Lived experiences through the lens of child carers
“Searching for the missing smiles in vain, a childhood lost never to be found again.” - Raheela Malik
Introduction
Illness of any kind, physical or mental can cause parents to experience difficulties in performing their parental or caregiving role to the optimum. In certain cases, where the parent with illness fails to perform their caregiving role, role reversal between the parent and the child may take place where the child begins to take care of other members in the family including the parent (Van Parys et al., 2015). There have been different terms used to describe this, such as parentification, child caregivers or child-carers. A child-carer, in this blog, may be defined as a child who has a parent/(s) having some physical or mental illness and thus the child has to take up emotional and/or functional caregiving responsibilities. Children may have to assume the role of the parents and take up responsibilities for household chores such as cooking, cleaning, assisting in taking medicines and taking care of younger siblings or the other parent at times. On certain occasions, illness in either parent may be linked to reduced family functioning or dysfunctional family structure, consequently leading to problems or decreases in academic performance in the children. These roles are often a burden on children and could prevent them from spending time with their peers, focusing on their academics, and engaging in play activities and can have other disruptions to their everyday childhood (Jurkovic, 2014). Children living with a parent with some illnesses have been reported to be at a higher risk of emotional and behavioural difficulties including running away, delinquency and truancy, dropping out of school, substance abuse, diminished social competence and insecurities in peer relationships (Butera-Prinzi, 2009). With difficulties in the home environment, the children may be affected psychologically not only during their childhood but may experience difficulties that may persist into later adult life, including guilt, shame, alienation, social restrictions and problems with relationships (Källquist & Salzmann-Erikson, 2019).
It is important that measures are put in place for children to have the opportunities to talk with their parents and others, including health care professionals, about the difficulties faced by them as carers. Understanding the experiences of child-carers would assist in mitigating the impact of these caregiving responsibilities in the development of various support, prevention and treatment programs for these children.
The making of ‘The Child Carers’
With this background, our team of four psychiatric social workers and one clinical psychologist decided to develop a film on child-carers under the expert guidance of a filmmaker based in the UK. After multiple meetings and brainstorming, the team developed an ‘elevator pitch’ and the film script. Following this, we reached out to the organisation Carers Worldwide India to collaborate with them in this filming venture. The organisation works closely with the caregivers, including child-carers, of persons with different illnesses and disabilities. The organisation identified two families who could participate in the film.
On the 4th of July 2022, the team was all set to shoot the film, and the organisation's staff members joined the ‘film crew’. We first visited a 15-year-old girl whose father was in a vegetative state following a road traffic accident. The family belonged to a lower economic status, and the father was the family's breadwinner. She has two siblings. The father, unaware of the activities around, was lying on a bed that was neatly placed on the floor near the entrance of their tiny house. The girls lifted him up with all their strength and helped him sit. Their action reflected their affection, bond, struggles, and pain. We were naturally quite disturbed by the family’s situation. We expressed gratitude for agreeing to participate in this film and share their lived experience. Being mental health professionals, it was our nature to patiently listen to their woes and attempt to address their emotional turmoil. We had to, however, wear our caps of a filmmaker and start shooting the videos. The girl, whose happiness seemed to have faded away along with her father’s abilities, was explained about the filming process, and we ensured that she was comfortable. Recalling the harrowing experience was naturally challenging, and she was short of words to explain the difficulties she and the family had been experiencing. However, she did not shy away from vividly verbalising the extent she missed regularly attending school. It's normal to feel conscious and shy in front of cameras. However, the distress this family experienced was so overpowering that the mother openly reiterated the hardships that she and the children have been experiencing. As we interacted with the mother, we could also see the child diligently carry out the domestic chores without being perturbed that the cameras were capturing her acts. The level of engagement only indicated the level to which she was preoccupied with her thoughts. The child appeared to be a grown-up even before she attained adulthood. She had to let go of the fun that her peers were having, sacrifice her education, have no expectations and unexpectedly lost her childhood.
After being quite shaken from the interaction with this family, we headed to meet the second child-carer, a female. In addition to the recent experiences, she also gave a retrospective account of the immediate struggles she had to undergo as a 16-year-old when her mother was in a coma following a road traffic accident. Similar to the previous case, her mother is also physically and intellectually disabled but receiving good care from the family. As we entered the house, she was lying on the floor bed and cooing. There was spontaneous questioning from the husband (the girl's father) if she recognised any of us. He moved her to the chair and continued asking her questions affectionately as if he understood her responses even though she was only cooing. Tears rolled down our eyes as we witnessed their affectionate interactions and his respect for her. It was a living and moving example of "…in sickness and in health". After 20 minutes of getting to know the incident which changed everything for the family, the girl who was away attending classes returned home and was introduced to us. She had a very warm smile and spontaneously agreed to participate in the film. Although we were all overwhelmed and did not want to proceed with this filming, her warmth and resilience made us set up the filming devices and initiate interviewing her. She whole-heartedly participated in the interview and in shooting the B-rolls. She was very vocal about their experiences and expectations. The father, who was in the adjacent room, kept prompting her with more points she could say about the support that families like theirs will need. Despite the face mask, her expressions and emotions were very evident. Similarly, when we interviewed the father, the tone of his talk reflected their trauma and the irreversible pain they are undergoing that will only die with them.
“The world should be aware of these difficulties, and we do not mind if our identities are revealed”
These families and children have felt a range of hurdles in life and the accompanying emotions, yet they have persevered. Participating in this film only shows their selflessness and hope. It helped us understand the hidden world, which often goes unnoticed and unattended.
The ‘Margadarshi, Carers Worldwide India’ staff member gave a detailed history of the organisation, its evolution and its services. He substantiated the details provided by the child-carers and hit the right spot as he explained the role of education departments and the government in supporting these children and families. It's heartening to get an account of the services they carry out.
The education departments and the policymakers should consider the adversities faced by these children and have appropriate plans in action to channel resources to target these children in greatest need. These children should be reassured that they matter by providing them with the needed support services which could also be in terms of psychological and family-based interventions. There should be a focus on preventative and early interventions designed to improve adjustment outcomes for these children and adolescents by modifying risk factors to reduce their impacts such as social isolation and inadequate mental health literacy and by strengthening protective factors such as an adequate repertoire of coping skills and intact peer relationships.
We wish for the film to reach other children having similar experiences, the professionals working with individuals with chronic illnesses having children, other stakeholders and policymakers. We hope that the film influences service providers; and that the children get the attention and intervention from health/mental health professionals. There should also be provisions that ease caregiving for adults and prevent children from shouldering the caregiving responsibility. The film aims at motivating appropriate action steps.
References
1. Van Parys, H., Bonnewyn, A., Hooghe, A., De Mol, J., & Rober, P. (2015). Toward understanding the child's experience in the process of parentification: Young adults' reflections on growing up with a depressed parent. Journal of marital and family therapy, 41(4), 522-536.
2. Jurkovic, G. J. (2014). Lost childhoods: The plight of the parentified child. Routledge.
3. Butera‐Prinzi, F., Charles, N., & Story, K. (2014). Narrative family therapy and group work for families living with acquired brain injury. Australian and New Zealand Journal of Family Therapy, 35(1), 81-99.
4. Källquist, A., & Salzmann-Erikson, M. (2019). Experiences of having a parent with serious mental illness: an interpretive meta-synthesis of qualitative literature. Journal of child and family studies, 28(8), 2056-2068.