Table 4 Themes arranged according to domains
From: Enabling good outcomes in older adults on dialysis: a qualitative study
Loss | Uncertainty | Acceptance | Support/ Relationships | |
|---|---|---|---|---|
Dialysis and the self | - Of choice: it is now either dialysis or death - Of control: nothing can be done about it - Of identity; personhood: dialysis must go well for me to be okay - Of pre-dialysis life: role, activities, ideas for the retired life | - Dialysis sessions (determine how I feel) are unpredictable - The machine tells you how I am doing, not me. - Rely on HCPs to communicate clearly: otherwise, I know nothing. - No future hopes, other than to continue dialysis until death. | - Rationalizing the need to be on dialysis - Positive outlook - Taking control of life - Use of humour to cope - Life is worth living, purposeful | - Relationships are crucial: as support and as reason for living - HCP interactions are crucial - HCPs cannot do much if they do not know how I live |
Dialysis and the body | - Of the sense of “normality”: now the machine-led life. - Of wellbeing: the prominent symptoms during and after dialysis - Of health: other medical issues continue - Of physical and mental functions through ageing | - About needling of AV fistula - pain, bleeding - Unpredictable symptoms caused by dialysis - Fluid removal on dialysis and its effects: on energy, on BP - Discomfort in the dialysis unit- chairs, temperature - Other persistent symptoms - Other unexpected illnesses, including the fear of peritonitis - Thoughts about mortality | - Acknowledge effects of ageing - Ask for help when needed - Symptoms relieved by dialysis - Pragmatic discussions about death and functional limitations - Participation in advance care planning, including options for dialysis withdrawal | - Receiving help to look after oneself - Discussion of advance care plans with family, HCPs - Discussing health issues with HCPs |
Dialysis and daily life | - Of time: for everyday things; social activities - Of dietary choices: fluid and food restrictions - Of travel possibilities: all trips linked to dialysis services - Of finances: transport costs, phone bills, lost earnings | - Repeating cycle of wellness and fatigue around the days of HD - Episodic nature of HD: the need to arrange life around dialysis times - What is done on a day depends on how the dialysis session went. | - Choosing activities according to situation & capability - Optimising health to engage in preferred activities - Seeking help where needed - Accepting and modifying diet/intake | - Receiving support from HCPs/ allied health - Maintaining and strengthening helpful relationships among family and friends - Making time for social activities |
Dialysis and others | - Of social ties - Of agency: the new need to comply with HCP instructions, rules for dialysis patients | - Others did not communicate: dialysis is not how I expected - Social commitments now depend on dialysis schedules | - Accepting help where available - Choosing to adhere to HCP recommendations | - Engagement with HCPs to improve the experience of dialysis - Maintain activities / relationships outside dialysis - Family / friends / relationships that are nurturing - Dialysis unit as a new family or social outlet |