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.