The flowchart (Figure 1) gives an overview of the study identification process. The search in all databases yielded 809 unique articles. After title and abstract screening, 722 articles were excluded. In total, 87 full text articles were screened for eligibility. The main reasons for exclusion were ‘not nursing home or long-term institutional care’ (n=37), ‘no full text available’ (n=18) and ‘no measurement of quality of care’ (n=12). All other reasons for exclusion (n=15) were described in the flowchart. Finally, five studies were included in this scoping review.
Characteristics of the articles
The final five articles included in this scoping review were published in 2009 (n=1), 2011 (n=2), 2014 (n=1) and 2016 (n=1). Two of these studies (16, 17) originated in the United Kingdom, one (18) in the USA, one (19) in Norway, and one (1) in the Netherlands. There were four studies (1, 16-18) with a qualitative study design and one study (19) with a quantitative study design. Of the five included studies, one study (18) focused only on HD residents (n=1) and two studies (1, 17) only on PD residents (n=2). One study (19) combined PD residents with MS, MND/ALS residents, and one study (16) combined PD residents with MS, MND/ALS and/or HD residents.
Methodological quality
Appendix 2 shows the methodological quality of the five included articles. Methodological quality scores ranged from 0.25 to 0.95. One qualitative article was assessed as having ‘poor’ methodological quality (18), one qualitative article as having a ‘moderate’ methodological quality (16) and three articles (two qualitative and one quantitative) as ‘outstanding’ methodological quality (1, 17, 19).
Data collection in studies
Van Rumund et al. (1) and Wilson et al. (16) both used focus groups of formal caregivers as a method for collecting data. They looked at QoC for residents in nursing homes and hospice/neurological care centers from the perspective of the formal caregiver. In addition, Wilson et al. (16) used interviews with formal caregivers of residents living in a hospice/neurological care center. Van Rumund et al. (1) and Armitage et al. (17) used interviews with residents living in a nursing home and informal caregivers to collect data about QoC. Sandsdalen et al. (19) employed a survey among residents living in a palliative unit of a nursing home to measure QoC from the perspective of residents. In the study of Dellefield et al. (18) a description of the care provision for residents living in a skilled nursing facility was made from the perspective of formal caregivers.
The characteristics of identified studies are presented in Table 1.
Table 1 Characteristics of identified studies on measurement of Quality of Care
Author
|
Year
|
Research topic
|
Target group
|
Settings
|
Methods of data collection and participants
|
Focus groups
|
Interviews
|
Surveys
|
Other methods
|
Wilson et al.
|
2011
|
Discussions with health care staff about providing palliative and end-of-life care.
|
MS, PD, MND, HD
|
Neurological care centers
Hospice
|
Health care staff (n=77)
|
Health care staff (n=3)
|
|
|
Van Rumund et al.
|
2014
|
Quality of PD care in Dutch nursing homes from the perspectives of residents, informal caregivers, and professionals.
|
PD
|
Nursing homes
|
Health care staff (n=35)
|
Residents (n=15)
Informal caregivers (n=15)
|
|
|
Sandsdalen et al.
|
2016
|
Patients’ perceptions on the quality of palliative care in and across different care settings.
|
Among others MS, ALS, PD
|
Palliative units in nursing homes
|
|
|
Survey of nursing home residents (n=8)*
|
|
Armitage et al.
|
2009
|
Residents/ relatives’ perspective on the quality of care provision.
|
PD
|
Care homes
|
|
Relatives (n=51)
Patients (n=24)
|
|
|
Dellefield et al.
|
2011
|
Nursing and interdisciplinary lessons learned in providing care.
|
HD
|
Skilled nursing facility
|
|
|
|
Description of care provision (n=53)
|
Extraction of the results. MS, Multiple Sclerosis; PD, Parkinson’s Disease; MND, Motor Neuron Disease; HD, Huntington’s Disease; ALS, Amyotrophic Lateral Sclerosis. * Maximum of 8 patients, exact number not specified further
Instruments used in studies
Sandsdalen et al. (19) used the ‘Quality from the patients’ perspective instrument specific to palliative care’ (QPP-PC). The QPP-PC is a 52-item instrument that is divided into four dimensions of quality: ‘medical-technical competence of the caregiver’, ‘physical-technical conditions of the care organization’, ‘identity-orientation approach’ and ‘sociocultural atmosphere’ and three single items about medical care, personal hygiene and atmosphere (19). The other four studies did not use a specific instrument to assess quality of care, but used topic lists and/or themes to measure QoC (1, 16-18).
Process and outcome items
Table 2 shows two different results. The first results (the items with a “#”-sign) are the items used in the data collection of the different studies to assess QoC among nursing home residents with neurodegenerative diseases and/or among formal and informal caregivers (process items). The second results (the items with a “+”-sign) are outcome items; these items are the results in the different studies of what residents with neurodegenerative diseases and/or their formal and informal caregivers mention as being important aspects of QoC.
We found 60 different items, of which 36 were process items and 17 were outcome items. Seven items were used both as process and outcome item and were thus overlapping; these were derived from the same study (19).
Table 2 Data extraction of the identified studies
Domains used to measure quality of care
|
Items used to measure quality of care
|
Target group where item is assessed
|
Patients
|
Informal caregivers
|
Formal caregivers
|
Emotional support
|
Getting to know patient is essential to understanding their wishes and needs (1)
|
|
|
+
|
Emotional support (2)
|
#
|
#
|
#
|
Emotional support and empathy (2)
|
+
|
+
|
+
|
Respect and empathy (3)
|
#+
|
|
|
Honesty (3)
|
#++
|
|
|
Meaningfulness (3)
|
#
|
|
|
Identity-orientation approach (3)
|
#
|
|
|
Spiritual and existential (3)
|
# (++ lowest score)
|
|
|
Emotional wellbeing (4)
|
#
|
#
|
|
Enjoyment, entertainment and well-being (5)
|
|
|
#
|
Spirituality (5)
|
|
|
#
|
Promotion of dignity (5)
|
|
|
#
|
Promotion of autonomy (5)
|
|
|
#
|
Physical support
|
Pleasant and safe atmosphere (3)
|
#++
|
|
|
Safety and order (5)
|
|
|
#
|
Social support
|
Difficulties with access to community services and equipment (1)
|
|
|
+
|
Sociocultural atmosphere (3)
|
#
|
|
|
Relatives and friends (3)
|
#++
|
|
|
Social functioning (4)
|
#
|
#
|
|
Nature of relatives’ involvement (4)
|
+
|
+
|
|
Care home environment and culture (4)
|
+
|
+
|
|
Meaningful social interaction (5)
|
|
|
#
|
Care
|
Nursing (2)
|
|
|
#
|
Medical treatment (2)
|
|
|
#
|
Multidisciplinary care (2)
|
|
|
#
|
Treatment (2)
|
#
|
#
|
|
Care (2)
|
#
|
#
|
|
Medical care (3)
|
#+
|
|
|
Participation (3)
|
# (++ lowest score)
|
|
|
Continuity (3)
|
# (+ lowest score)
|
|
|
Care provision (4)
|
+
|
+
|
|
Care content
|
Personal hygiene (3)
|
#++
|
|
|
Access to help, food and equipment (3)
|
#+
|
|
|
Symptom relief (3)
|
#
|
|
|
Exhaustion (3)
|
# (++ lowest score)
|
|
|
Physical functioning (4)
|
#
|
#
|
|
Cognitive functioning (4)
|
#
|
#
|
|
Functional variation (4)
|
+
|
+
|
|
Nutrition (5)
|
|
|
#
|
Functional competence (5)
|
|
|
#
|
Comfort (5)
|
|
|
#
|
Expertise
|
Highlighted importance of teamwork and shared expertise (1)
|
|
|
+
|
Not always possible to identify the dying phase (1)
|
|
|
+
|
Expertise (2)
|
|
|
#
|
Clustering of PD patients (2)
|
#
|
#
|
#
|
Staff knowledge on PD-related issues (2)
|
+
|
+
|
+
|
Neurologist involvement (2)
|
+
|
+
|
+
|
Specialized PD nurse (2)
|
+
|
+
|
+
|
Clustering of residents into specialized PD units (2)
|
+
|
+
|
+
|
Medical technical competence of caregiver (3)
|
#
|
|
|
Lack of PD information (4)
|
+
|
+
|
|
Communication
|
Complexity of the conditions prove a challenge for care, particularly in terms of communication (1)
|
|
|
+
|
Information (3)
|
# (+ lowest score)
|
|
|
Communication (5)
|
|
|
#
|
Organization of care
|
Elements of a good death include limiting transfers to hospital (1)
|
|
|
+
|
Suggestions for improvement (2)
|
#
|
#
|
#
|
Budget and staff occupation (2)
|
+
|
+
|
+
|
Physical technical conditions of the care organization (3)
|
#
|
|
|
Planning and cooperation (3)
|
#
|
|
|
Care management (4)
|
#
|
#
|
|
#Item in instrument or study used to assess quality of care (process item), +Item assessed by patients, informal caregivers or formal caregivers as being an important concept in measuring quality of care (outcome item)
References
- Wilson E, Seymour J, Aubeeluck A. Perspectives of staff providing care at the end of life for people with progressive long-term neurological conditions. Palliative & supportive care. 2011;9(4):377-85.
- van Rumund A, Weerkamp N, Tissingh G, Zuidema SU, Koopmans RT, Munneke M, et al. Perspectives on Parkinson disease care in Dutch nursing homes. Journal of the American Medical Directors Association. 2014;15(10):732-7.
- Sandsdalen T, Grondahl VA, Hov R, Hoye S, Rystedt I, Wilde-Larsson B. Patients' perceptions of palliative care quality in hospice inpatient care, hospice day care, palliative units in nursing homes, and home care: a cross-sectional study. BMC palliative care. 2016;15(1):79.
- Armitage G, Adams J, Newell R, Coates D, Ziegler L, Hodgson I. Caring for persons with Parkinson's disease in care homes: perceptions of residents and their close relatives, and an associated review of residents' care plans. Journal of Research in Nursing. 2009;14(4):333-48.
- Dellefield ME, Ferrini R. Promoting Excellence in End-of-Life Care: lessons learned from a cohort of nursing home residents with advanced Huntington disease. The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses. 2011;43(4):186-92.
Overarching domains
After coding the 60 different items derived from the included articles, eight overarching domains emerged. These eight domains are: ‘emotional support’, ‘physical support’, ‘social support’, ‘care’, ‘care content’, ‘expertise’, ‘communication’ and, finally, ‘organization of care’. The overarching domains and the different items belonging to these domains are described in Table 2.