It seems to me that family caregivers are the healthcare professionals of the future, and the challenge now is to understand the needs of family carers and to develop relevant support systems, to harness the natural resilience of families and communities.
Resilience exists more often than we think in this changing world of austerity and over-medicalisation.
At the European Association of Palliative Care World Congress in Denmark last month there was a refreshing focus on the issue of family carers.
A session by Christiane Kreyer from Austria focused on how families ‘struggle for normal’ during serious illness to achieve a sense of stability and safety. Various strategies are used within the family to achieve feelings of control and self-efficacy.
It was suggested that carers particularly struggle with unpredictable trajectories. When facing abrupt changes in someone’s condition, daily life has to be restructured and family relationships have to be rebalanced.
Taking control 24/7 and ‘doing it all’ is one such control strategy – expert, effective but is it sustainable?
Assessing carers’ needs
In her plenary, Professor Gunn Grande reminded us that many services for carers have sprung up, often creative and charity-led, but she questioned whether these are the services that can really make a difference to support those who are caring.
She believes that the key is individualized assessment of carers needs – not a ‘doorstep’ question such as ‘are you coping?’ as the nurse leaves the house.
Gunn reminded us that carers are in the fragile dual role of co-worker in the caring team as well as being a person affected by the impact of future loss.
She highlighted the CSNAT (Carers Support Needs Assessment Tool) developed with Gail Ewing. This simple tool is being tested around the world as a simple validated self-assessment of carers needs. The results to date are remarkable.
Not surprisingly, research using CSNAT in Australia presented by Samar Aoun has shown that assessment of carers needs is cathartic in itself, legitimised concerns, prompted reflection and gave the caregiver courage to ask for help.
Meeting carers’ needs
There is always a concern that assessment might open a Pandoras box of needs that we don’t know how to meet – therefore we don’t ask!
The results of CSNAT research to date suggests that the commonest concern of carers is ‘knowing what to expect in the future’ – that concern maybe about who to ring in a crisis, how to share difficult news with the family, what symptoms to be worried about.
We can all help with these concerns – but we need to identify them through assessment. Nurses using the CSNAT tool have often been surprised by what carers identify as their needs – pre-conceptions are challenged!
Dr Ann Millberg from Sweden has looked at families from a systemic view, to identify why some families do well during long periods of caring.
The research team used a resilience scale (Wagnild Scale) and discovered that a sense of optimism promotes family function and the key is to build on strengths in the family rather than focus too much on burden and strain.
Urgent support in a crisis has been identified as a key need for families caring round the clock – wise, practical and confident advice with the ability to visit quickly if needed.
A remarkable government funded service is evolving in Madrid; we heard about PAL24 from Dr Maria Merino. This is a Madrid-wide service (a catchment of 6 million people!) supported by a responsive palliative advice and visiting team involving a rota of doctors and nurses covering the whole city at night – their motto is ‘from sunset to dawn’ and is specifically to support dying patients being cared for at home. Initial costings suggest a ball park cost of €900,000 with an estimated saving in hospital admissions of €5 million!
And finally, I often reflect on a job description (above) for full-time carer, written by Mary, a carer, for our hospice newsletter back in 2004. Life hasn’t got any easier.