Background Those living with life-limiting conditions and physical disability are living longer (McLaughlin, Marosi, Robb, 2020; Landfelt, Thompson, Sejersen, et al., 2020). Advancing age can bring increasing disability and dependence, contrasted with a desire for autonomy and control. At home, such young adults create useable and safe environments around them, achieving more independent living (Bann, Abresch, Biesecker, et al., 2015; Frank, 2020). The lack of such an environment within a hospice may be a barrier to using the services on offer.
To understand what is important to a young adult on admission to a hospice inpatient unit (IPU).
To create an independent and accessible environment for young adults at The Prince and Princess of Wales Hospice.
Methods SHANARRI wellbeing indicators (Scottish Government. Getting it right for every child (GIRFEC), 2017) – safe, healthy, achieving, nurtured, active, responsible, respected and included - were used as a template to gather feedback following a young adult’s IPU stay. This involved a one-to-one conversation, capturing verbatim what they said. A process of change was then commenced, and the results shared with the young adult: ‘You said, we did’.
Results The young adult identified that access to the following items in the IPU were essential to ensure wellbeing during their stay:
Equipment: e.g., profiling bed, mattress, tracking hoist.
Technology: e.g., gaming, computer, phones, WiFi.
Environmental controls: e.g., lighting, heating, call system, monitoring.
Conclusions Feedback in the form of ‘You said, we did’ demonstrates commitment to listening and responding, enables rich communication, generates feelings for the young adult of being respected and appreciated, and accelerates adoption of a wide range of changes by the hospice for the young adults. Using verbatim what the young adult said made the case for change personal and more credible. Connection to, and control of, their world, through technology and environmental controls, contributes to their overall mental health and wellbeing. Reproducing their home environments ensures that, when in new surroundings, they are not wholly dependent on others but rather they are safe, achieving, and more independent.
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