The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 22: Facilitating the Transitionidentify children who would benefit from a coordinated continuum of care. 31 Pediatric casemanagement should be considered whenever patient and family must interact with several groupsof care providers, such as outpatient clinic staff, clinical trials staff, and home care infusionstaff. Families need to have one central phone number to call for the majority of their assistanceand care guidance.Family-oriented case management is the optimal support. This includes assessment and interventionsfor the entire family as a unit. Family case management, similar to hospice case management,includes the multifaceted layers of practical assistance with support for the emotionaland social adjustments, and crisis intervention.Rural FamiliesFamilies living with advanced HIV disease in rural communities have unique problems, includinggeographic isolation and added caregiving responsibilities. When HIV advances to thepoint of disability, the entire family structure feels the strain of increased responsibilities. Resourcesthat are taken for granted in urban settings are scarce in rural settings. Professionalcaregivers as well as patients and their families are often isolated from the resources needed tohelp care for themselves. 32The barriers to advanced and palliative HIV care in rural communities are numerous, and includethe following:• Scarce home health and hospice agencies, with fewer staff than urbanagencies to provide home health, social work or respite services• Scarce resources resulting in fragmentation of care• Lack of professional emergency assistance due to geographic remoteness• Shortage of mental health professionals• Long distances to medical facilities such as clinics, hospitals and nursinghomes• Lack of health care professionals with advanced HIV care expertise• Fewer HIV-related services• Community social stigma toward those living with HIV• Home care and hospice agency reluctance to become known as the HIVprovider, fearing loss of other clients, staff, or community funders• Lack of transportation to needed services such as food, case management,counseling, group support, day care and respite services 33• Family financial strain due to limited work resources or land-dependentincomePoor rural families can live with extraordinarily limited resources. Some families still live inhomes without running water, telephones, electricity, indoor plumbing, or adequate clean food.Homes may have dirt floors or be overcrowded single-room houses or sheds that are not protectivefor severe weather conditions. Incest, substance abuse and alcohol abuse can be additionalstressors in remote communities. Cultural sensitivity must be developed in working with fami-XXIIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 473