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Premium member Presentation Transcript Palliative CareStrengthening the Missing Links : Palliative CareStrengthening the Missing Links USAID Mini-University Ana Bodipo-Memba, USAID Karen Stewart, USAID Why should we care about palliative care? : Why should we care about palliative care? “While the growing “medicalization” of AIDS is in part because of the advent of effective treatment with the possibility of controlling viral replication and disease progression, the emergence of this more biomedical paradigm has resulted in a loss of perspective on chronic disease and the issues relevant to progressive incurable illness and end-of-life care.” – Peter Selwyn Palliative Care : Palliative Care Definition of palliative care Successes in palliative care The missing links Pain management Pediatric care Food and nutrition Caring for the caregiver Conclusions Definition of Palliative Care : Definition of Palliative Care …an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual (WHO, 2002) Why palliative care? : Why palliative care? Relieves pain and suffering Basic human right Helps to improve quality of life Enhances adherence to HAART Addresses psychological and social issues Introduces other therapies Creates a safe environment for conversations on death and dying Successes in Palliative Care : Successes in Palliative Care Increasing Palliative Care Associations More movement towards drug availability Further development of interdisciplinary teams Expansion of pediatric palliative care South Africa, Uganda, Zimbabwe and Tanzania Progression towards quality palliative care Development of tools for monitoring and evaluation Outcomes scales Hospice standards The Missing Links : The Missing Links Pain Management Pediatric Care Food and Nutrition Caring for the Caregivers Palliative Care is NOT : Palliative Care is NOT Supportive care without pain and symptom control Pain and symptom control without supportive care - Dr. Anne Merriman, Hospice Africa Uganda Pain Management : Pain Management 1.84 million people dying from HIV/AIDS in pain in Sub-Saharan Africa The prevalence and intensity of pain depends on the disease stage, increasing with the disease trajectory Amongst Stage 4 AIDS patients, pain is the most prevalent HIV-associated symptom ARVs can increase pain i.e. peripheral neuropathies Not all pain is physical pain Pain Management : Pain Management Pediatric Pain Management Children’s pain often not adequately addressed Lack of training of health care professionals Underutilization of pain management tools for children Enhanced WHO Public Health Model : Enhanced WHO Public Health Model Pain Management : Pain Management Country Examples Uganda Palliative care in National guidelines Dispensing privileges of oral morphine by nurses and clinical officers South Africa National palliative care guidelines Interdisciplinary training of palliative medicine professionals Food and Nutrition : Food and Nutrition Nutritional support of persons infected with HIV is necessary and helpful part of a therapeutic approach to palliative care Energy intake needs for HIV positive children increase by 50% to 100% over normal requirements Food and nutrition services in palliative care aims to: Improve the health/nutritional status of PLHIV Optimize PLHIV’s quality of life Food and Nutrition : Food and Nutrition Food and Nutrition Services offered in Palliative Care Supplementary Feeding Prevents or treats moderate malnutrition when there are no medical complications. Therapeutic feeding Treat severely malnourished children and adults Growth Monitoring Promotion (for children) Nutritional assessment Behavior Change and Communication Home gardens Food and Nutrition : Food and Nutrition Vulnerable Populations Pregnant and lactating women HIV infected pregnant women more susceptible to adverse pregnancy outcomes – low birth weight Infants and young child Loss of appetite and poor dietary intake are regarded as among the most important causes of growth failure or weight loss associated with HIV infected children Food and Nutrition : Food and Nutrition Sound practices The Food by Prescription Program is providing fortified blended flour supplement ($.30/day) and household water treatment to PLWHA patients with body mass index (BMI) <18.5, PMTCT women & OVCs at clinics Nutritional assessment & counseling by trained lay workers relieves medical staff Establishing linkages with home-based and community based care and support Food and Nutrition : Food and Nutrition WHO “Guidelines for an Integrated Approach to the Nutritional Care of HIV-Infected Children (6 months – 14 years)” Guidelines and job aids must be adapted and integrated within country guidelines for IMCI and pediatric care. Similar guidelines for nutritional care within integrated management of adult illness (IMAI) to be developed for adults & adolescents Pediatric Palliative Care : Pediatric Palliative Care Estimated 2.3 million children living with HIV/AIDS More than 90% of pediatric HIV infection occurs in sub-Saharan Africa and 75% of these children currently die before their 5th birthday Pediatric Palliative Care : Pediatric Palliative Care Providing multidisciplinary and multi-sectoral approaches Recognizing specific needs of children that differ from adult needs Acknowledging and accepting that children die Pediatric Palliative Care : Pediatric Palliative Care Multiple obstacles that prevent children being provided care and treatment: Pediatric formulations not optimal and widely available Lack of policies, protocols and knowledge Feelings of fatalism and hopelessness toward treating HIV-infected children Pediatric Palliative Care : Pediatric Palliative Care Critical Non-ART Interventions for children Immunizations Micronutrient Supplementation and Nutrition Counseling Breastfeeding Counseling for HIV-Exposed Infants Prevention and Treatment of Endemic Infections Malaria Prevention and Treatment of Opportunistic Infections PCP Prophylactic use of an antibiotic Cotrimoxazole Pain relief Emotional Support Caring for Caregivers : Caring for Caregivers Who are the caregivers? Formal Trained health professionals Informal Typically women, relatives, friends and neighbors Caring for the Caregiver : Caring for the Caregiver Informal caregiver challenges Role changing Physical demands Emotional stress Financial impact Multiple demands on time Caring for the Caregiver : Caring for the Caregiver Formal caregiver challenges Increasing patient loads Compromised financing Burn-out/turnover Inadequate support and training Ethical dilemmas Stigmatization Caring for the Caregiver : Caring for the Caregiver Solutions Empowering and educating caregivers Developing support and supervision Team work Group counseling Encouraging self-care, monitoring and early recognition of burn-out and distress Slide 27: “If we become [solely] ARV specialists then we lose our ability to provide patients with comprehensive care they need. The science and evidence-based of palliative medicine have much to offer in improvement of quality of life and relief of suffering and enhancement of disease-specific therapy, expert end-of-life care and coping with chronic, progressive illness for patients and their loved-ones.” --Peter Selwyn Thank you : Thank you Ana Bodipo-Memba Co-chair USG Palliative Care Technical Working Group USAID/Washington Abodipofirstname.lastname@example.org 202-712-4491 Karen Stewart Strategic Planner USAID/Washington email@example.com 202-712-5134 You do not have the permission to view this presentation. In order to view it, please contact the author of the presentation.