particular emphasis on stigma and discrimination. Subsequently, we have also tried to elicit the perspective of the stakeholders regarding the same.

MATERIALS AND METHODS

This mixed-method study (explanatory sequential design, Morse notation: QUAN → qual) was conducted in the antiretroviral therapy center of a tertiary care hospital in Kolkata, India, from November 2023 to January 2024. The quantitative strand (phase I) of this study was conducted among adults (18 years or more) who were diagnosed with HIV, registered for treatment in the study setting, taking ART, and visited the same site during the study period. Those who were sick, and/or refused/unable to give written informed consent, were excluded from the study on ethical grounds. For the qualitative strand (phase II), participants from phase I and healthcare providers (HCPs) working in the study setting, who were willing to participate and gave written informed consent included [Figure 1].

Figure 1.

Procedural diagram of study design indicating flow and integration of quantitative and qualitative data (Source: Self)

SAMPLING

For phase I, the sample size was calculated using Cochran’s formula,

Considering 50% prevalence (p) of compliant grip, where q = 1-p (as because SoGoD is a relatively new concept and we did not come across any similar studies, more specifically among PLHIV), 10% absolute error (L), 95% confidence level (Zα_/2 = 1.96), design effect of 1.2 (as simple random sampling was not possible), and 5% nonresponse rate. The required sample size was 120. There were, on average, 70 people diagnosed with HIV visiting the study setting on a regular working day. Considering the selection of a maximum of 10 participants each day, the sampling interval came to seven. Thus, systematic random sampling was applied using the daily visitor list to select every 7^th visitor for the first phase. Random start was separately selected for each data collection day using a random number table. Repetition was avoided by noting their unique ID number assigned by the ART center.

For phase II, individuals with dynamic and compliant grips (two categories of SoGoD) were followed up using their unique ID number, and then, they were selected using purposive sampling for the in-depth interview (IDI). Individuals with dynamic and compliant grips were interviewed separately till the point of data saturation. For key informant interview (KII), the Senior Medical Officer (SMO), Counselor, and Nursing personnel were selected by convenience sampling.

Data collection and study tools, and parameters used

For phase I, upon selection, the individual was approached, and the initial rapport was established. Then, they were explained the research and its objectives, and upon agreement, they were interviewed. Quantitative data were collected, using a close-ended, predesigned, pretested, structured interviewer-administered questionnaire containing the following domains-

1. Sociodemographic details like age, gender, religion, education, occupation, marital status, area of residence, family details, and socioeconomic status (assessed by the modified BG Prasad Scale 2023)[11]

2. Behavioral details like any substance use, i.e., tobacco, alcohol, IV drug, cannabis, etc., and any stigma-discrimination faced for HIV. Stigma discrimination was assessed using the HIV Stigma scale—short version, a validated tool by confirmatory factor analysis with a Cronbach’s alpha of 0.8, developed by Reinius et al., and it had 12 questions with responses on a four-point Likert scale of one to four (strongly disagree to strongly agree). Permission was taken from the authors for the use of this tool. Total score ranges from 12 to 48, and we have taken the median value of 30 as a cutoff (because the score range was not normally distributed) for a higher level of stigma and discrimination.[12,13]

3. SoGoD tool for assessment of the sense of grip on the disease. It was a tool validated by confirmatory factor analysis with a Cronbach’s alpha of 0.883. It was based on the SoGoD model given by Maiello et al., which divided the sense of grip over the disease as dynamic (or robust coping) and compliant grip (or poor coping).[6] The tool contains 15 questions with responses on a five-point Likert scale of one to five (strongly disagree to strongly agree). The total score ranges from 3 to 15, and a score of seven or more was given as a cutoff value for dynamic grip over disease.[14]

At the end, record abstraction was conducted to collect information regarding their health and disease status, such as time elapsed since diagnosis of HIV and ART initiation, comorbidities, CD4 count, viral load, current drug regimen, and history of any opportunistic infections. Confounding factors like the route of infection acquired were initially considered but ultimately removed on the suggestion from the IEC on the ground of privacy, as a question like this might make a participant uncomfortable. Nonresponse rate was minimal (4%), as out of 125 individuals approached for phase I, only five individuals refused consent.

Subsequently, analyzing the quantitative data, IDI and KII guides were prepared for phase II [Table S1]. Face-to-face IDIs were conducted using a pilot-tested, structured IDI guide [Table S2], in a private chamber in the study setting, so that the privacy of the participants could be maintained. A family member of the study participant was allowed during an interview if the participant asked for it. Participants with dynamic grip were asked about the practices that help them to achieve dynamic grip, whereas participants with compliant grip were asked about what they think can be done to improve their SoGoD status. Prompts were provided to them when they were facing difficulty understanding or hesitating in answering. As many of the participants did not give consent for audio recording, it was not possible to do so. Instead, the interviewer recorded verbatim field notes, and transcripts were made based on them. The interview summary was read back to the participant for their validation. Data saturation was achieved on the third and fourth IDI for participants with dynamic grip and compliant grip, respectively.

Table S1.

How quantitative findings were used to formulate IDI & KII guides

Quantitative Variable	Statistical Result	Reflected in	How it was incorporated in the IDI/KII Guide
Education (Significant)	Better SoGoD with higher education	IDI, KII	Probes on understanding HIV, access to information, ability to comprehend ART instructions.
Marital Status (Significant)	Married/divorced/widowed→higher SoGoD	IDI	Probes on spousal support, coping through relationships, abandonment, or partnership.
Substance Use (Significant)	Substance use→lower SoGoD	IDI	Direct probe under “Coping” about addiction, use, its relation to diagnosis, and treatment.
Stigma (Significant)	Stigma negatively affects SoGoD	IDI, KII	Central questions about discrimination at the family, society, and health system levels.
Duration Since Diagnosis (Not significant)	Not statistically significant	IDI	Added probes to explore whether longer diagnosis duration helped in adapting to HIV.
Age (Not significant)	Not significant in regression	IDI	Still explored in terms of maturity, responsibility, or burden related to disease control.

Table S2.

IDI Guide used in the qualitative strand

1. Can you describe how you felt when you were first diagnosed with HIV? (Living with HIV – Initial Experiences)
• What were your first thoughts or fears? • Who did you talk to about it? • How did your family/friends react (if you disclosed)? • Did you face any difficulties in understanding your diagnosis?
2. Over time, how have you managed to live with HIV? (Coping and Sense of Grip) • What has helped you cope? • What are the biggest challenges now? • How confident do you feel in handling your health? • Do you feel in control of your life and disease?
3. Have you ever felt discriminated against because of your HIV status? (Stigma and Discrimination) • By family, community, and healthcare providers? • Did it affect your self-confidence or mental health? Any changes over time?
4. What kind of support have you received from institutions like hospitals or NGOs? (Support Systems and Institutions) • How has the ART centre supported you? • Did you receive any counseling or psychological help? • What kind of information was given to you at diagnosis?
5. Are you part of any group or community of PLHIV? (Social and Peer Support) • How did you get involved? • Does it help you emotionally or practically? • Would you suggest such groups to others?
6. What could be done to better support people living with HIV? (Suggestions for Improvement) • From family? • From doctors/counselors? From the government/programs?

HCPs were interviewed for KII using the KII guide [Table S3], and with their consent audio recording was conducted. KII Transcripts were made after carefully listening to the audio recordings. An interview lasted for 10 to 30 minutes. All interviews were conducted by the principal investigator (SR), trained in qualitative research. There was no follow-up interview, and none of the participants, who were contacted for IDI, refused to take part.

Table S3.

KII guide used in the qualitative strand

1. What support systems are in place for newly diagnosed PLHIV? (Understanding HIV Diagnosis and Support)
• How are patients counseled initially? • Is there psychological first aid or peer support?
2. How does your institution help PLHIV develop a positive attitude or sense of control over their illness? (Role of Institution and Counseling) • Are any structured programs available? • Are family members involved in the care process? • Do you observe changes in patient confidence over time?
3. What are the most common barriers faced by PLHIV in managing their condition? (Challenges Observed) • Stigma from family/community? • Non-adherence to ART? • Any gender-specific or age-specific issues?
4. How effective are peer support networks and community-based efforts? (Role of Peer Educators and Community) • Do PLHIV interact with these groups? • Any success stories? • What more can be done to strengthen peer involvement?
5. What improvements would you recommend to help PLHIV gain better control over their health and life? (Policy and Program Suggestions) • Any training or HR needs? • Gaps in NACP implementation? • Innovative practices worth scaling?
6. Any additional thoughts? (Closing questions)

Data analysis

Quantitative data collected were analyzed using Microsoft Excel 2016 and Statistical Package for Social Sciences (SPSS) version 16.0 software, International Business Machines Corporation (IBM) (Armonk, New York, United States). Appropriate descriptive statistics, e.g., for continuous variables mean ± standard deviation or median (interquartile range) and for categorical variables frequency (%), were used. For inferential statistics, at first, Pearson’s Chi-square test was applied to detect any statistically significant difference (statistical significance level was considered as a P < 0.05). Then, bivariable logistic regression was performed individually for each independent variable having a statistically significant difference. All independent variables with significant P values in the bivariable regression or had strong biological plausibility were loaded together into a multivariable logistic regression model. Multicollinearity between independent variables was assessed by the variance inflation factor (VIF), and a VIF value of less than 10 indicated the absence of any multicollinearity. The strength of association between SoGoD status (compliant grip is the reference category) and independent variables was depicted using adjusted odds ratio (aOR) with 95% confidence interval. Model fitness was assessed by the Hosmer–Lemeshow test statistic. STROBE guidelines were followed for reporting the quantitative component.[15]

In phase II, codes were retrieved from the transcripts, and similar codes were combined into subthemes. McLeroy’s socioecological model was used to categorize subthemes into major themes.[16] This qualitative analysis was carried out independently by two authors, SR and MS. Any conflict between the authors regarding coding was resolved by the second author, LB. MMAT guidelines were used for reporting mixed-method results.[17] As per MMAT guidelines, the quantitative strand was reported using STROBE guidelines, and qualitative findings were reported by using COREQ guidelines [Table S4].[18]

Table S4.

MMAT checklist for reporting mixed methods findings

MMAT Criteria	Description/Explanation	Addressed in the study?	Notes/Evidence in Manuscript
1. Research questions are clearly stated.	Clear articulation of qualitative, quantitative, and mixed methods research questions.	Yes	Clear objectives: assessing SoGoD, associated factors, and stakeholder perspectives.
2. Adequacy of rationale for mixed-methods design.	Justification for why both quantitative and qualitative approaches were necessary.	Yes	Explained under rationale: limitations of solely quantitative data in capturing “grip” experiences.
3. Integration of study components.	Findings from qualitative and quantitative components are meaningfully integrated.	Yes	Joint display table created; discussed convergence/divergence in results.
4. Interpretation of integrated findings.	The integrated findings lead to new insights or interpretations not possible from a single method.	Yes	Your discussion synthesizes the findings to offer context-driven recommendations.
5. Consideration of limitations of integration.	Limitations of the integration process (e.g., different sample sizes, timing, or unequal weighting) are discussed.	Partial	The limitation section discusses generalizability and recall bias; integration issues can be elaborated.
6. Appropriate sequence of data collection.	In explanatory sequential design: quantitative→qualitative sequence is followed logically.	Yes	Quantitative SoGoD assessment→IDI/KII explored contextual factors.
7. Appropriate methods used for each component.	Each method is suitable for answering its respective question.	Yes	Quantitative: scoring and regression; Qualitative: IDI & KII using SoGoD model.
8. Sampling strategy described and justified.	Clear description of how samples were drawn for each component.	Yes	Quan: Systematic random Qual: Purposive
9. Quality criteria for each component met.	Standards (e.g., validity, reliability for quantitative; credibility, saturation for qualitative) are addressed.	Yes	Quan: STROB checklist Qual: COREQ checklist Validity of tool & data saturation mentioned.
10. The data integration strategy is clearly described.	Joint display, side-by-side comparison, or weaving approach is described and used.	Yes	Joint display table and thematic narrative used in the discussion.

RESULTS

Sociodemographic characteristics

Among 120 participants, the mean age was 46.8 ± 12.2 years, with a range of 21 to 76 (age was normally distributed). Seventy-five percent of them were male, and 75.3% were Hindu. Fifteen percent of them are illiterate, but most commonly they were studied up to graduation and above (21.7%). They were mostly (56.7%) married at present, and mostly belonged to a nuclear family (79.2%) [Table 1].

Table 1.

The sociodemographic characteristics of the study population (n=120)

Characteristics	n (%)
Age*	Mean±SD (46.8±12.2) years
21–40	38 (31.7)
41–60	70 (58.3)
More than 60	12 (10)
Gender
Male	90 (75)
Female	28 (23.3)
Others (Transgender)	2 (1.7)
Religion
Hindu	91 (75.3)
Muslim	28 (23.9)
Others (Christian)	1 (0.8)
Socioeconomic status
Upper class	21 (17.5)
Upper-middle class	22 (18.3)
Middle class	44 (36.7)
Lower-middle class	26 (21.7)
Lower class	7 (5.8)
Education*	Mean years of education (8.5±5.3)
Illiterate	18 (15)
Primary	15 (12.5)
Middle	25 (20.8)
Secondary	24 (20)
Higher secondary	12 (10)
Graduate and above	26 (21.7)
Occupation
Unemployed	14 (11.7)
Homemaker	16 (13.3)
Manual worker	45 (37.5)
Service	26 (21.7)
Business	13 (10.8)
Professional	6 (5)
Family type
Joint family	25 (20.8)
Nuclear family	95 (79.2)
Marital status
Single	29 (24.2)
Currently married	68 (56.7)
Widowed	12 (10)
Divorced and separated	11 (9.1)
Residence
Urban	81 (67.5)
Semi-urban	16 (13.3)
Rural	23 (19.2)
Total	120 (100)

*Normally distributed. SD=Standard deviation

Behavioral characteristics and stigma-discrimination

Among participants, 54.2% faced higher stigma and discrimination, and 42.5% of participants were addicted to some kind of substance. Among them, 34% had dynamic grip over their disease.

Health- and disease-related characteristics

The mean duration elapsed since diagnosis of HIV in the study participants was 7.5 ± 4.7 years. Out of them, 31.7% had one or more comorbid conditions. At least one opportunistic infection was reported by 62.5% of them, the most common being pulmonary tuberculosis (52%).

Factors associated with sense of grip on disease status

It was found that participants who are literate (aOR = 7.22, 95% CI = 1.948–10.971), participants who are currently married (aOR = 4.448, 95% CI = 1.612–12.279), participants without any history of substance use (aOR = 2.795, 95% CI = 1.995–7.85), and participants who faced relatively lesser stigma and discrimination (aOR = 5.411, 95% CI = 1.964–7.86) had statistically significantly higher odds of having dynamic grip over their disease status. This multivariable regression model was fit with a Hosmer–Lemeshow test statistic of 0.159, and it could describe 28.7% to 39.8% variance in the outcome variable, SoGoD, i.e., Cox–Snell R² 0.287, Nagelkerke R² 0.398 [Table 2].

Table 2.

Factors associated with sense of grip on disease status of the study participants: Logistic regression analysis (n=120)

Parameters	Dynamic grip, n (%)	uOR (95% CI)	P	aOR (95% CI)	P
Age
21 to 40	7 (17.5)	0.677 (0.145–3.169)	0.621		-
41 to 60	30 (75)	2.25 (0.561–9.031)	0.253	-	-
More than 60 (Ref)	3 (7.5)	1 (Reference)		-
Education
Literate	38 (95)	4.750 (1.035–21.801)	0.045	7.22 (1.948–10.971)	0.056
Illiterate (Ref)	2 (5)	1 (Reference)		1 (Reference)
Socioeconomic status^
Upper class	11 (72.5)	2.655 (1.017–6.931)	0.046	2.046 (0.619–6.762)	0.241
Non-UPPER class (Ref)	29 (27.5)	1 (Reference)		1 (Reference)
Marital status
Currently married	30 (75)	3.316 (1.432–7.677)	0.005	4.448 (1.612–12.279)	0.004
Others (Ref)	10 (25)	1 (Reference)		1 (Reference)
No history of substance use
Absent	28 (70)	2.220 (1.991–4.969)	0.053	2.795 (1.995–7.85)	0.051
Present (Ref)	12 (30)	1 (Reference)		1 (Reference)
Stigma and discrimination faced
Lesser stigma	32 (80)	5. 697 (2.331–13 922)	< 0.001	5.411 (1.964–7.86)	0.001
More stigma (Ref)	8 (20)	1 (Reference)		1 (Reference)
Time elapsed since diagnosis (↑)a	1.084 (0.999–1.177)	0.054	1.1 (0.985–1.227)	0.090
CD4 count
Less than cells/ml	2 (5)	4.030 (0.869–18.695)	0.075	-	-
200 or more cells/ ml (Ref)	38 (95)	1
Viral load
Non-detectable	4 (10)	1 (0.282–3.544)	0.999	--	-
Detectable (Ref)	36 (90)	1
ART type
First-line ART	37 (92.5)	0.822 (0.186–3.628)	0.796	-
Second- and third-line ART (Ref)	3 (7.5)	1

For the multivariable model, Cox–Snell R² 0.287, Nagelkerke R² 0.398, Hosmer–Lemeshow test statistic=0.159. *Reference category is compliant profile, ^aContinuous variable in ascending order, ^As per the modified BG Prasad Scale 2023.[11] uOR=Unadjusted odds ratio, aOR=Adjusted odds ratio, 95% CI=95% confidence interval, ART=Antiretroviral therapy

Qualitative exploration of ways to further enhance SoGoD status

Information from six IDIs and three KIIs was arranged in five major theme-based ways to enhance SoGoD status (as per McLeroy’s socioecological model), e.g., Individual level → Family level → Institutional level → Community level → Policy level [Figure 2 and Table S5].[15] Among the six IDI participants, two were male, only two were illiterate, and lastly, three of them had dynamic grip.

Figure 2.

Circular dendrogram showing major themes, subthemes, and their codes derived from thematic analysis of qualitative data (Source: Self)

Table S5.

Themes and codes generated in the qualitative strand

Theme	Sub-theme	Codes
Individual	Lifestyle Change	De-addiction, Proper Diet, Exercise, Treatment Adherence, Personal Hygiene, & Oral Health Maintenance
	Health Seeking	Regular ART Centre Visit, Watch for Any Warning Signs, Health Facility Visit if Sick, Initial ADR Monitoring
	Precaution	Face Mask Use, Cough Etiquette, Safe Sexual Practices
	Mental & Social Well-being	Peruse Extracurricular Activities, Peer Contact
Family	Initial Family Involvement	Help & Support, v/s Adverse Reaction
	Family Counselling	Universal Testing, Eliminate Fears & Myths, Proper Knowledge
Community	Community Support	Self-Help Groups, Voluntary Organization
	Social Support group	Need-based, Self-driven, & Gender sensitive nature, Interpersonal Communication & Thought Exchange, Emergency Contact & Help
Policy	Education	Sexual & Reproductive Education, Scholarship
	Mainstreaming, Safe Shelters, Employment Opportunities
		Social Security
	Awareness Generation	Targeted: A proper level & intensity, Focused on Non-sexual Routes of Transmission, Treatment Options of HIV, Lives of PLHIV
Institutional	Administrative Action	Multi-sectoral Coordination, HR Development, Supervision
	Integrated Care	Flexible Drug Delivery, Patient Tracking, Outreach Service, One Stop Service
	Patient-Centered Care	Quarterly Visit, Counselling: Lifestyle & ADR, Clear Guidance on Social Security Benefits, Priority Service to TB Patients, Pregnant & Children, Screening for Co-morbidities

Individual level

Participants frequently expressed self-stigma and emotional turmoil post-diagnosis. One participant lamented, “My whole world got crushed in a moment… I even considered dying” (60-year-old man, compliant grip), while another remarked, “My blood is impure!” highlighting internalized stigma. Some choose to self-segregate from family: “I only use my plates, glasses, and utensils because I don’t want my family to get sick.”

Misconceptions regarding ART led some to irregular Health-Seeking Behaviour: “Often due to ART, some hidden diseases got unmasked and patients associated them with ART… thus stopped taking the treatment.” (Nursing officer, 45 years, working for four years).

HCPs emphasized treatment adherence, diet, exercise, and de-addiction, especially from tobacco, as self-care. Activities, like painting and gardening, were encouraged. However, participants noted difficulty early on: “They were too emotionally overwhelmed to do any other things.”

Family level

Families played a dual role—either as sources of support or rejection. One female participant recalled: “My in-laws threw me out after I got sick” (40-year-old, compliant grip), while another found strength in her family: “I fell apart when I received my diagnosis, but my mother and sister provided incredible support.” (24-year-old man, joint family, dynamic grip) SMO in charge of the ART center (38 years, working for five years) opined that educating all family members through counseling and testing created a safer and more supportive home environment.

Institutional level

Participants highlighted the need for flexible and integrated services. “I have to decide between going to my ancestral village for Chat Puja and getting my medicine since the dates coincide.” Home-based drug delivery and outreach tracking by care coordinators were suggested by the participants. Additionally, tailored counselling for vulnerable groups (e.g., TB patients, children, pregnant women) and addressing the system inefficiencies emerged as significant facilitators. “We are working at a lesser capacity… over the period, the number of employees has been reduced.” Issues like technical glitches in social benefit disbursement also emerged: “There was a mismatch of mobile numbers…” (Counselor, 47 years, working for eight years)

Community level

Community acceptance or rejection had strong effects on patient well-being. Stigma often led to eviction and job discrimination: “Villagers of my ancestral home forcefully expelled us…” and “Landlords evicted me twice after they came to know about my disease.” Community Engagement and Peer-led groups were perceived as a crucial support system by the participants.

Policy level

Participants underlined gaps in structural support and public understanding like many reflected on their lack of knowledge in youth: “In my adolescent years I was too naive to understand the importance of using protection.” (30-year-old man, higher secondary passed, compliant grip) and subsequently suggested comprehensive sexuality education as a remedial measure. Last but not least, Persistent misconceptions, particularly regarding modes of transmission and moral judgment, fueled stigma. “People think that only those who visit brothels contract HIV.” (44-year-old man, compliant grip).

Joint display

Qualitative convergent findings explained the similar quantitative findings, but newer qualitative themes and codes remained as divergent findings in the absence of any similar quantitative counterpart. Quantitative findings of significant predictors of dynamic grip over disease, such as literacy, currently married status, not using any substance, and lesser stigma-discrimination, were convergent with the qualitative themes like education, family involvement, lifestyle modifications, and community engagement [Figure 2] to improve the sense of grip or coping, respectively. However, the qualitative findings of policy-level perspectives like administrative initiatives, integrated care, etc., were not similarly elicited in quantitative findings, thus emerging as divergent findings [Figure 3].

Figure 3.

Joint display of quantitative and qualitative findings on ways to enhance grip status among study participants (Source: Self)

DISCUSSION

In our mixed-method study involving 120 adult PLHIV on ART, we found that a notable proportion of individuals living with HIV exhibit a compliant grip over their disease. The causes of our findings are rooted in the various domains of health and strata of society. On an individual level, we found out that a significant number of the participants during their initial days of diagnosis were thrown into mental turmoil, which was further exacerbated by the physical pain of the disease, opportunistic infection, and stigma.[10,19,20] Pulmonary tuberculosis emerged as the most prevalent opportunistic infection in our study, also echoed in studies conducted by Kumarasamy et al. in India and Ngowi et al., and patients with TB were often coincidentally diagnosed with HIV as HIV-TB coinfection.[21,22] This dual burden of diseases takes a toll on their mental and physical well-being. Mostly due to a lack of awareness of HIV, family members, who should be the first line of support in an ideal scenario, started exhibiting discriminatory behavior against the person, further compromising their already broken stature, as also supported by the study conducted by Unnikrishnan et al. in coastal India.[23] In the worst-case scenario, they were forcibly evicted. Alternatively, our findings show that accepting family members can play a valuable source of support during the early stages of diagnosis, which is consistent with the findings of a qualitative study conducted by Li et al. in Yunnan province of China.[24] In numerous instances, the individual found themselves tormented by familial and societal stigma and discrimination, which hindered the development of a dynamic grip over their disease during this critical period. Surviving this phase, however, often led individuals to adapt to living with HIV and its associated stigma, but without wholehearted acceptance. Eventually, after the initiation of ART, predominantly facilitated by the public health system under the National AIDS Control Program (NACP), institutions and policies assumed responsibility for patient care. While the NACP-V adopted a comprehensive approach under the “Sampoorna Suraksha Strategy” encompassing initial counseling and holistic physical and mental care, its implementation needs to be expedited.[25,26] As we found out mandatory universal family testing and counseling, increase in the number of trained human resources, tailored counseling efforts, expanding outreach services, facilitating flexible drug disbursement system, and integrating care for noncommunicable diseases within the ambit of ART centers could substantially improve the individual’s ability to develop dynamic grip over their condition, also stated by both Chakraborty et al. and Tran et al.[27,28] Deterred by societal bias or the fear of it, HIV-affected persons may find solace in forming social support groups of fellow HIV-affected persons. These groups can provide a secure environment for individuals to interact, reducing their mental burdens of grief and anguish, which is a new finding in our study and might be in future incorporated into the program, on a pilot basis for feasibility assessment. At the community and policy levels, targeted awareness campaigns emerged as an essential medium to dispel the stigma associated with HIV, often linked to notions of immorality and sexual misconduct, such as brothels and homosexuality, as echoed in Salam et al.[29,30,31] Specifically educating the younger generation about HIV and its prevention, came out as a way to enhance awareness and collectively improve the SoGoD status of HIV patients in the long run. Although the government has initiated measures to ensure the social security of these marginalized patients, equitable coverage is warranted. Providing safe shelters and employment opportunities for individuals evicted from their families and society would represent a significant stride toward mainstreaming these individuals. Notwithstanding the progress made, HIV remains smeared with societal stigma and taboos, propagated by myths and misinformation. Consequently, ensuring greater representation and visibility of individuals affected by HIV is essential to counter negative attitudes and to create a society conducive to supporting the robust sense of grip of HIV patients over their disease.

Strengths and limitations

It is an explanatory sequential mixed-method study incorporating the essence of both quantitative and qualitative designs. However, it was the first of its kind to implement the relatively new concept of a SoGoD over HIV, as it was mainly built based on chronic noncommunicable diseases. Consequently, this study offers a novel perspective on PLHIV, addressing a relatively unexplored aspect. While the study is conducted within a specific setting, caution should be exercised in extrapolating the results to a community setting, given the potential burden of undiagnosed cases. Additionally, a degree of recall bias may be present, which was challenging to eliminate. Despite efforts to address such limitations, our study acknowledges the presence of unresolved queries and the potential influence of personal biases among participants. To mitigate these concerns, we propose the utilization of focused group discussions as a more fitting qualitative tool. Additionally, we advocate for a follow-up study to directly monitor changes in the SoGoD status over time, offering a more dynamic assessment compared to a single-point evaluation.

CONCLUSION AND RECOMMENDATIONS

A noteworthy segment of PLHIV experiences a compliant grip on their disease status, primarily influenced by the negative impact of stigma and discrimination originating from ignorance and fear surrounding HIV. The intricate interplay of societal moral perspectives within both familial and broader social contexts significantly shapes the SoGoD status of individuals living with HIV. To address this, strategic interventions, such as early family engagement and counseling, comprehensive and adaptable institutional care, robust social support systems, and an inclusive governmental policy framework, focusing on education and health need to be implemented.

Conflicts of interest

There are no conflicts of interest.

Funding Statement

Nil.