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Safe practices for care givers

Children with spinal muscular atrophy are at a high risk for acquiring infection. Caregivers face a lot of challenges while caring for their children with spinal muscular atrophy in the present time. The main challenge involves a striking balance that has to be created and maintained between their ongoing therapies, social distancing, doctor visits and a constant fear about their child getting infected.

Priority 1: Care of the care givers

First and foremost, the caregivers should prevent themselves from getting infected.
The guidelines recommended by WHO (World Health Organisation) need to be followed strictly.

  1. To regularly clean your hands with alcohol-based hand rub or wash them with soap and water.
  2. Maintain safe distancing of at least one metre (3 feet) whenever you have to go out.
  3. Avoid participating in social gatherings, avoid crowded places.
  4. Avoid frequent touching of your face, nose and eyes.
  5. Self-isolate in the presence of minor symptoms like cough, headache, fever .
  6. Call the local health care authorities in case if you have symptoms.
  7. Follow respiratory hygiene practices – In case if you sneeze or cough cover your mouth and nose with a bent elbow or tissue .
  8. Keep yourself updated on the latest information about the pandemic from trusted sources like WHO / local / national health care authorities.
  9. Work from home if possible .
  10. Ensure the assistive devices like wheelchairs, orthosis, walkers are disinfected frequently .

Priority 2: General measures for the wellbeing of the child

  1. Visiting physiotherapists should ideally be discouraged and advice on phone/ video links would help.
  2. Stock the medications and ventilatory equipment supplies for a minimum period of 1month.
  3. Use online/ telephone / mobile based apps to deliver products like medicines/groceries to your home to reduce interpersonal contact.
  4. If your child is on treatment with Nusinersen(Spinraza) or is enrolled in a compassionate access programme, the ongoing treatment should never be stopped.
  5. Discuss with your doctors on safe continuation of the treatment for e.g.: If an oral drug is being given it can be provided for a longer duration such that frequent visits to the hospital are avoided.
  6. Make an attempt to know your ventilators/ BIPAP devices and also have a contact personnel for the same so that in case of device malfunctioning trouble shooting can be provided by the personnel.

Priority3: Measures to be taken for the mental wellbeing of the caregivers and the children

  1. Talk to the children about the current pandemic, need for social distancing and hand washing routines. Give time to yourself and to the children to adjust with their current routines like on line schooling and online physiotherapy sessions.
  2. Use teleconsultation services with Doctors and health care professionals in case of any illness or foraccess to medications and therapies.
  3. Self-care measures like connecting with friends and relatives virtually and seek help from friends/well wishers when required.
  4. Establish a careplan for your children and try arranging a backup caregiver in case you fall ill.
  5. Social distancing may amplify feelings of social isolation in children with SMA. So, give time for the children to express their feelings, make them feel connected with their peer groups through messages, voice chats and virtual platforms.

Priority 4: Measures to be taken when child is sick

When the child has symptoms such as sore throat / fever/ tachypnoea, less frequent symptoms like diarrhoea/ nausea immediately contact your local health authorities / paediatrician.

Resources:

  1. Organization WH. Disability considerations during the COVID-19 outbreak COVID-19. 2020;
  2. Solé G, Salort-Campana E, Pereon Y, et al. Guidance for the care of neuromuscular patients during the COVID-19 pandemic outbreak from the French Rare Health Care for Neuromuscular Diseases Network.
    Rev Neurol (Paris). 2020;176(6):507-515. doi:10.1016/j.neurol.2020.04.004
  3. Campbell, V. A., Gilyard, J. A., Sinclair, L.,Sternberg, T., & Kailes, J. I. (2009).Preparing for and responding to pandemic influenza: Implications for people with disabilities.American Journal of Public Health,99(S2), S294-S300.
  4. National Council on Disability COVID-19 Letter to HHS OCR. (2020,March 18).Retrieved from:
    https://ncd.gov/publications/2020/ncd-covid-19-letter-hhs-ocr