Browsing by Author "Harding, Richard"

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    Open Access
    A case study exploring an occupational perspective of social inclusion among young adults dually afflicted with substance use disorder and HIV/AIDS in Zimbabwe
    (2021) Nhunzvi, Clement; Galvaan, Roshan; Langhaug, Lisa; Harding, Richard
    Background: Curtailing adverse social determinants of health is pivotal to achieving the 2030 Agenda for Sustainable Development`s vision for a healthy and inclusive society. In Zimbabwe, fulfilling Vision 2030 may involve adopting socially inclusive approaches, particularly for young people dually afflicted with HIV and substance use disorders. However, social inclusion remains conceptually unclear and underutilized in relation to marginalized groups in low resource settings. This study sought to explore and understand how dually afflicted young adults with substance use disorders and HIV in Zimbabwe experienced and negotiated their social inclusion. Methods: This study utilised a qualitative instrumental case study design. Primary qualitative and quantitative data were collected to develop a thorough understanding of the case of an occupational perspective of social inclusion among dually afflicted young adults in Zimbabwe. The multiple methods used in this study included: i) narrative inquiry with five dually afflicted young adults; ii) in-depth interviews with five key informants; iii) document analysis of seven policies; and, iv) exploratory cross-sectional survey of social inclusion and associated factors (n=105). These multiple methods and sources contributed to the study`s trustworthiness. Multi-level case study analysis was applied as follows; 1st level: narrative analysis of each of the five young adults` stories, descriptive analysis of key informant interviews, document analysis and descriptive statistical analysis of the cross-sectional survey data. 2nd level: thematic case analysis drawing from all four data sources. 3rd level: theorised conceptual occupational constructs. Findings: Five narratives illustrated how using agency and having occupational choices were central to the young adults` experience and negotiation of social inclusion. The overarching Case theme was “Navigating an already troubled life: Striving for belonging and well-being”. This consists of three categories: 1) Dealing with a context of mixed realities, 2) Trying to adjust to new challenges and, 3) Life on the margins. These findings show how dually afflicted young adults in Zimbabwe respond and resist the influences of dominant discourses through dynamic and interconnected actions that shape their realities. Conclusion: The study describes and explains how dually afflicted young adults experienced and negotiated their social inclusion. The data affirms the role of agency and proposes a more critical view of occupational choice, activist occupational choice, in understanding social inclusion. As an emergent concept it is categorized by occupational choices, largely defying standard norms of engagement, and aims to break away from oppressive systems and problematic situations. Recognising the diverse manifestation of agency yields an appreciation for how occupations that are indigenous, collective, and resist oppression contributes to experiences of social inclusion.
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    An evaluation of a psychosocial intervention for orphans on HIV treatment: A phase II RCT of memory work therapy at PASADA, Tanzania
    (2015) Miti, Elvis Joseph; Harding, Richard
    Aim: Evidence shows high burden of psychosocial problems among orphaned children with HIV. Intervention studies have generally been conducted in developed countries. This mixed methods study aimed to determine whether Memory Work (MWT) Therapy 1 week group intervention improves outcomes for this complex population, in terms of their self-esteem, coping and psychological wellbeing compared to standard care, and to establish mechanisms of action. Method/Issue: An RCT Phase II of 48 Adolescents aged 14-18, full-orphaned AIDS on ART in Tanzania, with a waitlist control. Following (T0) baseline interviews, random allocation was for either intervention experimental condition (EC), or Control Condition (CC). All participated in second round of data collection (T1) at two weeks, and a final (T2) a month later. The EC children and caregivers participated in a focus group at T2. The CC then received the intervention 4 months later. Four questionnaires used, Brief Symptom Inventory (BSI), Rosenberg Self Esteem Scale (SES), Strengths and Difficulties Questionnaire (SDQ), and Self Efficacy Questionnaire (SEQ). Groups were compared at each time-point using multivariable linear regression controlling for baseline characteristics and group as independent variable, with change score as dependent variable. Qualitative data were subjected to thematic analysis to describe the experience of the intervention and how to refine it. Results/Comments: Significant differences favoured the EC at T1: BSI P<0.001, B=44.985, CI=25.5, 64.4), SDQ P=0.010, B=4.811, % CI 1.226, 8.396), SEQ both social scale P=0.015, B=-4.539, % CI-8.161,-0.918) and emotional scale P=0.002, B=-5.803 % CI-9.434, 2.171) (no effect for SES). At T2 we found these effects persisted: BSI P=0.001, B=46.668 %CI=21.541, 71.835), SDQ P=0.002, B=5.218 % CI 1.960, 8.476), SEQ both social scale P=<0.001, B=-7.791, % CI-11.320,-4.262) and emotional scale (P=<0.001, B=-9.007, % CI-12.032,-5.983). Additionally, at T2 found an EC effect for SES P<0.001, B=-4.392, %CI=-6.738,-2.046). The children recalled and described enjoying specific tasks within the intervention memory book, (such as "hero book" and the "tree of life") and described becoming "resilient" people. Discussion: The trial demonstrates improved outcomes in all measures for a complex population, i.e., bereaved children on treatment. Importantly, the effect did not attenuate and indeed self-esteem improved over time. The intervention should now be replicated in a fully powered trial.
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    An evaluation of the palliative care-related outcomes of a cohort of TB patients in a district hospital setting: a multiple methods quality improvement study
    (2013) Defilippi, Kathleen Mary; Gwyther, Liz; Harding, Richard
    Although curable, tuberculosis (TB) remains a serious health care problem. During 2011 there were almost 9 million new cases and 1.4 million TB deaths worldwide. The World Health Organisation (WHO) lists South Africa as a country with a high TB, HIV and MDR-TB burden. In this country the dual TB/HIV epidemic which has reached critical proportions is fuelled by the high TB/HIV co-infection rate. By definition the focus of palliative care is on the alleviation of suffering associated with lifelimiting illnesses. TB clearly falls into this category. The palliative care-related outcomes of a cohort of hospitalized TB patients were determined during this prospective longitudinal study and a quality improvement strategy was then generated from the audit data. The APCA POS, a validated outcome measurement tool was used to conduct weekly interviews. The audit sample comprised 57 patients with MDR-TB and 57 with drug responsive TB (n=114). The intensity of the multi-dimensional palliative care-related problems experienced by TB and MDR-TB patients on admission as well as the differences that occurred over time were measured over four consecutive weeks. In order to get staff perspectives on using the audit data to develop a quality improvement strategy, a report on the analyzed audit data formed the basis of a focus group discussion (FGD). The purposive sample of FGD participants included key members of staff from the TB and MDR TB wards. Audit findings indicated that on admission to hospital the predominant problems were pain, symptoms and worry. On a Lickert scale of 0-5 with 0 indicating best and 5 worst, the median score for both pain and other symptoms was 3.0, with an inter-quartile range of 2.00-4.25. Participants' worry about their illness attained the worst median baseline score of 4.0. Neither pain nor symptoms showed any sustained improvement over the four weeks of data collection. A statistically significant improvement in worry which moved from 4.0 to 2.0 occurred after week 1 but then remained static. An unexpected crucial finding was that the collective score for participants with drug responsive TB was worse than for those with MDR-TB for both the physical and psycho-social components, and at each time point. Using the APCA POS audit data as the basis of a FGD with key staff members resulted in the development of an appropriate palliative care-focused quality improvement strategy which they considered to be realistic and achievable within their busy hospital setting. Findings from this study support the recent WHO Declaration on the provision of palliative care for people with drug-resistant TB. Furthermore they clearly show that patients with drug responsive TB should not be excluded from a comprehensive palliative care person-centred approach. Palliative care within the context of TB is still an emerging concept. This study makes a meaningful contribution to the scarce information currently available. The topic is important in that the suffering experienced by vast numbers of TB patients and their families could and should be substantially relieved. It is suggested that it would be valuable to explore the impact of a palliative care approach on TB treatment outcomes.
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    Postgraduate Palliative care education: Evaluation of a South African Programme
    (2011) Ens, Carla D L; Chochinov, Harvey Max; Moses, Steven; Thompson, Genevieve; Gwyther, Elizabeth; Jackson, Catherine; Harding, Richard
    AIM: We aimed to assess the postgraduate palliative care distance education programme of the University of Cape Town (UCT) in terms of its perceived ability to influence palliative care delivery. METHODS: A mixed-methods approach, consisting of two surveys using open-ended and multiple-choice options, was conducted from January to December 2007 at the UCT School of Public Health and Family Medicine. All students registered in the programme from 2000 - 2007 were invited to participate; 83 (66.4% of all eligible participants) completed the general survey, and 41 (65.7%) of the programme's graduates completed the graduate survey. The survey scores and open-ended data were triangulated to evaluate UCT's palliative care postgraduate programme. RESULTS: General survey scores of graduates were significantly higher in 5 of the 6 categories in comparison with current students. The graduate survey indicated that curriculum and teaching strengths were in communication and dealing with challenging encounters. Graduates also stressed the need to develop a curriculum that incorporated a practical component. CONCLUSIONS: In addition to current postgraduate training, palliative care education in South Africa should be extended to undergraduate medical students, as the benefits of UCT's programme were limited to a small cohort of practitioners.
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    Quality of life among patients receiving palliative care in South Africa and Uganda: a multi-centred study
    (BioMed Central Ltd, 2011) Selman, Lucy; Higginson, Irene; Agupio, Godfrey; Dinat, Natalya; Downing, Julia; Gwyther, Liz; Mashao, Thandi; Mmoledi, Keletso; Moll, Tony; Sebuyira, Lydia; Ikin, Barbara; Harding, Richard
    BACKGROUND:Quality of life (QOL) is a core outcome of palliative care, yet in African settings there is a lack of evidence on patients' levels of QOL. We aimed to describe QOL among patients with incurable, progressive disease receiving palliative care in South Africa and Uganda, to compare QOL in cancer and HIV, to determine how domains of QOL correlate with overall QOL, and compare levels of QOL in this population with those in other studies using the same tool. METHODS: A cross-sectional survey was conducted using the Missoula Vitas Quality of Life Index (MVQOLI), a 26-item QOL questionnaire with five subscales (Function, Symptom, Interpersonal, Well being, Transcendent) covering physical, social, psychological and spiritual domains and one global QOL item. One item in each subscale assesses the subjective importance of the domain on a score from 1 (least important) to 5 (most important), used to weight the contribution of the subscale towards the Total QOL score. The tool was translated into 6 languages and administered to consecutively recruited patients at four facilities in South Africa and one in Uganda. RESULTS: 285 patients were recruited, with a mean age of 40.1; 197 (69.1%) were female. Patients' primary diagnoses were HIV (80.7%), cancer (17.9%) and other conditions (1.4%). The mean global QOL score was 2.81 (possible range 0 (worst) to 5 (best)); mean Total score 17.32 (possible range 0 to 30). Patients scored most poorly on Function (mean 0.21), followed by Well being (2.59), Symptoms (5.38), Transcendent (5.50), Interpersonal (9.53) (possible range for subscale scores -30 to 30). Most important to patients were: close relationships (mean 4.13), feeling at peace (4.12), sense of meaning in life (4.10), being active (3.84), physical comfort (2.58). Cancer patients were predominantly recruited at three of the sites; hence comparison with HIV-infected patients was restricted to these sites. HIV+ patients (n = 115) scored significantly worse than cancer patients (n = 50) on Well being (Z = -2.778, p = 0.005), Transcendence (Z = -2.693, p = 0.007) and Total QOL (Z = -2.564, p = 0.01). Global QOL score was most weakly correlated with Total QOL (r = 0.37) and the Transcendent subscale was most highly correlated (r = 0.77) (both p < 0.001). Patients receiving palliative care in South Africa and Uganda exhibited significantly poorer QOL compared to similar populations in the USA. CONCLUSIONS: Feeling at peace and having a sense of meaning in life were more important to patients than being active or physical comfort, and spiritual wellbeing correlated most highly with overall QOL. It is therefore vital to identify and meet the psychological and spiritual care needs of patients, as well as to assess and treat pain and other symptoms. Our finding that patients scored most poorly on the Function domain warrants further research.
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    Self-report measurement of pain & symptoms in palliative care patients: a comparison of verbal, visual and hand scoring methods in Sub-Saharan Africa
    (BioMed Central, 2014-08-02) Blum, David; Selman, Lucy E; Agupio, Godfrey; Mashao, Thandi; Mmoledi, Keletso; Moll, Tony; Dinat, Natalya; Gwyther, Liz; Sebuyira, Lydia M; Ikin, Barbara; Downing, Julia; Kaasa, Stein; Higginson, Irene J; Harding, Richard
    Background: Despite a high incidence of life-limiting disease, there is a deficit of palliative care outcome evidence in sub-Saharan Africa. Providers of end of life care call for appropriate measurement tools. The objective is to compare four approaches to self-report pain and symptom measurement among African palliative care patients completing the African Palliative Care Association African Palliative Outcome Scale (APCA African POS). Methods: Patients were recruited from five services (4 in South Africa and 1 in Uganda). Research nurses cross-sectionally administered POS pain and symptom items in local languages. Both questions were scored from 0 to 5 using 4 methods: verbal rating, demonstrating the score using the hand (H), selecting a face on a visual scale (F), and indicating a point on the Jerrycan visual scale (J). H, F and J scores were correlated with verbal scores as reference using Spearman’s rank and weighted Kappa. A Receiver Operating Characteristic (ROC) analysis was performed. Results: 315 patients participated (mean age 43.5 years, 69.8% female), 71.1% were HIV positive and 35.6% had cancer, 49.2% lived in rural areas. Spearman’s rank correlations for pain scores were: H: 0.879, F: 0.823, J: 0.728 (all p < 0.001); for symptoms H: 0.876, F: 0.808, J: 0.721 (all p < 0.001). Weighted Kappa for pain was H: 0.798, F: 0.719 J: 0.548 and for symptoms: H: 0.818, F: 0.718, J: 0.571. There was lower agreement between verbal and both hand and face scoring methods in the Ugandan sample. Compared to the verbal scale the accuracy of predicting high pain/symptoms was H > F > J (0.96–0.89) in ROC analysis. Conclusions: Hands and faces scoring methods correlate highly with verbal scoring. The Jerrycan method had only moderate weighted Kappa. POS scores can be reliably measured using hand or face score.
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    A systemic review to determine whether any validated dementia screening tools exist for use in pallaiative care populations in Sub-Saharan Africa
    (2014) Schneider, Suzanne Eva; Harding, Richard
    Do any validated dementia screening tools exist for use in palliative care populations in sub-Saharan Africa? Around the world populations have increased life expectancies. The tendency to develop dementia increases with age. By 2040, it is projected that more than 80 million people worldwide will suffer from dementia. Effective and validated dementia screening tools are used for screening and identifying people with dementia at an early stage, allowing for the possibility of earlier intervention. Validated tools are used internationally, but there is a need to determine if such tools have been validated for use in a sub-Saharan African palliative care population, which presents with the distinct challenges of literacy, language and culture. There is also a high incidence of HIV in sub-Saharan Africa, with a concomitant high prevalence of HIV-associated dementia. Sub-Saharan Africa therefore needs a unique, validated dementia screening tool for use in a palliative care population. Dementia causes a high burden of suffering for patients, their families, and communities. There is a similarity between many of the symptoms of cancer and dementia, although patients with dementia have a longer life expectancy. Palliative care is the cornerstone in the management of cancer patients and is therefore clearly ideal for people suffering from dementia. The World Health Organization, in their publication: "Palliative Care for Older People: Better Practices", state that people who suffer from dementia are in urgent need of improved palliative care services 2.2. Aim The aim of this systematic review was to identify validated dementia screening tools, and of those tools, to determine, specifically, whether they had been validated in a palliative care population in sub-Saharan Africa. This was done by following 3 objectives: Page 14 1. To identify which validated dementia screening tools are available. 2. To identify and isolate those tools which have been validated in sub-Saharan Africa. 3. To determine from those tools validated in sub-Saharan Africa, which have been validated in a palliative care population. To clarify, the aim of the study was to identify the validated tools, for dementia screening in sub-Saharan Africa, in a palliative care population. This study did not endeavor to conduct an in-depth analysis of the psychometric properties of the identified tools. 2.3. Methods The EBSCO, PUBMED, SCOPUS, Medline, Psych INFO, CINAHL and Africa-Wide Information databases were searched to identify dementia screening tools. The comprehensive search strategy focused on search terms in the categories of dementia, screening tools and subSaharan Africa. Included were all tools used to screen dementia in an adult population, provided the tools met one of the following validity criteria: face validity, or content validity, or concurrent validity as well as internal consistency. An abstract had to be available. The tool had to be peer reviewed, for use with human subjects, and in English. Exclusion criteria for the validated tools were: grey literature and the screening of children. 2.4. Results Stage 1 was to identify validated dementia screening tools internationally using the electronic databases listed above under methods. This search identified 116 articles written on global dementia screening tools. Stage 2 was performed on the same electronic databases to determine if any tools had been validated in sub-Saharan Africa. This search identified 8 articles on dementia screening tools validated in sub-Saharan Africa. The 3rd stage was to determine if any of the dementia screening tools from stage 2 had been validated in a palliative care population. In stage 3, 3 articles were identified all pertaining to the same dementia screening tool. The International HIV Dementia Scale (IHDS) was the only validated dementia r a g " I s screening tool found that had been validated in sub-Saharan Africa in an HIV population but not in a palliative care population. HIV can be seen as being included in a palliative care population. 2.5. Conclusion No validated tool was identified for the broad-based screening of dementia in sub-Saharan Africa in a palliative care population. The IHDS has been validated for use in screening for HIV-associated dementia in this region. This tool can still be used in the HIV population, but the author is of the opinion that the IHDS, as a screening tool for dementia, is not adequate in the general palliative care population. In the current clinical setting, the international gold standard tool for dementia screening, the Mini Mental State Examination (MMSE), is regularly used, and despite certain limitations associated with its use in the sub-Saharan Africa setting, the author recommends its continued use. The author recommends that the MMSE be revalidated for use in the sub-Saharan Africa palliative care population.
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    Treatment outcomes in palliative care: the TOPCare study. A mixed methods phase III randomised controlled trial to assess the effectiveness of a nurse-led palliative care intervention for HIV positive patients on antiretroviral therapy
    (BioMed Central Ltd, 2012) Lowther, Keira; Simms, Victoria; Selman, Lucy; Sherr, Lorraine; Gwyther, Liz; Kariuki, Hellen; Ahmed, Aabid; Ali, Zipporah; Jenkins, Rachel; Higginson, Irene; Harding, Richard
    BACKGROUND: Patients with HIV/AIDS on Antiretroviral Therapy (ART) suffer from physical, psychological and spiritual problems. Despite international policy explicitly stating that a multidimensional approach such as palliative care should be delivered throughout the disease trajectory and alongside treatment, the effectiveness of this approach has not been tested in ART-experienced populations.METHODS/DESIGN:This mixed methods study uses a Randomised Controlled Trial (RCT) to test the null hypothesis that receipt of palliative care in addition to standard HIV care does not affect pain compared to standard care alone. An additional qualitative component will explore the mechanism of action and participant experience. The sample size is designed to detect a statistically significant decrease in reported pain, determined by a two tailed test and a p value of [less than or equal to]0.05. Recruited patients will be adults on ART for more than one month, who report significant pain or symptoms which have lasted for more than two weeks (as measured by the African Palliative Care Association (APCA) African Palliative Outcome Scale (POS)). The intervention under trial is palliative care delivered by an existing HIV facility nurse trained to a set standard. Following an initial pilot the study will be delivered in two African countries, using two parallel independent Phase III clinical RCTs. Qualitative data will be collected from semi structured interviews and documentation from clinical encounters, to explore the experience of receiving palliative care in this context.DISCUSSION:The data provided by this study will provide evidence to inform the improvement of outcomes for people living with HIV and on ART in Africa.ClinicalTrials.gov Identifier: NCT01608802
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    Validation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale
    (BioMed Central Ltd, 2010) Harding, Richard; Selman, Lucy; Agupio, Godfrey; Dinat, Natalya; Downing, Julia; Gwyther, Liz; Mashao, Thandi; Mmoledi, Keletso; Moll, Tony; Sebuyira, Lydia; Panjatovic, Barbara; Higginson, Irene
    BACKGROUND: Despite the burden of progressive incurable disease in Africa, there is almost no evidence on patient care or outcomes. A primary reason has been the lack of appropriate locally-validated outcome tools. This study aimed to validate a multidimensional scale (the APCA African Palliative Outcome Scale) in a multi-centred international study. METHODS: Validation was conducted across 5 African services and in 3 phases: Phase 1. Face validity: content analysis of qualitative interviews and cognitive interviewing of POS; Phase 2. Construct validity: correlation of POS with Missoula-Vitas Quality of Life Index (Spearman's rank tests); Phase 3. Internal consistency (Cronbach's alpha calculated twice using 2 datasets), test-retest reliability (intraclass correlation coefficients calculated for 2 time points) and time to complete (calculated twice using 2 datasets). RESULTS: The validation involved 682 patients and 437 family carers, interviewed in 8 different languages. Phase 1. Qualitative interviews (N = 90 patients; N = 38 carers) showed POS items mapped well onto identified needs; cognitive interviews (N = 73 patients; N = 29 carers) demonstrated good interpretation; Phase 2. POS-MVQoLI Spearman's rank correlations were low-moderate as expected (N = 285); Phase 3. (N = 307, 2nd assessment mean 21.2 hours after first, SD 7.2) Cronbach's Alpha was 0.6 on both datasets, indicating expected moderate internal consistency; test-retest found high intra-class correlation coefficients for all items (0.78-0.89); median time to complete 7 mins, reducing to 5 mins at second visit. CONCLUSIONS: The APCA African POS has sound psychometric properties, is well comprehended and brief to use. Application of this tool offers the opportunity to at last address the omissions of palliative care research in Africa.
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    Wellbeing among sub-Saharan African patients with advanced HIV and/or cancer: an international multicentred comparison study of two outcome measures
    (BioMed Central Ltd, 2014) Harding, Richard; Selman, Lucy; Ali, Zippy; Powell, Richard; Namisango, Eve; Mwangi-Powell, Faith; Gwyther, Liz; Gikaara, Nancy; Higginson, Irene; Siegert, Richard
    BACKGROUND: Despite the high mortality rates of HIV and cancer in sub-Saharan Africa, there are few outcome tools and no comparative data across conditions. This study aimed to measure multidimensional wellbeing among advanced HIV and/or cancer patients in three African countries, and determine the relationship between two validated outcome measures. METHODS: Cross-sectional self-reported data from palliative care populations in Kenya, Uganda and South Africa using FACIT-G+Pal and POS measures. RESULTS: Among 461 participants across all countries, subscale "social and family wellbeing" had highest (best) score. Significant country effect showed lower (worse) scores for Uganda on 3 FACIT G subscales: Physical, Social + family, and functional. In multiple regression, country and functional status accounted for 21% variance in FACIT-Pal. Worsening functional status was associated with poorer POS score. Kenyans had worse POS score, followed by Uganda and South Africa. Matrix of correlational coefficients revealed moderate correlation between the POS and FACIT-Pal core scale (0.60), the FACIT-G and POS (0.64), and FACIT-G+Pal with POS (0.66). CONCLUSIONS: The data reveal best status for family and social wellbeing, which may reflect the sample being from less individualistic societies. The tools appear to measure different constructs of wellbeing in palliative care, and reveal different levels of wellbeing between countries. Those with poorest physical function require greatest palliative and supportive care, and this does not appear to differ according to diagnosis.