The study was carried out by children’s palliative care charity Together for Short Lives, who have published the findings in the report “Hidden Lives: tackling the social exclusion of families caring for a seriously ill child.”
The report tackles the social exclusion of families caring for a child with a serious condition, showing that a child’s diagnosis can have negative effects on families’ relationships with other members of the family, friends, neighbours and their wider community. Most of the families who took part in the survey said that they often felt isolated and their social life had suffered considerably because of their child’s condition. The reasons cited for not going out socially ranged from exhaustion to a fear of being away from their child.
Bereaved parent, Carly Hadman, took part in the survey, sharing her family’s sense of isolation and the impact of caring for her daughter Effie. Effie became ill when she was three and died in February 2017, aged six.
“Isolation can happen gradually, as we stopped being able to go out and do the things we used to do. We frequently had to cancel plans to meet with friends. The number of appointments we had to attend, along with the number of health professionalss in and out of the house, left little time for us. Being around normal, healthy children made us realise just how different we had become. No-one could ever understand what we were going through. And that is a good thing, our reality was horrific. Isolating myself became a protection mechanism. Being out in the world made us face the reality of how different we were. At home, no-one would stare when we resuscitated our princess, when we used her feeding tube or tried to stop yet another seizure.”
Together for Short Lives found that a common reason for a change in these families’ social life, relationships and interactions with others included feelings of social exclusion and the sheer exhaustion of caring for a child with a life-limiting condition. Another family member said:
“I often do not want to go out because getting support takes a huge effort, and I have not got the energy to get dressed up or go anywhere. Sometimes I worry that I will just be miserable if I do go out, so I find excuses not to go to social events. I do not often get asked anymore.”
Others talked about how hard it is to engage with everyday social conversations or talk about anything trivial when your life revolves around caring for a child with a life-limiting condition. Some said it was difficult to be spontaneous or go out without endless planning months in advance – and the unpredictability of their child’s condition meant that social events were often cancelled.
“My friends have stopped inviting me to social events because I nearly always have to cancel at the last moment due to my child’s illness or my exhaustion.”
“There is not any excitement or spontaneity, and that impacts on my son, family and friends.”
Some families said practical problems prevented them from socialising outside the home. This included having to take a huge array of bulky medical equipment and medicines every time they left the house.
Parents also talked about the stress or negative impact of their child’s condition on their relationships with their spouse or partner.
“My relationship with my husband takes a huge amount of work to keep things going…There are resentments on both sides as I have to stay at home with my son but feel so envious of my husband’s work life and the escape he gets. He feels sad he does not get time with our son.”
Parents stressed the importance of building relationships with families in a similar situation who understand what it is like having a very seriously ill child.
“I feel like I can only share my true thoughts and feelings with parents who have had a child with a similar condition. I am part of a private Facebook group run by Together for Short Lives, and the people there lend an empathetic ear and a shoulder to cry on.”
Lizzie Chambers, Development Director for Together for Short Lives added:
“Families caring for seriously ill children do an amazing job – often providing complex care through the day and night. But it can be all consuming and families can get exhausted – every ounce of energy gets used up on caring and juggling their child’s multiple medical appointments.”
“Families often share feelings of loneliness and isolation, and it is important as a society that we confront illness, death and dying and remove the stigma that can leave so many families feeling alone. We want to change this, so communities understand what it is like to care for seriously ill children, and vitally by reaching out to families through our helpline and family community, supporting families to get the right support locally, as well as connecting them with other families, so families know they are not alone.”
For more information visit Together for Short Lives