The intentional pursuit of everyday life while dying: A longitudinal qualitative study of working-aged adults living with advanced cancer

Abstract

Background: People living with advanced cancer experience functional decline and increasing difficulty participating in activities of daily living over their final year of life, consequently reducing quality of life. Palliative rehabilitation may serve to mitigate some of these challenges by optimising function. However, limited research and theory explore the rehabilitative process of adaptation amid increasing dependency, often experienced by people living with advanced cancer. Aim: To explore the lived experience of everyday life for working-aged adults living with advanced cancer, and how this changes over time. Design: A longitudinal hermeneutic phenomenological approach was employed, using in-depth semi-structured interviews. Data was analysed using inductive thematic analysis, and findings mapped against the Model of Human Occupation and illness experience literature. Setting/participants: Purposively sampled working-aged adults (40–64 years) with advanced cancer were recruited by a rural home care team in Western Canada. Results: Thirty-three in-depth interviews were conducted over 19 months with eight adults living with advanced cancer. Advanced cancer and other losses have a disruptive impact on daily life. Despite experiencing progressive functional decline, these adults intentionally sought to participate in valued everyday activities. Adaptation to ongoing deterioration occurred through engagement in daily life. Conclusions: Despite experiencing disruption to routines and daily life, people living with advanced cancer seek to continue doing what is important to them, albeit in a modified form. Adaptation to functional decline is an active, ongoing process and occurs through continued engagement in activities. Palliative rehabilitation can facilitate participation in everyday life.

Occupational adaptation for adults living with advanced cancer: A phenomenological longitudinal study

“…Study findings extend MOHO theory relating to occupational adaptation for people with advanced and progressive cancer. Other themes are reported elsewhere (Brose et al, 2023).…”

“…Purposive sampling was used to recruit participants by health-care professionals in a rural home care team if they met the study inclusion criteria: people living with advanced cancer, between 18 and 64 years old, residing in their own homes, having some difficulty with daily living tasks as per an Australian-Karnofsky Performance Scale (AKPS) score of 70 or below (Abernethy et al, 2005), and able to participate in interviews in the English language. Recruitment processes have been previously reported (Brose et al, 2023).…”

“…The 33 interviews ranged from 25 to 80 minutes and were transcribed verbatim, apart from the two interviews not recorded, where field notes were taken. Further details around reflexivity have been reported elsewhere (Brose et al, 2023). Data collection ceased at the time of death for all but two participants, where thematic saturation occurred following over 1 year of interviews (Fusch & Ness, 2015).…”

“…Thus, occupational adaptation enabled participants to maintain their sense of self through maintaining involvement in occupations pertaining to their values or interests by which they defined themselves. (Task modification is reported in more detail in Brose et al, 2023. )…”

“…As a person's function declines due to advanced cancer progression, adjustments must be made to facilitate continued occupational engagement. The role of occupational engagement and adaptation for people receiving palliative care services in recent research highlights the occupational therapist's role in adapting occupations to facilitate continued occupational engagement and optimise quality of life at the end of life (Brose et al, 2023; Chow et al, 2023; Dolgoy et al, 2021; Morgan et al, 2022; Peoples et al, 2017).…”