Article

Neuromyelitis optica (NMO) is a rare neuro-inflammatory condition
characterized by acute relapses causing severe visual or physical disability. The
impact on family members and their experiences have not been studied. The study
aims were to explore the lived experience of partners of people with NMO and to
investigate potential carer burden in this population. METHOD: A mixed-method
design was used; 11 partners of people with NMO completed semi-structured
interviews; 54 partners completed Zarit Burden Interview and Hospital Anxiety and
Depression Scale. RESULTS: Three qualitative themes influenced partners' quality
of life (QoL): role/relationship; it's all about them; and the impact of NMO.
Life changed dramatically for participants after the first NMO attack,
necessitating responsibility for physical, financial, social, and emotional
support. As NMO symptoms improved and stabilized, freedom and QoL for spouses
also improved, albeit with on-going worries regarding the impact of potential
devastating future relapses. Quantitative findings showed mild/moderate carer
burden (46%), mild/moderate anxiety (59%), and mild/moderate depression (24%). No
partner indicated severe carer burden, anxiety, or depression. CONCLUSION:
Participants regarded themselves as partners rather than carers whom require
assessment and support for their emotional and health well-being. Health-care
professionals need to acknowledge the important role partners play in the
dynamics of the family unit, through greater discussion and inclusion.
Implications for Rehabilitation NMO has a strong impact on couples, resulting in
both physical caregiving needs and anxiety regarding the unpredictability of
potential devastating relapses. Partners do not necessarily experience clinically
significant "burden", anxiety or depression, and tools which screen for this may
not capture the nature of their experiences. Health-care professionals need to
acknowledge, consult, and respect the experience of partners during assessment
and implementation of action plans. Partners should be individually assessed
based upon the physical and emotional dependency created by NMO to improve their
health and well-being.

Langue : ANGLAIS