Skip to main content
. 2020 Jan 29;21:28. doi: 10.1186/s12882-020-1695-1

Table 4.

Themes arranged according to domains

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