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Home Care - 5.4 Home Care Activities
5.4 Home Care Activities
Observations and interviews conducted during this evaluation confirmed findings from a previous review, that approximately 80% of the HCT’s time is spent in contact with patients and families, including local travel to visit the patients. The remaining 20% of the time of the HCTs is spent on activities which are not directly related to patients. These activities include liaison with community leaders, monks, health centres and hospitals, participating in NGO and homecare team meetings, community-based IEC activities, identifying and establishing links with other community-based initiatives, etc.
The majority of the patient contact time takes place in the patient’s own living environment. Sometimes this is a permanent dwelling, but since the majority of the home care patients are extremely poor, the living environment is often a squatter settlement, a temporary shelter or a tarpaulin. Occasionally, patients visit the team at the health centre, and sometimes team members accompany patients to hospitals or testing centres.
Each HCT splits into two groups of 2 staff, and patients are visited by one of the groups an average of 3 times per month. The contact time with patients and families is devoted to providing the four main components of home care:
Each patient receives an average of three full home-care visits each month, with the actual number of visits, duration and activities performed being determined by the team according to the patient’s needs. In addition, because the geographical areas in which they work are generally small, the HCT will often just “look in” on patients as they pass their homes (38). Most patients are generally visited in this way at least once per week. Of the 100 patients interviewed during the evaluation, 98% said they were visited at least once per week and 84% said they were visited at least twice per week by the HCTs. Eighty eight per cent were happy with the frequency of visits they received, 11% wanted more visits, and 1% wanted less.
Given the present human resource capacity of the HCTs, maintaining the current number of visits places severe limitations on the number of patients who can be visited by the teams. Reviews with the teams indicate that 80 patients per team is a practical upper limit to their capacity, and most teams are now working at, or near to this limit.
Following the review of the project last year, checklists were developed for different types of home visits although the evaluation team did not observe these being used systematically.
In a typical “maintenance” visit, lasting approximately 20 minutes, the team reviews the physical, educational and emotional status of the patient and family, prescribes medication where appropriate from the Home Care Kit (see below), shows the patient and primary caregiver (if present) how to provide simple relief of symptoms, reinforces proper understanding of HIV/AIDS including prevention, and provides food and a small amount of money, where necessary, for transport to hospital and other material needs.
There are some emerging issues related to the provision of money by the HCTs to PLHA. At the onset of the project, the aim was to only provide small amounts of money against specific criteria, e.g. for transport to hospital, or in cases of destitution. While some HCTs still follow this approach, others provide a fixed sum (around $0.30) to every patient on each visit. It could be argued that the majority of PLHA visited by the HCTs are poor and vulnerable, and the provision of small sums of money is a major factor in maintaining the quality of life of patients and families. Furthermore, an increasing percentage of patients visited are women, who are likely to be more vulnerable and in need of financial support.
However, there is a risk that routinely providing money to PLHA is fostering financial dependency, with the HCT acting as a financial support service. It is therefore recommended that the HCTs return to the original remit of providing food and materials, but only providing money against specific criteria. These criteria should be agreed within the Home Care Network so they are consistent across teams.
It is recommended that HCTs should only provide money to PLHA against specific criteria which are agreed in consultation with the Home Care Network
The 100 patients interviewed in Phnom Penh during the evaluation were asked, in an open-response question, what are the most important things about home care visits. 34% mentioned money, 13% mentioned transport, 5% mentioned food and 9% mentioned other materials. Far more important in patients’ perceptions however, was the provision of medicine (mentioned by 58%), and the feeling provided by the visits of being cared for and not being isolated (30%), and the encouragement and hope provided by counselling (40%). 11% mentioned education about HIV/AIDS and the importance of good hygiene and nutrition as being among the most important things about the home care visits.
Participant observations of home care visits, and focus group discussions with the HCTs revealed that there is a fairly standard set of activities performed by the teams related to clinical management, nursing care and counselling. However, there is an increasing diversity, both within and across the teams, in activities related to social support and non-patient-related activities.
Examples of social support activities include establishing and maintaining support groups for PLHA, providing food and money, helping patients to find accommodation and work, shopping and cooking for bedridden patients, doing simple house repairs, referring patients to other medical services.
Examples of activities not directly related to patients include liasing with local authorities, religious leaders, community organisations, traditional healers, testing centres, hospitals and health centres, conducting community-based IEC sessions on HIV/AIDS, providing condoms and education to sex workers, finding homes for orphaned children, visiting families of deceased patients, organising and attending funerals.
The above lists of activities, which are not exhaustive, are provided to illustrate the existing, and increasing, responsibilities being undertaken by the home care teams, in addition to meeting ongoing needs of patients and families for effective clinical management, nursing care and counselling. There is clearly a limit to which the home care teams can continue to meet the increasing expectations of clients, particularly in view of the increasing client load as the epidemic expands.
It is recommended that the HCNG includes a module on “Managing Client Expectations” as part of the ongoing counselling training provided to HCTs.
As many of the home care teams are now working at their maximum recommended client load of 80 patients per team, there is a need to rationalise the way in which the teams operate. One solution may lie in expanding the involvement of volunteers in the programme, while another possible approach may be to improve linkages with social support organisations. These approaches will be explored further in sections 5.10 and 5.11of this report.
There is also perhaps a need to re-examine the balance between the four components of home care provision, and to revisit the primary role of the HCTs which is supporting the family to address their welfare problems rather than solving their problems for them. It is recommended that the Home Care Network Group initiates a review process, in which the roles and responsibilities of the Home Care Teams are re-examined and rationalised, and strategic priorities are agreed.
It is recommended that the HCNG initiates a review process to clarify and agree strategic priorities for home care activities and to rationalise the roles and responsibilities of the Home Care Teams.
Footnotes
(38) In determinng the average cost per visit, (see section 6.2) only the full home care visits were taken into account. Short encounters and social visits were not counted.
Observations and interviews conducted during this evaluation confirmed findings from a previous review, that approximately 80% of the HCT’s time is spent in contact with patients and families, including local travel to visit the patients. The remaining 20% of the time of the HCTs is spent on activities which are not directly related to patients. These activities include liaison with community leaders, monks, health centres and hospitals, participating in NGO and homecare team meetings, community-based IEC activities, identifying and establishing links with other community-based initiatives, etc.
The majority of the patient contact time takes place in the patient’s own living environment. Sometimes this is a permanent dwelling, but since the majority of the home care patients are extremely poor, the living environment is often a squatter settlement, a temporary shelter or a tarpaulin. Occasionally, patients visit the team at the health centre, and sometimes team members accompany patients to hospitals or testing centres.
Each HCT splits into two groups of 2 staff, and patients are visited by one of the groups an average of 3 times per month. The contact time with patients and families is devoted to providing the four main components of home care:
- Clinical Management to improve the physical well-being of patients. This includes taking patients to hospital and testing centres, providing rational treatment of HIV-related illnesses using the home care kit, where appropriate, and providing follow-up care.
- Nursing Care and health education to patients and care-givers to promote and maintain hygiene, nutrition and infection control, and providing palliative and terminal care to PLHA
- Counselling, including psychosocial support to PLHA and their families, to improve the emotional well being of patients and families by reducing stress and anxiety and promoting positive living and risk reduction strategies
- Social Support, including material assistance, providing education & information, strengthening links with the community, and referral to support groups and services in order to improve the social well-being of patients and families.
Each patient receives an average of three full home-care visits each month, with the actual number of visits, duration and activities performed being determined by the team according to the patient’s needs. In addition, because the geographical areas in which they work are generally small, the HCT will often just “look in” on patients as they pass their homes (38). Most patients are generally visited in this way at least once per week. Of the 100 patients interviewed during the evaluation, 98% said they were visited at least once per week and 84% said they were visited at least twice per week by the HCTs. Eighty eight per cent were happy with the frequency of visits they received, 11% wanted more visits, and 1% wanted less.
Given the present human resource capacity of the HCTs, maintaining the current number of visits places severe limitations on the number of patients who can be visited by the teams. Reviews with the teams indicate that 80 patients per team is a practical upper limit to their capacity, and most teams are now working at, or near to this limit.
Following the review of the project last year, checklists were developed for different types of home visits although the evaluation team did not observe these being used systematically.
In a typical “maintenance” visit, lasting approximately 20 minutes, the team reviews the physical, educational and emotional status of the patient and family, prescribes medication where appropriate from the Home Care Kit (see below), shows the patient and primary caregiver (if present) how to provide simple relief of symptoms, reinforces proper understanding of HIV/AIDS including prevention, and provides food and a small amount of money, where necessary, for transport to hospital and other material needs.
There are some emerging issues related to the provision of money by the HCTs to PLHA. At the onset of the project, the aim was to only provide small amounts of money against specific criteria, e.g. for transport to hospital, or in cases of destitution. While some HCTs still follow this approach, others provide a fixed sum (around $0.30) to every patient on each visit. It could be argued that the majority of PLHA visited by the HCTs are poor and vulnerable, and the provision of small sums of money is a major factor in maintaining the quality of life of patients and families. Furthermore, an increasing percentage of patients visited are women, who are likely to be more vulnerable and in need of financial support.
However, there is a risk that routinely providing money to PLHA is fostering financial dependency, with the HCT acting as a financial support service. It is therefore recommended that the HCTs return to the original remit of providing food and materials, but only providing money against specific criteria. These criteria should be agreed within the Home Care Network so they are consistent across teams.
It is recommended that HCTs should only provide money to PLHA against specific criteria which are agreed in consultation with the Home Care Network
The 100 patients interviewed in Phnom Penh during the evaluation were asked, in an open-response question, what are the most important things about home care visits. 34% mentioned money, 13% mentioned transport, 5% mentioned food and 9% mentioned other materials. Far more important in patients’ perceptions however, was the provision of medicine (mentioned by 58%), and the feeling provided by the visits of being cared for and not being isolated (30%), and the encouragement and hope provided by counselling (40%). 11% mentioned education about HIV/AIDS and the importance of good hygiene and nutrition as being among the most important things about the home care visits.
Participant observations of home care visits, and focus group discussions with the HCTs revealed that there is a fairly standard set of activities performed by the teams related to clinical management, nursing care and counselling. However, there is an increasing diversity, both within and across the teams, in activities related to social support and non-patient-related activities.
Examples of social support activities include establishing and maintaining support groups for PLHA, providing food and money, helping patients to find accommodation and work, shopping and cooking for bedridden patients, doing simple house repairs, referring patients to other medical services.
Examples of activities not directly related to patients include liasing with local authorities, religious leaders, community organisations, traditional healers, testing centres, hospitals and health centres, conducting community-based IEC sessions on HIV/AIDS, providing condoms and education to sex workers, finding homes for orphaned children, visiting families of deceased patients, organising and attending funerals.
The above lists of activities, which are not exhaustive, are provided to illustrate the existing, and increasing, responsibilities being undertaken by the home care teams, in addition to meeting ongoing needs of patients and families for effective clinical management, nursing care and counselling. There is clearly a limit to which the home care teams can continue to meet the increasing expectations of clients, particularly in view of the increasing client load as the epidemic expands.
It is recommended that the HCNG includes a module on “Managing Client Expectations” as part of the ongoing counselling training provided to HCTs.
As many of the home care teams are now working at their maximum recommended client load of 80 patients per team, there is a need to rationalise the way in which the teams operate. One solution may lie in expanding the involvement of volunteers in the programme, while another possible approach may be to improve linkages with social support organisations. These approaches will be explored further in sections 5.10 and 5.11of this report.
There is also perhaps a need to re-examine the balance between the four components of home care provision, and to revisit the primary role of the HCTs which is supporting the family to address their welfare problems rather than solving their problems for them. It is recommended that the Home Care Network Group initiates a review process, in which the roles and responsibilities of the Home Care Teams are re-examined and rationalised, and strategic priorities are agreed.
It is recommended that the HCNG initiates a review process to clarify and agree strategic priorities for home care activities and to rationalise the roles and responsibilities of the Home Care Teams.
Footnotes
(38) In determinng the average cost per visit, (see section 6.2) only the full home care visits were taken into account. Short encounters and social visits were not counted.