The Complexities of Prescribing Assistive Equipment at the End of Life—Patient and Caregivers’ Perspectives

Abstract

Ongoing participation in valued and essential everyday activities remains a priority for people with advanced disease. This study sought to understand factors influencing patients with advanced disease and caregivers’ utilisation of assistive equipment that enable this participation. Employing a pragmatic approach, purposive sampling identified participants who were interviewed in their homes. A semi-structured interview guide was employed to elicit community dwelling patients’ and caregivers’ perspectives about assistive equipment utilisation. Recorded interviews were analysed inductively and themes were constructed from the data. Fourteen interviews were conducted with patients and caregivers. Patients had a range of cancers and COPD. Three empirically developed themes demonstrate the complexities associated with the use of assistive equipment at the end of life: 1. Enabling engagement in everyday activities; 2. Dependency—a two-way street; 3. The pragmatics of choosing, using or declining assistive equipment. Participants were motivated to use assistive equipment when it optimised their function, enabled participation and supported their values, roles and interests. Conversely, use of assistive equipment could be met with ambivalence as it represented deterioration or could cause conflict within relationships. Caregivers found assistive equipment made it easier for them to provide physical care. Skilled proactive assistive equipment prescription and training by allied health professionals enhanced patient and caregiver confidence and capacity to engage in everyday activities.

Assistive technology in palliative care: a statewide equipment programme

“…Recent research, outside of symptom management, has identified that adults receiving palliative care seek to maintain independence (leading to reduced carer burden and improved QOL),1–3 5 the ability to get around1 6 and engage in self-care routines 5 6. Assistive equipment may help this population perform their activities of daily living with the potential benefits of saving time and energy,4 as well as enable participation 6…”