The hardest thing we have ever done - Palliative Care Australia

A common feature of caring for individuals with these types of disabilities is the challenge of
managing problem behaviour (Schofield et al, 1997a): 38% of carers found their care
recipient’s behaviour difficult or very difficult. The most common behaviour problems were
repetition of questions and stories, listlessness and fatigue, inability to concentrate,
crankiness or irritability, forgetfulness or confusion, hyperactivity, uncooperativeness,
depression and fearfulness. Over one in four carers reported aggression and one in ten
reported physical violence in their care recipient.
The issues of abuse of care recipients by carers have been highlighted by Fisher (2003), based
on reviewing the literature on abusive caregiving relationships in the elderly. In the
Australian population in general and more specifically among social services recipients,
about 5% to 13% of older people are victims of financial, psychological or some form of
physical abuse, perpetrated mostly by family members and those who are in caregiving
relationship with them (Kinnear & Graycar, 1999; Reis & Nahmiash, 1998). Fisher (2003) has
identified the potential for abuse to exist within palliative care families. The invisibility of
this issue has important implications for the delivery of palliative care services as the
psychological impact of such abuse may manifest in greater emotional distress and poorer
quality of life for the victim.
Impact of Caring on Carers: Physical, Social & Psychological
Research related to the demands of caregiving was primarily based upon studies of
caregivers of cancer patients and palliative care patients, elderly patients with Alzheimer’s
disease or children with a chronic or terminal illness. Many of these studies, Australian and
international, were mainly descriptive, with small sample sizes, identifying the expressed
needs of carers and family members of the recipient of care, particularly needs for
information and psychological support. Table 3 presents a selection of recent studies and
reviews undertaken in the last ten years, in Australia, Canada, the USA and the UK. Although
the list is not exhaustive of all the relevant literature addressing the impact of caring, the
issues covered by this selection are representative of those addressed in the national and
international literature in the last ten years in cancer and palliative care.
Sources of stress include uncertainty about treatment, lack of knowledge about patient care,
role changes within the family, lack of transportation for treatment, strained financial
resources, physical restrictions, lack of social support, and fears of being alone. Disruptions
and emotional strains associated with caregiving are common experiences for families of
people with cancer. Feelings of tiredness, difficulty getting enough sleep, and feelings of
resentment and isolation were the most commonly reported disruptions and emotional
strains and among the most difficult coping challenges. Carers suffered from lack of control
over everyday life, lack of self-confidence, changes in paid employment, reduction in leisure
time, deterioration in their own health, exacerbation of a previous health problem,
postponement of their own health care, and feelings of distress. Providing care to a patient
with a terminal illness may require the carer to adapt to altered family circumstances such
as moving location, reducing or ceasing paid employment or modifying the home, all of
which potentially impact upon the health and wellbeing of the carer.
Recent surveys and larger-scale studies in several countries have provided more quantitative
information on the impact of caring using larger sample sizes. In Australia, the 1999 Carers
Association Survey included a total of 1,449 respondents, representing less than one percent
of the carer population identified by the 1998 ABS survey. Although the respondents were
significantly older than the ABS population, were more long-term carers (10 years or more),
lived in rural and remote areas (19%) and were more often providing care for partner or
were carers of children with disabilities, the reported impact on their lives is applicable to
the general population of carers.
16 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004