Households receiving help in caring for chronically ill young adults
This indicator aims to give a picture of the proportion of households touched by potentially HIV-related incapacity that are reached by home-based care or other community support programmes.
As health systems become strained to the breaking point by the HIV epidemic, the onus of providing care for those affected is in many countries being shouldered by families and communities. In some countries, the national AIDS programme and its partners are making an active effort to support families by providing services to reinforce home-based care.
These services range from psychological support to help with nursing, from provision of training to home caregivers to income substitution to compensate for lost earnings. These efforts, where they exist, frequently reach only a small proportion of those in need. One of the greatest challenges for countries promoting home-based and community care of people with AIDS is ensuring adequate coverage.
Number of households receiving unpaid help in caring for a person aged between 15 and 60 years who has been ill for more than three out of the last 12 months (or who was ill for three months before their death in the last 12 months) from any source other than family or neighbours
Total number of households caring for a person under 60 who has been ill for more than three out of the last 12 months, or who was ill for three months before their death in the last 12 months
Respondents in a population-based survey are asked whether anyone in their household has been too ill to work or perform their normal duties for three consecutive months or more out of the previous 12 months. The question should include people who have died within the past 12 months and who were incapacitated for at least three months before their death. Households that report incapacitated members are asked the age(s) of that/those person(s), and whether the household received any help in caring for them from sources outside the household. Those that received help are asked for the source of the help, and read a list of potential sources, including family members, church groups, village health care workers, hospital extension workers, traditional healers, private doctors, etc. Furthermore, for each source of help they are asked whether they paid for the help. The indicator is the number of households receiving unpaid help in caring for a person aged between 15 and 60 years who has been ill for more than three out of the last 12 months (or who was ill for three months before their death in the last 12 months) from any source other than family or neighbours, divided by the total number of households caring for a person under 60 who has been ill for more than three out of the last 12 months, or who was ill for three months before their death in the last 12 months.
Gender: Male, Female
Geographic location: N/A
Pregnancy status: N/A
Time period: N/A
Type of orphan: N/A
Vulnerability status: N/A
This indicator attempts to give an idea of the coverage of home-based care programmes by assessing the potential need and measuring the extent to which the need has been met. In doing so, it uses a measure of need which is at best imperfect. Not all households caring for sick people actually need outside help. And some may need help in caring for household members who are ill but have continued to work throughout much of their illness, so may not qualify under this measure. The indicator makes no attempt to distinguish between HIV and other serious illness, beyond restricting the age band to the ages in which the majority of sickness in high-prevalence areas is HIV-related. While it would be possible to ask about specific symptoms generally associated with HIV such as chronic diarrhoea, misreporting is likely to be substantial. It is clearly not possible to ask directly about HIV status. In fact, lacking this information is not critical inasmuch as it reflects a growing trend among home-based care programmes not to distinguish between HIV and non-HIV related illness. This trend has arisen because in some communities care services were causing problems because they branded their beneficiaries as HIV-infected.
The indicator does nothing to assess the quality of home-based care a much more vexing issue although clearly one of central importance to programmers. The question sequence does ask what types of care are provided, and the information can be used by programmers but is not included in the construction of the indicator. Where services are practically nonexistent, a measurable growth in coverage of any home-based care services may be counted a success. But clearly, measures of the quality of care must be developed.
Disaggregating this indicator by the sex of the chronically ill person may reveal differences in care seeking behaviour by families (or care services offered by providers) according to whether the sick person is male or female.
The indicator is useful only in generalised epidemics.