124 Prayers for Caregivers

124 Prayers for Caregivers

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This is consistent with another study among African-American children who have been found to be social actors of care [ 37 ]. 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:. They are also the ones that give me money that enable me to bring him to the clinic.

The above is contrary to the experiences of others, who received partial sponsorship and have to top up in order to survive. Some of such partial sponsorships came from older children of the caregivers as illustrated here: My daughter often sends me some money. I also sell the surplus from my garden to raise more money to get money that we can use at home. Others receive meagre support from other family members such as grandfathers and were barely surviving on this:. His grandfather, but his income is very low.

He pays it, but in a lot of agony. The burden of caregiving is laid on the grandfather who might be retired and thus unemployed. As implied, such demands stretch him, this can emotionally, and physical wear him out. Religious resources also provided means of coping with the demands of caregiver burden.

These resources are materialized in the way religious rituals such as prayer are viewed as instruments for receiving the provisions for livelihood as explained by a participant: I asked God to give me a job where I can get school fees for my children. 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:.

In the past thirty days; has it ever happened that there was no food in the house? No, we have food all the time. God has been providing for us. The participant relies on prayer to solve an employment and educational need. His faith is still instrumental in the way he expressed faith that the care they receive from the divine is practically expressed in their daily provisions. This sense of hope and faith in God in aiding their thriving is an undercurrent and a reflection of the extent to which the utility of religion is widespread in his survival tactics.

Prayer was used by others in procuring food for daily living. The nature of the answered prayer is however non-super naturalized. Somebody randomly offered me sweet potatoes. Shortly afterwards, I noticed a child crossing the road heading towards me with beans. You know, I stay in a village setting trading center; when those people harvest, they share with the neighbors. The events following the prayer are viewed as favorable response to the prayer. From the narrative, the neighbours who offered the potatoes and beans all appeared to have been on a divine mission.

Such thought is clearer in the face of the practice of reciprocal benevolence present in the village: The implication as the participant explains is that, if you have a garden then you can be a part of this practice, but she does not have one. In this scenario, what will influence someone to give to another is beyond any social exchange ethic. The participant believes prayer, a supernatural instrumentation, influenced the benevolent acts that was extended to her from some community members.

In the African context, the mundane and the divine are inseparable and this is what appears to be indicated here [ 38 ]. To begin with, the demographics of the caregivers in the present study are consistent with the reports of other studies about particular demographics of caregivers of HIV children.

First, majority of these caregivers are within the age period where they can leverage their energies on caring demands. However, if they do not get support, all their energies can be spent on the demands of caring leading to burnout and other psychological problems [ 15 ]. In the main study, Second, the low level of education among the caregivers is disturbing since it could hamper access to health information and perhaps adherence to anti-retroviral therapy. In one study for example, although self-efficacy moderated the relationship between literacy level and adherence to treatment regimen, a multivariate analysis showed that low literate persons were 3.

Further, most of the caregivers were engaged in marginal jobs which are lowest paid and insecure [ 40 ]. Such households may be economically vulnerable and the children may live with heightened risks of malnourishment, consistent with other studies in Nigeria [ 41 ].

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Additionally, caregiving was essentially provided by more members of the extended family folks including grandmothers and aunties. Some studies have also reported that grandmothers and for that matter extended family relations are active care providers for children living with HIV [ 42 ]. There are also gender dimensions in the demography of these caregivers, which cannot be overlooked. Majority of the caregivers were women and that might define caring primarily as female endeavor [ 43 ]. This is consistent with the literature on caring and specifically caring for HIV and AIDS patients where women are cited as the major resource in informal home-based care [ 44 ].

Consequently, home-based care by men may be unacceptable in most African communities [ 9 , 45 ]. However, such representation of caregiving has serious implications for the economic empowerment of women. These demographics generally point towards a potentially fragile family resources in terms of gender, low education, insecure jobs and perhaps the depletion of psychosocial energy through the demands of caregiving. The first important indication is that home-based care for children living with HIV is pervasive and leaves the onerous responsibility of caregiving on the mothers or family relatives.

For instance, the indications that these caregivers are struggling with finances, food, school fees, transportation problems to healthcare facilities are consistent with other studies in Botswana [ 47 ], Namibia [ 48 ], South Africa [ 42 , 49 ], Zimbabwe [ 50 ] and Ethiopia [ 51 ]. The sum total of all the strains of these caregivers converge on one fact: This burden on caregivers might influence poor caregiver health [ 53 ]. These competing responsibilities may lead to delay in seeking self-care; placing low priority on their own health [ 54 , 55 ]. If these caregivers break down, this can represent a double burden, a real threat to family resilience.

Firstly, HIV caregivers in this sample, improvise in many ways to survive the strains of caregiving. These included managing their sustenance, shared burdensomeness, social networks and instrumental spirituality. In a study conducted on older caregivers living in rural Kenya, participants demonstrated ability to mobilize new resources of labour for food production and formed new social networks in order to foster other forms of food entitlement [ 56 ].

Further, Wangui reported that caregivers also received credit from the social networks when people they knew donated food directly or indirectly received money to buy food. Such reports are consistent with our findings where we observed caregivers managing their sustenance and social networks in ways that strategically ensured the constant supply of basic provisions such as food. As extensively reported by Ntozi and Nakayiwa [ 57 ], home-based care of HIV patients by relatives in Uganda is not a recent phenomenon.

The burden however, is ever increasing, dramatically changing family structure and threatening household resource [ 58 , 59 ].

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Secondly, generally, caregiving is assumed to be uni-directional, meaning the care-recipient in this case children are passive and support is flowing from the caregiver in a linear fashion to the receiver [ 60 ]. Such reciprocation has received limited attention in the literature [ 62 ]. The sharing of burden with care-recipients as observed in this study may represent forms of reciprocation and patient-provided support in ways of easing the impact of caregiving burden.

In this regard and many other reasons, we can conceptualize the support children provided for these caregivers as crude means of alleviating their stressors in the context of dearth of institutional interventions. Such posture from the children can assuage the attention of the caregivers to the positive dimensions of caregiving as pointed by Walker and colleagues [ 62 ]. The present study may thus be one of many attempts to show and document such reciprocation in the caregiver-care receiver dyad in Uganda.

Spirituality represents another dimension of coping with the demands of caregiving in this study. Spirituality has repeatedly been found to be inversely associated with mental health dimensions including low self-esteem, depression, loss of meaning in life, hopelessness, etcetera [ 64 ]. There is evidence of high rates of religiousness and religious coping among informal caregivers of all kinds of care-recipients and some associations with better mental health outcomes [ 65 ].

The use of prayer in this study as a survival strategy for some caregivers was instrumental in accessing daily provisions such as food. Such material utility of prayer sharply diverges from another study, for instance, in the USA among HIV caregivers where prayer was generally deployed to gain psychological composure in caregiving including managing positive emotions such as gratitude, trust, faith, gain focus, calmness, guidance and moral direction [ 66 ].

The use of prayer by the caregivers is consistent with such assertion and parallels other reports of caregivers of HIV persons in the USA who used prayer to cope with the demands of caring [ 68 ]. This has implications for the role of religion and the church in the management of home-based care services for families affected with HIV. What we found in this study is difficulties related to basic human needs. Although home-based care comes in handy in the face of scarce social interventions, it results in the depletion of household resources, making daily provisions difficult to come by.

To surmount these struggles, caregivers in this study needed to negotiate their relationships in ways that facilitate thriving. Although such survival strategies may be salutogenic and be commendable within the discourse of human agency and resilience, the consequence of virtually institutionalizing a culture of poverty among these groups of caregivers in Uganda looms large, and the urgent need for social interventions cannot be overemphasised. The study has elucidated the burden of caregiving and survival strategies of caregivers of children living with HIV in Uganda.

Their struggles have been found to be centered on material scarcity such as food and funds for daily provisions. The survival strategies concretely reflect desperate efforts towards livelihood and illustrate the culture of poverty among HIV caregivers as reported by some studies [ 11 , 71 ]. The findings have two important implications for interventions. First, direct social intervention programs from government in terms of daily provisions such as food to resource-limited caregiving families of HIV patients is urgently required if informal home-based care for HIV should be a viable alternative or addition to facility-based services in Uganda.

The current facility-based care model in the country that is essentially the provision of drug refills, counselling and peer activities, should be expanded to include direct supply of necessities such as food to vulnerable families. Currently, there is no Social protection policy for Home-based caregivers in Uganda and this study draws into sharp focus the urgent need to consider this group as needful for such services.

The key targets of the HIV report in of Uganda including eliminating gender inequalities, eliminating stigma and discrimination and strengthening HIV integration were significantly reached. However, clear targets of practical provision of social support and protection such as providing basic needs for survival such as food for PLHIV and HIV affected families is far from the targets.

One key objective of the NSPPI is to empower the capacity of caregivers as well as protection and provision of care for orphans and other vulnerable children [ 28 ]. 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. 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. 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. 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. 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?

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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. Campbell C, Foulis C. Gendered home-based care in South Africa: Home-based care in Botswana: Health Care Women Int. AIDS care—learning from experience.

Rev Afr Polit Econ. Stigma, fatigue and social breakdown: Njororai F, Njororai WW. Int J Health Promot Educ. Co-occuring psychiatric symptoms in children perinatally infected with HIV and peer comparison sample. J Dev Behav Pediatr. Longitudinal study of emerging mental health concerns in youth perinatally infected with HIV and peer comparisons. Human immunodeficiency virus disease severity, psychiatric symptoms, and functional outcomes in perinatally infected youth. Arch Pediatr Adolesc Med.

Musisi S, Kinyanda E. Emotional and behavioural disorders in HIV seropositive adolescents in urban Uganda. East Afr Med J. Psychiatric morbidity among HIV-infected children and adolescents in a resource-poor Kenyan urban community. Uganda demographic IU, survey h.

Ntozi JP, Zirimenya S. The capacity of the extended family safety net for orphans in Africa. Ment Health Relig Cult. Uganda Bureau of Statistics. Braun V, Clarke V. Using thematic analysis in psychology. Orphans and vulnerable children in Botswana: Vulnerable Child Youth Stud. Determining validity in qualitative inquiry.

Quality criteria in qualitative research. A companion to qualitative research. Validity in qualitative research. Extended family caring for children orphaned by AIDS: Comparison of socio-demographic and clinical characteristics of orphans and non-orphans among HIV-positive children in Ibadan, Nigeria. Int J Infect Dis. S Afr Fam Pract. Verhoef H, Michel C.

124 Prayers for Caregivers

Studying morality within the African context: Men's involvement in the south African family: When tea is a luxury: AIDS and the urban family: Bor R, Elford J, editors. Barriers and incentives to orphan care in a time of AIDS and economic crisis: A cross-sectional survey of caregivers in rural Zimbabwe. Joan Guntzelman - held a doctorate in counseling psychology from the University of New Mexico and a master's degree in clinical psychology from Xavier University in Cincinnati. For many years she was a nurse and nursing supervisor.

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124 Prayers for Caregivers

Cashback will be credited as Amazon Pay balance within 10 days. Valid only on your first 2 online payments. Cashback will be credited as Amazon Pay balance within 10 days from purchase. Here's how terms and conditions apply. About the Author Joan Guntzelman - held a doctorate in counseling psychology from the University of New Mexico and a master's degree in clinical psychology from Xavier University in Cincinnati.

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