The Psychosocial Perspective

Sarah Elliott’s report is abridged from her article titled ‘Managing your headspace’ in Bloodline, vol. 43, no. 3, November 2015, the magazine of the Haemophilia Foundation of New Zealand and is reprinted with permission

Genetic Counselling Services Workshop

Chairs: Maureen Spilsbury, Dr Desdemona Chong

Dr Desdemona Chong is Clinical Psychologist with the Queensland Haemophilia Centre, Royal Brisbane & Women’s Hospital.

This workshop provided a safe and confidential platform for women from the bleeding disorders community to share their experiences as young mothers, mothers/aunts of adult sons with haemophilia, and women carriers who are considering children. There has been an unmet need for this segment of the community to express their needs and concerns and find mutual support in their common carrier status experience. Women in this group have been underrepresented in programs and resources. They deserve more attention for the many hats they wear as members of the community.

Women shared their personal experiences around genetic counselling, family planning and bringing up children with haemophilia. It was widely acknowledged that each experience was unique and personal and no one decision was more justified than the other. The session was understandably emotional for some attendees as they expressed their heartfelt emotions in front of the group. It was heartening to see attendees extending support to one another, even after the workshop had ended.

It is important for women to process their individual psychological and emotional experiences. Women who wish to get more help and support are encouraged to approach the psychosocial worker in their Haemophilia Centre for advice on where to go next. Alternatively, they can speak to their local GP and ask to be referred to a community psychologist.

Women carriers who are interested in being put on a mailing list can contact Mona at She will put you in touch with an attendee who has volunteered to manage this list.

Managing your headspace for adults

Chair: Clare Reeves
The new age challenge: haemophilia and growing older – Sarah Elliott
Evidence-based mindfulness and how it can help in your personal and professional life – Dr Ira Van der Steenstraten

Sarah Elliott is the Northern Outreach worker for the Haemophilia Foundation of New Zealand

Sarah Elliott presented an outline of her study to investigate the impact of the unique issues and challenges facing men aged 45 years and over who are living with haemophilia, including their perceptions of supports and services available to them in New Zealand.

Some initial findings, and recommendations based on these were:

  • Family is the biggest support system identified, so service providers need to keep family involved where and how possible
  • Connectedness to other men with bleeding disorders is also very important to this group, such as sharing, comradery and knowing they are not alone. Service providers need to find multiple opportunities to connect older men with bleeding disorders with one another in appropriate and relevant ways
  • These men value social participation in communities; they enjoy being involved with groups, clubs and teams. Services need to encourage and support men with haemophilia to connect with different social groups, and plan around these where possible
  • This group holds a lot of very real fears, and there are many unknowns for them.
  • Therapeutic support may be needed to help work through their fears, and practical planning and preparing for the future is important to try to prolong and increase their independence.
  • More exploration and research is needed around spirituality, religion and connectedness to culture, as these could be used as a support mechanism for those who are open to it.

This group had positive mental and emotional health, and depression was extremely low. Perhaps there are other factors in New Zealand that may be contributing to this group’s wellbeing and lack of overriding depressive factors, such as a positive outlook to life, a variety of learned coping strategies, or ways of maintaining wellness (or decreasing stress) and resilience. However, it is imperative there are standardized tools and clear processes to deal with those with emotional concerns.

Dr Ira Van der Steenstraten is a psychiatrist, psychotherapist, and family therapist and presented to the conference about mindfulness and why it is an effective strategy to use.
Current research shows that training your attention and doing selected mindfulness and meditative exercises can reduce stress, anxiety, and depression, boost the immune system, and strengthen your ability to focus your attention where you want it to be. It has even been shown to change the architecture of your brain.

Evidence has shown that meditation is no longer just for “hippies” and its benefits are now widely accepted by scientists and the general public both young and old. Mindfulness training programs have been implemented in schools, hospitals, sports, corporate business, and the military.

There are many verified benefits to mindfulness training:

  • Training your body to be non-judgmental creates space to allow new opportunities to arise
  • If your mind or body is in discomfort and you try to ignore it or resist it then it will only increase stress
  • Mindfulness can help you accept situations
  • It teaches that your thoughts are something you have but not what you are. You cannot stop your thoughts but you can gain control by learning not to listen to them
  • Mindfulness techniques can be particularly effective for people suffering a chronic condition.

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