'My dreams are shuttered down and it hurts lots’–a qualitative study of palliative care needs and their management by HIV outpatient services in Kenya and Uganda

Background

Despite the huge burden of HIV in sub-Saharan Africa, there is little evidence of the multidimensional needs of patients with HIV infection to inform the person-centred care across physical, psychological, social and spiritual domains stipulated in policy guidance. We aimed to describe the problems experienced by people with HIV in Kenya and Uganda and the management of these problems by HIV outpatient services.

Methods

Local researchers conducted in depth qualitative interviews with HIV patients, caregivers and service staff at 12 HIV outpatient facilities (6 in Kenya, 6 in Uganda). Interview data were analysed thematically.

Results

189 people were interviewed (83 patients, 47 caregivers, 59 staff). The impact of pain and symptoms and their causes (HIV, comorbidities, treatment side-effects) were described. Staff reported that effective pain relief was not always available, particularly in Kenya. Psychosocial distress (isolation, loneliness, worry) was exacerbated by stigma and poverty, and detrimentally affected adherence. Illness led to despair and hopelessness. Provision of counselling was reported, but spiritual support appeared to be less common. Neither pain nor psychosocial problems were routinely reported to service staff. Collaboration with local hospices and income-generation activities for patients were highlighted as useful.

Conclusions

The findings demonstrate the multiple and interrelated problems associated with living with HIV and how psychosocial and spiritual distress can contribute to 'total pain’ in this population. In line with the palliative care approach, HIV care requires holistic care and assessment that take into account psychological, socioeconomic and spiritual distress alongside improved access to pain-relieving drugs, including opioids.

     

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The motor and cognitive features of Parkinson’s disease in patients with concurrent Gaucher disease over 2 years: a case series

We report the cognitive features and progression of Parkinson’s disease (PD) in five patients with concurrent Gaucher disease. The patients presented at an earlier age than patients with sporadic PD, as previously noted by others; but in contrast to many previous reports, our patients followed a variable clinical course. While two patients developed early cognitive deficits and dementia, three others remained cognitively intact over the follow-up period. Thus, in this small case series, PD in the context of GD more closely resembles idiopathic PD in terms of its clinical heterogeneity in contrast to PD associated with GBA heterozygote mutations.     

Deletion of <Emphasis Type="Italic">Fas</Emphasis> protects islet beta cells from cytotoxic effects of human islet amyloid polypeptide

Aims/hypothesis  

Islet amyloid, which is mainly composed of human islet amyloid polypeptide (hIAPP), is a pathological characteristic of type 2 diabetes and also forms in cultured and transplanted islets. We used islet beta cells as well as two ex vivo models of islet amyloid formation, cultured human islets and hIAPP-expressing transgenic mouse islets with or without beta cell Fas deletion, to test whether: (1) the aggregation of endogenous hIAPP induces Fas upregulation in beta cells; and (2) deletion or blocking of Fas protects beta cells from amyloid toxicity.     

Predictors of knowledge and practice of exclusive breastfeeding among health workers in Mwanza city,northwest Tanzania

Background

Universal exclusive breastfeeding (EBF) for the first 6 months is estimated to reduce infant mortality by 13–15% (9 million) in resource poor countries. Although 97% of women initiate breastfeeding in Tanzania, exclusive breastfeeding for 6 months remains below 50%. Accurate knowledge and practical skills pertaining to exclusive breastfeeding among health workers is likely to improve breastfeeding rates. Our study reports the health workers’ knowledge and practice on EBF in Mwanza City, northwest of Tanzania.

Methods

One principal researcher and two research assistants conducted data collection from 11 June–6 July 2012. In total, 220 health care workers including: 64 clinicians (medical specialists, residents, registrars, assistant medical officers and clinical officers) and 156 nurses were interviewed using a structured knowledge questionnaire. Amongst 220 health workers, 106 were observed supporting Breastfeeding using a checklist. Logistic regression was used to determine factors associated with exclusive breastfeeding knowledge and desirable skills.

Results

Almost half of the 220 health workers interviewed correctly described EBF as defined by the World Health Organization. Only 52 of 220 respondents had good knowledge. In the adjusted analysis, working at hospital facility level compared to dispensary (OR 2.1; 95% CI 1.1–4.0, p-value?=?0.032) and attending on job training (OR 2.7; 95% CI 1.2–6.1, p-value?=?0.015) were associated with better knowledge. In total, 38% of respondents had a desirable level of practical skills. Clinicians were more likely to have good practice (OR 3.6; 95% CI 1.2–10.8; p-value?=?0.020) than nurses. Most of the health workers had no training on EBF, and were not familiar with breastfeeding policy.

Conclusion

Less than 25% of healthcare workers surveyed had good knowledge of EBF. These findings identify the need for comprehensive training and mentoring of health workers on exclusive breastfeeding, making breastfeeding policies available and understood, along with supportive supervision and monitoring.