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Restoring Hope: Decent Care in the midst of HIV/AIDS by Editors: Ted Karpf, Todd Ferguson, Robin Swift, Jeffrey V. Lazarus

2008; Wiley; Volume: 9; Issue: s2 Linguagem: Inglês

10.1111/j.1468-1293.2008.00589.x

1468-1293

Ted Lankester,

Religion, Society, and Development

Restoring Hope is arrestingly different from other books on HIV. The 20 diverse contributions are radical and distinctive, spiritual and humanitarian, practical and intelligent. While embracing a wide range of approaches, the ideas distil a remarkably unified purpose of approach and action. Two assumptions underlie this book. The first is that faith-based entities are key providers of healthcare in most countries where HIV is prevalent. The second is that faith itself is intimately woven into the lives and lifestyles of most people living with HIV in developing countries. Several themes are reiterated through this intriguing library of essays. The first is found within the title itself. Decent care is profound, simple and comprehensive. Its profundity is brilliantly explored in the foreword. Karpf describes decent care as an approach that is holistic and inclusive: where individuals are afforded dignity and destigmatized space to take control of their own destinies. Its simplicity is described by d'Adesky: ‘We must imagine ourselves as a person living with HIV and then consider what care and health-related services we would need, expect and want.’ Its comprehensiveness is described by Mombo. Decent care includes physical, preventative, therapeutic, economic, emotional and spiritual aspects as a ‘care continuum’. The second theme is the centrality of faith and spirituality. Two key ingredients common to all faiths are listed by Dossey as compassion and empathy – the latter defined as ‘to understand and to enter into another's feelings’. Panichpant-Michelsen states: ‘[Buddhist] practice can replace the feelings of being a victim with becoming a victor.’ Elzenari reminds us that Mohammed talks specifically about visiting patients to identify with them and care for them. Agnivesh quotes Gandhi's favourite bhajan (hymn) stating that a devotee must first understand pain before being able to ‘do the good’. Ackermann speaks of Jesus sweeping away stigma and exclusion as he lights the way to all who follow. The third theme is the concept of agency. Crain and Tashima describe how power must shift from the provider to the person living with HIV. They describe agency in terms of the ‘Centrality of the Affected Person’. Agency is distinct from empowerment, which implies power derived from others. Rather it is the right and dignity inherent to anyone in a position of vulnerability to own their individual response. In the midst of such ideas and concepts, Mendieta plunges us into reality through his evocation of urban poverty where HIV proliferates. The slums –‘the megalopoles of the developing world are cities of young people waiting for a future that will never arrive, where many enter the underworld of militias, drug trafficking, gang warfare and sex work’. Decent care demands urgent and intelligent grounding in this complex matrix. In reading these contributions I expected to find my eyes glazed by repetition and over-conceptualization. I was spectacularly wrong. Each contribution is valuable and distinctive. This is a book for visionaries, for realists, for strategists and for carers. It enlarges our humanity; it shines light on the value of faith. It challenges us to promote Decent Care as the unifying and essential ingredient we should all practice and should all wish for in any chronic or stigmatized condition, whether HIV infection, disability, tuberculosis or mental illness. Whatever your starting point, read this book and allow it to change your perceptions and your practice.