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Caregivers 

Across Africa, family members play a crucial role in patient care both at home and during hospital admissions. During Lassa fever treatment, caregivers are usually not permitted to enter isolation wards.  This can make it hard for families to carry out their caring duties, which is especially difficult for parents when their children are infected. Some caregivers may eventually need treatment themselves and some may asymptomatic.  When caregivers are asymptomatic it can be difficult to persuade them to accept treatment or monitoring.

Caregiving roles are also gendered and shaped by other kinds of social identity, including membership of ‘secret societies’. Some kinds of care can only be provided by a member of the same sex.

Keys roles of caregivers in health care settings:

  • Providing psychosocial support to patients
  • Providing food, especially, favourite foods and foods perceived to be healthy or strengthening
  • Providing traditional medicines
  • Providing company and strength
  • Helping monitor medication, compliance, and the progression of the illness
  • Helping with personal hygiene i.e. washing and toileting
  • Sending back reports on the patients progress to wider family networks
  • Religious leaders also play a key role in praying for patients

 

Fears and discrimination among caregivers of Lassa fever patients in Nigeria

Tobin E.A.1, Asogun D.A.1, Ugege O.G.1, Osamhanze P.1 Esumeh R.1, Giwa R.1

This unpublished is based on focus groups with caregivers of patients with Lassa Fever.  The majority of the respondents were frightened to disclose the nature of their illness to other family members and friends for fear of stigmatization. Most respondents perceived the greater part of patient care was left to them as health workers were reluctant to care for their sick relatives.
 

Policy relevant findings:

  • Provide a visiting area for caregivers.  Ideally this area should be one that patients can also access when well enough e.g. with a low-level fence or barrier separating different areas, so that patients can speak to family members when they are recovering.
  • Provide information to caregivers, explain the illness and why they are restricted from entering the Lassa Ward.
  • It may be appropriate to provide opportunities for one main caregiver to dress in PPE and enter the isolation ward for a short period.  This has been trialed at Irrua hospital in Nigeria but more work is needed to know if this is too risky, and if it merits the cost.
  • Develop new ways of helping patients to stay in touch with their family members.  For example, in Ebola Treatment Centres people were given phones, but phones have to be destroyed afterwards so this can be very costly.
  • There is a need to remain aware of different cultural understandings of Lassa fever and how these shape the patient experience.  Clinicians need to be aware that they may need to change the way that they work to enable other forms of care that are important for patients and their families, it is not only patients who need to change.
  • Treatment centres should consider gender in their caring practices – for example it can make patients more comfortable when male and female patients are separated.  

 

Resources

Healthcare providers on the frontlines: A qualitative investigation of the social and emotional impact of delivering health services during Sierra Leone’s Ebola epidemic

This paper describes the stigma experienced by health care workers during the Ebola epidemic in Sierra Leone, and recommends psychological support mechanisms for medical staff working in epidemic contexts.

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Hospital domestics: Care work in a Kenyan hospital

Though not about Lassa fever specifically, this paper explores the division of labour between medical staff and familial caregivers in Kenya.

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Perceptions of burden of caregiving by informal caregivers of cancer patients attending University of Calabar Teaching Hospital, Calabar, Nigeria

Though not about Lassa fever specifically, this study shows the burden experienced by informal caregivers of cancer patients in Nigeria. Most caregivers experienced this burden as moderate or severe.

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