Knowledge and Experience of In-Home Virtual Reality for Chronic Pain in Sickle Cell Disease

Abstract

Many adults with sickle cell disease experience chronic, non-vaso-occlusive pain that can benefit from non-pharmacological interventions available for use in the home setting. Virtual reality has been shown to be effective in decreasing pain in chronic pain conditions and may be useful for home-based self-management of chronic pain in sickle cell. However, the literature lacks studies examining this potential. Additionally, the knowledge and experiences of adults with sickle cell who have tried virtual reality for home-based chronic pain management have not yet been reported. This qualitative, descriptive pilot study explored the knowledge and perceptions of virtual reality among adults with sickle cell and their experience with using in-home virtual reality for chronic pain. Nine participants completed demographic questionnaires and an individual interview that was recorded, transcribed verbatim, and analyzed using thematic analysis. Participants were 21 to 38 years of age, and most were female (88.9%) with a medium or high sickle cell disease severity (88.9%) and a chronic pain grade classification of Grade III (high disability-moderately limiting) or Grade IV (high disability-severely limiting) (55.5%). Interview themes, which aligned with the Technology Acceptance Model, were: (1) pain beliefs and self-management; (2) virtual reality as another world; and (3) experience of using in-home virtual reality. Based on preliminary data, virtual reality shows promise as a strategy for non-pharmacological management of chronic pain in adults with sickle cell. However, further investigations are warranted to mitigate the challenges and limitations associated with using virtual reality in this capacity.

Graphical abstract

Introduction

Virtual reality (VR) technology is an effective tool in the management of pain.¹ The technology incorporates computer graphics, body tracking and sensory input devices, visual displays, sounds, and other sensations to create an immersive, virtual environment.¹ By wearing a head-mounted display or headset, people can interact with simulated sights and sounds of a three-dimensional environment. Hypothesized pathways through which VR addresses chronic pain include promoting pain distraction and a focus on more pleasant and engaging stimuli² and cortical re-patterning that produces analgesia.^2,3 VR’s immersive environment also encourages movement, stimulates imagination, provides a sense of control, and reduces pain perception.^2,4 In chronic pain conditions, including complex regional pain syndrome, fibromyalgia, and back pain, VR has successfully resulted in pain reduction.^2–5 However, most VR investigations in chronic pain have been conducted among non-Hispanic White populations in a clinical or laboratory setting,¹ despite the wider potential for in-home use⁶ as a method of delivering evidence-based, behavioral interventions.^7,8 Research is needed to evaluate VR technologies, particularly for home-based chronic pain management, among members of historically marginalized groups who continue to face disparities in pain outcomes and challenges in accessing behavioral pain management strategies,^9,10 such as adults with sickle cell disease.

Sickle cell disease (SCD), the most common inherited blood disorder in the United States (U.S.),¹¹ is a chronic pain condition that primarily affects Black or African American individuals.¹² In addition to sickle cell pain or pain crises, 84% of adults with SCD experience chronic non-vaso-occlusive pain¹³ that is defined as ongoing pain in one or more locations on most days for more than six months.¹⁴ Of these individuals, 65% report pain three or more days per week.¹⁵ In spite of the prevalence and negative physical, psychological, and functional effects of this pain, adults with SCD encounter challenges in obtaining comprehensive care for chronic pain.^9,13 Consequently, self-management at home is essential, especially for 18–40-year-olds who experience a high incidence of chronic pain and chronic pain disability.¹³

VR offers an approach to chronic pain management that can be an accessible and customizable self-management resource for adults with SCD. Also, VR’s ability to reduce pain perception may have an added benefit for individuals with SCD because chronic pain onset is associated with a re-wiring of the brain, resulting in a lower pain perception threshold.¹⁶ Although there are potential benefits of VR for chronic pain in SCD, the literature lacks studies examining this potential. Additionally, the knowledge and experiences of adults with SCD who have tried VR for home-based chronic pain management have not yet been reported. Prior to our work investigating the feasibility¹⁷ and preliminary efficacy of using VR for chronic pain in adults with SCD, this qualitative study was conducted to answer the following research questions. Among adults with SCD: (1) What are their beliefs or attitudes regarding chronic pain and how do these beliefs or attitudes influence self-management of chronic pain? (2) What are their knowledge and perceptions of VR? (3) What is their experience with using in-home VR for chronic pain? Study reporting was guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ).¹⁸

Theory

The Technology Acceptance Model (TAM) is a framework for understanding users’ adoption and use of technology.^19,20 According to the model (Figure 1), an individual’s intent to use and actual use of technology are based on perceptions of the technology’s usefulness and ease of use.¹⁹ These perceptions are mediated by external variables such as individual differences, system characteristics, social influences, and facilitating conditions. In the context of this theory, we sought to understand participants’ knowledge and perceptions of VR and their experience with using VR.

Figure 1.

Technology Acceptance Model¹⁹

Methods

As a secondary study, we exposed adults with SCD and chronic pain to a home-based VR pain management program then conducted individual interviews with them to learn about their beliefs or attitudes regarding chronic pain and how their beliefs or attitudes influence self-management of chronic pain, knowledge and perceptions of VR, and their experience with using VR for self-management of chronic pain. A qualitative, descriptive design was selected for this study to discover, understand, and describe participants’ knowledge and experiences.^21,22 The study was situated in an interpretivist paradigm as we sought to explore participants’ perceptions of VR and experience of using VR through an interactive dialogue between the interviewer and participants to co-construct findings.^23,24 The primary and secondary studies are described in the following section.

Primary Study

After obtaining the University’s Institutional Review Board approval and informed consent, a descriptive, cross-sectional, survey study of 170 adults with SCD was conducted to investigate chronic pain and chronic pain disability.¹³ Between March 2018 and July 2019, participants were recruited from one local, outpatient SCD clinic in the Southeastern U.S. Inclusion criteria were 18–40 years of age, SCD diagnosis, > 3 days of pain experienced each week, and ability to read, write, and understand English. Recruitment methods included SCD clinic visits and study flyers. Enrolled individuals were asked to complete demographic and clinical questionnaires, and surveys that evaluated seven factors associated with chronic pain: chronic pain disability, health literacy, perceived cognitive functioning, pain catastrophizing, chronic pain self-efficacy, chronic pain acceptance, and social support.

Secondary Study

The University’s Institutional Review Board approved this qualitative, descriptive pilot study. Study staff used purposive sampling to recruit individuals, between January 2019 and December 2021, from the pool of participants who were involved in the primary study. A pre-determined purposive sample (n=14) of information-rich cases was selected to fill a matrix consisting of two individuals with a high score and two individuals with a low score for the factors evaluated in the primary study. This approach enabled us to target individuals with diverse experiences who could best contribute to our understanding of the use of in-home VR for chronic pain. Recruitment methods included SCD clinic visits, study flyers, and direct contact with the adults with SCD who were enrolled in the larger survey study. After informed consent was completed in person or remotely, all participants completed demographic questionnaires via study iPad in person or remotely via the web using Research Electronic Data Capture (REDCap),^25,26 and use of a VR program in the home setting. Although all 14 enrollees were targeted for an interview after program use, only nine participated in an individual semi-structured interview. Of the five individuals who did not participate in an interview, one was experiencing health and family issues, one declined the invitation without providing a reason, and three were lost to follow up. Four interviews occurred in person in participants’ homes in 2019, with only the participant and interviewer present. Five occurred via telephone or audio-only Zoom in 2021, during the second year of the COVID-19 pandemic. Participants received gift cards as incentives: $30 after questionnaires, $50 after program use, and $25 after the interview.

Demographic and Clinical Questionnaires

Demographic and clinical questionnaires were utilized to obtain a description of study participants. Before use of the VR program at home, demographic data collected included age, gender, race, ethnicity, SCD type, annual income, years of education, number of chronic pain days, and daily pain rating. The Adult Sickle Cell Quality of Life Measurement Information System’s (ASCQ-Me^®) SCD Medical History Checklist was used to assess SCD-associated health complications, such as leg ulcers and hip or shoulder damage.²⁷ The checklist score is obtained by summing the number of complications, and severity is categorized as low (scores < 2), medium (score of 2), and high (scores > 2). The Chronic Pain Grade Questionnaire was used to measure chronic pain grade based on chronic pain intensity and chronic pain disability.²⁸ Items are scored on a scale from 0 to 10, with total scores for chronic pain intensity and disability ranging from 0 to 100. Using these scores, individuals are grouped into one of five categories: Grade 0, no intensity-no disability; Grade I, low intensity-low disability; Grade II, high intensity-low disability; Grade III, high disability-moderately limiting; and Grade IV, high disability-severely limiting. Questionnaire data were analyzed using IBM SPSS 27. Published protocols were used to score measures and demographic characteristics were presented using descriptive statistics.

Virtual Reality Program

EaseVRx (AppliedVR, AVR; Los Angeles, CA) is an 8-week, skills-based, immersive VR program that is designed for adjunctive treatment of chronic pain in adults.²⁹ This VR program has been shown to safely reduce pain intensity, pain interference, and psychological correlates of pain in chronic pain conditions^1,5 such as chronic lower back pain, fibromyalgia, rheumatoid arthritis, and lupus. EaseVRx combines pain education, pain psychology, biofeedback training for breath control, and relaxation using mindfulness-based stress reduction with distraction through interactive games.²⁹ Proposed mechanisms of action are mastery of behavioral skills for pain coping and enhanced self-efficacy for pain self-management, and treatment effects are associated with didactic and skills-based components of this immersive behavioral therapy.⁵ The program consists of 56 daily modules, ranging from 2–16 minutes (average 6 minutes), which are designed to minimize triggers of digital motion sickness while providing users with many options and opportunities for learning and practicing self-management skills to cope with chronic pain. Study participants utilized a wireless, all-in-one VR headset (Pico G24K headset with AVR breathing amplifier) at home that was pre-loaded with EaseVRx. Also, participants could access the EaseVRx library for additional content, such as interactive games and relaxation videos. Before using the program, participants received a brief device tutorial from study staff, using AVR materials, and AVR’s technical support contact information. Because of the exploratory and descriptive nature of this study, there were no requirements regarding the number of EaseVRx modules that participants should utilize during the period of in-home use.

Interviews and Data Analysis

A semi-structured interview guide was used by the first author (principal investigator, PI) and a research interviewer, who was trained by the PI, to conduct one interview with each participant after they utilized EaseVRx. The PI developed the guide using the chronic pain literature, the TAM, and her previous work regarding self-management of chronic pain among adults with SCD.³⁰ Based on this information, four broad domains of questions were included: pain beliefs and self-management of chronic pain, knowledge and previous use of VR prior to participating in this study, perceptions of VR, and experience of using the VR program during the study. Additionally, applicable items from the Usefulness, Satisfaction, and Ease of use (USE) Questionnaire,³¹ which were framed in the context of the research questions, were incorporated into the interview guide. The USE Questionnaire items are rated on a scale from 1 (strongly disagree) to 7 (strongly agree). Participants’ responses to initial questions guided subsequent questions, and probes were used to obtain details. Interview questions and sample probes from the guide are provided in Table 1. Instead of using data saturation to guide interview sample size, we engaged with participants to facilitate conversations and learn about experiences that were high in information power,³² given the narrow exploratory aims of the study, the specificity of participants’ knowledge and experiences, and the amount of information the sample held for the study. While conducting the interviews, we determined that the data were high in information power because of the types of participants’ experiences, the depth of their experiences, the quality of the interview dialog, and the connection to established theory.³²

Table 1.

Interview Questions/Prompts and Sample Probes

Domains	Questions/Prompts	Sample Probes
Pain beliefs and self-management	1. Do you take care of your chronic pain at home?	a. How do you take care of your chronic pain at home? b. How did you learn these ways to take care of your chronic pain? c. Have you received any formal training in using techniques such as cognitive-behavioral therapy, relaxation, or mindfulness to assist with managing your pain? d. How do you decide which strategy to use to take care of your chronic pain?
Knowledge and previous use of VR	2. What did you know about VR before using the program?	a. Had you seen any VR devices in person? b. Had you used any VR devices? c. Before using the VR program, had you ever used VR to help control your pain?
Perceptions of VR	3. What do you think about VR?	a. Do you like or dislike the idea of using VR?
Experience of using the VR program	4. What did you think about the VR program?	a. Did you encounter any issues or challenges while using it? b. On a scale of 1 (strongly disagree) to 7 (strongly agree): i. How useful do you think the program would be for helping your chronic pain? ii. Is the program easy to use? iii. Would this be a realistic way to help cope with your chronic pain at home? c. How often do you think that you would use the program if available to you?

Interviews were approximately 22–116 minutes in length, and notes were written during and after them to capture the overall impressions and experiences that participants emphasized. The sessions were audio-recorded using an Olympus recorder or Zoom; both automatically assigned sequential numbers to the interviews that were used for de-identification. The audio-recorded sessions were professionally transcribed verbatim.

Once the first two interviews were transcribed, the PI assessed the transcripts for accuracy before conducting an initial analysis concurrently with data collection. The probes for subsequent interviews were revised using emerging study findings. After seven additional interviews were completed and transcribed, the transcripts were assessed for accuracy before conducting thematic analysis.³³ Using this approach, codes and themes were inductively developed from interview transcripts to summarize the data with Microsoft Word and Excel. While the first four transcripts were being analyzed, codes, patterns of codes in the data, and data associated with each code were identified to create an initial code book. After reviewing the initial codes, the remaining transcripts were independently analyzed by two members of the research team and the initial code book was used to document codes and analyses. Findings of the individual analyses were consolidated, and a constant comparative approach³⁴ was used to group and regroup coded data to create categories, then themes. Potential themes were developed according to significant concepts indicated among participants and identified by the research team in the context of TAM-associated constructs of perceptions and use.^19,20 Subsequently, the research team worked to refine and finalize the themes to write the report.³⁵

Rigor and Positionality

The following measures were used to ensure qualitative rigor throughout the study. Interviews were conducted separately by the PI, a researcher with more than 10 years of expertise in interviewing adults with SCD, and a research interviewer who was trained by this researcher. Throughout the interviews, informal member checking was utilized by asking participants to clarify their statements, explain their meaning, and validate our understanding of the data to ensure credibility.^36–39 This practice also aided in maintaining reflexivity and accurately representing participants’ experiences. Additionally, transcripts were evaluated for similarities across participants’ responses and notes were reviewed to glean any insight regarding participants’ experiences. Together, the researchers involved in the study have years of expertise in SCD, pain, self-management, VR, and qualitative methodology. Researchers utilized the analytic approach, and there were discussions to understand team member perspectives and achieve agreement regarding the development of themes. The exploration of varied perspectives and interpretations to understand participants’ experiences was facilitated by the team’s breadth of expertise, and aided in strengthening confirmability.^37,40

Study researchers who conducted data analysis are two female, PhD-prepared, academic nurse scientists, of African descent, who have more than 40 years combined experience with research and clinical activities in the sickle cell community. Prior to study commencement, participants were familiar with one of these researchers (the PI) and her reasons for doing the research because of their involvement in the larger survey study conducted by the PI. The female research interviewer is also of African descent. Although she has sickle cell trait and family members with SCD, she had limited personal knowledge of SCD prior to the study. Identity and positionality of all team members, and the familiarity of participants with the PI, may have influenced the framing of interview questions, participants’ responses, and study findings and conclusions.

Results

Participants’ Demographic, Clinical, and Chronic Pain Characteristics

Participants’ demographic, clinical, and chronic pain characteristics are provided in Tables 2 and 3, respectively. All participants reported experiencing chronic, non-crisis pain or pain on the majority of days for most days, with most participants (77.8%, n=7) reporting pain in more than one body location. On a scale of 1–10, with 1 being the lowest and 10 being the highest, the average daily pain score on those days was 5.3 (range from 4–8).

Table 2.

Participants’ Demographics (N=9)

Measure	Category	n (%)
Age	21–30	3 (33.3%)
	31–38	6 (66.7%)
Gender	Born female/Identify female	6 (66.7%)
	Born male/Identify male	3 (33.3%)
Race	Black or African American	8 (88.9%)
	Other – Moorish American	1 (11.1%)
Ethnicity	Hispanic – no	8 (88.9%)
	Hispanic – yes (Central or South American)	1 (11.1%)
Country of origin	U.S./America	8 (88.9%)
	Kenya	1 (11.1%)
Education	HS graduate	2 (22.2%)
	Some college, no degree	5 (55.5%)
	Associate degree: occupational/technical/vocational program	2 (22.2%)
Employment status	Working, paid or unpaid	2 (22.2%)
	Unemployed, looking for work	2 (22.2%)
	Disabled, permanently or temporarily	3 (33.3%)
	Student	2 (22.2%)
Marital status	Never married (single)	5 (55.5%)
	Domestic partnership/living with partner/committed relationship	2 (22.2%)
	Married	1 (11.1%)
	Separated	1 (11.1%)
Annual income	<$15,000	1 (11.1%)
	$15,000 - $24,999	2 (22.2%)
	$25,000 - $34,999	2 (22.2%)
	$35,000 - $49,999	1 (11.1%)
	Don’t know	3 (33.3%)
Income source	Wages/salary	1 (11.1%)
	Disability	4 (44.4%)
	Social security	2 (22.2%)
	Unknown	2 (22.2%)
Primary caregiver	Self	7 (77.8%)
	Spouse or partner	1 (11.1%)
	Parent or legal guardian	1 (11.1%)
Health insurance coverage	Medicare	4 (44.4%)
	Medicaid	1 (11.1%)
	Private	2 (22.2%)
	No coverage of any type/self-pay (uninsured)	2 (22.2%)

Table 3.

Participants’ Clinical and Chronic Pain Characteristics (N=9)

Measure	Category	n (%)
SCD type	Hemoglobin SS (HbSS)	4 (44.4%)
	Hemoglobin SC (HbSC)	4 (44.4%)
	Unsure	1 (11.1%)
SCD severity	Low (scores < 2)	1 (11.1%)
	Medium (score of 2)	5 (55.5%)
	High (scores > 2)	3 (33.3%)
Informed by a doctor or nurse that they have damage to their hip or shoulder due to SCD	Yes	5 (55.5%)
	No	4 (44.4%)
Take pain medicine daily for SCD	Yes	5 (55.5%)
	No	4 (44.4%)
Chronic pain grade classification	Grade I (low intensity-low disability)	2 (22.2%)
	Grade II (high intensity-low disability)	2 (22.2%)
	Grade III (high disability-moderately limiting)	1 (11.1%)
	Grade IV (high disability-severely limiting)	4 (44.4%)
Average daily pain score	4 or 5 out of 10	5 (55.5%)
	6–8 out of 10	4 (44.4%)
Most common chronic pain locations	Back	6 (66.7%)
	Arms	4 (44.4%)
	Hips	3 (33.3%)
	Legs	3 (33.3%)
Perceived cause of chronic pain (causes identified by participants)	Avascular necrosis	3 (33.3%)
	Don’t know	3 (33.3%)
	Sickle cell	2 (22.2%)
	Stress	1 (11.1%)
Experience stress	Yes	7 (77.8%)
	No	2 (22.2%)
Experience fatigue	Yes	8 (88.9%)
	No	1 (11.1%)

Almost all participants (88.9%, n=8) reported being able to distinguish between a pain crisis and chronic pain, primarily based on how the pain feels (55.5%, n=5). All participants (n=9) reported that chronic pain interferes with or inhibits their daily life. The worst thing about chronic pain was identified as physical limitations (such as the inability to move and change in usual activities), limitations in attainment of goals, pain itself, challenges to mental well-being, and lack of control.

Most participants (66.7%, n=6) reported not currently undergoing treatment specifically for chronic pain. Participants determined their own definition of “treatment for chronic pain”, which included physical therapy or working with a chiropractor, and stated that they were not receiving these services. Of those who reported undergoing treatment for chronic pain, treatment was described as pain medication (22.2%, n=2) and pain management therapy (11.1%, n=1). Before their involvement in this study, only one of the participants had ever used VR and what was used was not an all-in-one headset.

Use of In-home VR

During the period of in-home VR use, participants were able to independently interface with EaseVRx program content and complete program modules. Of the 56 VR modules in the program, participants completed 2–16 modules, with most participants (77.8%, n=7) completing less than 5 modules. Additionally, participants did not use the VR program daily. This minimal level of use occurred because of varying ability to use the program, mainly due to time constraints (35.7%; n=4) and SCD pain crises (7.1%; n=1). However, in addition to using the EaseVRx program modules, some of the participants (33.3%; n=3) used 2–4 modules in the EaseVRx library and one participant (11.1%) used 8 library modules.

Interview Themes

In the following sections, we describe three overarching interview themes: pain beliefs and self-management, VR as another world, and experience of using in-home VR. In this study, a common finding was defined as topics discussed by > 55.5% (n=5) of the participants, and a rare finding was defined as topics discussed by < 22.2% (n=2) of the participants.

Pain Beliefs and Self-Management of Chronic Pain

In response to interview questions that addressed research question one (What are their beliefs or attitudes regarding chronic pain and how do these beliefs or attitudes influence self-management of chronic pain?), participants expressed various pain beliefs and attitudes regarding chronic pain that were primarily associated with management of the pain. Participants discussed being proponents of alternative therapy or lacking interest in natural therapy, identifying and addressing the underlying cause of the pain before the pain worsens, having to take medication to “make it through the chronic pain” (38-year-old male with HbSS), and avoiding medications. Participants reported avoiding medications, primarily opioids, because of not wanting to take medication for the pain (33.3%, n=3), not wanting to be on high doses of medication (11.1%, n=1), or they did not like taking medicine (22.2%, n=2). Some of the participants’ pain beliefs and attitudes were characterized by perseverance (33.3%, n=3), which included not allowing pain to affect quality of life, carrying on despite the pain, and “I can handle that pain...I don’t have to rely on medication” (27-year-old female with HbSC). For other participants (22.2%, n=2), there was a sense of insecurity that was associated with the negative effects of pain on mental well-being and chronic pain limiting attainment of life goals.

For all participants, self-management of chronic pain was influenced by their pain beliefs or attitudes regarding chronic pain. Self-management was also influenced most often by pain severity (55.5%, n=5), awareness of or experience with strategies for addressing the pain (55.5%, n=5), and what worked (66.7%, n=6). Pharmacological and non-pharmacological strategies used by participants for self-management of chronic pain are listed in Table 4. They viewed their experiences with these existing strategies as positive or negative based on the perceived usefulness of the strategy for decreasing chronic pain and the duration of the analgesic effect. Experiences with existing pharmacological pain management strategies were positive for some participants (44.4%, n=4), negative for some (33.3%, n=3), and both positive and negative for others (22.2%, n=2). Negative experiences focused on the side effects of some pain medications (such as nausea or vomiting), not having medication specific to chronic pain so needing to use “sickle cell pain medicine” for chronic pain, and the ineffectiveness of medications in addressing severe chronic pain. Experiences with existing non-pharmacological pain management strategies were positive for most participants (66.7%, n=6) but also negative for many (55.5%, n=5), with both positive and negative experiences for a couple of individuals (22.2%, n=2). Participants viewed their experiences with existing non-pharmacological strategies as negative because of the perceived lack of usefulness of the strategy (33.3%, n=3) or the limited duration of the benefits of the strategy (22.2%, n=2).

Table 4.

Chronic Pain Self-Management Strategies (N=9)

Category	Strategy	Description	n (%)
Nonpharmacological therapy	Cognitive reframing/relaxation	Deep breathing/breathing exercises, massage, meditation, and relaxation	8 (88.9%)
	Distraction	Listening to music or making/writing music, doing arts and crafts, focusing on something else/redirecting thoughts	5 (55.5%)
	Warmth/heat	Heating pad, hot bath, and hot shower	4 (44.4%)
	Cannabis and cannabinoids	Cannabis, cannabidiol (CBD) oil, and tetrahydrocannabinol (THC) oil	4 (44.4%)
	Intake	Cooked canned beets or beet root, beef stew with okra, drinking water, fruits and vegetables, and fish	3 (33.3%)
	Bath products	Epsom salt and essential oils	2 (22.2%)
	Physical activity	Exercise and physical therapy exercises	2 (22.2%)
	Spirituality	Prayer and chanting	2 (22.2%)
Pharmacological therapy	Opioid pain medications	Prescription pain medications such as Tylenol-Codeine #3, Percocet, Hydrocodone, Morphine, and MS Contin	6 (66.7%)
	Non-opioid pain medications	Over the counter or prescription pain medications such as Ibuprofen, Motrin, and Advil	4 (44.4%)
	Over the counter topical creams or analgesics	Icy Hot, Painatrate, analgesic patches, and Voltaren gel	3 (33.3%)

Participants primarily learned ways to take care of their chronic pain through trial and error (66.7%, n=6) and from others who have sickle cell (22.2%, n=2). Most (88.9%, n=8) did not receive any formal training in using techniques such as cognitive-behavioral therapy, relaxation, or mindfulness to assist with managing pain. One participant reported learning meditation from her pain management doctor while another noted that “they [doctors] act like they can’t talk about anything natural” (38-year-old male with HbSS). Most participants (55.5%, n=5) bemoaned a lack of experience with other non-pharmacological strategies for addressing chronic pain. They discussed an inability to access and use alternative strategies, such as yoga and massage, more frequently or at all to benefit from their use. A 34-year-old female with HbSC attributed this inability to financial limitations and described the value of continued use:

“I would go and get more frequent massages and acupuncture. I would join a yoga studio. I would incorporate as many alternative things as possible in order to maintain it. I honestly believe you have to create a lifestyle around those alternative things for them to be effective. You can’t just do it once or twice for it to be effective so if I had the money to incorporate that daily I would.”

Overall, study participants were open to learning about and trying more non-pharmacological methods that could be helpful in addressing chronic pain, including VR.

VR as Another World

In response to interview questions that addressed research question two (What are their knowledge and perceptions of VR?), we found that before using VR in this study, participants had limited knowledge regarding VR and positive opinions of VR. While a few participants (33.3%, n=3) reported having no knowledge of VR, most (66.7%, n=6) reported limited knowledge regarding VR. They reported either having heard about VR on television or from other individuals who have used VR. Among these participants, VR was primarily described as video games. A 34-year-old female with HbSC described VR as “kinda like a video game. It just puts you in another world, in another space. Then depending on the game, you’re just in that world. This virtual world.” Another participant, a 21-year-old female with HbSS, described VR as “something on your face (chuckles) and then it shows you something. You think you’re a part of that reality.” Two individuals expressed being unaware that VR could be used for or helpful for pain management. A 37-year-old female with HbSC noted: “I mean I’d heard of it um, because my brother is a gamer so he’s talked about it, but it’s nothing that I knew could be helpful for pain.”

Thoughts about VR, based on what participants knew, appeared to be more about the novelty of the technology and the enjoyment potential rather than the type and content of the programming one can engage in using VR. So, participants perceived VR to be “different”, “fun”, and “interesting”. However, a 34-year-old female with HbSC expressed that there may be positive and negative aspects of using VR:

“I think it can be good as far as distracting you from certain things that are stressful. Sometimes, life itself is stressful so if you can just go into this other world, but of course anything used too much could be detrimental…I think the only negative aspects is being exposed to it for too long. Umm, I think people would enjoy it and really like it and use it too much umm just like video games and being on Facebook all day, things like that.”

Experience of Using In-home VR

In response to interview questions that addressed research question three (What is their experience with using in-home VR for chronic pain?), participants mentioned the positive influence of VR, the usefulness of VR, and challenges with using VR when discussing their in-home VR use.

Positive influence of VR.

Participants’ pain experience was positively influenced by VR. They reported that the VR program was “relaxing”, “distracting”, “calming”, and “helpful”. The program primarily served as a strategy for placing attention onto a stimulus other than pain and facilitating a state of mind where the focus was less on pain and more on relaxation. A 27-year-old female with HbSC stated:

“With the virtual reality, it’s a relaxation that, um, I mean, one, from the sound itself that it gives you, and also from the visualization of you kind of being elsewhere. So it takes your mind off of the pain in that moment.”

The VR program also contributed to changes in sleep. A 38-year-old male with HbSS described how:

“What I noticed is that any other day that I didn’t use it, I would get home, get a shower and be in the bed, and just would be there, just like thinking about this, thinking about that. Like my mind would be running. I’d be in there, couldn’t go to sleep. Uh, and then when I would use the device, what I notice is that when I would take that device off, and roll over, I was out. Like it would put me out like a light and I would sleep so good the days that I did use it…I really didn’t wanna give it back because it just helped me relax so much, I felt.”

Participants also expressed that they liked the program scenery, colors, and the positive messaging of the content. A 33-year-old male with HbSS mentioned enjoying the program so much that he shared it with his girlfriend who “enjoyed doing it too”.

The usefulness of VR.

Most participants (88.9%, n=8) viewed the VR program as a useful tool that could supplement their current pain management strategies. When participants were asked about the usefulness of the program for helping their chronic pain, using a scale from 1 (strongly disagree) to 7 (strongly agree), the average score was 6.2, with 55.5% (n=5) providing a rating of 6 or 7. They mentioned benefits of the breathing exercises, game options, and virtual environment (including the sounds and the scenery). A 27-year-old female with HbSS stated:

“That was very uplifting and relaxing. Because like the way she was speaking to me, it kinda like, it uplifted me. And then, like the music and the birds and the clouds was very relaxing. Like my mind was getting a massage...Very effective.”

Other participants stated:

“It has really helpful breathing exercises. It would be effective in calming somebody down.” (21-year-old female with HbSS) “I paid more attention to the tree because it looked like it was breathing so I kinda mimicked my breath with the motion of the tree.” (34-year-old female with HbSC)

However, A 38-year-old female with HbSC felt as though the VR program would not be helpful given her existing pain management strategies. She stated:

“Not very useful for me…the activities, when I was doing it, it kinda was like, what I already do. So, it didn’t really change anything for me or help me…the way that ya’ll might have thought.”

Challenges with using VR.

None of the participants reported encountering barriers to using the program and some participants (44.4%, n=4) reported that they did not experience any challenges while using the program. Challenges with actual use of the program included issues with taking the time to do it (22.2%, n=2) and remembering to use it (11.1%, n=1). A 37-yearold female with HbSC mentioned the confluence of time and parental responsibilities while emphasizing the importance of self-management when she stated:

“Um, I think the amount of time that it took though was hard for me, cause as a working mom, I didn’t really have the time that was necessary to probably get the most out of it. Um, because it’s not something that I can just, you know, pull up on my phone or, you know, watch on TV. I had to have a whole set on my head which pulled me away um, from doing things like putting my son to bed. And so I’m not really good at self-care or taking time for myself so that may have been something that I needed to do before I dedicated myself to a program that required me to be in a situation where I had to just sit and be still.”

Two participants (22.2%, n=2) reported experiencing possible symptoms of digital motion sickness while playing one of the interactive games, but the symptoms did not hinder program use. One of these two participants reported: “maybe a little bit of eye strain and you gotta focus more on that one” (21-year-old female with HbSS). The other participant (38-year-old male with HbSS) reported experiencing slight dizziness and noted that after he removed the device for a few minutes, he was “fine” and was able to resume using the program. Other participants reported the headset being heavy (11.1%, n=1) or acute awareness of the headset (11.1%, n=1). A 37-year-old female with HbSC stated:

“Uhm, I like certain aspects of it. Um, but it just was, it was kind of an awkward thing for me (laughs). Um, just being used to having something, um, you know, on my head…It was in a way, helpful, but at the same time, it was a little difficult for me.”

Understanding Participants’ Experiences in the Context of Theory

The experiences of participants in this study align with the TAM,¹⁹ as outlined in Table 5. Overall, participants perceived that VR technology, which almost all employed for the first time in this study, was useful and easy to use. These perceptions were influenced by individual experiences, system characteristics, social influences, and facilitating conditions. Among most participants, responses did not reveal a high degree versus low degree of previous exposure to VR. However, individual experiences with chronic pain interference, pain-related mental health challenges, clinical management of chronic pain, and existing pain management strategies influenced participants’ perception of the benefits and usefulness of VR. While most study participants thought that VR could serve as a distraction from chronic pain that offers various benefits, one participant’s existing pain management strategies, seemingly the overlap of the benefits of those strategies with VR, negatively influenced her perception of VR’s usefulness for helping to address her pain. Additionally, pain beliefs regarding the use of medications contributed to an interest in and desire to seek non-pharmacological methods for pain management, such as VR. Characteristics of the VR system also influenced participants’ perceptions of VR technology. The virtual environment (e.g., scenery, colors, and sounds), program content (e.g., breathing exercises and game options), positive messaging of the content, and the ability to serve as a relaxing distraction from pain enabled participant intention to use the program, actual system use, and benefits for pain reduction.

Table 5.

Alignment of Themes and Participants’ Experiences with the Technology Acceptance Model

Theory Constructs	Interview Themes	Examples of Alignment
External variables	1. Pain beliefs and self-management 3. Experience of using in-home VR	• Chronic pain interference • Experiences (positive and negative) with existing pain management strategies • Ineffectiveness of medications in addressing chronic pain
Perceived usefulness	1. Pain beliefs and self-management 2. VR as another world 3. Experience of using in-home VR	• VR environment and program content • Distraction from pain • Possible supplement to existing pain management strategies
Perceived ease of use	2. VR as another world 3. Experience of using in-home VR	• Navigation of the program • Comfort of the headset • VR Easy to Use responses (1 = strongly disagree to 7 = strongly agree): Average rating = 6.5 n=4 (44.4%) reported a rating of 5–7
Attitude toward using	1. Pain beliefs and self-management 2. VR as another World 3. Experience of using in-home VR	• Positive thoughts about VR • Potential positive and negative aspects of using VR • VR as a Realistic Home-based Chronic Pain Coping Strategy responses (1 = strongly disagree to 7 = strongly agree): Average rating = 6 n=5 (55.5%) reported a rating of 5–7
Behavioral intention to use	1. Pain beliefs and self-management 3. Experience of using in-home VR	• Usefulness of VR • Challenges with using VR • Intent to Use VR if Available responses: n=4 (44.4%) reported that they would use the VR program daily or several times per week
Actual system use	Not applicable	• Module completion (of 56 modules available): Range = 2–16 modules completed n=7 (77.8%) completed < 5 modules

Social factors that were associated with participants’ individual experiences influenced their perceptions of VR technology. These factors included life stressors and the accessibility of pain management strategies. Life stressors, such as being in pain, the inability to attain life goals, and challenges to mental well-being, contributed to perceived benefits of VR for calmness and quieting the mind. Among participants, the awareness of or experience with strategies for addressing chronic pain and the limited availability of those strategies revealed gaps in pain management that led to positive thoughts regarding the promise of VR as a non-pharmacological pain management option. In addition, the VR environment and program content contributed to participants’ assessment of the usefulness of VR for addressing chronic pain. In this study, the in-home convenience of the VR program was a facilitating condition that influenced the perceived usefulness and ease of use of VR. However, varying ability among participants for using the program was negatively influenced by SCD complications (such as pain crises) and time constraints. Although the length of the daily program modules ranges from 2–16 minutes, average of 6 minutes, time constraints were a challenge for some participants. This likely influenced perceived ease of use and usefulness of VR, which may have negatively affected attitudes toward using the program, intention to use the program, and actual program use.

Discussion

As the first qualitative, pilot investigation that provides patient perspectives regarding the use of in-home VR for chronic pain self-management among adults with SCD, this study contributes to the growing literature regarding the use of VR for chronic pain.¹ While preliminary findings suggest that VR may be a helpful tool for some individuals with SCD because of its benefits and availability in the home setting, further research is needed to substantiate the role of VR-based interventions.

Overall, there was minimal use of EaseVRx modules in comparison to the large number of modules available that provide options for learning and practicing self-management skills to cope with chronic pain. In addition to time constraints and SCD crises, VR program usage may be attributed to several reasons. Primarily, study participants were not required to use a prescribed number of modules but had the option of using as many or as few as needed and as they desired. Secondly, participants had the ability to use the EaseVRx library in addition to or instead of the EaseVRx program modules. Lastly, there were no restrictions regarding their continued use of established self-management strategies (pharmacological and nonpharmacological) throughout the study. Therefore, participants may have used those strategies instead of the program modules to address chronic pain. Nonetheless, our study provides information about a range of initial VR usage in a sample of adults with SCD as a starting point for subsequent research. In future studies, researchers should consider including specific participant requirements for program use and a daily pre-VR and post-VR assessment of study outcomes. The findings of these pre-VR and post-VR assessments can then be evaluated in conjunction with usage patterns to better understand usage. These strategies may be beneficial for increasing intervention engagement, evaluating the influence of the intervention on health outcomes, and establishing an optimal VR dose in this population.

In the context of the TAM, perceived usefulness and ease of use did not appear to be barriers to VR use among nearly half of the participants. However, external variables influenced perceptions of usefulness, ease of use, and actual use, with use of the program daily appearing to be a challenge for some participants. Adoption and maintenance of health behaviors, which is essential for improving health outcomes and quality of life in individuals with chronic conditions, continues to be an area of concern in historically underserved populations, largely because of the negative effects of social determinants of health.⁴¹ When developing interventions, there is a need for consideration of time constraints associated with managing life while living with a chronic condition and incorporation of techniques for facilitating continued engagement. Additionally, because this pilot study was conducting while the COVID-19 pandemic persisted, participants may have faced other life challenges with respect to pain and stress that influenced program use. In future studies, researchers can consider implementing potential strategies for improving uptake of VR-based chronic pain self-management interventions, such as (1) collaborating with adults with SCD to determine how these interventions can be better incorporated into their daily lives; (2) increasing knowledge/awareness of these interventions by using various methods of disseminating information; and (3) leveraging social support by incorporating interpersonal networks and social media to influence use of the program.

Approximately half of the study participants conveyed positive experiences with VR, and VR was viewed as a strategy that could supplement their current pain management methods. Potential benefits were associated with pain and pain-related outcomes, such as stress and sleep. Notably, perceived benefits of VR were consistent with participants’ primary use of cognitive reframing/relaxation and distraction as chronic pain self-management strategies. Participants desire to avoid using medications to address chronic pain and use more non-pharmacological strategies supports previous research.³⁰ Regrettably, participants described a lack of awareness of or experience with alternative strategies like VR and a lack of access to those strategies. With increasing popularity, health technology like VR is becoming more readily accessible through health insurance coverage. Therefore, if proven beneficial for adults with SCD in future research, VR interventions have the potential to be implemented into routine SCD care by being prescribed for use or distributed via outpatient clinics and community-based groups.

Pain-related challenges to mental well-being described among adults with SCD in this study supports findings of previous studies.^42,43 The bidirectional interconnection between chronic pain and mental health in SCD is well-established, with chronic pain contributing to depression, anxiety, sleep disturbances, and elevated stress,^44–46 which in turn exacerbate the pain burden.^44,47 These conditions can negatively affect self-management of chronic pain and may have contributed to decreased use of VR in this study, especially given the context of the COVID-19 pandemic. Interestingly, participants’ statements regarding the positive influence of VR were primarily related to characteristics that can be beneficial for mental health, such as being “distracting”, “relaxing”, “calming”, and “uplifting”. This suggests that VR may have the potential for improving mental well-being among adults with SCD, which can help to enhance self-management and social functioning. Further research is needed in this area. Moreover, there is a greater need for clinical assessment and management of mental health issues among adults with SCD in this study that echoes previous studies.^13,30 Carrying on despite the pain may be easier if individuals had more pain coping strategies available in their self-management toolbox to address their chronic pain. Training regarding these strategies, such as those included in the VR program evaluated in this pilot study, may support participants’ internal strengths, and potentially increase perceived usefulness and use of the strategy. However, additional studies are needed to determine the influence of regular VR practice and its potential benefits.

Strengths and Limitations

This pilot study had notable strengths. It involved evaluating an in-home VR pain management program, which was developed for chronic low back pain, as a strategy for addressing chronic non-vaso-occlusive pain among adults with SCD. A qualitative design was employed to directly capture information about participants’ knowledge of VR and experiences with the VR program to inform future implementation efforts. Additionally, to understand real-world use of VR, participants had the autonomy of utilizing the VR program at times that best fit their daily lives and disease management needs.

Study strengths should be considered in the context of the following limitations. This study was conducted using a small purposive sample of adults with SCD from one local, outpatient SCD clinic. Additionally, the sample consisted of a high proportion of female participants, individuals with severe SCD, and those with at least some college education who were currently employed, seeking employment, or were students. Other adults with SCD may have a different chronic pain and disease experience and may not have similar knowledge, perceptions, or experiences of using VR. Because the study sample was relatively homogeneous, individual differences with respect to demographics and the influence of those differences on VR perceptions and use could not be assessed. Larger sample sizes and a more heterogenous sample may be advantageous for evaluating this variable while also representing the population of adults with SCD. Lastly, because this pilot study relied on participants’ self-report, the data may be subject to social desirability bias and challenges with recall. In future studies, it may be useful to discuss data collected from the VR device with study participants to obtain more accurate self-report data.

Conclusions

In this important but preliminary study, we found that approximately half of the participants had a positive experience with using VR and were interested in future use. However, study findings support the need to conduct further evaluations of in-home VR in adults with SCD. Additional studies are needed to identify approaches to address the mental health effects of chronic pain, provide training in pain coping strategies, and increase awareness and facilitate use of VR as an alternative pain management strategy. In this population, future research should mitigate the VR-associated challenges and limitations identified in this study because VR may be a potential, useful chronic pain self-management tool for individuals with SCD.

Highlights.

• Adults with sickle cell in this study had limited knowledge about virtual reality

• Overall experience of using in-home virtual reality for chronic pain was positive

• Use of virtual reality was influenced by external variables

• Adults with sickle cell can benefit from non-pharmacological chronic pain management

• Virtual reality may influence chronic pain outcomes in the home setting

Perspective.

Few evidence-based, non-pharmacological interventions exist for chronic pain in adults with sickle cell disease (SCD). This first qualitative, pilot study of in-home VR for chronic pain in adults with SCD suggests that VR interventions need further exploration as a non-pharmacological strategy for mitigating their pain in the home setting.

Data Availability

The data generated and analyzed during this study are not publicly available because participants did not consent to making their data publicly available. All relevant data are reported within the article.