Allison Kabel1, Nidhi Khosla2, Michelle Teti3. 1. The University of Missouri's School of Health Professions, 511 Clark Hall, Columbia, Missouri 65211, 573-882-5812 phone 573-882-4549 fax. 2. The University of Missouri's School of Health Professions, 502 Clark Hall. 3. The University of Missouri's School of Health Professions, 512 Clark Hall.
Abstract
INTRODUCTION: Companion animals play important roles in the lives of people managing the many symptoms associated with a chronic illness such as HIV. This study explored meaningful examples of pets, particularly dogs, and their place in support networks among women living with AIDS/HIV. METHOD: Data were collected via focus group, as part of a larger Photovoice project. Qualitative analysis discovered three key related themes. RESULTS: Emerging themes included pet as spiritual custodian, pet as unconditional source of support, and pet providing a sense of purpose. DISCUSSION: The comments these participants made about their dogs allowed us to explore culturally embedded notions about animal companionship; the ability to know when one is sick, frightened, emotionally upset, or facing a spiritual crisis. The women.
INTRODUCTION: Companion animals play important roles in the lives of people managing the many symptoms associated with a chronic illness such as HIV. This study explored meaningful examples of pets, particularly dogs, and their place in support networks among women living with AIDS/HIV. METHOD: Data were collected via focus group, as part of a larger Photovoice project. Qualitative analysis discovered three key related themes. RESULTS: Emerging themes included pet as spiritual custodian, pet as unconditional source of support, and pet providing a sense of purpose. DISCUSSION: The comments these participants made about their dogs allowed us to explore culturally embedded notions about animal companionship; the ability to know when one is sick, frightened, emotionally upset, or facing a spiritual crisis. The women.
Living with and managing the many symptoms associated with a chronic illness such as HIV require a strong support network. The roles companion animals play in supporting people living with HIV have been historically overlooked. However, the growing number of studies addressing health-related aspects of pet ownership suggests an increasing sense of importance being placed on the human–animal bond (Siegel, Angulo, Detels, Wesch, & Mullen, 1999; Walsh, 2009; Webel & Higgins, 2012). Much of the current research on the role of companion animals in the lives of people with serious or chronic illnesses and disabilities focuses mainly on animal-assisted therapeutic programs and animals as a means of comfort or spiritual support (Castelli, Hart, & Zagloff, 2001; McCormack, Holder, Wetsel, & Cawthon, 2001; Siegel et al., 1999; Skeath, Fine, & Berger, 2010), the psychosocial aspects of human–animal bonds in general (Graf, 1999; Kreitler, Oppenheim, & Segev-Shoham, 2004; McConnell, Brown, Shoda, Stayton, & Martin, 2011; Ormerod, 2011; Walsh, 2009), and the role of pets among homeless people or people in supported housing (Hunt & Stein, 2007; Slatter, Lloyd, & King, 2012). These findings indicate the growing recognition of animal contributions to human well-being such as psychosocial supports and coping throughout the life course.Several studies have noted the beneficial effects of pet ownership on people's health, especially among vulnerable groups such as the elderly, children, persons with mental illness, and persons with HIV infection (Allen, Kellegrew, & Jaffe, 2000). Pets were noted to provide a source of conversation, to provide a health promoting routine by means of pet care and grooming activities, a reason for undertaking physical activity and a source of love. HIV-related studies have focused on the knowledge, attitudes, and practices of physicians and veterinarians toward pet ownership among HIV-positive persons (Davis, 2008; Hill, Petty, Erwin, & Souza, 2012) and on the effect of pet ownership on people living with HIV/AIDS (PLH/A).In one of the earliest studies on this topic, researchers interviewed 408 people with AIDS in three Florida counties (Conti, 1995). Of these 48% were currently living or had lived with a companion animal in the last 5 years including cats, dogs, birds, reptiles, and rodents. AIDS-defining illnesses were not more common among them compared with nonowners, thus disputing fears of zoonotic transmission. Four respondents reported that they had been told to remove cats from their household but did not do so. Most respondents reported that they felt attached to their pets. One respondent said that instead of giving up a pet, the person would prefer to “give up the doctor” (Conti et al., 1995, p. 1561). This study also noted that pets had been featured in panels of the AIDS quilt, attesting to their importance in the lives of PLH/A.The next study conducted extensive quantitative analyses of the impact of pet ownership on depressive symptoms among 468 gay and bisexual men with HIV or AIDS in the Multicenter AIDS Cohort Study (Siegel et al., 1999). In this study, only 4 of 468 former pet owners cited health concerns as the reason for no longer owning a pet. The rest cited death of their pet or moving. There were no differences between HIV-infected and uninfected participants about being no longer a pet owner. HIV-positive owners were less likely to adopt a pet after their pet died, especially if it was a cat. Pet owners with AIDS were significantly less likely to report being depressed, compared with non–pet owners with AIDS. Among people with three or fewer confidants, pet owners with AIDS were only slightly more depressed than were those without the virus. However, non–pet owners with AIDS were 2.5 times more likely to be depressed than those without pets, indicating that although pet ownership may not directly affect depression, it could be beneficial for men with AIDS and men with few human sources of support.A study of seven HIV-positive men used interviews and observation to understand the experience of pet ownership (Allen et al., 2000). The pets included dogs, cats, birds, horses, frogs, and turtles. The authors claimed that while the experience of pet ownership reported by HIV-positive men was similar to that among HIV-negative men, pet ownership likely provided a buffer to HIV-related stress. Pet owners attested to the emotional component of pet ownership describing pets as companions and as children. Daily routines and responsibilities associated with pet ownership also provided structure and physical exercise and fostered a sense of responsibility to maintain safe housing and avoid becoming homeless while owning a pet. Pet owners also acknowledged the hardship caused by pet care responsibilities on their endurance levels and discussed making provisions of care of their pet in event of their illness. Despite these challenges, the authors concluded that pet ownership could be a therapeutic occupation for HIV-positive people.More recently, three studies described the positive effect of pet ownership on long-term HIV/AIDS survivors. In the first study, a convenience sample of 16 long-term male and female HIV/AIDS survivors were interviewed about factors that helped them manage everyday tasks. Providing unconditional support and diverting attention away from illness were cited as key positive roles of pets. The second study included focus group discussions among 48 women living with HIV/AIDS about the social roles that affected their management of the infection (Webel & Higgins, 2012). Pet ownership was reported by about 10% of women as an important role and was an unanticipated finding. Women reported stress reduction due to love and support from pets as well as caring for them.This literature, albeit small, highlights that pets provide PLH/A with an avenue for love, support, physical activity, and perhaps even social interactions with others, all of which are beneficial to the owners. While some acknowledge the increased demands on their time and energy and there is a small potential for transmission of zoonotic disease, it seems that the benefits outweigh the actual and potential drawbacks of pet ownership. We seek to contribute to the literature by highlighting the beneficial but frequently overlooked impact of pets reported by women living with HIV/AIDS (WLH/A) who participated in a photovoice project called Picturing New Possibilities (PNP). This study explored the support networks of WLH/A and focused on the place of companion animals, particularly dogs, in support networks among WLH/A.
METHODS
Participants
We recruited HIV-positive women to participate in our research project, PNP, from AIDS service organizations (ASOs; clinics, case management organizations) in two Midwestern U.S. cities. We placed flyers in ASOs serving WLH/A. We also met providers to describe the project and encourage them to invite participants. Interested participants contacted the research team to complete an eligibility screening questionnaire. Eligibility included being female, ages 18 to 65, able to speak and understand English, having HIV/AIDS, and agreeing to take and share photographs. We recruited 32 women; two participants were lost to follow-up for illness and unknown reasons. The final sample included 20 women, a sufficient sample size for qualitative data analysis, particularly for photovoice projects in which data include rich details in text and images (Catalani & Minkler, 2010). The majority of the participants were poor (90% earned less than $20,000/year) and African American (81%). Participants’ mean age was 45 years (range 19 to 61), and, on average, they had been living with HIV for 11 years (range 6 months to 17 years). Of the 20 participants, 7 shared stories about dogs as members of their support networks. Project procedures were approved by the authors’ university institutional review board.
Project Procedures
The principal investigator (PI, 3rd author) co-facilitated PNP with assistance from a project assistant. The facilitators delivered the project to women in five separate groups, which ranged from four to eight participants, from November 2009 to November 2011. Each group included three weekly 2-hour meetings. During the first session, the facilitator explained that the purpose of the project was for women to share and address their life experiences, strengths, and challenges through photographs. Together, the participants brainstormed different potential ideas for photographs and discussed the ethics of picture taking. For example, participants discussed situations that they should not photograph and learned how to obtain consent (i.e., a written release) to take pictures of other people. Each participant received a camera to keep. The facilitators showed the women how to use the camera, and the participants practiced taking pictures and performing basic camera functions.During the second and third meetings, the participants reconvened to review and discuss their photographs. The facilitators led these discussions, using a laptop computer to download digital photographs and display them via a projector. The session included individual presentations and group discussions of the photographs. First, each participant presented two to four photographs of her choice to the group and discussed what each photograph meant to her. We facilitated these discussions using a variation of the SHOWeD technique, a well-established technique to guide photovoice discussions (Catalani & Minkler, 2010; Wang & Redwood-Jones, 2001). The SHOWeD process includes a series of five questions designed to help photovoice participants talk about their photographs: What do you See here? What is Happening? How does this relate to Our lives? Why does this problem or strength exist? What can we Do about it? We tailored the questions to focus on HIV by adding or substituting a few additional prompts: What does the photograph capture about HIV? What story does the photograph tell about your life with HIV? How does the photograph capture [a particular challenge or strength] with HIV? After each participant presented and discussed her photographs, the group discussed their reactions to the images. Most of the women (83%) attended all of the sessions. In each city, during the final meeting, the group planned a public showing of the photographs. Each woman signed a release and chose to present some of her photographs at a public HIV community event. The exhibit was optional, but 70% of the women chose to participate in the exhibit.Following the exhibit, the PI conducted 1- to 2-hour individual-level interviews with each participant to explore her experience in the project and how the project affected her and her mental health. Specifically, the questions were designed to capture participants’ reflections about the process. Examples of questions from the interview guide included: “What did you learn about yourself in the project?” “How did you decide what to photograph?” “Describe the experience of watching other people view your photographs.” In addition to receiving the camera, all of the women were compensated monetarily for their time and received $15, $20, and $25, respectively, for attending the discussion groups and $50 for completing the follow-up interview. We digitally recorded each group and individual intervention session to capture data. Participant narrative, or stories and discourse shared in the Photovoice sessions were the units of analysis.
Data Analysis
Guidelines for using strategies of constructivist grounded theory (Charmaz, 2006) guided our analysis of these narratives. Charmaz views grounded theory methods as a set of flexible practices and adapts necessary aspects of the process, without following a rigid prescription of all of the original theory components (Glaser & Strauss, 1967). We used less “positivist” interpretations of this framework. For example, Charmaz (2006) notes that it is important to prioritize the experiences voiced by participants but that it is difficult to conduct analyses without a frame of reference. To that end, we analyzed the data to understand how PNP helped women to address major mental health issues like depression, anxiety, or post-traumatic stress. Yet to remain fully committed to the participants’ experiences, we were also open to understanding different dimensions of mental health from participants’ lived experiences as well as how women defined mental health challenges and solutions in their lives.Project data were rich and included approximately 300 photographs, 15 group session transcripts (35 pages of data per group, on average), and 20 individual interview transcripts (14 pages of data per interview, on average). We transcribed all of the group sessions and interviews verbatim, and edited them only for clarity. We entered the transcripts into Atlas.ti (Scientific Software Development, 2011), a qualitative software analysis package to facilitate data coding. The first and second authors reviewed the transcripts multiple times to become familiar with the data and key themes. Then we created a codebook describing the most salient mental health themes from the participant narratives and conducted a content analysis of the data using two strategies: coding and analytical memos (Charmaz, 2006). Coding matched text to themes and progressed in two stages, open or more general coding, which was followed by selective or more specific coding (Charmaz). We wrote analytical notes throughout all phases of coding to highlight key questions about relationships in the data and to refine codes.We ensured the quality or trustworthiness of our analysis in several ways (Lincoln & Guba, 1985). First, by reviewing the transcripts in detail, we gained sufficient knowledge about the data to perform the analysis. In addition, during data debriefing sessions, the authors discussed coding differences until we reached a sufficient level of agreement about discrepancies.
RESULTS
Three key pet-related themes emerged from these focus group transcripts, including pet as “spiritual custodian,” or something serving as a guardian, looking out for or watching over someone from beyond the tangible realm; pet as unconditional source of support, in this case devotion and absolute loyalty that is not subject to the influences, prejudices, or stigma of the outside community; and pet providing a sense of purpose and feeling meaningful or significant.The first category, pet as spiritual custodian, was exemplified by the following statement from a woman who believed her dog sensed her emotional turmoil and instinctively comforted her:
The “sensing” and “knowing” aspects of spiritual custodianship were repeated with a second participant who shared that her dog protected her family, particularly her son, from an unknown or otherworldly danger:
Another participant in this focus group offered her own interpretation of this event, including the passing away of the dog by adding “His [the dog's] job was done.”That's my heart. You know, he [unintelligible]—you know how they say, when something is wrong with you; animals know it and they help you to get through a lot of things? When I'm down and out, and even to when I'm crying, you know, he—he comes. It's like—like he can sense something wrong with me. And that's my baby.We had a little dog. And the dog wanted to get inside—the dog in the bed, the dog will bark. And he [son] used to sleepwalk and then he used to bust out hollering and crying. I used to ask him, what's wrong and he used to tell me a man in his head making him do things he don't want to do. And if he don't do it, he gets hit. So, I—I didn't too much trust that. So, I had to get him another bed. And ever since I got him another bed, he's been happy. He's been sleeping peacefully. I don't know what it was. I wasn't even questioning it. … the dog died. After the [mattress] was gone.Unconditional support from pets was expressed as an overwhelmingly positive aspect of pet ownership for WLH/A, even among women for whom feeling a bond with an animal was something new:
Unconditional support from a dog in the wake of a stigmatized diagnosis inspired one participant to defend her devotion to the animal among her family and peers:I had never been an animal lover. But, the impact that he [dog] helped me through—he saw, he was there. He couldn't talk about it, but I just felt like—when I would look at his eyes, you know, he would just show me so much care and compassion, about my situation. And, I remember, when I came home and I had got a diagnosis, you know. And, I was just crying. He's like, just looking at me with the funniest look, like, “I know something's wrong. I don't know what it is. But, it's going to be OK.” You know? And, he just looked unconditional, and I just—and, that's all I can think about, when I looked at him. And, then I took his picture cause he's getting older and he's—you know, his years have shown.He's not just a dog. He's a dog with some whole lot of stuff that was putting on. And, I think about it sometimes, God—probably aged because of the impact of my life, you know, that you've had to endure. But, he's been there for me. But, I showed them to people and I showed them—you know, when they saw the one about [dog], and they said, “Why you got the picture of a dog?” You know and, I told them the significance. And, so, they embraced, you know, that part of my life with me.Relationships with dogs were discussed as providing a sense of purpose, usefulness and personal significance for these participants. The following quotes demonstrate the subtle influences of pet ownership on lifestyle choices for WLH/A:
And this example of personal feelings of significance when a pet ‘chose’ her owner:And, I wasn't strong enough at the time to work through that, to the point that I stayed longer than I should have [in an abusive relationship]. But, [dog] was right there. And, I could always count on him. And, so, when I took that picture, a lot of memories about my status, and how far I've come, and making decisions because of him. You know, I wouldn't take a place that I had to downsize my life. My life took a sudden change and I had to make a decision because he was important to me. And, I wouldn't just move anywhere. They had to take [dog], too. So, he's an important part of my life.I found [name] when I was sitting outside [inaudible] apartment over here. She was a little bitty scroungy puppy, but she was soaking wet. She had a little rope around her neck and she kept running around playing and she wouldn't come to nobody but me. I kept saying, come here [name] because of her color. She came to me and after that—I don't even like animals like that, to keep them. I just say she a blessing. Now she's a spoiled little [crosstalk].
DISCUSSION
The examples provided here represented an unanticipated finding from the larger project, and illustrated the roles pets especially dogs played in the lives of women living with HIV. The comments these participants made about their dogs allowed us to explore culturally embedded notions about animal companionship; the ability to know when one is sick, frightened, emotionally upset, or facing a spiritual or paranormal crisis. The women also shared the importance of unconditional, nonjudgmental support in the wake of a stigmatized diagnosis, and the unique ways pets provided a sense of purpose; having something to look after and nurture.
Animal as Spiritual Custodian
Discussing companion animals, in these cases dogs, as spiritual custodians was an acknowledgment of the shared belief that pets somehow seemed to be aware when their human companions required support and warned them when they faced danger. This belief was consistent with the existing literature on the role of pets as providers of comfort and spiritual support (Castelli et al., 2001; McCormack et al., 2001; Siegel et al., 1999; Skeath et al., 2010). Dogs were portrayed through these examples as recognizing when something was wrong, when someone was sick or upset, and detected potential threats to the household; including unseen threats of a paranormal or other-worldly nature. In the first example, the participant discussed how her dog anticipated her emotional needs, and she made reference to the belief that animals have these extra-perceptive abilities. In making this reference, which went unchallenged in the group discussion, she revealed her own assumptions about the accepted nature of this belief among the other participants.The second example further extended the idea of animal as spiritual custodian, by introducing the notion of animals knowing the “unknowable.” This example of a family pet detecting some type of mysterious danger embodied in a mattress, and passing away once the mattress was removed from the house and destroyed, appeared to be accepted by the group and also went unchallenged. At least two other participants engaged the speaker, suggesting that the dog passed away after the incident because “His job was done,” reinforcing the interpretation of the story.
Unconditional, Nonjudgmental Support in the Wake of a Stigmatized Diagnosis
There were numerous examples in the group discussions and interviews, which reflect the current literature of pets offering emotional support to their owners (Castelli et al., 2001; McConnell et al., 2011). The examples provided here illustrate the role of the pet as a silent witness to the difficult times, pain, fear, and harsh realities of living with a stigmatized illness. The first example [in this category] starts with a disclaimer warning the listener that she “ … had never been an animal lover,” setting up the story of how one particular dog made such a profound impact on her life. The photograph of the dog in question emerged as a moment of reflection, allowing the participant to contrast her dog's appearance in the photograph, to how he looked at the time of data collection. She was forced to acknowledge the advancement of time and duration of her pet's companionship in the wake of a stigmatized diagnosis. Her pet was “there” for her, offering support, not judging her. In the second case, the participant displayed an image of her dog in the group discussion and was somewhat defensive about her choice of image. In a separate interview, this participant reminisced about her experiences of sharing the photograph and why she stood firm on her assertion that her dog was the most consistent source of unconditional support, starting when she was newly diagnosed with HIV. She stated that the people in her life listened to her explanation and were ultimately satisfied with her reasons for the displaying the image.
Providing a Sense of Purpose
In the first “sense of purpose” example, we learn of the participant's background with troubled relationships and self-doubt. She credits the bond with her dog for helping her endure multiple hardships and for inspiring her to make better life choices. With the responsibility of caring for the pet, she couldn't “just move anywhere” because she had the dog to consider. Feeling responsible for her canine companion gave a sense of purpose and positively influenced her decision-making. The last example provides a second “disclaimer” about not being a person who would routinely keep and care for a pet, just before declaring the dog to be “a blessing.” The insistence on “not being a dogperson” was fascinating considering the depth of emotion conveyed for this particular animal. The responsibility of caring for a puppy found outside, dirty and wet, fostered a sense of purpose in this participant, as reflected in the way she shared that the puppy would only respond to her calls, as if to say the animal chose her, despite the fact that she didn't “… even like animals like that.”Our findings support other studies that have noted the beneficial impact of pet ownership on the well-being of PLH/A (Dembicki & Anderson, 1996; Hunt & Stein, 2007; Siegel et al., 1999). Studies that explicitly sought to investigate the role of pets, as well as studies in which the role of pets emerged spontaneously (Webel & Higgins, 2012), show that pets can be a source of support and provide a sense of purpose to owners. Our study had several limitations. Our sample was predominantly African American and female, and the groups and interviews were not supplemented by actual observations, thus limiting generalizability of our findings. Further, we did not explicitly include questions on pet ownership in the interview that might have revealed more data on the effects of pet ownership.
Implications
Pets played significant roles in the lives of these women, by providing coping and support in the wake of stigmatized illness. These data emphasized the contributions made by animals to overall human well-being and indicated a companion status achieved by these animals, although that status is not readily legitimized by the mental health establishment or other health-related programs and policies, such as Food Stamps, SNAP programs, or homeless shelters (Walsh, 2009).Our study has implications for both practice and research. In terms of practice, organizations that offer support to HIV-positive people may reflect on whether their policies unintentionally or otherwise discriminate against pet owners, in terms of housing support. They may also consider making their clients aware of the beneficial impacts of pet ownership and helping clients keep and care for pets. For instance, an AIDS Service Organization (ASO) in St. Louis operates a program called Pets Are Wonderful Support (PAWS) that provides pet food and medications and foster pet care for PLH/A. Our findings suggest that programs like this, as well as pet-assisted therapy programs, may be integral to maintaining quality of life among PLH/A (St. Louis Effort for AIDS, 2009). Second, physicians as well as veterinarians may wish to inquire if their HIV-positive clients may have misconceptions about pet ownership and clarify them (Davis, 2008). Research has shown that the potential for transmission of infections from animals to HIV positive owners is low (Conti et al., 1995), and this needs to be more widely disseminated. Future research should include questions about pet ownership when investigating the challenges and sources of support for HIV-positive people, since social support is an extremely important resource and outcome among PLH/A. Research is necessary to explore how pet ownership fulfills these needs and roles.
Authors: Ana Maria Barcelos; Niko Kargas; John Maltby; Sophie Hall; Phil Assheton; Daniel S Mills Journal: Int J Environ Res Public Health Date: 2021-11-25 Impact factor: 3.390