Factors that Influence Adherence to Highly Active Antiretroviral

Therapy (HAART)Author: Michaela Naicker

2nd UNISA Biennial Conference on Social Behavioural Change towards Sustainable prevention of HIV, STIs

and TB in Africa22-24 May 2013

Rationale for Study

• SA has the largest population of people living with HIV, the largest number of people on ART and the largest public health ART programme in the world.

• KZN province, the epicentre of the SA epidemic has the highest prevalence and incidence rates in the country.

• The majority of HIV infected persons will eventually need ART and near perfect (>95%) sustained adherence is critical for optimal health outcomes.

• Sub-optimal adherence has potentially severe health outcomes which may reduce treatment efficacy, cause drug resistance [compromising available tx options] and increase morbidity and mortality [susceptible to opportunistic infections and cancers]

Research Problem and Objectives

The main objective of this study was to explore the factors that influence adherence to HAART/ART.

The specific objectives were to gather in-depth information about the following factors that influence HIV medication adherence:

• Social and Economic Factors• Health Care Provider and System Related Factors• Condition or HIV Disease Related Factors• Therapy Related Factors, and• Person/Patient Related Factors

Key Questions

• What specific influences might social and economic factors have on adherence to ART?

• What roles do health care providers and the health care system play in facilitating adherence to ART?

• Does the medical condition of the HIV+ve person influence ART adherence?

• Are there specific therapy related factors that might influence adherence?

• What personal factors may influence adherence?

Methodology

• This research is a qualitative descriptive study to explore the factors that influence adherence to HAART among persons who access treatment in the greater Durban area.

• This qualitative study attempts to better understand phenomena, the ‘what’, ‘how’ or ‘why’ questions that relate to factors that influence behaviour to lifesaving medication.

Sampling Technique, Sample Size and Sampling Criteria

• Recruiting a sample willing and eager to share their experiences of adherence posed a real challenge.

• An approach that demonstrated patience and perseverance as

well as an understanding of confidentiality and trust issues enabled a small sample of 13 persons for this study.[HIV infection is still highly stigmatised]

• The non-probability theoretical sampling technique was the method of choice as this afforded the emergence of a rich dense account of the factors that influence adherence. It is a kind of purposive sampling.

Sampling, Sample Size and Sampling Criteria continued

• Eligible participants were over 21, were on treatment for at least 2 years and appeared to be adhering optimally to their medication.

• The 5 male participants accessed ART from their workplace wellness programme and the 8 female participants accessed treatment either using private, semi-private or public health care in the greater Durban metropolis.

Data Collection and Data Analysis

• The In-depth Interview was the data collection method of choice because they combine structure with flexibility, is interactive and allows the use of questions to further explore or clarify responses.

• In-depth interviews of one to one and a half hours were conducted and the data was collected using a combination of tape recording and detailed note taking.

• Data was analysed using thematic content analysis – this involves identifying recurrent or common themes and categorizing information under themes that emerged from the data.

Ethical Considerations• The research posed no harm to the participants and plans for

further counselling was available should the need arise.• Informed consent ensured that the purpose, potential benefits

and risks and the reasons for inclusion were explained to enable informed decision making. Participants were assured that they could withdraw at any stage of the process.

• Participants names were changed to protect their identities and to ensure confidentiality.

Limitations of this Study• The intention of this study was to listen to the individual

experiences of persons on treatment and to gather rich information about their experiences of adherence.

• The sampling method and small sample size means that the results may not be generalised to the larger ART population.

ResultsSocial Support• Social support emerged as a great motivator of adherence

behaviour. The social and emotional support received from close family, friends, and colleagues positively influenced adherence behaviour. “You need a support system … you can’t be on your own …you need people’; ‘My family, my kids make me take my meds, they help me’. Literature supports this finding.

• Persons who accessed workplace, private and semi-private health care were particularly expressive about the supportive relationship they shared with their health care providers. ‘I can open up to him [doctor] …talk man to man … if he is not there I can go talk to her [occupational health nurse]

Socio-Economic Factors• Poverty, transport Cost (to and from clinics) and long travel

distances emerged as stumbling blocks to adherence behaviour.

• Participants also shared that unemployment may lead to depression and this causes persons to miss doses.

• Dependence on the social grant cause persons to default to keep their CD4 <200 (to qualify for the grant).

• Needing someone to take care of children negatively impacted on adherence.

• One participant was aware of people selling stocrin because they needed money for their families.

• These findings are consistent with the literature.

Health Care Provider Factors

• Most participants shared positive experiences with their Service Providers – receiving social, emotional and treatment support for Adherence.

• The public sector attendees were generally satisfied but less expressive about their relationship with their Service Provider.

• The Wellness clinic attendees and those who accessed Private and Semi-Private Health Care were full of praise for the quality of service experienced –spoke highly of the encouragement and support received, and the open and trusting relationship they shared with their service provider’s. These health care providers were described as good listeners who involved the persons in treatment decision making.

“passionate doctor takes longer and shows he is concerned”“ doctor talks to me, he explains things to me , he has an open door policy”

• An area of grave concern mentioned by participants accessing care at Public Clinics and Hospitals was the lack of confidentiality and privacy regarding their HIV treatment [which violates their right to confidentiality and privacy – Patients’ Rights Charter].

“if you are waiting in that queue then you are waiting for ART”• Persons in need of treatment were therefore reluctant to

access treatment at their local clinic or hospital because the community would get to know their HIV positive status.

• Persons would therefore access treatment in another town or clinic far from their home to ensure that no one recognises them. Eg. Person lives in Tongaat but accesses ART miles away in Greytown or Pietermaritzburg.

• Issues about compromising confidentiality were not abundant in the literature.

HIV Disease Related Factors• These factors refer to the symptoms or infections that an individual

may acquire or experience because of a weakening immune system response caused by HIV on the body’s defence cells.

• Most of the participants felt sick, weak, tired and feverish more often than not or they experienced weight loss or had rash which could not be explained.

• Seven participants were diagnosed with opportunistic infections.• The symptoms and opportunistic infections are all indicative of a

weak immune system response.• The above is in accordance with the literature which states that HIV

infection in SA is often diagnosed late, when the CD4 count is well below 200.

• Health outcomes are therefore poorer because Tx starts when the immune system is quite compromised.

Treatment Factors

• All participants experienced side effects to some extent when treatment was initiated.

• Responses to S/E were varied- from experiencing very little S/E for a few days to really struggling with adverse S/E for weeks/months.

• This demonstrates that people react very differently to similar prescribed medication – indicating the importance of individual monitoring, information and education for persons on treatment.

• The benefits of ART far outweigh the risks; ART is well tolerated by the majority of persons on treatment and most side effects are manageable.

‘Patient’/Person Factors than Influence AdherencePositive Attitude and Strong Beliefs about the value of ART• All participants were determined to adhere optimally because they

believed in their tx and wanted to live healthy lives.

Stigma, Secrecy, Discrimination, Disclosure and Denial• Only one participant was completely open about her status.• All others disclosed to at least someone whom they could trust – close

family, friends. Disclosure increases adherence behaviour.• Most shared that hiding to take medication negatively influences

adherence.• Stigma is of the utmost concern because it is both cause and effect of

secrecy and denial – persons claim that they have less stigmatised diseases such as cancer, thus preventing them from accessing life-saving ART.

• Two participants shared that stigma associated with HIV is not as bad as before.

Education and Knowledge about HIV/AIDS

• Participants shared that knowledge and understanding about the importance of taking ART as prescribed enhances adherence behaviour.

Traditional Medicine• All Participants were careful about not using traditional

medicine with ART because of the information and knowledge they received about ART.

• One Participant accessed ART as a last resort because traditional medicine was not helping his illness.

• Participant’s reported that they were aware of people in need of ART who opt for traditional medicine only.

Normalisation of HIV/AIDS• Most of the Participants accepted HIV infection just like any

other illness or disease.• They have an illness, just like any other chronic illness eg.

[diabetes, hypertension].• Participants felt that they can live a normal life if they take

their medication as prescribed.• Normalising HIV/AIDS may be the key to ending stigma, denial

and the shame associated with HIV/AIDS.Motivating Factors –Parenthood and Responsibility• Participants with young families shared that their motivation

for adhering and staying healthy was because of their responsibility as a parent, a provider and a spouse.

• The spoke passionately about their responsibilities and were determined to stay healthy.

Lifestyle Factors• Most Participants led a quiet life with their families and one

participant stated that staying in one place makes taking medication much easier as compared to moving around a lot.

• Most of the Participants lived a healthy lifestyle - eating healthily, exercising.

• Participants also shared that being organised and responsible helped adherence.

Religion and Spirituality• For 3 participants God and their strong religious beliefs

helped them cope with living with HIV and with medication adherence.

Forgetfulness• All Participants shared that at some point in their lives they may

have forgotten to take their medication.• All shared that they knew exactly what to do if they forgot to

take their ART because they understood the consequences of forgetting.

• Some used reminders eg. pocket alarm,TV programme, cell phone.

Self-Efficacy• Self –Efficacy can be described as a person’s belief in his/her

ability to take their medication as prescribed and this positively influences adherence behaviour.

• Most participants alluded to self-efficacy - Bob’s ‘self belief’, Mel’s ‘intrinsic belief’, which is supported by literature.

Health Improvement – Ambiquous

• One person shared that some people on ART take their treatment only when they are ill and then stop taking treatment when they feel well.

• Therefore adherence counselling at this stage of tx is critical if optimal adherence is to be maintained.

• This reiterates the need for ongoing counselling and education throughout the different periods to better understand the challenges that come with lifelong treatment.

Interesting Observations from this study

• Despite the HIV/AIDS Awareness /Know your status campaigns, all the participants accessed ART only when they presented with an opportunistic infections [TB,PCP] or when the disease impacted severely on daily functioning.

• The Workplace attendees alluded to exceptional care at their Wellness clinic – no HIV queue, privacy and confidentiality and supportive caring staff – yet those participants still only accessed Tx when their HIV disease was impacting negatively on their ability to perform their work related tasks or when they presented with an opportunistic infection.

• All participants accessed ART when their CD4 counts were below 100 (which shows that we are still battling to get people to test early and to access treatment early – before immune system compromise).

• Most people are not aware of their Health Care Rights as outlined in the Patients’ Rights Charter.

Conclusion

• Life long sustained perfect[>95%]adherence rates poses a real challenge to persons on ART. Typical adherence rates over prolonged periods of time are in the range 50 -75%.

• The benefits of sustained near perfect adherence are enormous:

- Persons on treatment can live relatively normal long healthy lives.

- Negligible viral load positively contributes to prevention.- Public ART roll-out is not compromised because of decreased

resistance with increase in adherence.- Persons becomes less susceptible to opportunistic infections

and cancers.

• This study recognises the value of the subjective experiences of persons on treatment with regard to their ability to take their medication as prescribed.

• Information gleaned enables a broader and more in-depth understanding of the factors that may influence adherence behaviour.

• Emphasis on the unique subjective experiences may enable greater insight into strategies that enhance adherence behaviour.

.Accessing treatment early – before the immune system is

compromised still poses a challenge that needs to be addressed.

As persons live longer because of ART, ongoing research will need to explore the effects of treatment over time, the effects of treatment at different life stages as well as the ability to sustain high levels of adherence over a lifetime.

Thank you