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Qualitative study exploring patients experiences of being diagnosed and living with primary bone cancer in the UK.

ABSTRACT: OBJECTIVE:The aim of this study is to explore the experiences of patients with primary bone cancer. DESIGN:Qualitative study design using semistructured interviews and focus groups. SETTING:Hospitals across the UK and recruitment through UK sarcoma charities and support groups. METHODS:Semistructured telephone/face-to-face interviews and focus groups with a purposive sample of 26 participants. Data were analysed using Framework Analysis. PARTICIPANTS:Patients (n=26) with primary bone cancer aged 13-77 years. The majority were male (69%), white (85%); diagnosed within 4 years (54%); and had lower limb sarcoma (65%). Ten participants had undergone an upper/lower limb amputation (39%). RESULTS:The health-related quality-of-life domains of physical, emotional and social well-being and healthcare professionals' role were the overarching themes of analysis. The physical domain anchored patient experiences. The intensity and length of treatment, the severity of side-effects, the level of disability after surgery and the uncertainty of their prognosis had an impact on patient's self-image, confidence, mood and identity, and caused disruption to various aspects of the patients' social life, including their relationships (emotional and sexual) and participation in work/school and leisure activities. Adaptation was influenced by the way patients dealt with stress and adversity, with some finding a new outlook in life, and others struggling with finding their 'new normal'. Family and friends were the main source of support. Healthcare professional's expertise and support was critical. Rehabilitation services had a considerable role in patient's physical and emotional well-being, but inequitable access to these services was apparent. CONCLUSIONS:This study described the impact of primary bone cancer on patients' well-being and adjustment over time with the identification of influencing factors of better/worse experiences. It showed that impact was felt after end of treatment and affected patients at different life stages. Holistic models of survivorship care are needed.

SUBMITTER: Martins A

PROVIDER: S-EPMC6773292 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature

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Qualitative study exploring patients experiences of being diagnosed and living with primary bone cancer in the UK.

Martins Ana A Whelan Jeremy S JS Bennister Lindsey L Fern Lorna A LA Gerrand Craig C Onasanya Maria M Storey Lesley L Wells Mary M Windsor Rachael R Woodford Julie J Taylor Rachel M RM

BMJ open 20190924 9

<h4>Objective</h4>The aim of this study is to explore the experiences of patients with primary bone cancer.<h4>Design</h4>Qualitative study design using semistructured interviews and focus groups.<h4>Setting</h4>Hospitals across the UK and recruitment through UK sarcoma charities and support groups.<h4>Methods</h4>Semistructured telephone/face-to-face interviews and focus groups with a purposive sample of 26 participants. Data were analysed using Framework Analysis.<h4>Participants</h4>Patients ...[more]

PMID: 31551374

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Project description:OBJECTIVE:To explore student physician associates' (PAs) experiences of clinical training to ascertain the process of their occupational identity formation. SETTING:The role of the PA is relatively new within the UK. There has been a rapid expansion in training places driven by National Health Service (NHS) workforce shortages, with the Department of Health recently announcing plans for the General Medical Council to statutorily regulate PAs. Given such recent changes and the relative newness of their role, PAs are currently establishing their occupational identity. Within adjacent fields, robust identity development improves well-being and career success. Thus, there are implications for recruitment, retention and workplace performance. This qualitative study analyses the views of student PAs to ascertain the process of PA occupational identity formation through the use of one-to-one semistructured interviews. A constructivist grounded theory approach to data analysis was taken. Research was informed by communities of practice and socialisation theory. PARTICIPANTS:A theoretical sample of 19?PA students from two UK medical schools offering postgraduate PA studies courses. RESULTS:A conceptual model detailing student PA identity formation is proposed. Factors facilitating identity formation include clinical exposure and continuity. Barriers to identity formation include ignorance and negativity regarding the PA role. Difficulties navigating identity formation and lacking support resulted in identity dissonance. CONCLUSIONS:Although similarities exist between PA and medical student identity formation, unique challenges exist for student PAs. These include navigating a new role and poor access to PA role models. Given this, PA students are turning to medicine for their identity. Educators must provide support for student PA identity development in line with this work's recommendations. Such support is likely to improve the job satisfaction and retention of PAs within the UK NHS.

Project description:ObjectiveTo determine patient experience and perception following a diagnosis of non-muscle-invasive bladder cancer (NMIBC).Patient and methodsPatients were part of a prospective multicentre observational study recruiting patients with NMIBC for a urine biomarker study (DETECT II; ClinicalTrials.gov: NCT02781428). A mixed-methods approach comprising: (i) the Brief Illness Perception Questionnaire (Brief-IPQ) and (ii) semi-structured interviews to explore patients' experience of having haematuria, and initial and subsequent experience with a NMIBC diagnosis. Both assessments were completed at 6 months after NMIBC diagnosis.ResultsA total of 213 patients completed the Brief-IPQ. Patients felt that they had minimal symptoms (median [interquartile range, IQR] score 2 [0-5]) and were not particularly affected emotionally (median [IQR] score 3 [1-6]) with a minimal effect to their daily life (median [IQR] score 2 [0-5]). However, they remained concerned about their cancer diagnosis (median [IQR] score 5 [3-8]) and felt that they had no personal control over the cancer (median [IQR] score 2 [2-5]) and believed that their illness would affect them for some time (median [IQR] score 6 [3-10]). A significant association with a lower personal control of the disease (P < 0.05) and a poorer understanding of the management of NMIBC (P < 0.05) was seen in patients aged >70 years. Many patients were uncertain about the cause of bladder cancer. Qualitative analysis found that at initial presentation of haematuria, most patients were not aware of the risk of bladder cancer. Patients were most anxious and psychologically affected between the interval of cystoscopy diagnosis and transurethral resection of bladder tumour (TURBT). Following TURBT, most patients were positive about their cancer prognosis.ConclusionPatients with NMIBC have a poor perception of disease control and believe that their disease will continue over a prolonged period of time. This is particularly more pertinent in the elderly. Patients are most psychologically affected during the interval between cancer diagnosis following cystoscopy and TURBT. Health awareness about bladder cancer remained poor with a significant number of patients unaware of the causes of bladder cancer. Psychological support and prompt TURBT following bladder cancer diagnosis would help improve the mental health of patients with NMIBC.

Project description:To explore patient experiences, understanding and perceptions of analgesia following major lower limb amputation. Qualitative interview study, conducted as part of a randomised controlled feasibility trial. Participants were recruited from two general hospitals in South Wales. Interview participants were patients enrolled in PLACEMENT (Perineural Local Anaesthetic Catheter aftEr Major lowEr limb amputatioN Trial): a randomised controlled feasibility trial comparing the use of perineural catheter (PNC) versus standard care for postoperative pain relief following major lower limb amputation. PLACEMENT participants who completed 5-day postoperative follow-up, were able and willing to participate in a face-to-face interview, and had consented to be contacted, were eligible to take part in the qualitative study. A total of 20 interviews were conducted with 14 participants: 10 male and 4 female. Semi-structured, face-to-face interviews were conducted with participants over two time points: (1) up to 1 month and (2) at least 6 months following amputation. Interviews were audio-recorded, transcribed verbatim and analysed using a framework approach. Interviews revealed unanticipated benefits of PNC usage for postoperative pain relief. Participants valued the localised and continuous nature of this mode of analgesia in comparison to opioids. Concerns about opioid dependence and side effects of pain relief medication were raised by participants in both treatment groups, with some reporting trying to limit their intake of analgesics. Findings suggest routine placement of a PNC following major lower limb amputation could reduce postoperative pain, particularly for patient groups at risk of postoperative delirium. This method of analgesic delivery also has the potential to reduce preoperative anxiety, alleviate the burden of pain management and minimise opioid use. Future research could further examine the comparison between patient-controlled analgesia and continuous analgesia in relation to patient anxiety and satisfaction with pain management. ISRCTN: 85710690; EudraCT: 2016-003544-37.

Project description:Aims and objectivesWhile haemodialysis is an effective treatment for end-stage renal disease, the requirements and restrictions it imposes on patients can be onerous. The aim of this study was to obtain UK National Health Service patients' perspectives on the challenges arising from haemodialysis with the intention of identifying potential improvements.BackgroundDepression rates are particularly high in those with end-stage renal disease; however, there is limited insight into the range of stressors associated with haemodialysis treatment within the National Health Service contributing to such high rates, particularly those of a cognitive or psychological nature.DesignA qualitative approach was used to obtain rich, patient-focused data; one-to-one semi-structured interviews were conducted with twenty end-stage renal disease at a UK National Health Service centre.MethodsPatients were interviewed during a typical haemodialysis session. Thematic analysis was used to systematically interpret the data. Codes were created in an inductive and cyclical process using a constant comparative approach.ResultsThree themes emerged from the data: (i) fluctuations in cognitive/physical well-being across the haemodialysis cycle, (ii) restrictions arising from the haemodialysis treatment schedule, (iii) emotional impact of haemodialysis on the self and others. The findings are limited to predominantly white, older patients (median = 74 years) within a National Health Service setting.ConclusionsSeveral of the experiences reported by patients as challenging and distressing have so far been overlooked in the literature. A holistic-based approach to treatment, acknowledging all aspects of a patient's well-being, is essential if optimal quality of life is to be achieved by healthcare providers.Relevance to clinical practiceThe findings can be used to inform future interventions and guidelines aimed at improving patients' treatment adherence and outcomes, for example, improved reliable access to mental health specialists.

Dataset Information

Qualitative study exploring patients experiences of being diagnosed and living with primary bone cancer in the UK.

Publications

Qualitative study exploring patients experiences of being diagnosed and living with primary bone cancer in the UK.

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