The hardest thing we have ever done - Palliative Care Australia

Carers of children and children as carers
Parents caring for a child with a terminal illness, chronic illness or disability have their own
unique issues ranging from social isolation to marriage disruption to being physically and
emotionally absent for other children in the family. The impact of the child’s illness on the
family, particularly the parents, was highlighted by Mastroyannopoulou et al (1997) who
reported high levels of depression, considerable effects on employment and an impaired
social life, set within a family environment charged with high conflict and low support.
Stallard et al (1997) reported on the impact of the child’s illness on healthy siblings. They
found that healthy children were constantly worrying about their ill sibling with the
predominant feeling being one of sadness. Although 38% of well siblings were able to talk
to their parents about the illness and 14% were able to talk to their grandparents, a
significant 48% did not talk to anyone about their illness. Deeley et al (1998) recommended
a family-centered approach to palliative care where the needs of all family members are
addressed and not only the ill child.
McGrath (2001c, 2001d) reported that parents have a strong need for practical assistance
during the initial stage of treatment and for emotional support to be able to cope with the
challenges of caring for their child during the long and invasive treatment protocols.
Important sources of support noted were partners, family, friends, employers, hospital staff
and other parents in the same situation. Poor family or social support is a risk factor for poor
family coping and parental psychological distress. As the treatment protocols are long, offers
of support tend to decrease over time and parents find it difficult to continue the imposition
on others.
Young carers aged 16 to 24 caring for a dying parent may experience the loss of
opportunities to study or work and loss of peer friendships in addition to the grief of losing a
central relationship (The Australian Psychological Society, 2003). Children can sometimes be
hidden caregivers when they are expected to take on jobs and responsibilities beyond that
which is normally expected of a child. This is done at the expense of their developmentally
appropriate needs and pursuits and this was particularly likely if the carer was a girl (The
Australian Psychological Society, 2003).
Older carers
The ageing carer population deserves special attention because 22% of primary carers in
Australia were aged 65 and over, with 81% of these older carers caring for people in their
own age group, most often their partner (ABS, 1999). O’Connell et al (2003) provided
baseline information on a sample of older carers’ physical and mental status, using the SF-
12 quality of life measure and their engagement in social and health related activities.
Seventy-three percent of carers’ physical health scores fell below the cut-off score of 50 and
31% were below the mental health cut-off point, indicating compromised physical and
mental health. Older carers’ mean mental health scores were significantly lower than a
similar aged non-carer group. One third of carers did not participate in social and health
related activities, because they were unable to leave the care recipient on their own and
only fifty percent used respite facilities. The study pointed to the level of dependency of care
recipients where some carers provided more than 15 hours of care a day, and the potentially
negative effects this can have on carers.
Schulz and Beach (1999) identified that older spousal caregivers who experience stress from
caregiving were 63% more likely to experience early mortality than non-caregivers. The
relationship between caregiving and mortality was tested in the Caregiver Health Effects
Study using approximately 400 spousal caregivers and 400 matched controls aged 66 to
26 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004