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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: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.

Project description:BackgroundAdolescents and young people globally are highly vulnerable to poor mental health especially depression, and they account for 36% of new HIV infections in Eastern and Southern Africa. HIV services remain inadequate for this population and their adherence to ART is low. The Friendship Bench (FB), an evidence-based model developed in Zimbabwe to bridge the mental health gap, is a brief psychological intervention delivered on benches in primary care facilities by lay health workers ("grandmothers") trained in problem-solving therapy. This study explored the experience of young people living with HIV attending FB, and their perception of how problem-solving therapy impacted their adherence to ART.MethodsSemi-structured interviews were conducted in July 2019 with 10 young people living with HIV aged 18-24 years, who had recently completed FB counselling in Harare. Participants were purposively sampled and recruited from three primary care facilities. Interviews were conducted in Shona, audio-recorded, transcribed verbatim and translated into English. Transcripts were analysed in NVivo12 using inductive thematic analysis.ResultsStudy findings revealed a clear emotional denial towards HIV, particularly for young people infected perinatally, and a resulting low adherence to ART. The study also unpacked the issues of internal stigma and how young people living with perinatally acquired HIV are informed of their HIV status. Participants reported that FB had a critical role in helping them accept their HIV status. Grandmothers' empathic attitude was key during counselling on adherence to ART, to demystify the disease and treatment, normalize the reality of living with HIV, encourage young people to socialize with peers and free them of guilt. Interviewees unanimously reported improved ART adherence following FB counselling, and many described enhanced health and wellbeing.ConclusionParticipants saw FB as a strong contributor to their general well-being, evident in decreased symptoms of depression and improved adherence to ART. FB problem-solving therapy should be rolled out to further support young people after post-test counselling or HIV serostatus disclosure for perinatally acquired HIV, for acceptance of HIV status and adherence to ART.

Project description:BACKGROUND:Plantar heel pain is a common source of pain and disability. Evidence-based treatment decisions for people with plantar heel pain should be guided by the best available evidence, expert clinical reasoning, and consider the needs of the patient. Education is a key component of care for any patient and needs to be tailored to the patient and their condition. However, no previous work has identified, far less evaluated, the approaches and content required for optimal education for people with plantar heel pain. The aim of this study was to gather the patients' perspective regarding their lived experience, attitudes and educational needs in order to inform the content and provision of meaningful education delivery approaches. METHODS:Using a qualitative descriptive design, semi-structured interviews were conducted with participants with a clinical diagnosis of plantar heel pain. A topic guide was utilised that focused on the experience of living with plantar heel pain and attitudes regarding treatment and educational needs. Interviews were audio recorded, transcribed verbatim and analysed using the Framework approach. Each transcription, and the initial findings, were reported back to participants to invite respondent validation. RESULTS:Eighteen people with plantar heel pain were interviewed. Descriptive analysis revealed eight themes including perceptions of plantar heel pain, impact on self, dealing with plantar heel pain, source of information, patient needs, patient unmet needs, advice to others and interest in online education. Participants revealed doubt about the cause, treatment and prognosis of plantar heel pain. They also expressed a desire to have their pain eliminated and education individually tailored to their condition and needs. Respondent validation revealed that the transcripts were accurate, and participants were able to recognise their own experiences in the synthesised themes. CONCLUSION:Plantar heel pain has a negative impact on health-related quality of life. Participants wanted their pain eliminated and reported that their expectations and needs were frequently unmet. Health professionals have an important role to be responsive to the needs of the patient to improve their knowledge and influence pain and behaviour. Our study informs the content needed to help educate people with plantar heel pain.

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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