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‘Give me a minute, I just need to put you into your groups’: Transferring group activities to the online space using breakout roomsTransitions to online learning as a result of the COVID-19 pandemic challenged how group-based activities were delivered. This paper explores how a quantitative social research design project allowed insights into digital pedagogy. Transition to group working in breakout rooms required planning to be centred on an imagined student learning experience. As a Graduate Teaching Assistant (GTA), this included understanding the dynamics by group, supporting learning in the digital space, presenting accessible materials, facilitating the learning process across multiple groups, and (re)planning teaching sessions successfully for the online milieu. Breakout rooms are dispersed digital learning spaces and were in use at a time when students were experiencing significant declines in mental health, challenges with digital exclusion, disengagement, and a lack of online confidence in peer-to-peer relationships (Peper et al., 2021; Savage et al., 2020). Addressing these key factors required a more student-centred planning approach, based on individual and group needs, in ways which were not seen within face-to-face delivery. Drawing on experiences of the potential for isolation and uncertainty for students in breakout room spaces, I reimagined the digital space in terms of material presentation, facilitating student empowerment, and communicating and managing across multiple breakout rooms concurrently. These strategies contributed towards positive student experiences, providing pedagogical insights into newer online teaching practices for GTAs.
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‘Excuse me, I have a delivery’ The [re] construction of interview ‘space' in the Covid-19 pandemicCovid-19 has transformed the qualitative interview process, as remote video methods have become mainstream, challenging the domination of face-to-face interviews. In the pandemic churn, researchers’ focus was on ensuring participants’ safety and care in the virtual interview environment. There was more limited consideration of what this ‘new normal’ meant for the researcher. This reflection draws on two qualitative research projects conducted during the 2020/2021 pandemic period in the UK. We propose that assumptions of ‘space’ in the qualitative interview process have been (re)constructed in remote interviews during Covid19. To be present virtually creates geographic freedoms of participant access, but subjective risks from interviewing in the virtual space. Context can no longer be understood through the shared experience of an interview space. There is a delineation of what is ‘public’ or ‘private’ as participants and researchers share their domestic spheres. Using ethnographic reflections, we explore the changing notions of geographic, public and private space in the Covid-19 interview.
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An ethnographic study of Acquired Brain Injury survivors: Meaningful occupation and recovery in the acute settingEvidence suggests early activity-dependent experiences post brain injury can support neuroplastic regeneration and reorganisation of the brain for improved functional recovery. It is imperative that this early phase of recovery includes opportunities for meaningful occupation in a motivating environment. Hospitals embody a complex system of cultural symbols and actions yet this cultural influence on Acquired Brain Injury (ABI) recovery has been poorly researched in general acute UK hospitals. The aim of this study was to explore how hospital culture influenced the experience of meaningful occupation and recovery for ABI survivors. As an interpretivist study, symbolic interactionism provided the theoretical framework for an ethnographic methodology. Methods of data collection included 144 hours of participant observation on the wards of a general hospital in Northwest England and twenty-three semi-structured interviews. Participants were purposively selected adults admitted following an ABI, and their significant others. Data were analysed using Reflexive Thematic Analysis. Three themes were constructed from the data: Occupation disconnect ‘too much and too boring’; A way of ‘being’ in hospital; Acceptance ‘that’s how it is’. An overarching theme also captured an umbrella concept: Hospital is the wrong place for recovery. Hospital culture has encompassing tendencies, a characteristic of total institutions, stifling person-centred care and limiting opportunities for ABI survivors to experience meaningful occupations resulting in occupational injustice and adaptive coping strategies that are not beneficial for recovery. This is of great concern during a critical period of neuroplastic brain recovery. Recommendations for policy and practice include expedited discharge from the acute hospital because current cultural processes do not facilitate recovery. Furthermore, this study recommends enhanced training for healthcare staff to optimise acute ABI recovery through embedding person-centred care and opportunities to engage in occupation for health and activity-dependent neuroplasticity. Practical changes on the wards are recommended such as providing clocks, televisions and changing intrusive call bell systems. Greater attention is needed to facilitate circadian rhythm to improve sleep as an occupation integral to brain injury recovery.
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The efficacy of Cotrimoxazole for the prevention of Pneumocystis jirovecii pneumonia among HIV-exposed and infected children: A systematic reviewBACKGROUND: HIV-related opportunistic infections like Pneumocystis jirovecii Pneumonia (PCP) remain a major contributor to child morbidity and mortality globally. PCP accounts for over 60% of AIDS in the first year of life and is responsible for a third of AIDS in children globally. Cotrimoxazole prophylaxis, which is an intervention directed towards tackling this burden, has not attained remarkable coverage despite advocacy towards scale-up. This work was therefore aimed at evaluating the efficacy of cotrimoxazole in the prevention of PCP among children exposed to and infected with HIV by carrying out a systematic review. METHODS: Key scientific databases were searched for primary studies not older than 15 years old without language restrictions. Randomized Control Trials (RCTs) and Cohorts comparing the effectiveness of cotrimoxazole versus placebo in the prevention of PCP among children (<17 years) exposed to and infected with HIV were selected. Studies with a duration of follow-up not less than 3 months long were included. A meta-analysis was conducted on RevMan 5.3 statistical application software following data extraction, and the data quality and risk of bias were also assessed. Exactly Ten (10) studies were selected and analyzed. FINDINGS: It was observed that cotrimoxazole had beneficial effects in terms of a reduction in mortality among HIV-exposed and infected children, as 72 fewer children in 1000 (based on an absolute 95% CI) will die as a result of cotrimoxazole compared to a placebo. Cotrimoxazole also significantly reduces hospital admissions (p-value of 0.008). The adverse events associated with cotrimoxazole are comparable to a placebo when co-administered with ARTS (p = 0.90), which did not impact adherence. CONCLUSION: The benefits of cotrimoxazole prophylaxis far outweigh its risks. Therefore, scaling up the intervention is recommended as a prophylactic for wider coverage, especially in resource-limited settings.
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Accumulation of perceived discrimination over time and likelihood of probable mental health problems in UK adults: A longitudinal cohort studyBACKGROUND: Limited research has examined whether accumulation of discrimination over time is associated with worse mental health and whether such experiences are related to socioeconomic status (SES). METHODS: A sample of UK adults with self-reported discrimination experiences (n = 3863) was taken from three waves of the UK Household Longitudinal Study (2015–2020). Multinomial logistic regression assessed associations between SES (income, education, occupation) and cumulative discrimination (number of timepoints discrimination was reported). Logistic regression models assessed prospective associations between cumulative discrimination and probable mental health problems (GHQ-12; 4+ threshold). RESULTS: Those with lower income were more likely to report discrimination at one timepoint (vs. none). No SES measures were associated with experiencing discrimination at multiple timepoints. Participants who reported one timepoint of discrimination (vs. no experiences) were significantly more likely to report probable mental health problems (OR = 1.47, p < .001, 95% CI 1.20–1.80). Moreover, compared to those experiencing one timepoint, participants reporting multiple timepoints of discrimination were significantly more likely to report probable mental health problems (OR = 1.46, p = .002, 95% CI 1.15–1.86), indicating a cumulative association between discrimination and mental health. There was limited evidence that SES moderated this cumulative association. LIMITATIONS: Mental health measures were based on self-report questionnaires and not a clinical diagnosis. CONCLUSIONS: Amongst a sample of UK adults, perceiving discrimination at multiple timepoints increased the likelihood of experiencing probable mental health problems. There was limited evidence that this cumulative association differed by SES. National measures designed to reduce discrimination may benefit mental health.
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Extrinsic goals benefit capitalism but not well-being. Rethinking the economy’s goal for a healthier futureThe dramatic rise in non-communicable diseases around the world but notably in high-income countries like the UK is a manifestation of a global economic system—capitalism—that prioritizes wealth over health. A decade ago, the former WHO Director-General, Margaret Chan highlighted how ‘efforts to prevent non-communicable diseases go against the business interests of powerful economic operators’ [United Nations. (2013) Take Action for the Sustainable Development Goals. https://www.un.org/sustainabledevelopment/sustainable-development-goals/ (last accessed 16 February 2024)]. While there is a growing literature on how politics and economics influence population health—for better or worse—less attention has been given to exploring how economic systems like capitalism influence people’s psychological well-being. To fill this gap, the following article examines how the continued pursuit of economic growth under capitalism (neoliberal free-market forms especially) impacts well-being through challenging basic psychological needs for security, autonomy, competence and relatedness. In doing so, I hope to shed important light on the sources and possible solutions to our growing health and social problems, and stimulate a conversation on how to achieve a healthier future for us all.
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Supply of energy and selected nutrients in meals consumed by Moroccan students at home and on a university campusBACKGROUND: Student life is often accompanied by changes in eating behavior. Adopting a balanced and varied diet and healthy eating habits can promote the health, growth and intellectual development of young people at different stages of life. According to the WHO, a healthy diet helps protect against all forms of malnutrition, as well as against noncommunicable diseases. The nutritional and energy intake must follow nutritional norms, for example energy intake must be adapted to expenditure. To avoid excessive weight gain, fat should not exceed 30% of total energy intake OBJECTIVE: The goal of this study was to compare energy consumption, macronutrients and selected minerals in food rations consumed by students at university campus and at home. MATERIALS AND METHOD: The subjects were chosen at random from among volunteer students from Hassan II University in Casablanca. A sample of 130 students (54 women and 76 men) aged 18 to 25, participated in this study. Anthropometric measurements were performed to assess general characteristics, and records of one-day food intakes at university and at the parental home were performed by 24-hour food diary, and as well as conducting face-to-face. Variables were expressed as mean ± standard deviation (SD). The Kolmogorov–Smirnov test was used to check the normality of data. RESULTS: In accordance with the body mass index classifications, 69.5% of male university students and 77.7% of female were in normal weight categories. The overweight classes were 25.1% and 5.6%, respectively, for men and women. Assessment of the energy and nutritional intakes of university and home meals shows that students consume more calories, protein, carbohydrates, sodium, potassium, and iodine at home than at university, but these contributions remain insufficient in relation to the RDAs. Students consume more fat, especially saturated fatty acids, at university than at home. More than half of students exceed the recommended daily recommendations for saturated fatty acids. CONCLUSION: These results indicate that a university students’ diet is influenced by their behaviors, attitudes, and knowledge. Hence the importance of nutrition education, based on what foods to consume rather than what foods to avoid, a societal issue that requires a multidisciplinary, multisectoral and culturally appropriate approach.
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Creative Health a joke or valuable learning experience; A mixed methods studyBACKGROUND: Creative Health has been recognised to be beneficial for wellbeing and population health. Recommendations have been made that health care students and professionals should receive education and practical experience of the arts. This paper reports on a pilot creative health placement for undergraduate nurses at a UK University. OBJECTIVE: To evaluate a Creative Health placement, investigating the placements impact on student's knowledge and understanding of arts-based activities, including social prescribing. To reflect on the overall value of Creative Health placements for nursing students and to make recommendations for future Creative Health placements. DESIGN: A mixed methods approach was adopted using the principles of ethnography to evaluate the experiences of the students, artists, service users and practice assessors/supervisors. SETTING: Data was collected from one University Centre that facilitated the Creative Health placement. PARTICIPANTS: 60 Bachelor of Nursing Students, 4 practice assessors/supervisors and 6 Creative Health artists and 89 service users participated. METHODS: Ethnographic data, including artefacts, photographs, diaries, qualitative reflections were collected alongside a quantitative evaluation survey that students completed. Service user feedback forms were used to collect user experiences and two focus groups for the artist and practice assessor were employed using thematic analysis. RESULTS: The placement provided the students insights and understanding about creative health and social prescribing, however there were challenges regarding conceptualising creative health as part of their nursing practice. Students talked about the impact the placement had on their own wellbeing. 81.8 % agreed working with the artists provided insight into Creative Health practice and 86.4 % indicated the placement enabled them to understand the impact of Creative Health on wellbeing. Creative Health artists and the practice assessors/supervisors wanted greater collaboration to support learning and assessment. Service users provided positive feedback about their experiences. CONCLUSIONS: Overall, the placement was a success and there were valuable lessons learnt for future placement plans. We concluded that creative health placements should be an essential part of the nursing programme.
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Generative Justice in Hindsight: On Knowing, doing, and sharing participatory arts-based research with criminal justice-impacted communitiesThis chapter re-examines two very different participatory arts-based projects within the justice sector through the lens of Generative Justice (hereafter GJ), an emerging concept-praxis that integrates prefigurative (seed-planting) community practices with criminal justice-impacted individuals to reimagine relationships based on solidarity rather than exclusion (McNeill, 2022; McNeill, Corcoran and Weaver, 2023). GJ constitutes a disruptive social change effort, which, like participatory arts-based projects, involves ‘shifting communities and networks’ working toward localised social transformation (Frödén, 2023: 104). In fact, ‘arts-based interventions have played a key role in enriching and mobilising prefigurative movements all over the world’ (Frödén, 2023: 105). As authors, we have been involved in participatory arts-based research and praxis that aims to challenge and transform power structures by leveraging community-driven creativity. Each of our works were designed to place lived experience of criminal justice systems at the centre of knowledge production, working with imagination to create diverse research communities based on solidarity, hope and systemic change (McNeill, 2022). Despite differences between our two projects, both align with GJ, sharing interests in reciprocity, generativity, active participation, and collective action.
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Utilising a community cultural wealth model to explore African heritage social work student stories from placement: A critical ethnographic studyPost-graduate qualifying social work education programs in England generally recruit higher numbers of minoritised ethnic students than other post-graduate programmes. However, longstanding inequalities in outcomes and progression for ethnically minoritised social work students persist. Unpaid work placements constitute a key component of qualifying social work programmes but can pose additional barriers for ethnically minoritised students. Nonetheless, most successfully complete their placements and their programmes. This study utilised critical ethnography to identify the strengths and strategies employed by seven African heritage M.A. social work students as they navigated placements arranged by a higher education institution (HEI) in north-west England. Discourse in social work education regarding unequal outcomes for minoritised ethnic students is dominated by deficit thinking, whereby the assets of marginalised students are frequently overlooked, and interventions focus on 'fixing' students, ignoring HEI practice. This study challenged such discourse by illuminating the assets that seven African heritage students, four of whom were classified as ‘home’ students and three as ‘international’, brought to their practice placements. Arts-based engagement ethnography was utilised to gather stories from the participants, employing creative techniques, generating artefacts that informed individual interviews and a focus group. Participants' voices were privileged throughout, and rich, nuanced detail obtained. The impact of intersecting factors, including gender, religion, and immigration status, was apparent throughout the study. The data chronicled participants’ counter storytelling narratives, uncovering the multiple strategies they applied to 'fit' into their placements. Furthermore, elevated levels of individual agency were evidenced, utilised by participants to secure essential learning. The study illustrated the critical role dispersed families and kin, alongside religious faith, and values, contributed to sustaining participants' endeavours. However, the data also highlighted students' efforts as predominantly unnoticed, therefore unsupported by their HEI and placements. Analysis of their stories, utilising a community cultural wealth model, evidenced extensive cultural knowledge, skills, and resources. Aspirational, familial, linguistic, navigational, social, resistant, and spiritual capital were present in abundance: their interconnected nature evident. Actions to empower students to use their cultural assets were identified, with the significance of supporting social, linguistic, and spiritual capital emphasised. The study contributed new knowledge taking a strength-based perspective to identify the cultural assets a group of African heritage social work students brought to their practice placements in England. The applicability and value in using community cultural wealth models in practice settings, to identify students’ assets, was established. The findings have implications for HEIs and placement agencies, with potential to improve support and outcomes for African heritage social work students on placement.
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An assessment of burden associated with problem joints in children and adults with moderate or severe haemophilia A: analysis of the CHESS-Paediatrics and CHESS II cross-sectional studiesBACKGROUND: Clinical research has offered many definitions and fragmented perspectives of joint morbidity in haemophilia. As joint damage, pain and mobility impairment can be present without clinical record of persistent bleeding, a person-centric joint morbidity characterisation remained a priority for the haemophilia community, giving rise to the ‘problem joint’ concept. As diagnosing and managing joint morbidity is critical, the aim of this study was to analyse the holistic burden of problem joints in people with moderate or severe haemophilia A (HA). Data from the ‘Cost of Haemophilia in Europe: a Socioeconomic Survey’ (CHESS) cross-sectional studies were used. CHESS-Paediatrics included male paediatric patients (≤ 17 years) with congenital moderate or severe haemophilia, while CHESS II included adult males (≥ 18 years) of any severity. Both studies sought to collect detailed information on the clinical, economic and humanistic burden of haemophilia. Demographics, clinical outcomes, treatment regimen, adherence, physical activity, healthcare resource use and number of problem joints were evaluated and described by HA severity and number of problem joints (none, 1, ≥ 2). RESULTS: In total, 1171 people with non-inhibitor moderate or severe HA from CHESS-Paediatrics (n = 703) and CHESS II (n = 468) were included in this analysis. Presence of problem joints was more prevalent among CHESS II participants (44%) than in CHESS-Paediatrics (14%). Around two-thirds (67%) of CHESS-Paediatrics and 39% of CHESS II participants received prophylactic factor VIII replacement therapy. The presence of chronic pain was greater in severe HA with ‘ ≥ 2’ problem joints in both cohorts. Clinical symptoms and bleed-related hospitalizations were more prevalent in the presence of problem joints regardless of HA severity in both cohorts. CONCLUSIONS: This analysis of the CHESS population studies has expanded on previous work by examining the relevance of the problem joint measure of haemophilic morbidity and its associated burden. Adverse clinical symptoms and increased bleed-related hospitalizations were observed in the presence of problem joints in both children/adolescents and adults across HA severities. Use of person-centric characterizations of joint morbidity may improve analysis of long-term outcomes and lead to improvements in future haemophilia care.
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Effectiveness of Angiotensin Receptor Blockers (ARB) and hydrochlorothiazide compared to ARB monotherapy in the control of hypertension among adult patients: A systematic review and meta-analysisBackground: Hypertension (HTN) is a global disease of public health concern. It is considered a major cause of morbidity and mortality worldwide. The global and regional recommendations for the management of high blood pressure are complicated, with an increasing call for several adequate measures to commence treatment, increase the dosage, or introduce a new class of medication. Evidence suggests that most people with HTN require more than one drug regime to achieve blood pressure goals, with a greater percentage of patients reporting only having access to monotherapy. This work evaluated the combined effectiveness of angiotensin receptor blockers (ARBs) and hydrochlorothiazide (HCTZ) compared to ARB monotherapy in an uncontrolled hypertensive patients. Methods: The search involved screening through databases such as Cochrane Library, PubMed, CINAHL, Embase, Medline, and the Web of Science, medical journals, and international registry on clinicals from the WHO were searched for primary studies not older than 13 years. Randomized control trials (RCTs) comparing the effectiveness of ARB/HCTZ versus ARB monotherapy in hypertensive patients were selected. Care was taken to include only studies that lasted at least four weeks. Meta-analysis was conducted on RevMan 5.3 statistical application software, following data extraction. Data quality and risk of bias assessment were also all assessed. A total of seven RCTs were considered for this study involving 4814 participants. Results: The result from the intervention arm revealed that ARB/HCTZ combination resulted in a higher rate of target blood pressure achievement when compared to ARB monotherapy relative risk (RR) = 1.53, 95% confidence interval (CI) (1.42, 1.65), with p < 0.00007. The adverse effects observed in the intervention arm were not significant. Conclusion: The ARB/HCTZ combination therapy was more effective in lowering and controlling blood pressure when compared to ARB monotherapy without significant adverse drug effects reported by the participants. Health workers should therefore recommend ARB/HCTZ combination therapy for patients with uncontrolled hypertension.
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Experiences and unmet needs among caregivers of children living with autism spectrum disorder in Nigeria: A qualitative study using the socio-ecological modelIntroduction: This study examines the experiences and unmet needs of caregivers of children with autism spectrum disorder in Nigeria. With a high prevalence in Nigeria, autism spectrum disorder poses a heavy economic burden on society and the patients’ families, with limited social interactions and stigma. Despite this, the unmet needs and psychosocial burdens of autism spectrum disorder on caregivers have been understudied in Nigeria. The study contributes evidence and raises interest in this area of research. Methods: This qualitative study was conducted among twenty-three purposively selected caregivers. Questions from the PREPARE and Zarit Burden Interview tools were adapted for the interview and discussion guides. Data were collected among caregivers of pupils in selected special needs schools in Cross River State, Nigeria. Inductive and deductive approaches were used for the analysis using NVivo 20 pro. The socio-ecological model was used to generate the themes and quotes. Results: The study generated four themes and eleven sub-themes across four levels of the socio-ecological model. Findings from our study showed that caregivers of children undergo significant emotional distress, disbelief, and fear at the early stage of diagnosis. Furthermore, families and friends had difficulty comprehending or accepting their children’s diagnosis, which further created tension and misunderstanding. Socio-cultural contexts such as stigma and isolation were not uncommon in the society. Conclusion: Given the burden of the psychological demand and stigma attached to caregivers and children with autism, there is an urgent need for a tailor-made intervention with the key interplay of individual, interpersonal, societal/institutional, and policy in Nigeria. Advocacy efforts and awareness chaired by caregivers should be strengthened across all levels of the society in Nigeria.
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Knowledge and attitude of women towards breast cancer screening in resource-limited setting in women aged 18–45 yearsBreast cancer incidence is on the rise regardless of several interventions available for its management. This scenario may be worse in resource-limited countries. This study, therefore, aimed to evaluate the knowledge and attitude of women towards Breast Cancer Screening (BCS) in Aminu Kano Teaching Hospital (AKTH), Kano State, a typically resource-limited state in Nigeria. This was a cross-sectional study. The study population comprised female individuals aged 18–45 years attending the Antenatal and Postnatal clinics of AKTH. An adopted questionnaire instrument was used to extract vital information on the knowledge and attitude of women towards breast cancer screening in the Antenatal and Postnatal clinics of AKTH. Our findings showed that there is much awareness about BCS, even though most participants’ knowledge about the methods and timing of the scan is low. Much enlightenment is achieved through the availability of print and electronic media on BCS. A better attitude is shown when trained personnel conduct BCS. A good number of participants who have knowledge are yet to translate their knowledge and attitudes into practice. Based on our findings, coordinated and timely awareness campaigns should be organized by local health authorities to improve knowledge and attitude towards BCS.
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Comparative study of hypertension, diabetes, dementia and smoking in military veterans and non-veterans: a quantitative study using primary healthcare dataIntroduction: Primary healthcare (PHC) patient medical records contain Systematised Nomenclature of Medicine-Clinical Terms (SNOMED-CT) that include information regarding diagnosis, demographics and veterans’ status. This study intended to identify, analyse and compare the prevalence of type 2 diabetes, hypertension, dementia and smoking tobacco in veterans and non-veterans, including stratification by age and gender. Methods: The authors partnered with 13 PHC practices with a population of 137 410 patients. Staff extracted matched veteran and non-veteran SNOMED-CT data from patient medical records; then sent the authors anonymised data in an amalgamated format between October 2023 and January 2024. Patients were from a local community and therefore social and environmental factors would be similar. Submitted information was inputted into an SPSS database 28 for analysis which included descriptive and inferential statistics to indicate statistical significance. Results: In total, 5458 PHC electronic records were examined comprising 2729 veterans and 2729 demographically matched for age and gender non-veterans. Each group contained 86.4% (N=2359) men and 13.6% (N=370) women. The mean age was 63.8 years (SD 17.7). Rates of hypertension were 20.9% in veterans compared with 17.6% in non-veterans (p=0.002). Type 2 diabetes mellitus was 8.3% in veterans compared with 6.4% in non-veterans (p=0.007). Dementia was 2.1% of veterans compared with 2.5% of non-veterans (p=0.32). Smoking was 11.8% of veterans compared with 10.6% of non-veterans (p=0.16). Conclusion: These results reveal that veterans were statistically more likely to be diagnosed with hypertension and diabetes. This study should assist in a better understanding of the healthcare needs of the veteran population to potentially inform better patient-centred care. However, the effectiveness of using PHC patient medical records requires increased efforts to improve data quality which needs improved PHC staff knowledge, consistency in SNOMED-CT coding, better veteran medical e-record registration and coding and better data transmission between the Defence Medical Services and PHC.
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Commentary: Relationship between resilience, social support and psychological well-being in nursing studentsIn the United Kingdom and internationally, the nursing workforce currently needs more nurses due to challenges in recruiting and retaining them (Buchan and Catton, 2023). Nursing is known for its demanding nature, which exposes nurses to acute and chronic stressors. This could potentially lead to conditions such as depression, anxiety, secondary traumatic stress and burnout (Mitchell, 2024a).
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Distribution and predictors of haemophilia-related costs in the United Kingdom: analysis of the CHESS I and CHESS II burden of illness studiesBackground: Few studies have evaluated direct medical or societal costs of haemophilia in the United Kingdom (UK), and how patient characteristics impact future costs is uncertain. Cost predictors were identified and examined using cross-sectional data from the CHESS I and II studies. Methods: Patient- and physician-reported outcomes were analysed for UK adult males aged ≤ 65, with haemophilia A or B and no recent clinical trial participation. Demographics, haemophilia type and severity, inhibitors, annual bleed rate (ABR), problem joints (PJs), treatment type, and comorbidities, were utilised in regression analyses. Health-related quality of life was assessed using EQ-5D. Generalised linear models estimated expected non-drug haemophilia-related direct medical costs (DMC) and societal costs (non-drug DMC, direct non-medical and indirect costs). Average marginal effects (AMEs) determined predictors of cost. Results: Costs for 378 patients were analysed. Mean age was 33 years and 79% (299) had haemophilia A. Mean annual per-patient DMC were £165,001 (including factor treatment costs) and £4,091 when excluding factor replacement treatment costs (non-drug DMC). Mean annual per-patient non-treatment societal costs were £11,550 (standard deviation £20,171) among those with data available (n = 51). Number of PJs, ABR, and treatment regimen were significant determinants of haemophilia-related non-drug DMC (all P < 0.001). Non-drug DMC increased as ABR increased (AMEs were £2,018 for ABR 1–5, £3,101 for ABR 6–10 and £5,785 for ABR ≥ 11, vs. ABR 0) and by £1,869 per additional PJ. No significant predictors of non-drug haemophilia-related societal costs were identified. Mean EQ-5D score was 0.66, with lower scores observed for people with haemophilia B (0.48) compared with haemophilia A (0.71) and with increasing haemophilia severity. Conclusions: UK direct medical and societal costs of haemophilia are substantial. Non-drug DMC were particularly associated with ABR and number of PJs. These findings may be useful for real-world evaluations of the economic burden of haemophilia in the UK.
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Peer mentoring as an overlooked health and social care methodPeer mentoring, delivered by people with shared experiences, has grown rapidly across the globe in recent decades (Munn-Giddings and Borkman, 2017). This (multi)national development is underpinned by ‘lived experience’ movements pressing for democratic inclusion, and consumerist notions of user involvement as a lever of efficiency and effectiveness (Beresford 2002). Peer mentoring is a ‘method’ to implement the ‘theory’ of lived experience involvement and the closely related theories of participation, and coproduction, but it has largely been overlooked in health and social care texts and consequently in professional training. To bridge this gap, this chapter will introduce lived experience involvement in health and social care and examples of peer mentoring, before focusing on criminal justice as a case study to explore how the strengths of peer mentoring can be harnessed and the pitfalls avoided.
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All our justice: People with convictions and ‘participatory’ criminal justiceCriminalised people play varied roles in the development and delivery of criminal justice services and advocacy around the world, yet rarely feature in texts on service user involvement. The chapter explores how people with lived experiences of the criminal justice system are involved with, and too often excluded from, formal criminal justice knowledge production. We reflect on ‘leaders’ with lived experiences and how they produce, contribute to and constitute criminal justice knowledges. These reflections highlight the importance of being sensitive to the needs of people sharing their shame/trauma-invoking life experiences, offering substantial opportunities beyond volunteering or insecure contracts and real commitments to power sharing. As a single ‘user voice’ is not possible, it is also important that a range of perspectives are represented from activist/practitioner to managerial levels. Importantly, this should include black and minority ethnic men and women, who are overrepresented as recipients of punishment and underrepresented as leaders and influencers, with or without lived experience.
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Curated Immersion: An Exploration of Participatory Arts Practice in Healthcare ContextsResearch into the nature of participatory arts practice in health is scarce. Literature discussing this practice lists successful components but there are few conceptualisations of the practice that draw these components together. Assemblages available are specific to health contexts or art-forms and therefore this research investigates the common componential nature of participatory arts practice in health (PAPH) and aims to map a casual network of this practice. Artist ‘case studies’ are formed from data gathered through social-science methodologies (observations and semi-structured interviews). These case studies are coded and then displayed as data matrices, used to collate common components across the diversity of practices. Causation networks then plot the causal relationships of these components and a map is created to visualise the collective whole. This map is then analogised as a terrarium, an emblem of the whole practice, describing both the constituent parts of PAPH and its assembly. The findings reveal that, despite the diversity of PAPH, common components - and their assembly - exist. This research suggests that PAPH consists of a carefully curated and attentively adapted space in which an immersive, co-created, participatory experience is nurtured.
