Dr Moana Harlen is Senior Psychologist Haemophilia at the Queensland Haemophilia Centre, Brisbane
What a privilege it was to be able to present at the WFH World Congress in Orlando. I was very humbled by the many presentations I attended particularly the personal stories shared by patients and family members. I was invited to speak on Family Functioning as part of the psychosocial session on family caregiving and bleeding disorders. My presentation is summarised below.
Chair: Sylvia von Mackensen, Germany
– Moana Harlen, Australia
At the paediatric Queensland Haemophilia Centre located at the Lady Cilento Children’s Hospital in Brisbane we provide an individualised parenting program called the Family Factor program. It utilises an integrated framework to provide psychosocial support to the children with haemophilia and their families who come under our care by assessing, setting goals and providing support in different areas of family functioning. The framework draws on what we know to be of importance to meet the developmental needs of children, and the many factors that can impact on a parents stress levels that in turn can make parenting much harder. The ultimate aim is to optimise development outcomes for children who have haemophilia.
Our centre conducted a small pilot project in 2013-2014 with Dr Paul Harnett from the University Of Queensland School of Psychology to assess the usefulness of the program to meet the needs of families with children up to 12 years of age who had severe haemophilia and were on prophylaxis.
Five domains of family functioning were assessed which included child functioning, parenting stress, daily hassles, social supports and significant life events. Prophylaxis adherence and haemophilia-related Quality of Life were also assessed. Assessment findings showed that the parents who participated perceived their child with severe haemophilia as generally doing well in areas of emotions, behaviour, friendships, and helpfulness. However some parents reported their child as having very high activity levels and difficulties with attention span.
The domain of family functioning that appeared most compromised was that related to the parents’ own wellbeing in the form of stress experienced around parenting, daily hassles of parenting and support. For instance seven of the ten parents reported experiencing high levels of stress specifically related to parenting their child with haemophilia. What was interesting was that even though parents were experiencing high levels of parenting stress this did not appear to impact too greatly on maintaining prophylaxis treatment as all parents reported adhering to the prophylaxis regimen over this period.
Further follow up assessment was conducted where necessary and collaborative goals set with the families in specific domains of family functioning considered to be impacting negatively on the family. Although the parents did not report too much difficulty with managing the behaviours of their child with haemophilia, some did want to set goals around improving the behaviour of and/or their relationship with a sibling of the child with haemophilia.
Interventions included psychological interventions to improve parental coping skills, child behaviour management, and enhancing social supports. The level of intervention varied depending on the goals set and ranged from a few supportive phone calls to weekly home visits or phone calls over a few months.
For the families of our centre the integrated parenting framework has been useful in identifying the specific areas of stress families are experiencing particularly around parenting, managing stress and social supports. Providing an individualised program that sets collaborative goals and provides psychosocial support in these different domains is considered important in helping parents cope and thus enhancing family functioning.
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