Perceptions of functional wellness in women living with HIV in South Carolina, United States: Voices from both patients and providers

Abstract

Functional wellness refers to optimal functioning across multiple domains of health and wellbeing (e.g., physical, psychological, social, spiritual), and posits that wellness goes beyond traditional physical/biological health outcomes to include behavioral and social dimensions of health. Its application could contribute to developing integrated care and improving self-management for HIV patients including women living with HIV (WLH). In order to explore the perceptions of functional wellness from the perspectives of both healthcare providers (HCPs) and WLH, we conducted in-depth interviews among a purposive sample of 20 WLH and 10 HCPs in South Carolina. Most of the WLH were African American, older, living in urban areas and diagnosed over five years ago. The HCPs were dominantly female and non-physicians. Qualitative analysis was guided by the ground theory and conducted using the software NVivo 11. The WLH and HCPs had some common perceptions on wellness. To achieve functional wellness, WLH should be living and functioning in their daily life, be able to take care of themselves and develop resilience, be engaged in social activities, and prevent themselves from comorbidities (e.g. chronic disease, mental health issues) by receiving holistic service in response to the needs of womanhood.

INTRODUCTION

An estimated 1.1 million people in the United States (US) are living with HIV, and approximately one quarter of them are women (Centers for Disease Control Prevention [CDC], 2018). By 2016, there were 18,998 people living HIV in South Carolina (Department of Health and Enviornmental Control, 2017). Based on national statistics, only a quarter of women living with HIV (WLH) in the US are virally suppressed (CDC, 2016). Compared to their male counterparts, WLH may face unique challenges to manage HIV infection and AIDS and to maintain functional wellness (Loutfy et al., 2013; McIntosh & Rosselli, 2012; Meyer, Springer, & Altice, 2011).

Functional wellness refers to optimal functioning across multiple domains of health and wellbeing (e.g., physical, psychological, social, spiritual), and posits that wellness goes beyond traditional physical/biological health outcomes to include behavioral and social dimensions of health (Kiefer, 2008). The concept of functional wellness is grounded in the theoretical models of holistic and integrated care, and most existing functional wellness models focus on multiple dimensions of health and the interrelationship of body, mind and spirit (Simmons, 1989). It highlights empowerment of patients and their ability to utilize internal and external resources to improve their quality of life and adapt to changes caused by disease (McEvoy & Duffy, 2008).

While the concept of functional wellness has been widely accepted and applied in many healthcare fields (Briggs & Shoffner, 2006; McEvoy & Duffy, 2008; McMahon & Fleury, 2012; Myers, Sweeney, & Witmer, 2000; van Roekel et al., 2014), there is a paucity of applications of the concept of functional wellness for WLH. First, there is a lack of consensus among health care providers (HCPs) on what components should be included in wellness (Bezner, 2015; Myers et al., 2000). Second, it is not very clear whether there are some unique functional wellness components for WLH. Third, few studies have investigated the perceptions of functional wellness for WLH from the perspectives of both HCPs and WLH. A lack of concordance of functional wellness between providers and patients can hinder the development of health-related programs and policies that are responsive to the needs of WLH.

The current study aims to address these knowledge gaps by exploring the perceptions of functional wellness for WLH from the perspectives of both WLH and HCPs. We hope to identify some key components of functional wellness for WLH and elaborate the common and different perceptions between WLH and HCPs.

METHODS

The participants included 20 WLH and 10 HCPs in South Carolina (SC). Potential participants were selected via purposive sampling (in which researchers rely on their own judgment in choosing members of population to participate in the study). Eligibility for WLH included 1) living in SC, 2) being a woman who was at least 18 years of age, and 3) having a confirmed diagnosis of HIV or AIDS. Individuals who were unable to respond to an interview due to a disability were excluded from the study. The inclusion criteria for HCPs included 1) at least 18 years of age; and 2) providing HIV-related care and service in SC.

A local AIDS service organization developed a list of potentially eligible WLH in SC, introduced this study to these WLH, and asked WLH who were interested in participation to call the research team. The research team returned the calls to confirm their eligibility and consent them for participation. Potential HCPs were identified through the network of healthcare facilities that provide HIV-related care. All participants provided appropriate written informed consent before participation.

When the interviews were scheduled, the participants selected settings that were most convenient and comfortable for them. All the interviews were conducted in private rooms. With appropriate consent, each interview was recorded. The interviewer asked open-ended questions following an interview guide. A $25 gift card was given to each of the participants at the end of the interviews. The study was approved by the Institutional Review Board of the University of South Carolina.

The interviews were recorded, transcribed verbatim, and de-identified. The data analysis was guided by the grounded theory (Braun & Clarke, 2006) and was conducted using the software NVivo 11. The codebook covered the codes drawn from the interview guides and the new codes emerged during the coding process. Two coders independently coded each transcript based on the codebook. All coding disagreements were discussed and resolved through coordinated discussions. The representative and verbatim quotes were selected to illustrate key findings.

RESULTS

Sample demographic characteristics

The mean age of the WLH was 48.9 years (Table 1). Approximately 65% of them lived in an urban setting. The WLH sample was largely composed of African American or Hispanic women, who made up 85% (n=17) of the sample. Most of the HCPs were female (90%) and had provided HIV-related care and service for at least 5 years (Table 2). The HCPs represented a diverse group of HIV services providers from various facilities.

Table 1.

Demographic Characteristics of WLH participants

		N(total=20)	%
Age (years)	Mean age = 48.5
	18-29	2	10
	30-39	2	10
	40-49	6	30
	50-59	5	25
	60-69	5	25
Race	White	3	15
	Hispanic	2	10
	African American	14	70
	African	1	5
Marriage status	Never married	14	70
	Married	3	15
	Separated	2	10
	Widow	1	5
Number of Children	0-1	6	30
	2-3	8	40
	4 or more	6	30
Transmission mode	Heterosexual	17	85
	Heterosexual (also use drug)	1	5
	Heterosexual (raped by friends)	1	5
	Don’t know	1	5
Time since diagnosis	0-5 years	5	25
	6-10 years	4	20
	11-15 years	3	15
	16-20 years	2	10
	21 or more years	6	30
Housing Community	Urban	13	65
	Rural	6	30
	Both	1	5

Table 2.

Demographic and professional characteristics of HCP participants

ID#	Age	Gender	Types of HCP	Types of organizations	Years of working with PLH	Care to Urban or Rural patients
1	57	F	Nurse Practitioner	Private Clinic	20	Both
2	46	F	Social Worker	Hospital	14	Both
3	31	F	Community Outreach	FQHC	6	Both
4	62	F	Dental Hygienist	Nonprofit Dental Clinic	9	Both
5	38	F	Social Worker	FQHC	15	Both
6	36	M	Social Worker	FQHC	5	Both
7	52	F	Nurse Practitioner	Hospital	25	Both
8	39	F	Nurse Practitioner	Clinic associated with Medical School	6	Both
9	35	F	MD, Infectious Diseases	Clinic associated with Medical School	5	Both
10	45	F	MD, Internal Medicine	FQHC	10	Both

FQHC: Federally Qualified Health Center

Perceptions of functional wellness

In the sections below, we presented unique perceptions on functional wellness from WLH and HCPs, followed by common themes. The illustrative quotes for key themes were presented in Table 3.

Table 3.

Illustrative participants’ quotations

Themes and sub-themes	Quotes (characteristics of the participant)
Unique themes from WLH
Living and functioning	#1: Living. Living right here in my home knowing it’s so peaceful and quiet (65-year old African American WLH). #2: My vision of a good quality of life is living life to the fullest and taking one day at a time. Do not think about so far in the future because sometimes that stresses you out. Just know how to balance. I have your little savings bag but enjoy life and take one day at a time. Worry about the day you’re in, not the day that's coming. (45-year old African American WLH). #3: Functional wellness to me is being functional and taking care of yourself (47-year old African American WLH). #4: No limitation in daily activity: I can keep on doing what I want to do (65-year old White WLH). #5: You can live, and you will live, you just have to believe in yourself (41-year old African American WLH).
Resilience	#1: You have to be happy. There is no reason to be down. Just keep a smile on my face (25-year old African American WLH). #2: Rolling with the punches, going through the struggles, learning the lessons and the experiences along the way, and being um…being observant of other people when they go through stuff (64-year old Hispanic WLH). #3: I know now it’s not a death sentence. I know you live forever if you take care of yourself, if you stay in care and do the right things. It is not a death sentence no more and you can live forever (64-year old Hispanic WLH).
Unique themes from HCPs
Holistic treatment based on womanhood	#1: I have not treated a lot of women with HIV but the one’s that I have encounter we have to deal with a lot of issues. With women, sometimes a lot of things are forgotten once they are positive like their gynecological care. Most of the time women that are diagnosed with HIV are from a single partner home they are the sole provider. We have to look at why they miss their appointment because sometimes it’s that they don’t have a babysitter or the have to work 40-60 hours to make ends meet (Female nurse practitioner). #2: We can’t forget the struggles they face other than their HIV status. HIV is not something that can be neglected. I believe it’s going to take outside resources to assist. If providers could take an extra step to connect with their patient letting them know they care could help. So, they won’t just see them as their providers but also as a person. I think it is our place to let them know that this is a safe place and we are here to assist them with their problem. The best thing is to create a bond with your patients (Female nurse practitioner). #3: It is “a whole-body thing” (Female nurse practitioner). #4: Looking at the person as a whole (male social worker). #5: Patients’ spiritual wellness is important because it [living with HIV] can be overwhelming (Female social worker). #6: I think reassurance. Reinforce that she’s a woman first. We forget about women. They are another area that we do need to focus on because they do have issues. We don’t focus too much on women (Female community health outreach worker)
Common themes from both WLH and HCPs
Prevention	#1: A sense of prevention by identifying risk factors before they become a problem. Doing things to keep yourself well” (Female Nurse Practitioner). #2: A whole new lifestyle” (48-year old White WLH). #3: Staying active and living a healthy lifestyle. I was going to the gym, I was eating healthy, I wasn’t letting things stress me out (53-year old African American WLH).
Self-care	#1: Being the best me that I can be because there’re people out there that need me (41-year old African American WLH) #2: Motivation to take care of my household, keep a stable place to stay, a running car, and live life. Help my family members if I can, and that’s about it. (39-year old African American WLH). #3: The key issue is being able to care for themselves. If they have children, [then], it is to take care of their family, to maintain their pride (Female nurse practitioner). #4: The first thing is accepting not just the HIV, but whatever other issues they have. If you don’t accept your status, you can't move on to the next step, which is the access to care (Female infectious disease physician).
Social engagement	#1: I was able to get married, have a great granddaughter… I just got to see the pictures. Just being here, just staying alive (53-year old African American WLH). #2: I think it is great if I could find a job, and my thing is I can find a job, but I just want to a job that is actually helping people with HIV (64-year old Hispanic WLH). #3: Being able to maintain and be a productive woman living with HIV” (48-year old White WLH). #4: Internally still having the feeling of being useful and not some charity case (Female community outreach worker).

Unique themes from WLH

Living and functioning was highlighted as the basic meaning of wellness for WLH. Some women described living and being able to function through daily activities as functional wellness. They highlighted no limitation in daily activity and ability to keep doing what they hope to do. They also hoped to achieve internal peace without suffering from mental health problems. Some also defined wellness as the willingness to live a meaningful life.

Resilience.

Many WLH, particularly those who have had an HIV diagnosis for a relatively long time, perceived functional wellness as resilience. They believed that they should keep positive mood, overcome struggles and difficulties, and learn lessons through all the experiences. The resilience of the WLH was often rooted in their confidence and belief in the power of self-care and their ability to live a long healthy life despite HIV infection. They believed in medication treatment and knew HIV infection is not a death sentence for them.

Unique themes from HCPs

Holistic treatment based on womanhood.

Most HCPs agreed on the comprehensiveness of functional wellness and suggested using a holistic approach to define wellness. In addition, psychological well-being is important for HIV patients because living with HIV means additional challenges to their lives.

The care services should be integrated to address the issues related to “womanhood”, including gynecological issues, mental health, and domestic violence. Some HCPs said that providers often forget needs of women. They believed that it was their responsibility to let the patients know about the availability of such integrated service.

Common themes

Prevention.

Both HCPs and WLH viewed comorbidity prevention especially chronic disease prevention as a component of functional wellness. Chronic diseases (e.g., cardiovascular disease) had been prominently threating the health and wellness of WLH beyond the HIV infection. HCPs emphasized the importance for WLH to identify the risk factors of these diseases. Some WLH viewed developing and maintaining a new and healthy lifestyle as a key step to functional wellness.

Self-care was also frequently mentioned as a key component of functional wellness. The motivation of self-care could contribute to actively health seeking, and thus facilitate WLH’s access to HIV care service. For many WLH, self-care is driven by the desire of being able to take care of their family and loved others. Some HCPs believed that self-accepting and self-esteem were critical to develop the motivation of self-care.

Social engagement was discussed as a source of life meaning and self-worth in the description of wellness. Some women thought that they should be able to have a family life in order to achieve functional wellness. Some highlighted that functional wellness means having a job and helping others. In all, they defined functional wellness as being productive and being needed by the society.

DISCUSSION

Although the understandings of “functional wellness” by WLH and HCPs were not exactly same due to their different perspectives and experience, the main points were overlapped with a relatively high concordance between them. The common perceptions of functional wellness by WLH and HCPs focused on “living and functioning”, “self-care”, and “resilience” (intrapersonal level); “social engagement” (interpersonal level); and “preventive and holistic service based on womanhood” (structural level).

The concordance between WLH and HCPs on the key components of functional wellness suggests the acceptability and potential feasibility of clinic-based interventions to enhance functional wellness of WLH. For example, both WLH and HCPs addressed the importance of providing integrated services to meet comprehensive and unique health needs of WLH, especially for those who are unable to afford or access primary care.

The findings in the current study need to be cautiously interpreted due to several limitations. First, the WLH in the study were linked to HIV treatment and thus were not representative of WLH who were not receiving HIV treatment. Second, although we tried to recruit a diverse pool of WLH, most of the WLH were African American, older, living in urban areas and diagnosed over five years ago. Some unique issues regarding functional wellness among younger women (e.g., pregnancy and contraception) were not reflected by the WLH in the current study. Similarly, the HCPs in the current study were dominantly female and non-physicians. Finally, the study was conducted in SC and the results may not be generalizable to WLH in other regions.

More empirical studies are needed to test and refine the concepts on functional wellness for WLH. A well-designed qualitative or ethnographic study and appropriate dissemination of the research findings will contribute to the examination of functional wellness for WLH and the development of patient-centered interventions.