Feasibility of In-Home Virtual Reality for Chronic Pain in Sickle Cell Disease.

PURPOSE: This study assessed the feasibility of an in-home virtual reality intervention for chronic pain in adults with sickle cell disease. DESIGN: Two-group, parallel, randomized, multiple methods design with surveys, and interviews. METHODS: Participants were randomized to virtual reality or audio control, with 2-16-minute daily modules for 8 weeks, a daily pain diary survey, and a post study interview. Chronic pain and pain correlates were evaluated at baseline and every 4 weeks for 3 months. Feasibility outcomes were participant enrollment (set at > 50%), questionnaire response (> 50%), intervention use, and cybersickness (< 20%). RESULTS: Of the individuals approached, 67.8% (n = 19) were enrolled. Questionnaire response rates were 100% at baseline, 57.8% at week 4, and < 50% at weeks 8 and 12. The intervention was used for a median of 781 minutes and 210 minutes in the virtual reality and audio groups, respectively. Participants reported slight symptoms of cybersickness with no reports of severe symptoms, and the intervention was acceptable. CONCLUSIONS: Home-based virtual reality can be used in future sickle cell disease research. To further strengthen evaluations of virtual reality in adults with sickle cell who experience chronic pain, future trials should address sample size limitations and incorporate recommended strategies to address cybersickness and questionnaire response. CLINICAL IMPLICATIONS: The first known application of in-home virtual reality for chronic pain in adults with sickle cell disease was successful. Findings can inform future in-home investigations of virtual reality in this underserved population.

The management of chronic pain in sickle cell disease: an interview with Nadine Matthie.

Nadine Matthie, PhD, RN, CNL is an Assistant Professor in the Nell Hodgson Woodruff School of Nursing at Emory University in Atlanta, GA, USA. As a nurse scientist, she has conducted behavioral research to investigate pain and self-management in adults living with sickle cell disease, and address chronic, non vaso-occlusive pain in this population. Dr Matthie is developing non pharmacological, patient-centered, self-management strategies that incorporate virtual reality and biopsychosocial approaches to help manage chronic pain and reduce the burden of sickle cell; thereby, facilitating new, personalized approaches to management of chronic pain conditions in the home setting. Her research has been published in several national and international peer-reviewed sources for various disciplines, including nursing, medicine, music therapy and psychology.

Use and efficacy of virtual, augmented, or mixed reality technology for chronic pain: a systematic review.

Aim: Characterize use and efficacy/effectiveness of virtual, augmented, or mixed reality (VR/AR/MR) technology as non-pharmacological therapy for chronic pain. Methods: Systematic search of 12 databases to identify empirical studies, of individuals who experience chronic pain or illness involving chronic pain, published between 1990 and 2021. JBI Critical Appraisal Checklists assessed study bias and a narrative synthesis was provided. Results: 46 studies, investigating a total of 1456 participants and including 19 randomized controlled trials (RCT), were reviewed. VR/AR/MR was associated with improved pain-related outcomes in 78% of the RCTs. Conclusion: While most studies showed effects immediately or up to one month post treatment, RCTs are needed to further evaluate VR/AR/MR, establish long-term benefits, and assess accessibility, especially among individuals who experience pain management disparities.

Virtual, augmented and mixed reality (VR/AR/MR) are technologies that can be used to manage chronic pain. The use and effectiveness of VR/AR/MR were examined during a review of 46 research studies, which included 1456 participants and 19 randomized controlled trials (RCTs). In 78% of the RCTs, VR/AR/MR improved pain or pain-related outcomes. While most studies showed a benefit on pain immediately or up to 1 month after treatment, more research is needed to assess the long-term benefits of VR/AR/MR on pain and understand how these technologies provide pain relief in the body. Additionally, the accessibility and cost­effectiveness of VR/AR/MR must be evaluated. These areas for future research must consider individuals who experience disparities in the treatment of chronic pain.

"Into the Lion's Den": COVID-19 Experiences of Black Adults with Sickle Cell Disease.

Adults living with sickle cell disease are at risk for experiencing severe illness from coronavirus disease 2019 (COVID-19) due to the complexity of their disease. Additionally, self-management and navigating the healthcare system may be challenging during the COVID-19 pandemic. Therefore, we conducted telephone interviews with 25 participants to explore the experiences of Black adults living with sickle cell disease during the early months of the pandemic in the United States. Three overarching themes characterize their experiences: management of sickle cell disease was further complicated by the pandemic, fear of the virus contributed to physical and social isolation, and employment and financial challenges affected well-being. The pandemic contributed to changes in health care maintenance and had a disproportionate impact on this population. Addressing social and structural determinants of health and disruptions in health care accessibility is critical to advancing health and health care equity for individuals living with sickle cell disease.

Social and Psychological Factors Associated With Health Care Transition for Young Adults Living With Sickle Cell Disease.

Introduction: Due to advances in disease management, mortality rates in children with sickle cell disease (SCD) have decreased. However, mortality rates for young adults (YA) increased, and understanding of social and psychological factors is critical. The aim of this study was to explore factors associated with health care transition experiences for YA with SCD. Method: This was a qualitative descriptive study. A 45-minute semistructured interview was conducted with 13 YA (M = 21.5 years, SD = 1.73). Results: Results suggest that social and psychological factors and self-management experiences influence health care transition. Eight themes emerged: "need for accessible support"; "early assistance with goal setting"; "incongruence among expectations, experiences, and preparation"; "spiritual distress"; "stigma"; "need for collaboration"; "appreciation for caring providers"; and "feeling isolated." Discussion: Consideration of cultural contexts will guide nurses in supporting health care transition. Designing culturally relevant interventions that address unique needs for YA living with SCD is warranted.

Prevalence and predictors of chronic pain intensity and disability among adults with sickle cell disease.

Among 170 adults with sickle cell disease, we evaluated chronic pain impact and disability prevalence, assessed age and gender differences, and identified psychosocial predictors of chronic pain intensity and disability. Most participants had a high level of disability. Chronic pain intensity and disability were significantly associated with pain catastrophizing and chronic pain self-efficacy, and worsened with age. Further research is needed to confirm study findings and develop interventions, including palliative care approaches that address catastrophizing and disability, particularly for young women and middle-aged adults with sickle cell disease. Moreover, consistent clinical assessment of chronic pain and psychosocial health should be implemented.

Intergenerational Influences on Faith-based Strategies Used in Response to Racial Discrimination Among Young African American Adults.

OBJECTIVE: In this report, we used a qualitative descriptive design to explore young African American adults' intergenerationally influenced strategies to experienced racial discrimination. METHODS: The study was guided by a qualitative descriptive design using criterion and snowball sampling, and semi-structured interview questions. We also explored, quantitatively, gender differences among the racial discrimination experiences encountered and the strategies used. FINDINGS: Forty-nine participants included in this report were an average age of 29.5 (SD = 10.1). Racial discrimination experiences included daily microaggressions such as insensitive comments, stereotyping, exclusion from work and school activities, perceived low expectations, inequities in employment, and police profiling. Intergenerationally influenced strategies used in response to these experiences included religious beliefs and practices, positive reframing, and modeling behaviors used by previous generations. These intergenerationally influenced strategies enabled participants to remain calm, to express goodwill toward others, and to be patient and hopeful for a better future. CONCLUSION: Since intergenerationally influenced strategies are likely potential sources of strength and resilience for young African Americans, knowledge of these strategies might be useful to health care practitioners seeking to improve the mental health care of this population.

A Qualitative Study of Chronic Pain and Self-Management in Adults with Sickle Cell Disease.

Acute, intermittent vaso-occlusive pain is the hallmark of sickle cell disease (SCD) and is associated with substantial morbidity and impaired quality of life (QOL). The subgroup of adults with SCD who transition from recurrent, acute pain to chronic, persistent pain have even greater QOL impairment and higher rates of healthcare utilization. Self-management is central to SCD management; however, its role in chronic pain management is not established. This qualitative study was conducted to answer the following research questions: (1) What is the chronic pain experience of adults with SCD? (2) What self-management strategies do adults with SCD use for chronic pain? and (3) Do adults with SCD have any needs in the self-management of chronic pain? Eighteen Black adults with SCD completed a demographics questionnaire and an interview. The majority of the participants were 21-30 years of age (mean 33.5, SD 7.6), female (61.1%), employed at least part-time (61.1%), single/never married (72.2%), and had a SCD type of sickle cell anemia (55.5%). Interview analysis revealed three major themes: (1) the chronic pain experience; (2) strategies for managing chronic pain; and (3) challenges and needs in managing chronic pain. Study findings can be used to support chronic pain management among adults with SCD. Further research is needed to devise and implement effective strategies for the prevention and management of chronic SCD pain.

The Effects of a Single Electronic Music Improvisation Session on the Pain of Adults with Sickle Cell Disease: A Mixed Methods Pilot Study.

BACKGROUND: Adults with sickle cell disease (SCD) experience acute pain that is multidimensional. Despite recent improvements in treatment, pain management remains a significant challenge for these individuals. Music therapy interventions have the potential to address several dimensions of SCD pain, but they require systematic investigation. OBJECTIVE: This study investigated feasibility and preliminary efficacy of a single-session electronic music improvisation with a music therapist to diminish pain intensity and improve pain relief and mood in adults with SCD. METHODS: Using a three-group mixed methods intervention design, we randomized 60 adults with SCD to standard care plus one of three 20-minute study conditions: 1) electronic music improvisation with a music therapist (MT); 2) recorded music listening (ML); or 3) no intervention (control). Measures of pain intensity (VASPI), pain relief (VASPR), and mood (VASMOOD) were assessed before and after the study conditions, with a subset of MT and ML participants interviewed after measure completion. RESULTS: Compared to control, MT produced significant improvements in VASPI (odds ratio (OR) = 5.12, P = 0.035) and VASMOOD (OR = 11.60, P = 0.005). ML produced significant improvements in VASMOOD compared to control (OR = 5.76, P = 0.040). Qualitatively, there were two prominent themes directly related to music: 1) ML and MT offered many positive and few negative effects; and 2) music therapists provided comfort beyond the music. CONCLUSIONS: Preliminary findings were promising and support the need for additional studies evaluating improvisational music therapy interventions for acute pain management in adults with SCD.

African Americans, African Immigrants, and Afro-Caribbeans Differ in Social Determinants of Hypertension and Diabetes: Evidence from the National Health Interview Survey.

In the United States (U.S.), Blacks have higher morbidity and mortality from cardiovascular disease (CVD) than other racial groups. The Black racial group includes African Americans (AAs), African immigrants (AIs), and Afro-Caribbeans (ACs); however, little research examines how social determinants differentially influence CVD risk factors in each ethnic subgroup. We analyzed the 2010-2014 National Health Interview Survey, a cross-sectional, nationally representative survey of non-institutionalized civilians. We included 40,838 Blacks: 36,881 AAs, 1660 AIs, and 2297 ACs. Age- and sex-adjusted hypertension prevalence was 37, 22, and 21% in AAs, ACs, and AIs, respectively. Age- and sex-adjusted diabetes prevalence was 12, 10, and 7% in AAs, ACs, and AIs, respectively. In the multivariable logistic regression analyses, social determinants of hypertension and diabetes differed by ethnicity. Higher income was associated with lower odds of hypertension in AAs (aOR 0.86, 95% CI 0.77-0.96) and ACs (aOR 0.55, 95% CI 0.37-0.83). In AAs, those with some college education (aOR 0.79, 95% CI 0.68-0.92) and college graduates (aOR 0.62, 95% CI 0.53-0.73) had lower odds of hypertension than those with < high school education. In AIs, having health insurance was associated with higher odds of hypertension (aOR 1.59, 95% CI 1.04-2.42) and diabetes (aOR 3.22, 95% CI 1.29-8.04) diagnoses. We observed that the social determinants associated with hypertension and diabetes differed by ethnicity. Socioeconomic factors of health insurance and income were associated with a disparate prevalence of hypertension by ethnic group. Future research among Blacks should stratify by ethnicity to adequately address the contributors to health disparities.

Understanding the Self-Management Practices of Young Adults with Sickle Cell Disease.

Because self-management is central to sickle cell disease (SCD) management, this descriptive study of 18 young adults with SCD, ages 19-39, was conducted to understand their pain experience and to identify the specific home activities they use for pain prevention and management prior to care-seeking. Participants completed two baseline surveys and one semi-structured, individual interview. Content analysis of the interview transcripts yielded two themes: difficulty in describing pain and living with pain. Participants used pharmacological and non-pharmacological strategies to alleviate pain and avoid disease complications but report barriers to using these strategies. Healthcare providers should use study findings to provide appropriate care to and improve pain outcomes for young adults with SCD. In addition, interventions aimed at addressing barriers and optimizing self-management are needed.

Perceptions of young adults with sickle cell disease concerning their disease experience.

AIM: To describe the perceptions of young adults with sickle cell disease concerning their disease experience. BACKGROUND: Sickle cell disease is a lifelong, genetic condition with both acute and chronic painful exacerbations. Little is known of the experiences of young adults with sickle cell disease. DESIGN: This study used a qualitative, descriptive design with semi-structured, life review interviews. METHODS: Between August 2010-September 2012, purposive sampling was used to recruit participants with a known sickle cell disease diagnosis who were ages 18-35 years, were being seen in an outpatient sickle cell clinic and were English speaking. Participants provided demographic information and responded to two interviews. A content analysis was then used to interpret participants' narratives of their experiences of living with sickle cell disease. RESULTS/FINDINGS: A sample of 29 young adults with sickle cell disease consisted of 79·3% females, 35·6% employed full-time or part-time, 71·6% single/never married and 57·8% with sickle cell anaemia. Their mean age was 25·8 with 13·2 years of education. Four major interview themes were identified: (1) struggles to maintain or achieve good quality of life or life satisfactions; (2) strategies to maintain self-care; (3) interruptions to family, work and social roles; and (4) difficulties accessing needed health care. CONCLUSION: Young adults face many challenges while living with sickle cell disease. With a better understanding of their disease experience and how it influences their quality of life, researchers can begin tailoring appropriate interventions to improve health outcomes in this vulnerable, minority population.

Sickle cell disease in adults: developing an appropriate care plan.

BACKGROUND: Sickle cell disease (SCD) is primarily characterized by pain. This chronic pain with acute exacerbations is the most common reason for hospital visits, admissions, and readmissions, particularly in young adults (aged 18­39 years). People who present to the hospital for pain crises often report that nurses lack knowledge of SCD and, consequently, they do not provide appropriate, timely care. OBJECTIVES: Because pain episodes often result in hospital admissions, this article highlights prominent issues that staff nurses need to know. METHODS: Using a review of the literature and case studies, the authors provide recommendations to improve care of adults with SCD. FINDINGS: No objective signs of a sickle cell pain crisis exist. Patients react to pain in different ways and use various coping mechanisms in response. Suspected opioid addiction should not affect the provision of nursing care. Pain must be treated appropriately to decrease the potential for prolonged admissions and/or readmissions. Patients are to be acknowledged as experts and collaborated with in developing an appropriate plan of care. Advocacy on behalf of the patient is important for better communication with providers. With this knowledge, nurses will be better equipped to provide the appropriate and timely care required to manage pain crises experienced by individuals living with SCD.

Breathing Exercises for Inpatients with Sickle Cell Disease.

Sickle cell disease (SCD) is a painful condition wherein breathing often is compromised. This pilot study supports the premise that individuals with SCD are willing to learn breathing exercises. Medical-surgical nurses should encourage breathing exercises for managing pain and preventing complications.

Nurses' attitudes toward patients with sickle cell disease: a worksite comparison.

Individuals with sickle cell disease (SCD) have reported being stigmatized when they seek care for pain. Nurse attitudes contribute to stigmatization and may affect patients' response to sickle cell cues, care-seeking, and ultimately patient outcomes. The purpose of this cross-sectional, descriptive, comparative design study was to determine whether there are significant differences in nurse attitudes toward patients with SCD by worksite-medical-surgical units compared with emergency departments/intensive care units (ED/ICU). The sample consisted of 77 nurses (36 nurses from the ED/ICU and 41 from medical-surgical units) who completed an anonymous online survey. No significant differences were noted in attitudes by worksite, with nurses from both sites demonstrating high levels of negative attitudes toward patients with SCD. Findings suggest that nurses from both worksites need additional education about SCD and care of this vulnerable, patient population.

Role of self-care in sickle cell disease.

Self-care is an important aspect of managing a chronic disease. In sickle cell disease (SCD), home self-care contributes to individual pain management and thus pain crisis prevention. A better understanding of self-care can help health care providers equip patients with the resources and skills necessary to participate in their disease management. The aim of this study was to examine factors that influence self-care among young adults with SCD. A descriptive, cross-sectional study was conducted using secondary data analysis. Participants were recruited from two SCD clinics in the southeastern United States. The sample consisted of 103 young adults, ages 18 to 30 years, with SCD. Bivariate correlations and regression analyses were used to evaluate the relationships among SCD self-efficacy, social support, sociodemographics, self-care, and hospital visits for pain crises. Study participants were primarily women (61.2%), unemployed or disabled (68%), lived with family (73.8%), and had an annual average of three hospital visits for pain crises. Participants, on average, had 12 years of education, an annual household income of $35,724, and were 24 years old. Social support (p = .001), SCD self-efficacy (p = .002), and years of education (p = .043) were significantly related to self-care. Of the hypothesized variables, only income was significantly associated with hospital visits for pain crises (r = -0.219, p = .05). Individuals with SCD may benefit from self-care interventions that enhance social support, SCD self-efficacy, and access to education. To inform intervention development, further investigation is needed regarding daily self-care behaviors used by young adults with SCD.

Pain: a descriptive study in patients with cancer.

Ninety percent of patients with advanced cancer are reported to experience pain at some time during the course of their illness. This pain usually is improperly evaluated because it varies by patient and is difficult to control. Pain often cannot be conceptualized because of the individual nature of patient experience; however, patterns of pain occur in those suffering from similar conditions. This secondary analysis was conducted to examine the characteristics of pain in individuals with advanced cancer. The sample consisted of 717 patients with cancer who were receiving hospice home care in the southeastern United States. An understanding of the total pain experience, including type of pain and pain location, is important for addressing pain in patients with cancer in hospice care. More effective strategies are needed for pain management in this patient population. In addition, steps need to be taken to ensure that hospice care is understood by and made available to minorities.