Carer experiences of inpatient hospice care for people with dementia, delirium and related cognitive impairment

Bolton, L. Worth; Loveard, Tanya; Brander, Penny

doi:10.12968/ijpn.2016.22.8.396

Cited by 12 publications

(32 citation statements)

References 15 publications

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“…Unfortunately, few qualitative studies exist on perceived care at residential hospices that could be compared to our findings. An in-depth study of caregivers ( n = 10) of patients in a hospice in New Zealand found that these experiences were characterized by staff being attuned to individual patients' needs and preferences in an environment that engenders qualities similar to those found in our study (Bolton et al, 2016). A recent meta-synthesis of the palliative care experience in hospital, based on patient and caregiver narratives from 16 studies, identified 6 essential themes, seemingly applicable to all care settings: expert care, effective communication and shared decision making, respectful and compassionate care, adequate environment for care, family involvement, and financial affairs (Virdun et al, 2016).…”

Section: Discussionsupporting

confidence: 72%

The care experiences of patients who die in residential hospice: A qualitative analysis of the last three months of life from the views of bereaved caregivers

et al. 2017

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Objective: Despite the increasing prominence of residential hospices as a place of death and that, in many regards, this specialized care represents a gold standard, little is known about the care experience in this setting. Using qualitative survey data, we examined the positive and negative perceptions of care in hospices and in other prior settings.Method: Qualitative comments were extracted from the CaregiverVoice survey completed by bereaved caregivers of decedents who had died in 16 residential hospices in Ontario, Canada. On this survey, caregivers reported what was good and bad about the services provided during the last three months of life as separate open-text questions. A constant-comparison method was employed to derive themes from the responses.Results: A total of 550 caregivers completed the survey, 94% (517) of whom commented on either something good (84%) and/or bad (49%) about the care experience. In addition to residential hospice, the majority of patients represented also received palliative care in the home (69%) or hospital (59%). Overall, most positive statements were about care in hospice (71%), whereas the negative statements tended to refer to other settings (81%). The hospice experience was found to exemplify care that was compassionate and holistic, in a comforting environment, offered by providers who were personable, dedicated, and informative. These humanistic qualities of care and the extent of support were generally seen to be lacking from the other settings.Significance of results: Our examination of the good and bad aspects of palliative care received is unique in qualitatively exploring palliative care experiences across multiple settings, and specifically that in hospices. Investigation of these perspectives affirmed the elements of care that dying patients and their family caregivers most value and that the hospices were largely effective at addressing. These findings highlight the need for reinforcing these qualities in other end-of-life settings to create comforting and supportive environments.

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Section: Discussionsupporting

confidence: 72%

The care experiences of patients who die in residential hospice: A qualitative analysis of the last three months of life from the views of bereaved caregivers

et al. 2017

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“…The 16 studies were based in Australia ( n = 4), 22 , 23 , 36 – 39 Canada ( n = 4), 40 – 44 UK ( n = 2), 45 , 46 USA ( n = 2), 47 , 48 Japan ( n = 2), 49 , 50 Israel ( n = 1) 51 – 53 and New Zealand ( n = 1). 54 Three of the studies were conducted by co-authors of this review. 23 , 37 – 39 , 41 The majority of studies were conducted in palliative care inpatient settings, including seven based only in hospital inpatient units 22 , 23 , 37 – 39 , 41 , 42 , 48 , 51 – 53 and six based only in hospice inpatient units.…”

Section: Resultsmentioning

confidence: 99%

“…Person-centred care, communication and challenges: Clinicians described taking a person-centred approach to care for patients with delirium, 23,43,44,46,50,54 "I love the whole approach and it is holistic in here -we look at the whole patient and everything that makes a difference." 46 (Nurse, p.531)…”

Section: Trustworthiness Of Findingsmentioning

confidence: 99%

The experience of delirium in palliative care settings for patients, family, clinicians and volunteers: A qualitative systematic review and thematic synthesis

et al. 2021

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Background: Delirium is common in palliative care settings and is distressing for patients, their families and clinicians. To develop effective interventions, we need first to understand current delirium care in this setting. Aim: To understand patient, family, clinicians’ and volunteers’ experience of delirium and its care in palliative care contexts. Design: Qualitative systematic review and thematic synthesis (PROSPERO 2018 CRD42018102417). Data sources: The following databases were searched: CINAHL, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, Embase, MEDLINE and PsycINFO (2000–2020) for qualitative studies exploring experiences of delirium or its care in specialist palliative care services. Study selection and quality appraisal were independently conducted by two reviewers. Results: A total of 21 papers describing 16 studies were included. In quality appraisal, trustworthiness (rigour of methods used) was assessed as high ( n = 5), medium ( n = 8) or low ( n = 3). Three major themes were identified: interpretations of delirium and their influence on care; clinicians’ responses to the suffering of patients with delirium and the roles of the family in delirium care. Nursing staff and other clinicians had limited understanding of delirium as a medical condition with potentially modifiable causes. Practice focused on alleviating patient suffering through person-centred approaches, which could be challenging with delirious patients, and medication use. Treatment decisions were also influenced by the distress of family and clinicians and resource limitations. Family played vital roles in delirium care. Conclusions: Increased understanding of non-pharmacological approaches to delirium prevention and management, as well as support for clinicians and families, are important to enable patients’ multi-dimensional needs to be met.

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“…However, the response patterns for two items did not accord with Rasch expectations, and so were removed in the PCQ-S-R. Item 1 (‘a place where I feel welcome’) was removed, which might be of some concern given this has been identified as an important aspect of service user and carer experience, at least in hospital settings [42]. Arguably, the notion of ‘feeling welcome’ is pertinent in joining new environments that is not one’s own, and may be less suited to long-term residential settings where some will have been resident for many months and years.…”

Section: Discussionmentioning

confidence: 99%

A Rasch analysis of the Person-Centred Climate Questionnaire – staff version

Wilberforce

Sköldunger

Edvardsson

2019

BMC Health Serv Res

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BackgroundPerson-centred care is the bedrock of modern dementia services, yet the evidence-base to support its implementation is not firmly established. Research is hindered by a need for more robust measurement instruments. The 14-item Person-Centred Climate Questionnaire - Staff version (PCQ-S) is one of the most established scales and has promising measurement properties. However, its construction under classical test theory methods leaves question marks over its rigour and the need for evaluation under more modern testing procedures.MethodsThe PCQ-S was self-completed by nurses and other care staff working across nursing homes in 35 Swedish municipalities in 2013/14. A Rasch analysis was undertaken in RUMM2030 using a partial credit model suited to the Likert-type items. Three subscales of the PCQ-S were evaluated against common thresholds for overall fit to the Rasch model; ordering of category thresholds; unidimensionality; local dependency; targeting; and Differential Item Functioning. Three subscales were evaluated separately as unidimensional models and then combined as subtests into a single measure. Due to large number of respondents (n = 4381), two random sub-samples were drawn, with a satisfactory model established in the first (‘evaluation’) and confirmed in the second (‘validation’). Final item locations and a table converting raw scores to Rasch-transformed values were created using the full sample.ResultsAll three subscales had disordered thresholds for some items, which were resolved by collapsing categories. The three subscales fit the assumptions of the Rasch model after the removal of two items, except for subscale 3, where there was evidence of local dependence between two items. By forming subtests, the 3 subscales were combined into a single Rasch model which had satisfactory fit statistics. The Rasch form of the instrument (PCQ-S-R) had an adequate but modest Person Separation Index (< 0.80) and some evidence of mistargeting due to a low number of ‘difficult-to-endorse’ items.ConclusionsThe PCQ-S-R has 12 items and can be used as a unidimensional scale with interval level properties, using the nomogram presented within this paper. The scale is reliable but has some inefficiencies due to too few high-end thresholds inhibiting discrimination amongst populations who already perceive that person-centred care is very good in their environment.

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Carer experiences of inpatient hospice care for people with dementia, delirium and related cognitive impairment

Cited by 12 publications

References 15 publications

The care experiences of patients who die in residential hospice: A qualitative analysis of the last three months of life from the views of bereaved caregivers

The care experiences of patients who die in residential hospice: A qualitative analysis of the last three months of life from the views of bereaved caregivers

The experience of delirium in palliative care settings for patients, family, clinicians and volunteers: A qualitative systematic review and thematic synthesis

A Rasch analysis of the Person-Centred Climate Questionnaire – staff version

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