Conserving dignity and facilitating adaptation to dependency with intimate hygiene for people with advanced disease: A qualitative study

Abstract

Background: People at the end of life experience increased dependence with self-care as disease progresses, including care with intimate hygiene. Dependence with intimate hygiene has been identified as a factor that may compromise dignity at the end of life. However, adaption to increased dependency and subsequent impact on dignity with intimate hygiene is an under-researched area. Aim: This study sought to understand how people at the end of life experience dignity with intimate hygiene when function declines and how people adapt to increased dependence with intimate hygiene needs. Design: A qualitative design was employed using a hermeneutic phenomenological perspective which privileges participant perspectives. Findings were mapped against occupational therapy and dignity literature. Setting/participants: Participants were people with advanced disease receiving inpatient or community palliative care. Results: Eighteen interviews were conducted with people about their experiences and perspectives of dignity with intimate hygiene. The following themes were constructed from the data: (1) There’s a way of doing and a way of asking, (2) Putting each other at ease, (3) It’s just how it is, (4) Regaining and retaining control. How people adjust to dependence with intimate hygiene is individually mediated. Patterns of occupational adaptation to increased dependence with intimate hygiene and practical implications for care are discussed. Conclusion: Adaptation to increased dependence with intimate hygiene is facilitated by enabling moments of micro-competence and agency over how care is received. Carers play a pivotal role in compromising or conserving the dignity with intimate hygiene at the end of life.

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

“…21,66 An important and emerging body of research demonstrates how occupational therapy interventions can facilitate the important process of adaptation to optimise participation in a range of activities, albeit in altered ways and within real life contexts. 9,66,67 Our findings support this emerging research as demonstrated by the occupational therapists’ adaptations to Peter’s home environment and wheelchair which facilitated continued engagement in activities with his spouse and children, and compensatory strategies provided by Tammy’s occupational therapist which enabled functional use of her hand despite flaccidity. While the functional benefits of rehabilitation to optimise function and participation earlier in the cancer trajectory or with an older cohort is well-documented, 65,68–70 research examining the role of rehabilitation to enable participation in work and parenting tasks undertaken by working-aged adults with advanced cancer warrants further examination.…”

“…Deterioration associated with disease progression impairs a person's ability to participate in everyday life [2][3][4][5] and has a detrimental effect on their sense of self, dignity and quality of life. [6][7][8][9][10] This is demonstrated in the most recent Medical Assistance in Dying (MAiD) data, which shows that intolerable suffering associated with inability to engage in meaningful activities is the primary reason people choose medical assistance to end their life in Canada (86.3%) 11 and the United States of America (90.9%, 90.6%). 12,13 Although this form of suffering is not routinely addressed by palliative care services, [14][15][16] there is evidence to support the mitigating effects that palliative rehabilitation can have on enabling participation through optimising function, albeit in altered form.…”