The development of a contextually appropriate measure of individual recovery for mental health service users in a South African context

Thesis (PhD)--Stellenbosch University, 2021.ENGLISH ABSTRACT: Mental health is a crucial part of the overall wellbeing of persons. Recovery is increasingly recognised worldwide as an essential approach to mental health. In this study recovery is regarded as personal recovery, a multidimensional construct differing from remission. In high-income countries, the study of recovery has developed and expanded to raise individuals’ awareness of, and involvement in, their own recovery and to change mental health services to have a recovery-orientation. With increasing awareness and involvement, and changing orientations, comes the importance to measure individuals’ recovery for personal, professional and funding purposes. Individual recovery measurement has increased worldwide. In South Africa, the study of recovery and its measurement is still emerging in a context of great challenges and resource constraints. Thus, this study aimed to contribute to the growing knowledge of recovery in South Africa by exploring the understanding of recovery among service users, carers and service providers, the barriers to, and facilitators of, recovery, and by developing an individual measure of recovery that is appropriate to a South African context. The study employed an exploratory sequential mixed-method design. Exploring the understanding of recovery through 37 interviews and three focus groups with service users, carers and service providers at three tertiary psychiatric hospitals in the Western Cape Province of South Africa, and comparing these results with recovery processes established through other empirical work, yielded dimensions and sub-dimensions of recovery appropriate to the study context, which were formulated into a South African definition of recovery. The dimensions of recovery were closely linked to each other and confirmed the layered, iterative and non-linear nature of the recovery process. Together with the barriers to, and facilitators of, recovery, which were also explored during the interviews and focus groups and indicated how recovery happens (or does not) in the lives of service users, the definition and dimensions of recovery were used to inform the formulation of items and format of the measure. The items were reduced and format refined through a process of preliminary content validity, which consisted of (a) a Delphi panel of professional experts; (b) cognitive interviews with service users; (c) the matching of items and dimensions by clinical experts; and (d) a readability test. The resultant Measure of Individual Mental Health Recovery for a South African context consists of 38 items. This is the first such measure developed for a South African context and makes it possible for service users, together with carers and direct service providers, to use the results from the administration of the measure as a starting point for discussions about the recovery process for the service user. The measure may also provide recovery-oriented programme implementers with a means to determine how participants are moving along in their recovery to report to funders, either to obtain or retain funding. The emphasis throughout the results on support in various forms as crucial to recovery suggests the appropriate and circumspect development of formal peer support work for South African contexts, which may ultimately be beneficial on many levels. Keywords: mental health recovery, South Africa, definition, barriers, facilitators, measurement, peer support workAFRIKAANSE OPSOMMING: Geestesgesondheid is ‘n deurslaggewende deel van algehele welwees van persone. Herstel (recovery) word wêreldwyd toenemend erken as ‘n noodsaaklike geestesgesondheidsbenadering. In hierdie studie word herstel beskou as persoonlike herstel, ‘n multi-dimensionele konstruk anders as remissie. In hoë-inkomste lande het die studie van herstel ontwikkel en uitgebrei om indiwidue se bewustheid van, en betrokkenheid by, hul eie herstel te verhoog en om geestesgesondheidsdienste se benadering tot ‘n herstelgeoriënteerde benadering te verander. In die lig van toenemende bewustheid en betrokkenheid, asook veranderende benaderings, is dit belangrik om maniere te vind waarop indiwidue se herstel gemeet kan word vir persoonlike, professionele en befondsingsdoeleindes. Indiwiduele herstelmeting het wêreldwyd toegeneem. In Suid-Afrika is die studie en meting van herstel nog ontluikend, in ‘n konteks van groot uitdagings en hulpbronbeperkinge. Dus was hierdie studie daarop gemik om tot die groeiende kennis oor herstel by te dra, deur die begrip van herstel vir diensgebruikers, versorgers en diensverskaffers, en hindernisse tot en fasiliteerders daarvan te verken, asook ‘n indiwiduele herstelmeetintrument, gepas vir ‘n Suid-Afrikaanse konteks, te ontwikkel. ‘n Verkennende, opeenvolgende gemengde-metode navorsingsontwerp is aangewend. Die verkenning van die begrip van herstel deur 37 onderhoude en drie fokusgroepe met diensgebruikers, versorgers en diensverskaffers by drie tersiêre psigiatriese hospitale in die Wes-Kaapprovinsie, Suid- Afrika, en die vergelyking van die resultate met herstelprosesse wat deur ander empiriese werk ontwikkel is, het studiekonteks-gepaste dimensies en sub-dimensies van herstel opgelewer, wat in ‘n Suid-Afrikaanse definisie van herstel geformuleer is. Die dimensies van herstel was nou verwant en het die laagsgewyse, iteratiewe en nie-liniêre aard van die herstelproses bevestig. Tesame met die hindernisse tot, en fasiliteerders van, herstel, wat ook tydens die onderhoude en fokusgroepe verken is en aangedui het hoe herstel plaasvind (of nie) in diensgebruikers se lewens, is die definisie en dimensies van herstel gebruik ter inligting van itemformulering en die formaat van die meetinstrument. ‘n Proses van voorlopige inhoudsgeldigheidstoetsing, bestaande uit (a) ‘n Delphi-paneel van professionele deskundiges; (b) kognitiewe onderhoude met diensgebruikers; (c) die oppaar van items en dimensies deur kliniese deskundiges; en (d) ‘n leesbaarheidstoets, is gebruik om items te verminder en die formaat te verfyn. Die gevolglike Meetinstrument van Indiwiduele Geestesgesondheidsherstel vir ‘n Suid-Afrikaanse konteks bestaan uit 38 items. Dit is die eerste sodanige meetinstrument wat vir ‘n Suid-Afrikaans konteks ontwikkel is en maak dit vir diensgebruikers, met versorgers en direkte diensverskaffers, moontlik om die resultate van die meetinstrumentadministrasie te gebruik as ‘n beginpunt vir gesprekke oor die diensgebruiker se herstelproses. Die meetinstrument sou ook ‘n middel kon wees vir implementeerders van herstel-georiënteerde programme om te bepaal hoe deelnemers in hul herstelproses voortbeweeg, om aan befondsers verslag te doen om óf fondse te bekom, óf te behou. Die deurgaanse klem in die resultate op die deurslaggewendheid van verskeie vorme van ondersteuning tot herstel, dui op die nodigheid van die gepaste en omsigtige ontwikkeling van formele portuurondersteuningswerk vir Suid-Afrikaanse kontekste, wat uiteindelik op verskeie vlakke voordele mag inhou. Sleutelwoorde: geestesgesondheidsherstel, Suid-Afrika, definisie, hindernisse, fasiliteerders, meting, portuurondersteuningswerkDoctora

Hearing their voices : the lived experience of recovery from first-episode psychosis in schizophrenia

Thesis (MA)--Stellenbosch University, 2013.ENGLISH ABSTRACT: Recovery in schizophrenia was regarded, for a very long time, as a somewhat unattainable goal. In addition, the de-emphasis of the subjective experience of the person living with schizophrenia created an environment where studies on the experience of recovery was disregarded. The dawn of the civil rights movement in the 1960s paved the way for the recovery movement in mental health. A new emphasis was placed on the person living with schizophrenia and his or her individual experience. Together with this, the deinstitutionalisation of long-term patients following the introduction of anti-psychotic medication allowed for recovery in schizophrenia to become a more widely accepted concept. Against this background, this study seemed crucial and focused on how seven participants experienced their recovery from first-episode psychosis in schizophrenia. Each participant was interviewed twice, the interviews transcribed and then analysed with the use of Interpretative Phenomenological Analysis. It was found that support and its natural corollary, having to care for another, are possibly the greatest contributors to the recovery of persons faced with mental illness. Participants highlighted the important role of spirituality in their recovery, despite it being generally regarded as a controversial topic. Since spirituality has the ability to build resilience, it cannot and should not be overlooked. Stigma was found to be ingrained and pervasive, as it so often is for persons faced with mental illness. It can be a barrier to recovery. The retention or rediscovery of the abilities of those challenged by mental illness was seen as a determining factor for recovery, since it (re)introduces a sense of agency. In conclusion, and without fail, all the participants agreed that talking about their experiences aided them. This points to the fact that there can be no question as to the value of the narrative in the process of recovery.AFRIKAANSE OPSOMMING: Herstel (recovery) in skisofrenie is vir 'n lang tyd beskou as 'n ietwat onbereikbare doel. Hiermee saam is die subjektiewe belewenis van die persoon wat met skisofrenie saamleef al minder van waarde geag. Dit het 'n omgewing geskep waar die studie van die belewenis van herstel geminag is. Die opkoms van die burgerregtebeweging in die 1960s het die weg gebaan vir die herstelbeweging in geestesgesondheid. 'n Hernude klem is geplaas op die persoon wat met skisofrenie saamleef en sy of haar indiwiduele belewenis. Tesame hiermee, het die ontslag van langtermynpasiënte uit institusionele sorg as gevolg van die bekendstelling van anti-psigotiese medikasie daartoe gelei dat herstel in skisofrenie meer algemeen aanvaar is. Teen hierdie agtergrond is hierdie studie as noodsaaklik beskou en het dit gefokus op hoe sewe deelnemers hul herstel van „n eerste psigotiese episode beleef. Daar is twee onderhoude met elke deelnemer gevoer. Hierdie onderhoude is getranskribeer en daarna geanaliseer met behulp van Interpretative Phenomenological Analysis. Daar is gevind dat ondersteuning en daarmee saam, om „n ander te versorg, waarskynlik die grootste bydraende faktore is tot die herstel van persone wat deur geestessiektes uitgedaag word. Die deelnemers het die rol van spiritualiteit, wat dikwels as 'n omstrede onderwerp beskou word, beklemtoon. Aangesien dit kan bydra tot veerkragtigheid, kan en moet dit nie oorgesien word nie. Stigma is diepgewortel en deurdringend bevind, soos dit so dikwels is vir dié wat geestessiektes in die gesig staar. Dit kan 'n hindernis tot herstel wees. Die behoud of herontdekking van die vermoëns van dié wat deur geestessiektes uitgedaag word is 'n bepalende faktor, aangesien dit (weer) 'n gevoel van beheer oor die eie aksies (“sense of agency”) inlei, wat so deurslaggewend is tot herstel. Ter afsluiting, en sonder uitsondering, het al die deelnemers saamgestem dat om oor hul belewenisse te praat hulle gehelp het. Derhalwe, kan die waarde van die narratief in die proses van herstel nie betwyfel word nie

Competing allegiance in an unclear role: Peer and non-peer understanding of peer support in Massachusetts, United States

Lack of role clarity is a central challenge to the growth and retention of the peer workforce as peer support specialists (PSS) increasingly work alongside non-peer providers in traditional mental healthcare settings. This study examined role clarity among peer and non-peer workers and identifies areas of consensus and disagreement in understanding the peer role. Qualitative interviews were conducted with PSS (N = 18), non-peer direct care staff (N = 15), and non-peer clinical staff (N = 6) employed at two behavioral health organizations in the Northeast. Thematic analysis was conducted. Most non-peer staff have generally positive attitudes towards the inclusion of PSS in behavioral healthcare organizations, and task overlap was not indicated as problematic. Non-peer staff report and demonstrate a wide range of understanding but little clarity about the peer role, and peer staff themselves describe diverging descriptions of their own role. A consensus emerged regarding peer roles related to individual and group support, facilitating community integration, and relationship building. Key areas of disagreement include peer inclusion on clinical teams and role in service engagement. Competing peer and organizational ethos were identified as a central challenge of workplace integration. In sum, while peer tasks, roles, and responsibilities are perceived as valuable and non-overlapping with non-peer tasks, they remain ill-defined. Existing role tension is not based on task overlap but rather emerges from competing peer and organizational ethos and allegiances. Education and cultural humility among non-peer staff are critical to reducing interprofessional tension. Simultaneously, peer teams must develop cohesive peer ethos and role identity to ensure internal role clarity

Complexities in the process of translating research documents in cross-cultural settings

In multilingual societies, where researchers and participants often do not speak the same language, research is a challenge as a mismatch of understanding between researchers, research instruments and participants often occurs. Reporting on the translation process is crucial because of the potential implications for the validity of the data that follow from it. We aimed to report on the complexities of such a translation process and many considerations that came to our attention. Methodologically, we used a detailed case study to demonstrate that the complexity of translation might be underestimated by researchers who may neglect to report on the challenges that they experience to benefit the wider research community. We emphasise that translating documents, particularly between languages that are not cognate, requires time and financial resources that researchers often do not anticipate or plan for. By discussing what happened to texts that were translated, and how we as researchers were challenged by considerations that were primarily linguistic but also straddled cultural and socio-political domains, we hope to encourage a deeper understanding of the translation task. We conclude that consideration of these complexities is necessary if the aim is the development of translated documents which complement the researchers’ goals

The trouble with difference: Challenging and reproducing inequality in a biomedical HIV research community engagement process

Community engagement in biomedical trials is to ensure ethical conduct in research, yet it has been criticised regarding power and exploitation of vulnerable communities where trials take place. This makes community engagement processes complex. We report on one example of how the global politics of biomedical research and local issues of contemporary politics and identities intertwine in a community engagement process. These issues emerged during observations in staff training at a biomedical HIV prevention trial centre in South Africa from September to November 2015. Within the practices of the training sessions, the sessions had an unintended and not explicitly discussed purpose, termed the hidden project of creating a safe space for participants to discuss issues of difference. Examples are culture and greeting practices, culture and respect and the politics of language. Creating a space during training sessions where issues of power may be discussed is a prime example of community engagement. Engagement includes creating the space to discuss differences and collaborative bases. Processes of meaningful community stakeholder engagement, as illustrated by the training sessions, may contribute to combination prevention of HIV by promoting the integration of behavioural, sociocultural and biomedical efforts, and by a more developed understanding of power

Afri-Can Forum 2

CITATION: Mukudu, H., et al. 2016. Afri-Can Forum 2. BMC Infectious Diseases, 16:315, doi:10.1186/s12879-016-1466-6.The original publication is available at https://bmcinfectdis.biomedcentral.comENGLISH ABSTRACT: We are pleased to present peer reviewed forum proceedings of the 2nd synchronicity forum of GHRI/CHVIfunded Canadian and African HIV prevention and vaccine teams Forum objectives ∙GHRI-funded capacity building and HIV prevention research teams presented highlights of achievements ∙Teams discussed how to jointly build on achievements for sustainability ∙Provided an opportunity for inter-team collaboration, synchronize best approach to capacity building, mentoring of new researchers and building leadership ∙Provided opportunities for informal discussions and networking among the teams. ∙Teams learnt about recent advances in the area of African regulatory and ethics review process ∙The forum proceedings was a special supplement in an openaccess journal was producedhttps://bmcinfectdis.biomedcentral.com/articles/supplements/volume-16-supplement-2Publisher's versio

Critical care admission following elective surgery was not associated with survival benefit:prospective analysis of data from 27 countries

Purpose: As global initiatives increase patient access to surgical treatments, there is a need to define optimal levels of perioperative care. Our aim was to describe the relationship between the provision and use of critical care resources and postoperative mortality. Methods: Planned analysis of data collected during an international 7-day cohort study of adults undergoing elective in-patient surgery. We used risk-adjusted mixed-effects logistic regression models to evaluate the association between admission to critical care immediately after surgery and in-hospital mortality. We evaluated hospital-level associations between mortality and critical care admission immediately after surgery, critical care admission to treat life-threatening complications, and hospital provision of critical care beds. We evaluated the effect of national income using interaction tests. Results: 44,814 patients from 474 hospitals in 27 countries were available for analysis. Death was more frequent amongst patients admitted directly to critical care after surgery (critical care: 103/4317 patients [2%], standard ward: 99/39,566 patients [0.3%]; adjusted OR 3.01 [2.10–5.21]; p < 0.001). This association may differ with national income (high income countries OR 2.50 vs. low and middle income countries OR 4.68; p = 0.07). At hospital level, there was no association between mortality and critical care admission directly after surgery (p = 0.26), critical care admission to treat complications (p = 0.33), or provision of critical care beds (p = 0.70). Findings of the hospital-level analyses were not affected by national income status. A sensitivity analysis including only high-risk patients yielded similar findings. Conclusions: We did not identify any survival benefit from critical care admission following surgery

The surgical safety checklist and patient outcomes after surgery: a prospective observational cohort study, systematic review and meta-analysis

© 2017 British Journal of Anaesthesia Background: The surgical safety checklist is widely used to improve the quality of perioperative care. However, clinicians continue to debate the clinical effectiveness of this tool. Methods: Prospective analysis of data from the International Surgical Outcomes Study (ISOS), an international observational study of elective in-patient surgery, accompanied by a systematic review and meta-analysis of published literature. The exposure was surgical safety checklist use. The primary outcome was in-hospital mortality and the secondary outcome was postoperative complications. In the ISOS cohort, a multivariable multi-level generalized linear model was used to test associations. To further contextualise these findings, we included the results from the ISOS cohort in a meta-analysis. Results are reported as odds ratios (OR) with 95% confidence intervals. Results: We included 44 814 patients from 497 hospitals in 27 countries in the ISOS analysis. There were 40 245 (89.8%) patients exposed to the checklist, whilst 7508 (16.8%) sustained ≥1 postoperative complications and 207 (0.5%) died before hospital discharge. Checklist exposure was associated with reduced mortality [odds ratio (OR) 0.49 (0.32–0.77); P\u3c0.01], but no difference in complication rates [OR 1.02 (0.88–1.19); P=0.75]. In a systematic review, we screened 3732 records and identified 11 eligible studies of 453 292 patients including the ISOS cohort. Checklist exposure was associated with both reduced postoperative mortality [OR 0.75 (0.62–0.92); P\u3c0.01; I2=87%] and reduced complication rates [OR 0.73 (0.61–0.88); P\u3c0.01; I2=89%). Conclusions: Patients exposed to a surgical safety checklist experience better postoperative outcomes, but this could simply reflect wider quality of care in hospitals where checklist use is routine

Prospective observational cohort study on grading the severity of postoperative complications in global surgery research

Background The Clavien–Dindo classification is perhaps the most widely used approach for reporting postoperative complications in clinical trials. This system classifies complication severity by the treatment provided. However, it is unclear whether the Clavien–Dindo system can be used internationally in studies across differing healthcare systems in high- (HICs) and low- and middle-income countries (LMICs). Methods This was a secondary analysis of the International Surgical Outcomes Study (ISOS), a prospective observational cohort study of elective surgery in adults. Data collection occurred over a 7-day period. Severity of complications was graded using Clavien–Dindo and the simpler ISOS grading (mild, moderate or severe, based on guided investigator judgement). Severity grading was compared using the intraclass correlation coefficient (ICC). Data are presented as frequencies and ICC values (with 95 per cent c.i.). The analysis was stratified by income status of the country, comparing HICs with LMICs. Results A total of 44 814 patients were recruited from 474 hospitals in 27 countries (19 HICs and 8 LMICs). Some 7508 patients (16·8 per cent) experienced at least one postoperative complication, equivalent to 11 664 complications in total. Using the ISOS classification, 5504 of 11 664 complications (47·2 per cent) were graded as mild, 4244 (36·4 per cent) as moderate and 1916 (16·4 per cent) as severe. Using Clavien–Dindo, 6781 of 11 664 complications (58·1 per cent) were graded as I or II, 1740 (14·9 per cent) as III, 2408 (20·6 per cent) as IV and 735 (6·3 per cent) as V. Agreement between classification systems was poor overall (ICC 0·41, 95 per cent c.i. 0·20 to 0·55), and in LMICs (ICC 0·23, 0·05 to 0·38) and HICs (ICC 0·46, 0·25 to 0·59). Conclusion Caution is recommended when using a treatment approach to grade complications in global surgery studies, as this may introduce bias unintentionally