Our Research


#1 Snapshot of “The Sky is Pink”

A story in the words of Aisha, who was diagnosed with SCIDS (Severe Combined Immunodeficiency), her family’s (Aditi, Niren and Ishaan Chaudhary) challenges in caring for her. The movie captures various phases of caregiving and also her adolescent passing away due to complications from treatment and how they all cope with it. Past experience of early death of their first daughter causes Aditi to be obsessed about the patient and treatment, making Ishaan’s needs secondary to that of Aisha. The movie explores the impact of caregiving on Aditi, Naren, their marriage, the overall family. Aisha’s decision to not undergo a risky surgery just to extend the duration and not quality of life is a revelation.

We will be showcasing various caregiver and well-wisher learning moments in a Reel Caregiving Series… Watch this space!!

#2 Impact of Caregiving on the Physical, Social & Financial Well-being of the Primary Caregiver

In our previous post, we gave a snapshot of the movie “The Sky is Pink” which is based on a family’s caregiving journey.

In this post we discuss the impact of caregiving on one’s physical, social and financial wellbeing.

Aditi, the mother of Aisha, became the primary caregiver to her daughter when she was diagnosed with SCID. Aditi and Niren shifted to London to attain better and efficient treatment for their child. Coming from a middle-class Indian family, it was difficult for both of them to pay for Aisha’s treatment in London inspite of exploring different means of income. Being the only caregiver to her daughter, also left her feeling isolated from her family and friends at home. Aditi was not only a caregiver but had to juggle her responsibilities of being a mother and wife as well. She also worked all night and researched the condition whenever possible. Due to her busy day and night schedule, Aditi’s sleep routine was disrupted, which affected her physical well-being. Being a caregiver not only had an impact on her physical well-being but her social and financial well-being were also affected.

We will be taking you through the other elements of well-being that were affected during her caregiving journey. Watch this space to know more.

#3 Impact of Caregiving on the Emotional and Spiritual Well-being of the Primary Caregiver

In our previous post, we highlighted the physical, financial and social aspects of well-being of Aditi. In this post we look at the impact of caregiving on one’s emotional and spiritual well-being.

Aisha was Aditi’s second child born with SCID, the first one passed away within a year. Aditi had not overcome her guilt of not finding a cure in time. This led to obsessive focus while caring for Aisha. During the last days of her first child, Aditi embraced a faith that gave her spiritual strength. However it appears that she was not as diligent in maintaining spiritual practices as part of daily life. Only when Aisha chose quality of life over yet another treatment did Aditi ensure making her happy and to feel good about herself. However, in this process, she tended to de-prioritize her own need for emotional support and also lost touch with her spiritual side. Her typical caregiver inability to do justice to other roles and relationships within the family took a toll on her emotional well-being. Only later we see how she heals, to rebuild her relationship with her husband.

Considering caregiving as her primary identity, Aditi lost her sense of purpose after the death of Aisha. She didn’t seem to let go of things that are associated with her daughter, highlighting her inability to deal with grief and accept the reality. While there were things the family could be grateful for, Aisha tended to focus only on the loss of her daughter and it appears that balance through gratitude was missing.

In our next post, we will look at Aisha’s father’s caregiving journey and the effect on the elements of his well-being.

Curated Research