Caregiver experiences of hospice dementia care: a systematic review and meta-ethnography

Figures & data

Figure 1. PRISMA 2020 flow diagram (adapted from Page et al., 2021).

Figure 2. Expressed synthesis: Expectancy-disconfirmation paradigm in carers’ satisfaction with hospice dementia care (informed by Oliver., 1980).

Line of argument: The Expectancy-disconfirmation paradigm entails that when carers’ expectations of care were not matched by either hospice staff or the physical care environment of the hospice setting (e.g., whether the environment was not dementia friendly) there was a reduced level of satisfaction in carers with respect to the care received. On the contrary, when carers’ expectation was matched by the staff and or because of hospice setting being adequately dementia friendly, a more positive experience was reported from carers. Having good knowledge of palliative and end-of-life dementia care early on during disease trajectory and of dementia being a progressive condition, could help carers better handle the difficulty and unpredictability of end-of-life and palliative care.

Table 1. Meta-ethnography: Third order constructs.

Third order constructs	Theme Categories
Expectations of care	1a. Knowledge of end-of-life dementia care Being carer for long time (Wittenberg-Lyles et al., 2012) Knowledge of dementia as progressive (Sanders et al., 2009; Wittenberg-Lyles et al., 2012)
	1b. Perceived level of support Level of support during hospice care (Bolton et al., 2016; Wladkowski, 2017) Level of support after hospice discharge (Wladkowski, 2016)
Barriers to quality of care	2a. Unmatched expectations Not being supported (Sanders et al., 2009; Wittenberg-Lyles et al., 2012) Questioning hospice quality of care (Sanders et al., 2009; Wladkowski, 2016) Fear of discharge (Wladkowski, 2016, 2017)

Table

	Defining Terms
1	exp dementia/
2	exp alzheimer’s disease/
3	(dement* or alzheimer*).ti,ab.
4	(caregiver* or relative* or spouse* or dyad* or carer* or partner*).ti,ab.
5	(palliative* or end of life or comfort* or hospice*).ti,ab.
6	exp end of life/
7	exp hospice/
8	5 or 6 or 7
9	1 or 2 or 3
10	(qual* or experience* or interview*).ti,ab.
11	4 and 8 and 9 and 10

Table

Author	Year	Country	Study design	Study aims	Theoretical framework	Qualitative methods of data collection	Qualitative methods of data analysis	Themes (2^nd order constructs)
Bolton et al. (2016)	2016	New Zealand	Qualitative	To explore carers’ experiences of inpatient unit (IPU) hospice dementia care for people with dementia, delirium and related cognitive impairment.	Not clearly reported	Semi-structured interviews	Thematic analysis	Carer confidence Staff awareness Environmental support Discharge preparedness
Sanders et al. (2009)	2009	USA	Qualitative	To explore ways caregivers respond to the end stages of dementia with the support of hospice.	ethnomethodology	Longitudinal semi-structured Interviews and observation	Constant comparative methods	Disengaged caregivers Questioning caregivers All-consumed caregivers Reconciled caregivers
Wittenberg-Lyles et al. (2012)	2012	USA	Qualitative	To explore specific stressors that hospice caregivers experience to inform the design of appropriate interventions.	Assessing caregivers for team interventions (ACT)	Semi-structured Interviews and observation	Thematic analysis	Witnessing decline Patient struggles Second-guess pain management Outsider’s evaluation Family communication Sleep deprivation Financial headaches Rationalising guilt Role expectations Role mastery Emotion handling Anticipatory grief
Wladkowski (2016, 2017)	2016/2017	USA	Qualitative	To explore the experience of discharge from hospice in caregivers of people with dementia.	Not clearly reported	Semi-structured Interviews and observation	Thematic analysis	Impact of discharge on caregiver’s grief process Caregiver role Loss of support from hospice Loss of comprehensive benefit and model of care Caregivers’ experience with discharge process

Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D., Shamseer, L., Tetzlaff, J. M., Akl, E. A., Brennan, S. E., Chou, R., Glanville, J., Grimshaw, J. M., Hróbjartsson, A., Lalu, M. M., Li, T., Loder, E. W., Mayo-Wilson, E., McDonald, S., … Moher, D. (2021). The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ (Clinical Research ed.), 372, n71. http://www.prisma-statement.org/ https://doi.org/10.1136/bmj.n71

 PubMed Web of Science ®Google Scholar

Wittenberg-Lyles, E., Demiris, G., Parker Oliver, D., Washington, K., Burt, S., & Shaunfield, S. (2012). Stress variances among informal hospice caregivers. Qualitative Health Research, 22(8), 1114–1125. https://doi.org/10.1177/1049732312448543

 PubMed Web of Science ®Google Scholar

Sanders, S., Butcher, H. K., Swails, P., & Power, J. (2009). Portraits of caregivers of end-stage dementia patients receiving hospice care. Death Studies, 33(6), 521–556. https://doi.org/10.1080/07481180902961161

 PubMed Web of Science ®Google Scholar

Bolton, L., Loveard, T., & Brander, P. (2016). Carer experiences of inpatient hospice care for people with dementia, delirium and related cognitive impairment. International Journal of Palliative Nursing, 22(8), 396–403. https://doi.org/10.12968/ijpn.2016.22.8.396

 PubMedGoogle Scholar

Wladkowski, S. P. (2017). Dementia caregivers and live discharge from hospice: What happens when hospice leaves? Journal of Gerontological Social Work, 60(2), 138–154. https://doi.org/10.1080/01634372.2016.1272075

 PubMed Web of Science ®Google Scholar

Wladkowski, S. P. (2016). Live discharge from hospice and the grief experience of dementia caregivers. Journal of Social Work in End-of-Life & Palliative Care, 12(1-2), 47–62. https://doi.org/10.1080/15524256.2016.1156600

 PubMed Web of Science ®Google Scholar