Negotiating boundaries of care: an interpretative phenomenological analysis of the relational conflicts surrounding home mechanical ventilation following traumatic spinal cord injury

Figures & data

Table 1. Participant information.

Patient pseudonym	M/F	Age (yrs)	Time dependent on MV (yrs)	Time since injury (yrs)	Place of residence	Informal carer pseudonym	M/F	Age (yrs)	Relationship to patient	Formal Carer pseudonym(s)	Experience of MV carer role (yrs)
Colin	M	51	5–6	27	Family home	Linda	F	45	Sister	Lorna	1–2
Jane	F	71	4	3–4	Care home	Steve	M	71	Husband	Cathie & Sylvia	3, 2
Richard	M	35	20	20–21	Home, living independently	Aileen	F	39	Sister	Karen & Gillian	20, 21
William	M	31	5–6	7	Family home	Sharon	F	55	Mother	Morag	5
Craig	M	60	6–7	34	Home, living independently	Kaye	F	49	Sister	David	2
Robert	M	18	Phrenic Nerve Pacing	15.5	Family home, University (on campus residence)	Lynn	F	50	Mother	Lisa	10
Roy	M	50	8	7	Family home	Rachel	F	50	Wife	Ruth	8
John	M	38	10	10	Family home	Susan	F	50	Wife	Irene & Lorna	10, 2

Table 2. Master themes across all three participant groups.

Master Theme	Patient	Informal (family) caregiver	Formal (paid) caregiver
Acceptance and adjustment	yes	yes	no
Care regime	no	yes	yes
Concerns for children	no	yes	no
Coping	yes	yes	no
Dehumanisation	yes	no	no
Family home vs residential care	no	yes	no
Fears for the future	no	yes	no
Inconsistent training	no	yes	yes
Learning on the job	no	no	yes
Loss of control	yes	yes	no
Loss of freedom	yes	yes	no
Loss of independence	yes	yes	no
Machinery- unpredictability	no	yes	yes
Negotiating boundaries of care and finding a ‘fit’	yes	yes	yes
Onset of injury/realisation of severity of injury	yes	yes	no
Poor medical care/lack of training	no	yes	yes
Rewarding nature of caregiving	no	no	yes
Stigma	yes	no	no
Suicidality	yes	no	no
Ups and downs	yes	yes	no

Figure 1. Negotiating boundaries of care and ‘finding a fit’.