Holistic care at Home:

Golden Butterflies’ efforts to help child-patients and families cope during COVID-19

– Aneka Paul, Stella Matthew, Ramalakshmi V., Chennai

The novel coronavirus (SARS CoV-2) spread worldwide, lakhs of people succumbed to COVID-19 (COrona VIrus Disease), and healthcare systems across the globe crumbled under the patient load. Chronically ill or terminally ill child-patients tend to most often slip under the radar of care in most developing countries, even during the best of times. Golden Butterflies Children’s Palliative Care Foundation (GB) was therefore determined to provide the extra and much needed care and focus to our cohort of child-patients, whose compromised immune systems made them more vulnerable to the virus.

GB Hear For You: Post imposition of the nationwide lockdown, GB was quick to switch to telephonic counselling. We assigned each of our counsellors and trained volunteers with a limited number of child-patients and their families to be in regular contact with. We witnessed a spike in both the number and duration of calls. Caregivers were either in need of material help or information, or wished to express their emotions.

Material Support: GB stretched itself to provide financial support to child-patients towards their medical treatment like chemotherapy, immunotherapy, surgery, scans, assistive devices, etc. We procured donations for smart phones and internet connection so that our child-patients could attend online classes uninterrupted.

GB Nutri-Bowl: Families of many of our child-patients, being daily-wage earners or from out-of-city/state, could not go out to work during the lockdown, and consequently could not afford living expenses. Child-patients’ growing bodies require additional nutrients to cope with the medications, as the absence of basic nutrition and hygiene threatens the safety of the already immuno-compromised child. We provided nutritional support in the form of monthly groceries and hygiene kits to impoverished child-patients and their families.

GB Shuttle: The strict lockdown’s made access to scheduled treatment difficult for our child-patients, as transportation options to get there (in absence of public transport) were also scarce and expensive. We provided the families of our child-patients’ with transportation costs to and from their treating hospital, to avoid delays which could potentially cause the cancer cells to regrow and advance making the disease incurable and render further treatment ineffective or worse endanger their lives.

GB Magic Envelope: We missed the opportunity to conduct the ‘GB Bandwagon’ – our hospital-based group art and recreation sessions, where kids walk in, participate and enjoy themselves till it’s time for their consultation. Instead, we started ‘GB Magic Envelope’ – an edu-tainment kit couriered every month to a small group of child-patients. This A4-size treasure includes a theme-based craft activity (along with all the required raw materials and color pictorial instruction sheet), coloring sheets, and a tiny gift. This Magic Envelope kept our child-patients creatively engaged and even enhanced sibling bonding.

GB Caregivers Connect: Our intense counseling sessions with parents/ caregivers of our child-patients revealed the depth of support they too required to be able to cope healthily. Once the state imposed restrictions eased, our ‘Caregivers Connect’ program was born. ‘Caregivers Connect’ adhered to all the public health safety guidelines and created a safe space for caregivers dealing with children with a chronic/incurable illness or bereaved families, to grieve, de-stress, relate with others, and receive appropriate information and support from GB.

Bereavement Support: Families (particularly siblings) were supported and guided to rebuild their lives after the child-patient had passed on.

About Us: Aneka Paul is a Trustee, Stella Matthew is the Managing Trustee and Ramalakshmi V is the Project Manager at Golden Butterflies Children’s Palliative Care Foundation. GB is a not-for-profit, public charitable trust registered in February 2018 in Chennai, dedicated to serving the needs of underprivileged children suffering from chronic, advanced or incurable diseases, and their families. Please visit www.goldenbutterflies.in to know more about us.

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