PATIENTS AND CARERS EXPERIENCE OF LIVING WITH A COMPLEX AND RARE NEUROLOGICAL AND PALLIATIVE DIAGNOSIS
Introduction A growing body of literature suggests that living with a complex, rare and/ or progressive neurological condition can have significant impact on a patient and families/ carer psychological and emotional wellbeing (McLeod and Clarke 2009). Many patients are invisible to the health care system (Day 2012). Leventhal's Self Regulation theory will underpin understanding of the coping strategies adopted. Leventhal and proponents of this theory suggest that we are active participants in our health care (Leventhal, 2003, Helder 2002). Therefore, if we are able to recognise patients' illness representations we can better coordinate care to suit those who receive it. Bowen's Family Systems Theory will be referenced when discussing the experience of the patients' nominated family member.
Aims and Methods To investigate the patient and carers experience(s) of living with a complex neurological and palliative diagnosis. Secondary data was used from the analysis of the service evaluation study of the ‘My Needs Now’ project hosted by Hertfordshire Community Healthcare Trust.
Results A number of themes emerged namely, Professional Knowledge and Understanding, Time and Progression, The Family, and Coping Strategies. It is apparent that health professionals need to develop their specific knowledge about complex, neurological and palliative diagnoses and engage with patients and carers as individual cases distributing knowledge appropriately. Whilst patients and carers must adopt a range of coping strategies allowing them to both reactively and proactively engage with support over the course of the disease.
Conclusions Health professionals should facilitate the development of knowledge with any patient or carer who wishes to expand their understanding of the disease they are living with. Similarly, the duality of knowledge between patient and carer should be respected and the desire for information must never be assumed.
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