title: Living with AIDS in Uganda: a qualitative study of patients' and families' experiences following referral to hospice.
abstract: BACKGROUND
  Globally, the majority of people with HIV/AIDS live in sub-Saharan Africa. While the increasing availability of antiretroviral therapy is improving the outlook for many, its effects are yet to reach all of those in need and patients still present with advanced disease. This paper reports findings from qualitative interviews with patients living with AIDS and their caregivers who were receiving palliative care from Hospice Africa Uganda (HAU). We aimed to understand what motivated patients and their families to seek formal healthcare, whether there were any barriers to help- seeking and how the help and support provided to them by HAU was perceived.
  
  
  METHODS
  We invited patients with AIDS and their relatives who were newly referred to HAU to participate in qualitative interviews. Patients and carers were interviewed in their homes approximately four weeks after the patient's enrolment at HAU. Interviews were translated, transcribed and analysed using narrative and thematic approaches.
  
  
  RESULTS
  Interviews were completed with 22 patients (10 women and 12 men) and 20 family caregivers, nominated by patients. Interviews revealed the extent of suffering patients endured and the strain that family caregivers experienced before help was sought or accessed. Patients reported a wide range of severe physical symptoms. Patients and their relatives reported worries about the disclosure of the AIDS diagnosis and fear of stigma. Profound poverty framed all accounts. Poverty and stigma were, depending on the patient and family situation, both motivators and barriers to help seeking behaviour. Hospice services were perceived to provide essential relief of pain and symptoms, as well as providing rehabilitative support and a sense of caring. The hospice was perceived relieve utter destitution, although it was unable to meet all the expectations that patients had.
  
  
  CONCLUSIONS
  Hospice care was highly valued and perceived to effectively manage problems such as pain and other symptoms and to provide rehabilitation. Participants noted a strong sense of being "cared for". However, poverty and a sense of stigma were widespread. Further research is needed to understand how poverty and stigma can be effectively managed in hospice care for patients for advanced AIDS and their families.
authors.affiliation: Kabarak University, School of Medicine and Health Sciences, P O Private Bag-20157 Kabarak, Nakuru, Kenya. wtoo@kabarak.ac.ke.
authors.forename: Wesley
authors.initials: W
authors.lastname: Too
authors.affiliation: School of Health Sciences, University of Nottingham, Queen's Medical Centre, Derby Road, Nottingham, NG7 2UH, UK. michael.watson@nottingham.ac.uk.
authors.forename: Michael
authors.initials: M
authors.lastname: Watson
authors.affiliation: The Cicely Saunders Institute, Bessemer Road, Kings College, London, SE5 9PJ, UK. richard.harding@kcl.ac.uk.
authors.forename: Richard
authors.initials: R
authors.lastname: Harding
authors.affiliation: School of Health Sciences, University of Nottingham, Queen's Medical Centre, Derby Road, Nottingham, NG7 2UH, UK. jane.seymour@nottingham.ac.uk.
authors.forename: Jane
authors.initials: J
authors.lastname: Seymour
mesh_terms: D000163:Acquired Immunodeficiency Syndrome / Q000523:psychology* / Q000628:therapy; D000293:Adolescent; D000328:Adult; D005190:Family / Q000523:psychology*; D005260:Female; D017051:Hospice Care / Q000592:standards*; D006801:Humans; D008297:Male; D008875:Middle Aged; D011203:Poverty / Q000523:psychology; D036301:Qualitative Research; D057545:Social Stigma; D014454:Uganda