CARE MANUAL FOR HOME BASED CARERS … · PAEDIATRIC PALLIATIVE CARE MANUAL FOR HOME BASED CARERS...

PAEDIATRIC PALLIATIVE

CARE MANUAL

FOR HOME BASED CARERS


CARE MANUAL


E n h a n c i n g

I n i t i a t i v eCARE

Nelson R Mandela School of Medicine

UNIVERSITY OF

KWAZULU-NATAL


CARE MANUAL



CARE MANUAL



CARE MANUAL




CARE MANUAL

© Copyright 2005 The Authors: Nicola Willis, Marcus McGilvray

Lisa McNally, Robert Pawinski.

Not for use for profit.

For widespread dissemination in the NGO

and Public Health Sector.

Cover Photograph: © Roger de la Harpe. Used with permission.

Please contact for comments, suggestions or [email protected]

Authors: Nicola Willis, Marcus McGilvray

Lisa McNally, Robert Pawinski.

ISBN 1-86840-559-1

1st Edition, May 2005

PAEDIATRIC PALLIATIVECARE MANUAL


Acknowledgements

Made possible with a grant from

the British High Commission, Pretoria, RSA, Small Grants Scheme.

A collaboration between the Enhancing Care Initiative, KZN PLUS,

the Nelson R Mandela School of Medicine,

South Coast Hospice, AFRICAID

and the Institute of Child Health, London.

Paediatric Palliative Care Manual for Home Base Carers 2

Contributors Nicola Willis BN (Hons) Paediatric HIV Specialist Nurse Africaid – A Trans-African HIV Nursing Expedition Durban, South Africa [email protected] Marcus McGilvray BA (Hons) Adult HIV Specialist Nurse Africaid – A Trans-African HIV Nursing Expedition Durban, South Africa

and PO BOX 7012 Northampton, NN3 3YH, UK www.africaid.co.uk

Lisa McNally BSc (Hons) MRCPCH DTM&H Centre for International Child Health Institute of Child Health London UK. WC1N 1EH and

Department of Paediatrics Nelson R Mandela School of Medicine University of KwaZulu-Natal Durban, South Africa 4013 E-mail: [email protected]

Dr Robert Pawinski MB BChb (UCT), DipOBS (SA), DTMH (LSHTM) Director, Enhancing Care Initiative KZN Plus Doris Duke Medical Research Institute Nelson R Mandela School of Medicine University of KwaZulu Natal Durban, South Africa 4013 E-mail: [email protected] We would also like to thank the following people and organisations for their participation and support: Kath Defilippi and the South Coast Hospice team in Port Shepstone, South Africa The Community Hospice, New York - South Coast Hospice's US partner, particularly Dr Jennifer Pearce, Paediatric Oncologist Business Connexion, South Africa This manual has been greatly aided in its development by the generous donation of photographic material from: • Teaching-aids at Low Cost – UK (TALC-UK) All rights reserved • Frank Hijlkema, The Netherlands • CDC Image Library Note: The inclusion of a child’s photograph in this manual does not imply that they are HIV infected.

Paediatric Palliative Care Manual for Home Bases Carers 3

Foreword In Sub-Saharan Africa, and other resource constrained settings, mother-to-child transmission is, after heterosexual transmission of HIV, the most common form of transmission. This burden of new disease in an already under-privileged population by health services in resource constrained settings, potentially threatens the optimal health of children, and sabotages the future generation of populations. Priorities are often given to adult patients, given the large numbers and greater demand for access to health care. This manual is one of the first of its kind in Southern Africa to address these needs by bringing together partners and resources from various sectors to address local needs on the ground. The request from South Coast Hospice, and the co-incidental availability of human capacity from Africaid and the Institute of Child Health, London, geared funds from the British High Commission, South Africa to ensure the initiation of the transfer of skills to trainers in a potentially sustainable Paediatric Palliative Care Manual for Home Based Carers. The hope is that this manual is widely used throughout resource constrained settings by the public and NGO sector, assisting trainers to train Home Based Carers in the delivery of quality, comprehensive palliative care for children and their families living with HIV and AIDS. Dr Robert Pawinski Director, Enhancing Care Initiative KZN Plus


Table of Contents Introduction 7 Modules 9

• Module 1: HIV in Children 9

• Module 2: Role of The Home Based Carer 19

• Module 3: Impact of HIV on Children 30

• Module 4: Helping Children to Cope with HIV 37

• Module 5: Talking With Children about HIV 46

• Module 6: Nutrition in Children with HIV 56

• Module 7: Medicines for Children 69

• Module 8: Pain 79

• Module 9: Skin Problems 89

• Module 10: Oral Problems 98

• Module 11: Fever 105

• Module 12: Acute Respiratory Infections 113

• Module 13: Diarrhoea and Dehydration 117

• Module 14: Neurological Problems 125

• Module 15: Danger Signs 131

• Module 16: Antiretroviral Drugs 135

References 148

Resources 150

Appendices 151

• Appendix i: Suggested Training Programme 151

• Appendix ii: Course Evaluation Form 152

• Appendix iii: Home Based Care Givers Scope of Practice 154

• Appendix iv: Pain Rating Scales for Children 155

• Appendix v: IMCI Guidelines (2002)

Management of a Child with Diarrhoea 156

• Appendix vi: Manual Evaluation – Help us improve this manual! 157


Introduction A. Background to the Development of this Manual The HIV pandemic shows no signs of abating and Sub-Saharan Africa continues to bare the brunt of this disease. The effect on children in the region is devastating. It is estimated that there are 2.1 million children living with HIV around the world. 1.9 million of these children live in Sub-Saharan Africa. As the pandemic progressed last year, 5.2 million children in this region became orphans (UNAIDS, UNICEF, UNAIDS, 2004). South Africa remains home to the highest number of people living with HIV. With 5.1 million people infected with the virus, the country’s children are facing the full impact of this disease. 230,000 South African children are estimated to be living with HIV and 1.1 million children have been orphaned (UNAIDS, 2004). It has been estimated that 90,000 HIV infected infants are born annually in South Africa (South African Department of Health, 2003). Latest research found HIV prevalence in South African children aged 2 to 18 years to be 5.4% (Brookes et al, 2004). Kwa-Zulu Natal is particularly hard hit. In 2002, 36.5% of pregnant women booking for antenatal care were HIV-1 infected. Infected children and their care givers commonly face the profound physical, emotional and social impact of HIV with little professional care and support. With an increasing number of parents dying from HIV, the care of orphaned children continues to fall on the extended family. The burden of care for a sick child is often met by an elderly grandmother or brother/sister of the child, who themselves are often children. The effect on these children and their families is catastrophic. It has been shown that Home Based Care programmes can help to ensure that people with HIV in resource limited settings have access to compassionate care and support within their own homes. While these programmes have traditionally focused on the needs of adults, the quality of life for children with HIV can be dramatically improved through comprehensive home based care. As children are physically and emotionally different to adults they require care and support that is sensitive to these differences. South Coast Hospice, Port Shepstone and Church of Scotland Hospital, Tugela Ferry are pioneers of Home Based Care Programmes, with extensive experience in training and supervising Home Based Carers in the delivery of palliative care for adults with HIV in their own homes. In response to the growing number of children with HIV in their care, both centres are rising to the immense challenge of providing home based palliative care for children infected with HIV in Kwa-Zulu Natal. This training programme has been designed and developed with the intention of equipping Home Based Carers with the skills, knowledge and tools required to offer the highest standard of care for children with HIV. Home Based Carers are at the forefront of palliative care for people with HIV in South Africa. Training and support for these carers is pivotal to the provision of optimal care for children with HIV.


B. Aim of the Training Manual This manual will provide trainers with all the materials and resources needed to deliver effective training sessions and in turn enable Home Based Carers to:

• Recognise the diverse needs of children with HIV, across the continuum of care from diagnosis to end of life care

• Recognise the immense need of primary care givers/ family for support in

the care of an infected child • Recognise and assess common signs and symptoms associated with HIV

infection in children • Make prompt referrals to the Professional Nurse Supervisor or local clinic • Manage symptoms as supervised by the Professional Nurse, within the

Home Based Carer’s scope of practice • Ensure prioritisation and follow-up of children where applicable • Educate primary care givers how to assess their child’s health and identify

symptoms requiring intervention • Educate primary care givers about Infection Control • Communicate in a child-sensitive manner, conducive to assessing and

meeting the needs of each individual child

• Understand some of the immense challenges faced by children taking ARVs

• Provide support for children on ARVs and their families This manual has been designed as additional training for Carers with prior training in Home Based Care. The content of this manual is therefore specific to the care of children with HIV/AIDS. C. Training Course Modules The training programme comprises 16 modules, addressing the physical, social and psychological issues impacting on children with HIV. Ideally, the course will be enhanced with a ward teaching session where theory may be put in to practice.

Module 1: HIV in Children Module 2: Role of the Home Based Care Giver Module 3: Impact of HIV on Children Module 4: Helping Children to Cope with HIV Module 5: Talking with Children about HIV Module 6: Nutrition Module 7: Medicines for Children Module 8: Pain Module 9: Oral Problems Module 10: Skin Problems Module 11: Fever


Module 12: Acute Respiratory Infections Module 13: Diarrhoea and Dehydration Module 14: Neurological Problems Module 15: Danger Signs Module 16: Antiretroviral Drugs for Children

D. Use of the Manual This training manual has been designed to provide trainers with a flexible tool which may be utilized and adapted according to their specific needs. The course can be delivered as a whole or used in part, according to the needs of the Home Based Carers and the time available. Each module contains: Learning objectives: to inform trainer and trainees of module content and expected learning outcomes PowerPoint presentations with accompanying lecture notes: to assist trainers in the delivery of training sessions Interactive, participatory exercises: are included within the slide notes to reinforce slide content The manual also contains: Reference and Resource List: to provide trainers with further background information for the preparation and delivery of training sessions Suggested Training Program Itinerary: to provide trainers with a time frame for the delivery of individual modules and the training in its entirety (Appendix i). Course Evaluation Forms: to provide course developers and trainers with a means of evaluating the suitability and effectiveness of course content and training methods in addressing the training needs of Home Based Carers (Appendix ii). Home Based Care Givers Scope of Practice: as defined by South Coast Hospice (2003) (Appendix iii). The Manual is accompanied by: A Workbook for trainees, containing all slides form each module CDRom containing the Trainers Manual, Trainees Workbook and 16 Powerpoint Slide Presentations

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