In this article, I am going to share with you a case study of a 13years old child living with HIV AIDS with ‘three Nationalities’ (Chinese, Tanzanian and Kenyan). Both parents died with HIV/AIDS 10 years ago. He currently lives with a Kenyan grandmother. Late father and mother were Chinese and Tanzanian respectively.
By the time the child was born, both the grandmother of child (a Kenyan) was in Kenya. She was divorced to the grandfather of the child (a Tanzanian) who passed away one year later. Worse enough, as the child reached an age of 2 years, the father of the child returned to china where he also died. The child remained with her mother alone. At an age of 3 years, his mother became ill the situation which forced her mother (grandmother of the child) to travel from Kenya to Tanzania. Unfortunately the mother of the child died few days later. He remained with his grandmother alone. The grandmother new neither English nor Swahili language which could have facilitated communication with the neighbours. She could speak local language from Kenya only. By the help of a good Samaritan who saw the health status of the child, decided to bring the child at PASADA which is one of the best HIV/AIDS care and treatment centre in Tanzania.
Patient- and family-centered care is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families1. So far in Tanzania, no documentation has been made showing challenges of managing HIV positive children with multi-national originality.
Core Concepts of Patient- and Family-Centered Care1:
Dignity and Respect. Health care practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs, and cultural backgrounds are incorporated into the planning and delivery of care.
Information Sharing. Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete, and accurate information in order to effectively participate in care and decision-making.
Participation. Patients and families are encouraged and supported in participating in care and decision-making at the level they choose.
Collaboration. Patients, families, health care practitioners, and leaders collaborate in policy and program development, implementation, and evaluation; in health care facility design; and in professional education, as well as in the delivery of care
Before being enrolment in family cantered care, he had history of recurrent infection, poor drug adherence (> 1month) and poor attachment. This was due to poor social relation of the grandmother to the Tanzanian relatives. The child has faced difficulties in tracing relative for support. Language barrier of the guardian has led into poor adherence to Medication and general health hygiene.
Through family centred palliative care mode of service delivery, the issue of disclosure, proper attachment, adherence to drugs, nutrition and hygiene were addressed.
Within six months of intervention, the child has shown; improved adherence to medication, clinical presentation, good link with the family, academic improvement, reduced racial segregations to the child who looked Chinese-African, improved link with the community where the child has secured more assistance from the Tanzanian/Germany community organization.
Family cantered care is a teamwork program. You need to take heart in working with children with multiple problems. Involvement of the family and patient help them to be more responsible in taking care of the patient.