Planning for an uncertain future in progressive neurological disease: a qualitative study of patient and family decision-making with a focus on eating and drinking

Table 1 Cross-tabulation of participants, disease groups and decision-making capacity (N = 29 participants consented)

Cluster code	Primary participant disease group	Primary participant decision-making capacity^a	Primary participant age group in years	Years since diagnosis	Nominated relative or friend	Total no. of patients and relatives within cluster	No. of participants consented for interview^b
A	Frontotemporal Dementia	Partial	65–80	6	Wife	2	2
B	Alzheimer’s Disease	No	65–80	3	Friend	2	1
C	Parkinson’s Disease	Yes	65–80	2	Partner	2	2
D	Parkinson’s Disease	Yes	65–80	1	Daughter	2	2
E	Multiple Sclerosis	Yes	40–64	19	N/A	1	1
F	Multiple Sclerosis	Yes	40–64	8	Husband	2	2
G	Motor Neurone Disease	Yes	65–80	< 1	Wife	2	2
H	Motor Neurone Disease	No	65–80	2	Husband	2	1
I	Motor Neurone Disease	Yes	40–64	2	N/A	1	1
J	Progressive Supranuclear Palsy	Yes	65–80	5	[Relative relationship redacted]	2	2
K	Huntington’s Disease	No	65–80	3	Husband	2	1
L	Huntington’s Disease	Yes	40–64	15	Husband	2	2
M	Multiple Sclerosis	No	65–80	23	Wife	2	1
N	Progressive Supranuclear Palsy	Partial	65–80	1	Husband	2	2
0	Motor Neurone Disease	Yes	65–80	< 1	Wife	2	2
P	Progressive Supranuclear Palsy	Yes	40–65	3	Husband	2	2
Q	Alzheimer’s Disease	No	65–80	12	Wife	2	1
R	Parkinson’s Disease	Yes	65–80	6	Husband	2	2
Totals						34	29

^aDecision-making capacity assessed at time of interview by the interviewer in relation to the capacity to participate in a qualitative interview
^bWhere the primary participant (patient participant) had partial or variable decision-making capacity, assent for interview participation was taken from a consultee by the interviewer. Where the primary participant did not have the capacity to participate in an interview, interviews were not undertaken with them

ISSN: 1471-2377