S9) Kinship and Care HIV/AIDS

by Hansjörg Dilger

what types of care are there for HIV/AIDS patients in Tanzania?

• public hospitals: overfilled and understaffed, health staff often insufficiently trained, most new patients are dismissed

• private hospitals: too expensive for the general public

• NGO’s: have certain requirements, like speaking openly about the diagnosis (clashes with families’ and patients wishes of dealing with the illness)

• → care of HIV/AIDS patients is done by their family

  • family receives minimal support, visits by helth staff, medical treatment of opportunistic infections

  • families: overwhelmed, emotional strain vs. patient: shock, self-blame, anger, depression → discordant relationships between family and patient

• care = all decisions made by and outside of households with regard to HIV/AIDS-related ilness and deaths of family members

• guidelines of care exist but don’t reflect the situatedness in the specific relations between caregivers and patients, they rather see themselves in their social role as siblings, parents and child, etc.

• care is embedded in the healthcare of Tanzania and in the social and cultural processes

what are the difficulties of field work concerning HIV/AIDS?

• HIV tests are done in secret → either only patient knows and family doesn’t or other way around, told to keep quiet about it

  • secret in fear of stigmatization and rejection by their family and community

→ makes it difficult to know for sure who is affected, because most are not ready to talk about it openly → source of information are rumours

• difficult to identify the exact circumstances, are relationships affected by diagnosis or other intra-familial conflicts

• ethical question: how far can i go as a researcher? am i causing more fear/hurt than helping?

important aspects of HIV/AIDS

• difficult health-care situation

• effects of the diagnosis on the patient and the family

• mostly mothers take over the care

• relationships of care and support are embedded in family biographies and conflicts of the past

• series of illness in one family: attributed to chira, witchcraft or curses

• individ and collective experiences with the illness are constantly changing in tandem to a series of cases of illness and death

• essential to explore in detail all meanings and practices surrounding a family’s current struggles over illness, death, etc to understand care more thoroughly

disease vs illness

disease:

• biological, diagnosable, scientifically explainable infection (virus, bacteria, etc.)

illness:

• experience with disease, how one is treated with the diagnosis by others, effect on your social life

can you have a disease and not an illness? and the other way around?

• YES. disease but no illness: no physical impact, disease not visible to outside; illness but no disease: family of infected person, stigmatization of queer people, undiagnosed people, people to be rumoured to have an infection

different approaches of medical anthro

interpretive-constructivist approach: Arthur Kleinman

• focus on clinical reality: belief, expectations, norms, behaviours, communicative acts and healer-patient-relationships

• meaning centered approach

• disease/illness

critical medical anthro: Allan Young

• critique on focus on health seeking behaviour and individualised experience with sickness (illness)

• sickness as socialisation

• critiques that other approach views sickness as disconnected from politics, when in reality age, gender, status, race, class, etc. influence your experience with sickness/determine the care you get and how you deal with sickness

• local, global and national dimensions

history of medical anthro (early beginnings)

• deeply entwined with religious anthro:

  • focus on misfortune and affliction in structural functionalist religion anthro

  • witchcraft (Evans-Pritchard), healing rituals (Victor Turner)

• social relations and crisis in focus

• suffering as analytical entry point - NOT as primary subject of interest

history of med anthro (since 1950s)

• 1950s: med anthro was founded

• contexts: postcolonial transformations and international development, clinical challenges at home

• today: biggest sub-discipline of US anthro

• why? anthro theory and method as starting point for analysing social and cultural dimensions of medicine-related topics

general terms and concepts

1 sickness/health/well-being

2 diagnosis

3 therapy/healing

4 medical systems: all institutions, ideas and practices that are connected to health, sickness and healing in a society

types of medical traditions

1 humoral/balance medicine → ancient medical theory, proposed that health relies on the balance of four bodily fluids (humors): blood, phlegm, yellow bile, and black bile. disease was thought to result from an imbalance of these fluids, rather than external pathogens. 

2 punitive medicine → abuse of medical and psychiatric practices to punish, silence, or detain individuals, particularly political dissidents, rather than for genuine therapeutic purposes

3 biomedicine → branch of medicine concerned with the application of the principles of biology and biochemistry to medical research or practice, school medicine, ‘modern’ medicine

applied med anthro

• clinical settings: treatment situation and communication, compliance

• global public health: cultural sensibilty of prevention campaigns

• goal: collect local knowledge, disclose discrepancies between prevention measures and health behaviour

• CRITIQUE: missing distance to public health paradigm, missing inclusion of political-economical factors

→ the practical application of anthropological theories and ethnographic methods to address real-world health problems, improve healthcare delivery, and reduce health disparities