Putting episodic disability into context: a qualitative study exploring factors that influence disability experienced by adults living with HIV/AIDS

Background An increasing number of individuals may be living with the health-related consequences of HIV and its associated treatments, a concept we term disability. However, the context in which disability is experienced from the HIV perspective is not well understood. The purpose of this paper is to describe the contextual factors that influence the experiences of disability from the perspective of adults living with HIV. Methods We conducted four focus groups and 15 face-to-face interviews with 38 men and women living with HIV. We asked participants to describe their health-related challenges, the physical, social and psychological areas of their life affected, and the impact of these challenges on their overall health. We also conducted two validity check focus groups with seven returning participants. We analyzed data using grounded theory techniques to develop a conceptual framework of disability for adults living with HIV, called the Episodic Disability Framework. Results Contextual factors that influenced disability were integral to participants' experiences and emerged as a key component of the framework. Extrinsic contextual factors included social support (support from friends, family, partners, pets and community, support from health care services and personnel, and programme and policy support) and stigma. Intrinsic contextual factors included living strategies (seeking social interaction with others, maintaining a sense of control over life and the illness, "blocking HIV out of the mind", and adopting attitudes and beliefs to help manage living with HIV) and personal attributes (gender and aging). These factors may exacerbate or alleviate dimensions of HIV disability. Conclusion This framework is the first to consider the contextual factors that influence experiences of disability from the perspective of adults living with HIV. Extrinsic factors (level of social support and stigma) and intrinsic factors (living strategies and personal attributes) may exacerbate or alleviate episodes of HIV-related disability. These factors offer a broader understanding of the disability experience and may suggest ways to prevent or reduce disability for adults living with HIV.


Background
Since the advent of combination antiretroviral therapy, an increasing number of individuals may be living with disability [1,2], herein defined as the health-related consequences experienced as a result of HIV and its treatments. To fully understand the disability experience, one should consider the context in which these HIV health-related consequences occur, such as a person's physical, social or political environment and his or her personal characteristics, as these may represent possible targets for health interventions or policy changes to prevent or reduce disability. For this study, we defined contextual factors as features that interact with and influence disability experienced by adults living with HIV.
A framework in which to understand the disability context specifically from the perspective of people living with HIV has not previously been developed. Early generic disablement frameworks, such as the Nagi Scheme and International Classification of Impairments, Disabilities and Handicaps (ICIDH), provided insight into factors that shaped the disability experience, but did not explore the detailed role of contextual factors [3][4][5]. More recent frameworks, such as the Handicap Creation Process, Disablement Process and International Classification of Functioning, Disability and Health (ICF), acknowledged the individual and environmental factors that influence disability [6][7][8].
However, we were uncertain whether these frameworks and their contextual factors fully captured the complex disability experience specific to HIV. Understanding the HIV disability experience in the form of a framework is important for adults living with HIV, health providers and policy makers to be able to adequately measure and address the disablement needs of this population.
We developed the Episodic Disability Framework based on the experiences of adults living with HIV [9]. This framework conceptualizes disability as multi-dimensional and episodic in nature, characterized by unpredictable periods of wellness and illness. Disability spans physical, mental, emotional and social life domains. Episodes of disability are described as health-related setbacks that manifest from HIV disease, its treatments or conditions.
The framework consists of three components: 1) dimensions, 2) contextual factors, and 3) triggers of disability. Dimensions of episodic disability include symptoms and/ or impairments, difficulties carrying out day-to-day activities, challenges to social inclusion, and uncertainty that may fluctuate on a daily basis and over the entire course of HIV (Figure 1). Triggers of major or momentous episodes of disability include such life events as receiving an HIV diagnosis, starting or changing antiretroviral medications, experiencing a serious illness, and suffering a loss of others. These components are discussed in detail elsewhere [9].
The purpose of this paper is to describe the second component of this framework, contextual factors that influence disability, which emerged as an integral feature of participants' disability experience.

Methods
We used qualitative methods of inquiry and analysis to seek understanding of the contextual factors that influence disability from the perspective of adults living with HIV [10,11]. We recruited adults living with HIV (18 years and over) who self-identified as having experienced at least one health-related consequence attributed to their HIV illness from a hospital, primary care clinic or AIDS service organization in downtown Toronto, Ontario, Canada. We used theoretical sampling whereby we recruited participants based on emerging themes related to disability [10]. A Community Advisory Committee, comprised of people living with HIV, representatives from AIDS service organizations and the Ontario Ministry of Health and Long Term Care, guided all aspects of this research. St Michael's Hospital and the University of Toronto Research Ethics Boards approved the study protocol.
This research consisted of three phases of inquiry: pilot focus groups, semi-structured face-to-face interviews, and validity check focus groups. We asked participants to characterize their day-to-day health-related challenges living with HIV, and to describe how such challenges affected Dimensions of episodic disability Figure 1 Dimensions of episodic disability. Four dimensions of episodic disability and their sub-components that may be experienced by adults living with HIV.
their physical, social and psychological wellbeing and their overall health. The goal of the pilot focus groups was to guide the sampling strategy and refine the interview guide for the interview phase of the research; these data also contributed to the development of the conceptual framework [12]. After analyzing the pilot focus group transcripts, we conducted face-to-face interviews with new participants to develop the framework, including contextual factors that influence the disability experience. After analysis of the interview data, all interview participants were invited to participate in a final validity check focus group to share preliminary findings and discuss the extent to which the draft framework and its contextual factors represented their experiences. Participants were asked to comment on the contextual factors, their terminology and how they influenced their disability experience.
Interviews and focus group discussions were conducted at three community-based organizations. Field notes were taken throughout, and all discussions were audio-taped and later transcribed verbatim for analysis. Data management was facilitated using N6 Qualitative Software [QSR International Pty. Ltd; 2002]. All participants completed a demographic questionnaire and the HIV Symptom Index [13].

Analysis
We used grounded theory techniques to analyze combined pilot focus group and interview data to develop a framework of disability [14]. We used a systematic set of procedures, which included: coding transcriptions line by line into concepts termed meaning units; grouping similar meaning units into categories; comparing categories with other categories; identifying relationships between categories; and integrating these categories to develop the disability framework [14].
We examined the validity check focus group data for ways to refine the preliminary framework for content, terminology and interrelationships, and to determine whether the identified contextual factors adequately represented participants' experiences.
We used theoretical saturation, constant comparative analysis and validity checks to enhance rigour [15]. Theoretical saturation meant that we recruited participants and collected data until no "new" relevant data emerged. We used a constant comparative analysis whereby data collection and analysis occurred simultaneously, ensuring discussion guides continually evolved so that questions adequately built and strengthened the contextual factors.
Validity checking with the final focus groups involved sharing preliminary results with the participants, and enabling them to confirm, refute or enhance the contextual factors within the framework. Meaning units and categories of three transcripts were also independently assigned by three authors and a colleague with expertise in qualitative research. Authors and the Community Advisory Committee formally reviewed interim data and analytical interpretations six times over the course of 14 months.

Results
Thirty-eight participants took part in one of four pilot focus groups (23 participants) or one of 15 face-to-face interviews (15 participants). Of the pilot focus groups, two included men only, one women only, and the other both men and women. Seven of the interview participants (three men, four women) returned for one of two validity check focus groups. The first validity check focus group included men and women (five participants) and the second included women only (two participants). Characteristics of participants varied in relation to gender, age, ethnocultural background, length of time since HIV diagnosis and antiretroviral use ( Table 1).

Contextual factors of disability
Factors that altered disability were integral to participants' experiences, and emerged as a key component of the Episodic Disability Framework. From these data, we identified four factors that participants described as influencing their disability: social support, stigma, living strategies and personal attributes. We classified these contextual factors as either intrinsic or extrinsic ( Figure 2). Extrinsic factors originated from the external environment, whereas intrinsic factors represented attributes internal to the individual.
Contextual factors could be static (either present or absent), progressive or fluctuate over time. Based on the nature and level of severity, these contextual factors were perceived by participants to influence the episodic nature of disability. We describe each factor and analyze how they influence the dimensions of disability within the Episodic Disability Framework.

Extrinsic factors
Social support Social support was perceived to alleviate disability, whereas a lack of support exacerbated disability and included three main sources: support from friends and family; support from the health care services and personnel; and programme and policy support ( Figure 2).
Practical and emotional support from friends, family, partners, pets and the community eased episodes of disability: Right now I'm working on my mental state. I have wonderful friends who are helping me and a wonder-ful partner now who is trying to keep me inspired ... (Focus Group (FG)-3; Participant 2; man in his 30s) In contrast, a lack or absence of support exacerbated symptoms and/or impairments, such as feelings of loneliness or depression: I'm alone a lot. Unfortunately, I don't have that many friends. I don't have that many people to drop in and visit me. (Interview (INT)-7; man in his 40s) The ability to access health care services and personnel was perceived by participants to reduce episodes of disability. Participants recounted how practical support from personal support workers helped them successfully complete their day-to-day activities, such as cleaning, cooking and doing laundry. Others described emotional support from physicians and other health providers who gave them "light at the end of the tunnel" (INT-3). Many felt confident with their physicians' knowledge and skills, which offered a sense of comfort and assurance, reducing their uncertainty of living with HIV: I am privileged. I have amazing doctors ... They're really compassionate, their bed-side manner, and they're really bright, so they're always on top. And I know they're not going to just let something bad happen to me, they're always on top of my blood work, and looking for the smallest glitch... that's my sense of safety... (INT-10; woman in her 20s) In contrast, participants who perceived that they lacked health care support struggled with day-to-day activities and reported increased stress, anxiety and depression living with HIV: Participants received programme and policy support from a range of public and private insurance and benefit programmes, including the Ontario Disability Support Program, Canada Pension Plan, private insurance plans, and housing and food bank services. While some participants reported having adequate support (e.g., workplace health insurance plans), others struggled to live on a limited and sometimes sporadic income. Low levels of income support reduced participants' ability to engage in financially dependent social activities (e.g., going to the movies with friends) and exacerbated challenges to social inclusion. Participants who lacked supportive workplace health insurance plans described living with heightened uncertainty, worrying what might happen if they had to leave work due to an illness.

Stigma
Stigma emerged as an extrinsic factor that exacerbated participants' experiences of disability ( Figure 2). Stigma was experienced from family, work colleagues, employers and health care providers due to participants' HIV status, sex-ual orientation, ethnocultural background, employment status and/or gender. Stigma commonly exacerbated symptoms and/or impairments (e.g., decreased selfesteem, increased stress, anxiety and depression, and shame and embarrassment) and challenges to social inclusion (e.g., inability to work, and difficulty initiating or maintaining personal relationships): I feel when I'm around certain people or certain ethnicities, I have to hide who I am ... HIV shouldn't define us as people ... We are who we are, but because of the stigma that comes with it ... that's what I've been struggling with. It's being able to overcome that stigma that lies within me, because a woman, a woman with no job, and then being infected ... (FG-4; Participant 7; woman in her 30s) Some participants who were living with HIV for many years felt stigmatized by family members, which exacerbated levels of depression: Some of the family hasn't accepted it... that will bring me a little depressed... (INT-13; man in his 30s)

Intrinsic factors Living strategies
Living strategies was a term designated by participants, which included behaviours, attitudes and beliefs that participants adopted in order to deal with HIV and its resulting disability, including: seeking social interaction with others; maintaining a sense of control over life and the illness; "blocking HIV out of the mind"; and adopting attitudes and beliefs to help manage living with HIV ( Figure  2).
Some participants sought social interaction through new personal and professional relationships to enhance their social inclusion: Others chose not to pay attention to "the numbers" as they might exacerbate episodes of uncertainty. Instead, they were used only "as a guideline" and not taken "too seriously" (INT-15).
In addition to control, participants spoke of using strategies to "block HIV out of the mind" in order to distance themselves from their HIV and alleviate uncertainty, stress, anxiety and depression. Many participants said they actively adopted particular attitudes and beliefs to cope with living with HIV. Participants reported adopting a positive outlook to deal with HIV-related disability. An outlook of hope and optimism alleviated participants from worrying about when their next episode might arise, the severity of that episode and their long term survival living with HIV. They described how they "coped with attitude", knowing episodes will come and go due to the fluctuating nature of the disease and that periods of illness will likely pass over time: "In a couple of weeks, this will be over." (INT-10) During periods of wellness, participants used a positive outlook to maximally engage in daily and social activities: In contrast, others struggled to find a sense of optimism, and acknowledged the detrimental influence that despair and a sense of hopelessness had on their disability: It seems to all be with the attitude. And some people have terrific attitude, and they're so optimistic. And I think they've got half the battle. I've always tended to be a pessimist, and a depressive-anxious sort of type, and that takes a toll on my body. Comparing personal experiences to others living with HIV or chronic illnesses was another strategy used by participants. Some positioned themselves as "better-off" than others to perceive themselves as "healthy" or "healthier" within the broader illness context:

Personal attributes
Another intrinsic factor perceived by participants as influencing their disability related to their personal attributes, non-modifiable characteristics, such as age and co-morbid illnesses inherent to an individual ( Figure 2). For some participants, who had lived with HIV for more than 10 years, the linkage between these characteristics, HIV and disability was unclear. Some indicated that they were uncertain whether their disability was due to HIV, other co-morbid conditions, associated medications, their age, or a combination. Nevertheless, participants suggested that these attributes might exacerbate HIV-related disability, such as symptoms and/or impairments and difficulties carrying out day-to-day activities. Participants expressed concerns that aging and co-morbid conditions introduced uncertainty, particularly among older participants, who had difficulty sorting through the source of their disability and how to best address it.

Discussion
We identified several contextual factors that exacerbate or alleviate the experience of disability, as described by adults living with HIV. Although previous studies in the field of HIV/AIDS identified the importance of such factors for quality of life and wellbeing, we know of no previous study that has described how such factors influence disability. For example, strong social support is associated with lower levels of depression [16], fewer health-related symptoms [17], and better psychological and physical adaptation to HIV [18]. Stable or enhanced support over time has also been linked with higher CD4 counts [19] and viral suppression for those taking combination antiretroviral therapy [20]. Support networks also may reduce uncertainty by helping individuals seek information, provide support or reassurance, ease discussions about uncertain issues, facilitate coping skills, and provide acceptance or validation. They may even encourage individuals to consider uncertainty as a normal aspect of life, or source of opportunity rather than a negative consequence of HIV [21]. Support in the form of vocational rehabilitation may facilitate social inclusion, such as returning to or remaining in the workforce [22], whereas a perceived lack of social support, including a loss of insurance income benefits or workplace discrimination, may be a barrier to returning to work [23]. Additionally, stigma may exacerbate depression for those living with HIV, another symptom or impairment of disability [24].
Some psychological characteristics of HIV are analogous to elements of the Episodic Disability Framework. For example, "coping" is analogous to the concept of "living strategies", a term preferred by participants. Coping is associated with changes in quality of life [25,26], depression and distress [27,28], and physical, social and role functioning among persons living with HIV [29][30][31]. Coping strategies are also associated with enhancing social inclusion by fostering positive personal relationships and social support [32,33]. Greater perceived control over illness (internal locus of control) is analogous to "maintaining sense of control". In contrast to a belief that health outcomes are controlled by others, fate or luck (external locus of control), greater control is associated with positive changes in health-related quality of life [34] and less depression and anxiety about death [35]. To attain this control, some participants adjusted their life expectations and viewed their health positively, developing a new meaningful purpose in life [36,37]. A positive outlook on life and regaining a sense of control may also have implications on enhancing social inclusion by facilitating the transition back into the workforce for those who have left the workforce in the past due to their illness [38].
"Outlook on life" and "faith and spirituality" were specific types of living strategies (attitudes and beliefs) in our framework used to alleviate HIV-related disability. Hope and resiliency are integral to living with an unpredictable illness [39], associated with reduced emotional and psychological distress [40,41], and depression [42,43]. Spirituality is linked with reduced depression [44][45][46], as well as more broadly associated with intrinsic and extrinsic factors, such as effective coping (living) strategies and enhanced social support among people living with HIV [18]. Participants in this and other research used attitudes and beliefs to reduce their uncertainty and stress of living with HIV [47][48][49][50][51][52]. Some even considered themselves healthier or "better off" since their diagnosis [53][54][55].
Finally, the impact of personal attributes, such as co-morbid illnesses, gender, and aging, which were most prominently articulated by participants as influencing their disability, is discussed in the HIV literature. Twenty-nine percent of older adults with HIV experience moderate or severe depression due to decreased supports and access to health and social services [56,57]. However, accessing support is more difficult as these individuals are less likely to disclose their HIV status [58,59], placing them at risk of becoming further isolated and depressed [60]. Also, aging may enhance uncertainty in relation to the origin of symptoms or impairments, particularly those that could emerge from multiple sources [61].

Contextual factors of the Episodic Disability Framework in relation to other frameworks of disability
While we explored disability specific to HIV, contextual factors in the Episodic Disability Framework relate to other existing disablement frameworks and may contribute to the broader understanding of disability. The Nagi Scheme [3,4], and the International Classification of Impairments, Disabilities and Handicaps (ICIDH) [5] do not elaborate on the context in which disablement may be experienced.
The Handicap Creation Process [6,62,63] was the first to consider personal identity and environmental factors that can either be an obstacle or support to an individual's level of function. However, the environmental factors focused solely on handicap at the societal level, neglecting other components of disability. In the Disablement Process [7], extra-individual factors (such as medical care and external supports) and intra-individual factors (such as lifestyle changes, coping and activity accommodations) are analogous to the extrinsic and intrinsic contextual factors discussed in the Episodic Disability Framework. While the Disablement Process classifies these factors as either interventions, exacerbators or pre-disposing factors, the Episodic Disability Framework acknowledges that all factors may exacerbate or alleviate disability depending on the specific context.
The ICF [8] also considers environmental and personal contextual factors, but while environmental factors are thoroughly described [64], personal factors are not classified because of the "large social and cultural variance associated with them" [8]. Variations in personal attributes are prominent within the HIV population with sub-groups spanning a range of cultural backgrounds and age groups. As a result, sub-classifications of individuals based on these factors are commonly reported in HIV research (e.g., men who have sex with men, people who use intravenous drugs, and individuals living with HIV from countries where HIV is endemic). Despite their complexity, their influence on the disability experience is important to consider. In response, the Episodic Disability Framework attempts to further classify these intrinsic factors as personal attributes and living strategies, and describe how differences in these factors might influence disability.

Implications for assessing disability and future research
Our findings suggest that clinicians who are assessing disability with their clients should consider not only the dimensions of disability, but the contextual factors that may influence episodes of disability. Modifiable contextual factors may also represent possible targets for interventions to prevent or reduce disability for adults living with HIV. For example, facilitating access to supportive networks, rehabilitation programmes and services (social support), reducing stigma with education (stigma), and enhancing positive lifestyle changes (living strategies) could help reduce episodes of disability.
Future research that explores how non-modifiable personal attributes, such as aging, influence disability, may indicate age-appropriate interventions that also could be used to indicate ways to prevent or diminish disability for older adults living with HIV.
Finally, while these contextual factors were derived from the HIV-perspective, they may have broader applicability to individuals living with other lifelong illnesses who share a similar episodic disease trajectory. Further research is needed to determine similar and/or unique contextual factors to HIV and how they may or may not differ in the way they influence disability.

Conclusion
Contextual factors within the Episodic Disability Framework offer new considerations about how disability is experienced by adults living with HIV. Extrinsic factors (level of social support and stigma) and intrinsic factors (living strategies and personal attributes) may exacerbate or alleviate episodes of HIV-related disability. These factors provide a broader understanding of the features that shape the disability experience and offer a foundation from which to build strategies to mitigate episodes of disability experienced by adults living with HIV.