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A qualitative study of the experience and impact of neuropathic pain in people living with HIV.

ABSTRACT: Painful distal symmetrical polyneuropathy is common in HIV and is associated with reduced quality of life. Research has not explored the experience of neuropathic pain in people with HIV from a person-centred perspective. Therefore, a qualitative interview study was conducted to more deeply understand the experience and impact of neuropathic pain in this population. Semistructured interviews were conducted with 26 people with HIV and peripheral neuropathic pain symptoms. Interviews explored the impact of pain and participants' pain management strategies. Interviews were transcribed verbatim and analysed using thematic analysis. Four themes and 11 subthemes were identified. Theme 1 reflects the complex characterisation of neuropathic pain, including the perceived unusual nature of this pain and diagnostic uncertainty. Theme 2 centred on the interconnected impacts of pain on mood and functioning and includes how pain disrupts relationships and threatens social inclusion. Theme 3 reflects the struggle for pain relief, including participants' attempts to "exhaust all options" and limited success in finding lasting relief. The final theme describes how pain management is complicated by living with HIV; this theme includes the influence of HIV stigma on pain communication and pain as an unwanted reminder of HIV. These data support the relevance of investigating and targeting psychosocial factors to manage neuropathic pain in HIV.

SUBMITTER: Scott W

PROVIDER: S-EPMC7170440 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

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A qualitative study of the experience and impact of neuropathic pain in people living with HIV.

Scott Whitney W Garcia Calderon Mendoza Del Solar Maite M Kemp Harriet H McCracken Lance M LM C de C Williams Amanda A Rice Andrew S C ASC

Pain 20200501 5

Painful distal symmetrical polyneuropathy is common in HIV and is associated with reduced quality of life. Research has not explored the experience of neuropathic pain in people with HIV from a person-centred perspective. Therefore, a qualitative interview study was conducted to more deeply understand the experience and impact of neuropathic pain in this population. Semistructured interviews were conducted with 26 people with HIV and peripheral neuropathic pain symptoms. Interviews explored the ...[more]

PMID: 31855944

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Project description:OBJECTIVES:To investigate the experience of living with patellofemoral pain (PFP). DESIGN:Qualitative study design using semistructured interviews and analysed thematically using the guidelines set out by Braun and Clarke. SETTING:A National Health Service physiotherapy clinic within a large UK teaching hospital. PARTICIPANTS:A convenience sample of 10 participants, aged between 18 and 40 years, with a diagnosis of PFP and on a physiotherapy waiting list, prior to starting physiotherapy. RESULTS:Participants offered rich and detailed accounts of the impact and lived experience of PFP, including loss of physical and functional ability; loss of self-identity; pain-related confusion and difficulty making sense of their pain; pain-related fear, including fear-avoidance and 'damage' beliefs; inappropriate coping strategies and fear of the future. The five major themes that emerged from the data were: (1) impact on self; (2) uncertainty, confusion and sense making; (3) exercise and activity beliefs; (4) behavioural coping strategies and (5) expectations of the future. CONCLUSIONS:These findings offer an insight into the lived experience of individuals with PFP. Previous literature has focused on pain and biomechanics, rather than the individual experience, attached meanings and any wider context within a sociocultural perspective. Our findings suggest that future research is warranted into biopsychosocial targeted interventions aimed at the beliefs and pain-related fear for people with PFP. The current consensus that best-evidence treatments consisting of hip and knee strengthening may not be adequate to address the fears and beliefs identified in the current study. Further qualitative research may be warranted on the impact and interpretation of medical terminology commonly used with this patient group, for example, 'weakness' and 'patellar mal-tracking' and its impact and interpretation by patients. TRIAL REGISTRATION NUMBER:ISRCTN35272486; Pre-results.

Project description:Gut dysbiosis, defined as pathogenic alterations in the distribution and abundance of different microbial species, is associated with neuropathic pain in a variety of clinical conditions, but this has not been explored in the context of neuropathy in people with HIV (PWH). We assessed gut microbial diversity and dysbiosis in PWH and people without HIV (PWoH), some of whom reported distal neuropathic pain (DNP). DNP was graded on a standardized, validated severity scale. The gut microbiome was characterized using 16S rRNA sequencing and diversity was assessed using phylogenetic tree construction. Songbird analysis (https://github.com/mortonjt/songbird) was used to produce a multinomial regression model predicting counts of specific microbial taxa through metadata covariate columns. Participants were 226 PWH and 101 PWoH, mean (SD) age 52.0 (13.5), 21.1% female, 54.7% men who have sex with men, 44.7% non-white. Among PWH, median (interquartile range, IQR) nadir and current CD4 were 174 (21, 302) and 618 (448, 822), respectively; 90% were virally suppressed on antiretroviral therapy. PWH and PWoH did not differ with respect to microbiome diversity as indexed by Faith's phylogenetic diversity (PD). More severe DNP was associated with lower alpha diversity as indexed by Faith's phylogenetic diversity in PWH (Spearman's ρ = .224, P = 0.0007), but not in PWoH (Spearman's ρ = .032, P = .748). These relationships were not confounded by demographics or disease factors. In addition, the log-ratio of features identified at the genus level as Blautia to Lachnospira was statistically significantly higher in PWH with DNP than in PWH without DNP (t-test, P = 1.01e-3). Furthermore, the log-ratio of Clostridium features to Lachnospira features also was higher in PWH with DNP than in those without (t-test, P = 6.24e-5). Our results, in combination with previous findings in other neuropathic pain conditions, suggest that gut dysbiosis, particularly reductions in diversity and relative increases in the ratios of Blautia and Clostridium to Lachnospira, may contribute to prevalent DNP in PWH. Two candidate pathways for these associations, involving microbial pro-inflammatory components and microbially-produced anti-inflammatory short chain fatty acids, are discussed. Future studies might test interventions to re-establish a healthy gut microbiota and determine if this prevents or improves DNP. PERSPECTIVE: The association of neuropathic pain in people with HIV with reduced gut microbial diversity and dysbiosis raises the possibility that re-establishing a healthy gut microbiota might ameliorate neuropathic pain in HIV by reducing proinflammatory and increasing anti-inflammatory microbial products.

Project description:BackgroundAntiretroviral therapy (ART) is the primary mode of treatment for Human Immunodeficiency Virus (HIV). It slows disease progression and reduces the spread of infection. HIV treatment is also known to require a high level of adherence of over 90% to achieve good treatment outcomes and viral load suppression. In Sierra Leone, about 70% of People Living with HIV (PLHIV) are non-adherent in their first year of treatment. Understanding the reasons behind this high rate of non-adherence from the perspectives of both PLHIV and health workers is critical for developing strategies to improve adherence. This qualitative study is rooted in the field of public health services. It identifies the barriers and facilitators influencing adherence to antiretroviral treatment in Sierra Leone. METHODS: A qualitative study design using in-depth interviews of four healthcare workers and 16 PLHIV in two districts in Sierra Leone- Freetown and Bo. The interviews were analyzed using a grounded theory approach to identify emerging themes from the data.ResultsThe study identified several facilitators and barriers to ART adherence at the personal, community, and health system levels. The facilitators included perceived benefits of ART, family support, having an informal caregiver, receiving free ART medicines, and belonging to peer support groups. The identified barriers were stigma and discrimination, frequency of medication, use of traditional medicine, lack of money for food and transport, work barriers, inadequate medicines and test kits, limited health workers, and long distances to clinics.ConclusionsOur study emphasized the need for implementing behavioural change communication programmes and activities to reduce stigma and discrimination in the community. Knowledge of the facilitators and barriers to antiretroviral therapy could provide relevant information for more responsive and equitable programmes supporting adherence implementation in low- and middle-income countries. This study also identifies the vital need for community integration of HIV treatment services.

Project description:BackgroundPeople living with HIV (PLWH) have low levels of physical activity. Using the social ecological model to understand perceptions, facilitators and barriers of physical activity in this population is of importance for developing contextualised interventions to improve physical activity in PLWH.MethodThis was a qualitative sub-study conducted between august and November 2019 as part of a cohort study on diabetes and associated complications in HIV infected in Mwanza, Tanzania. Sixteen in-depth interviews and three focus groups with nine participants in each were conducted. The interviews and focus groups were audio recorded, transcribed and translated into English. The social ecological model was considered during the coding and interpretation of the results. Transcripts were discussed, coded and analyzed using deductive content analysis.ResultsForty-three PLWH aged 23-61 years participated in this study. The findings showed that most PLWH perceived physical activity as beneficial to their health. However, their perceptions of physical activity were rooted within existing gender stereotypes and roles in the community. Running and playing football were perceived as activities for men while household chores activities were for women. Further, men were perceived to do more physical activity than women. For women, household chores and income-generating activities were perceived as sufficient physical activity. Social support and engagement of family members and friends in physical activity were reported as facilitators of physical activity. Reported barriers of physical activity were lack of time, money, availability of physical activity facilities and social support groups, and poor information on physical activity from health care providers in HIV clinics. Human-immunodeficiency virus (HIV) HIV infection was not perceived by PLWH as a barrier for doing physical activity but most family members did not support them to do physical activity, fearing that it might worsen their condition.ConclusionThe findings demonstrated differing perceptions, facilitators and barriers of physical activity among PLWH. Interventions addressing awareness, gender stereotypes and roles related to physical activity from individual to community level are needed. Supportive environment and infrastructures are needed to improve physical activity levels in PLWH in Tanzania.

Project description:Psychological factors including pain catastrophizing and resilience associate with adjustment and quality of life in people living with chronic pain. Nevertheless, their presentation among females living with HIV and chronic pain has been poorly studied. Given that chronic pain in those living with HIV might occur due to different mechanisms (nociceptive or neuropathic), we hypothesize that the associated psychological states could also differ between these groups. We aimed to compare pain frequency and interference, psychological factors and sleep quality between females living with chronic nociceptive or neuropathic pain. Also, we explored correlations between psychological factors, pain severity and interference in females living with HIV and chronic pain. We performed a cross sectional study assessing females living with HIV and chronic pain, and compared it with a female HIV-positive, pain-free control sample in Brazil. To discriminate the most likely underlying mechanism for the chronic pain, we applied the Leeds Assessment for Neuropathic Signs and Symptoms (LANSS). Forty-nine females living with HIV and chronic pain were assessed, and divided in control (n = 12), nociceptive (n = 10) and neuropathic pain (n = 27) groups. Using validated scales, their pain catastrophizing, resilience, depression, anxiety and sleep disorders were assessed between May 2014 and August 2015. Compared to controls, females living with HIV and neuropathic chronic pain had higher pain frequency (p<0.001), interference on activities (p = 0.002), interference with emotions (p<0.001), catastrophizing (p<0.001), depression (p = 0.015), and lower resilience (p = 0.011). Catastrophizing was also significantly correlated to the burden of chronic pain. The type of chronic pain in females living with HIV should raise concerns regarding significant burden in psychological states in this population (particularly neuropathic pain). Using scales such as the LANSS to identify the type of choric pain, could be of use to address relevant issues for the patients, and to propose tailored therapies.

Dataset Information

A qualitative study of the experience and impact of neuropathic pain in people living with HIV.

Publications

A qualitative study of the experience and impact of neuropathic pain in people living with HIV.

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