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The findings in this study urgently bring this objective into clear focus. Second, women who primarily provide care for HIV patients in Africa need social protection and intervention programs to support them.


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Relatedly, government should put in place intervention packages with attractive incentives for neighbours and family relatives to take up paid home-based care [ 40 ]. Thus, home-based care should be strengthened [ 8 ]. As recommended elsewhere, the provisions of community-based paid care should be encouraged, similar to the Integrated Community-based Home Care model in South Africa [ 71 ].

While this study was undertaken within the new policy environment where HIV care has moved from vertical care programmes to integrated programmes, it did not set out specifically to look at the impart of this policy shift on home based care. Therefore, there is the need for specific studies to investigate the impact of this programmatic shift on home based care for children and adolescents with HIV in order to inform future programme development.

Further, most of the caregivers were women. Efforts should have been made to get more males who are engaged in caregiving to share their experiences.

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Although caregiving appears gendered in most African settings, the presence of men in informal and formal caregiving cannot be denied. We acknowledge the interviewer for this study Winifred Nalukenge. JO was the one who drafted the manuscript. The data was collected by EK and Winifred Nalukenge.

JM and BLK reviewed the work and provided critical comments and contributions. All authors read and approved the final manuscript.

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Caregivers of all eligible CA-HIV were given information about the study by trained study psychiatric nurses and informed consent for the caregivers and assent for the CA-HIV sought before enrolment into the study. Participants found to have a PD were given health education and referred to their local mental health departments. Participants gave their consent for the data to be used for research purposes.

They were also assured that any information about them will be anonymized. Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Birthe Loa Knizek, Email: National Center for Biotechnology Information , U. Journal List Global Health v. Published online Sep Author information Article notes Copyright and License information Disclaimer. Received Feb 23; Accepted Aug Abstract Background Home-based care for HIV patients is popular in contexts severely affected by the epidemic and exacts a heavy toll on caregivers.

Methods A total of 18 caregivers 3 males and 15 females were interviewed using a semi-structured interview guide, and thematic analysis was used to analyse the data. Results Analysis suggests that the caregivers are burdened with insecure provisions for food and difficulties in accessing health care. Procedures and sampling Participants were randomly selected as they came in for their ART Anti-retroviral therapy appointments.


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  • Analysis Thematic analysis was adopted to analyse the data. Table 1 Descriptive demographics of participants. Open in a separate window. Labour of caregiving This theme addresses all the challenges the caregivers experienced in the provision of care for the patients. Insecure employment and provision for food A common difficulty faced by caregivers was economic issues.

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    His only source of livelihood- a motor cycle he manages for someone and gets paid for that, was taken back from him because other family demands took his attention: In another related scenario, the source of livelihood of a caregiver was destroyed making daily provisions and survival difficult as illustrated in the conversation below: Hmm, So how do you survive? I fared on like that. How do you meet your needs? Female, 06 In most cosmopolitan centers, the crave for urbanization ignores the poor who survive using menial tools.

    Yes I failed always and there was a particular time that I was so confused Int: Tell me about it. Female, 18 This is a typical case of double agony: Healthcare access dynamics This sub-theme examines the challenges related to access to healthcare facilities and some of the dynamics that related to such access: Access to the healthcare facility is further hampered by lack of money occurring in tandem with poor physical health as illustrated in the following conversation: Was it money or energy that was lacking?

    The next time I did not have energy; so I came on another day after the appointed date Female, 15 For half a year lack of funds and poor physical health hampered her from visiting the hospital. Survivalism This theme addresses the livelihood strategies by participants in organizing scarce resources as means of reducing the strains of caregiving. Managing sustenance This sub-theme addresses the skills these caregivers deployed in an attempt to make ends meet. Male, 01 This caregiver manages two main relationships.

    In this other case, the caregiver has established a rapport with the headmistress of the school of the children so that in the event of non-payment of fees on time, she can be pardoned: In such situations, the woman appeared to have accepted a challenge to search for means of survival as one of them explained: Every attempt from the caregiver grandmother to get the father to demonstrate responsibility towards the child has failed; under the pretext of financial crisis: Shared burdensomeness Another way some participants coped with the demands of caregiving was through sharing the burden with the patients.

    The question, however, is whether such demands may not put extra burden on their already debilitating health condition: Female, 08 The physical condition of the HIV positive child definitely may not be compared with the normal healthy child, but this is how the caregiver who is also infected circumvented the burden of caregiving- sharing the household chores with the infected child and perhaps providing the child with a feeling of being important.

    Where do you get the drugs from? So he goes that far. How does he go? He goes with the other girl I have told you about. Female, 07 Breaking the household chores into chunks and assigning each child to handle a piece of it was another way some caregivers sought to manage the burden of caregiving: However, in some cases some of the children who are being cared for with caregivers who are positive also provided support to ease their burden as narrated below: Support networks Others have coped by constant provision of support from sponsors.

    The sponsorship is all-encompassing including the provision of food, school fees, and transportation to present the child to the health facility for attention: Others receive meagre support from other family members such as grandfathers and were barely surviving on this: Who provides food in the home? Who pays school fees for this child we are talking about? Instrumental spirituality Religious resources also provided means of coping with the demands of caregiver burden.

    Later when he was asked whether food has been scarce for the family his response reflects a religious expression of confidence that God provides for their needs: Male, 02 The participant relies on prayer to solve an employment and educational need. Conclusions The study has elucidated the burden of caregiving and survival strategies of caregivers of children living with HIV in Uganda. Limitation While this study was undertaken within the new policy environment where HIV care has moved from vertical care programmes to integrated programmes, it did not set out specifically to look at the impart of this policy shift on home based care.

    Acknowledgements We acknowledge the interviewer for this study Winifred Nalukenge. Availability of data and materials Not applicable to this study. Consent for publication Participants gave their consent for the data to be used for research purposes. Competing interests The authors declare that they have no competing interests. Contributor Information Joseph Osafo, Email: Dayton J, Ainsworth M.

    The elderly and AIDS: AIDS and older persons: Stress related factors among primary and part-time caregiving grandmothers of Kenyan grandchildren. Int J Aging Hum Dev. Tropical Med Int Health.

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    Barriers and incentives to orphan care in a time of AIDS and economic crisis: A cross-sectional survey of caregivers in rural Zimbabwe. Mnubi-Mchombu C, Mostert J. Information seeking behaviour of orphaned and vulnerable children's caregivers in Namibia. The health of caregivers for children with disabilities: Child Care Health Dev. Delays in seeking HIV care due to competing caregiver responsibilities.

    Am J Public Health. Women and AIDS caregiving: Conceptualising patient provided support for spouse caregivers in the context of prostate cancer. Aspects of family resilience in various groups of south African families. Ntozi JP, Nakayiwa S. Perceived reciprocity in family caregiving. Prayers, spiritual support, and positive attitudes in coping with the September 11 national crisis. Handbook of religion and health. A critical review of the forms and value of religious coping among informal caregivers. Subjective experiences of prayer among women who care for children with HIV.

    Pentecostalism in a globalizing African economy: Indiana University Press; Exploring the nature of treatment regimen for mentally ill persons by neo-prophetic ministers in Ghana. This will come in handy for my friend who is a caregiver for her husband who was just diagonosed with cancer. By Landlady on Feb 21, By Melanie on Dec 31, Add a Book Review.

    Details Description Reviews Author: Click on this books subject categories to see related titles: Customer Book Reviews short, honest reflections - a blessing. Provides me with great comfort as I read it each day. The title of this book is Prayers for Caregivers and it was written by Joan Guntzelman. This particular edition is in a Paperback format. It was published by Liguori Publications and has a total of pages in the book. To buy this book at the lowest price, Click Here. Be the first to review this item Would you like to tell us about a lower price?

    Share your thoughts with other customers. Write a product review. Most helpful customer reviews on Amazon. I bought this as a gift for a friend caring for her husband with a cancerous brain tumor. Not only has she found comfort in the book but she took it to her Caregiver's group meeting last night to close the meeting. They enjoyed it so much the hospital is going to add the book to the resources list for all care givers. Thank you for this wonderful gift of prayer. Recieved packaged well and before scheduled time.

    This will come in handy for my friend who is a caregiver for her husband who was just diagonosed with cancer. Purchased this as a gift for a friend who is a caregiver to both elderly parents. My brother Charles is a hospice volunteer - I purchased the book of prayers for his work with hospice patients. He told me it was very helpful!


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