Economic impact of terminal illness and the willingness to change it.
OBJECTIVE
To gather pilot data on the economic impact of terminal illness on families and on the feasibility of training caregivers as a method of stemming illness-related poverty.


METHODS
Exploratory, descriptive study involving semistructured interviews with patient and caregiver dyads.


METHODS
Pallium India Palliative Care Clinic in Trivandrum, Kerala, India.


METHODS
Eleven patient-caregiver dyads (22 individual participants) visiting Pallium India in 2008.


METHODS
Trained interviewers conducted face-to-face interviews consisting of 114 questions with the patient and caregiver separately. Questions covered topics of economic impact of illness on household, family, and individual. Questions included if the illness had so impacted families that they needed to sell assets or significantly reduce work and/or schooling.


RESULTS
All families reported that patients were obliged to give up work as a result of illness. In seven families, the caregiver also had to change work habits. All respondents stated illness had forced them to sell assets. Ten households reported that their children were obliged to miss school due to the illness. All respondents indicated they would use trained caregivers to help with the care burden if available. Nine respondents thought that use of trained caregivers would have reduced or prevented some of the household's illness-related change. Nine caregivers said they would be interested in becoming a trained caregiver.


CONCLUSIONS
These data indicate that a definitive study would be feasible and would reveal how much assistance caregiver training could lend to household socio-economic resilience.
Emanuel
Natalia
N
Yale University, New Haven, Connecticut, USA. L-Emanuel@northwestern.edu
Simon
Melissa Andrea
MA
Burt
Michael
M
Joseph
Aneeja
A
Sreekumar
Nirmala
N
Kundu
Tapas
T
Khemka
Vivek
V
Biswas
Basudeb
B
Rajagopal
M R
MR
Emanuel
Linda
L
D000041:Absenteeism; D000328:Adult; D001294:Attitude to Health; D017028:Caregivers / Q000193:education / Q000523:psychology; D017281:Cost of Illness; D004651:Employment / Q000191:economics / Q000523:psychology; D005190:Family / Q000523:psychology; D005191:Family Characteristics; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D007182:Income / Q000706:statistics & numerical data; D007194:India; D008297:Male; D008489:Medical Indigency / Q000191:economics / Q000523:psychology; D008875:Middle Aged; D010865:Pilot Projects; D011203:Poverty / Q000191:economics / Q000517:prevention & control; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000191:economics / Q000523:psychology