scholarly journals Being the next of kin of an older person living in a nursing home: an interview study about quality of life

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Helena Rosén ◽  
Lina Behm ◽  
Birgitta Wallerstedt ◽  
Gerd Ahlström
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Nursing Home ◽  
Quality Of Care ◽  
Nursing Homes ◽  
Home Care ◽  
Interview Study ◽  
Older Person ◽  
Next Of Kin

Abstract Background The length of stay in nursing homes before death in Sweden has significantly decreased, and nearly one-third of people die within 6 weeks of entering a nursing home. Support for the next of kin is one of the cornerstones of palliative care, but the principles are not always adhered to as recommended when caring for the elderly, which can affect the quality of life of their next of kin. The aim of this study was to explore the experiences of quality of life among the next of kin of older persons who live in nursing homes before an educational intervention of palliative care. Methods This is an explorative qualitative interview study with 40 next of kin using qualitative content analysis performed at baseline before the implementation of the principles of palliative care in nursing homes. Results The next of kin’s experiences of quality of life were expressed in three themes: Orientation to the new life situation, Challenges in their relationship and the Significance of the quality of care in the nursing home. The next of kin experienced a sense of relief, although the older person was constantly on their minds, and they could feel lonely. The difference in the couple’slife situations was experienced as burdensome by the next of kin. The challenges in the relationship were described as stressful, related to a guilty conscience and the older person’s vulnerability. The nursing home could be a context facilitating good relations. The perceptions of quality of care in terms of person-centredness affected the quality of life of the next of kin. Conclusions The findings show that four factors are decisive for the quality of life of next of kin: the relationships within the family, the degree of relief that nursing home care entails as compared to home care, the older person’s health status and whether the care is person-centred. Increased knowledge and education regarding palliative care in nursing homes are needed to better meet the needs of next of kin. Implementation of palliative care should take into account the need for support for next of kin. Trial registration NCT02708498, 15 March 2016.

scholarly journals No difference in effects of ‘PACE steps to success’ palliative care program for nursing home residents with and without dementia: a pre-planned subgroup analysis of the seven-country PACE trial

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Rose Miranda ◽  
◽  
Tinne Smets ◽  
Nele Van Den Noortgate ◽  
Jenny T. van der Steen ◽  
...  
Keyword(s):  
Palliative Care ◽  
Nursing Home ◽  
Quality Of Care ◽  
Nursing Homes ◽  
Care Program ◽  
Improve Quality ◽  
Palliative Care Program ◽  
Advanced Dementia ◽  
Disease Specific

Abstract Background ‘PACE Steps to Success’ is a multicomponent training program aiming to integrate generalist and non-disease-specific palliative care in nursing homes. This program did not improve residents’ comfort in the last week of life, but it appeared to improve quality of care and dying in their last month of life. Because this program included only three dementia-specific elements, its effects might differ depending on the presence or stage of dementia. We aimed to investigate whether the program effects differ between residents with advanced, non-advanced, and no dementia. Methods Pre-planned subgroup analysis of the PACE cluster-randomized controlled trial in 78 nursing homes in seven European countries. Participants included residents who died in the previous 4 months. The nursing home staff or general practitioner assessed the presence of dementia; severity was determined using two highly-discriminatory staff-reported instruments. Using after-death questionnaires, staff assessed comfort in the last week of life (Comfort Assessment in Dying–End-of-Life in Dementia-scale; primary outcome) and quality of care and dying in the last month of life (Quality of Dying in Long-Term Care scale; secondary outcome). Results At baseline, we included 177 residents with advanced dementia, 126 with non-advanced dementia and 156 without dementia. Post-intervention, respectively in the control and the intervention group, we included 136 and 104 residents with advanced dementia, 167 and 110 with non-advanced dementia and 157 and 137 without dementia. We found no subgroup differences on comfort in the last week of life, comparing advanced versus without dementia (baseline-adjusted mean sub-group difference 2.1; p-value = 0.177), non-advanced versus without dementia (2.7; p = 0.092), and advanced versus non-advanced dementia (− 0.6; p = 0.698); or on quality of care and dying in the last month of life, comparing advanced and without dementia (− 0.6; p = 0.741), non-advanced and without dementia (− 1.5; p = 0.428), and advanced and non-advanced dementia (0.9; p = 0.632). Conclusions The lack of subgroup difference suggests that while the program did not improve comfort in dying residents with or without dementia, it appeared to equally improve quality of care and dying in the last month of life for residents with dementia (regardless of the stage) and those without dementia. A generalist and non-disease-specific palliative care program, such as PACE Steps to Success, is a useful starting point for future palliative care improvement in nursing homes, but to effectively improve residents’ comfort, this program needs further development. Trial registration ISRCTN, ISRCTN14741671. Registered 8 July 2015 – Retrospectively registered.

Quality of life in people with cognitive impairment: nursing homes versus home care

2014 ◽  
Vol 27 (5) ◽  
pp. 815-824 ◽  
Author(s):  
Azlina Wati Nikmat ◽  
S. Hassan Al-Mashoor ◽  
Nurul Azreen Hashim
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Nursing Home ◽  
Cognitive Impairment ◽  
Nursing Homes ◽  
Home Care ◽  
Living Arrangements ◽  
Social Connectedness ◽  
Depression Scale

ABSTRACTBackground:The evaluation of quality of life (QoL) among older adults has become increasingly important, and living arrangements play a pivotal role in determining the QoL of people with cognitive impairment (PWCI). Although informal care (home-based) is favored, transition to formal care (residential care) often becomes necessary, especially in the later stages of cognitive impairment. The primary objective was to compare the QoL of PWCI in the community and nursing homes. Additionally, factors differentiate the QoL of PWCI in these two settings were identified.Methods:This is a quasi-experimental study design involving 219 older adults with cognitive impairment, aged 60–89 years old from both nursing home and home care. Participants completed the EUROPE Health Interview Survey-QoL (WHO-8), the Short Mini-Mental State Examination (SMMSE), the Barthel Index (BI), the Geriatric Depression Scale (GDS-15), and the Friendship Scale (FS).Results:There were significant differences in QoL, depression, social connectedness (p < 0.01) and cognitive functions (p = 0.01) between home care recipients and nursing home participants. No significant differences were observed with regards to health condition, co morbidities and physical functions between study cohorts.Conclusions:Older adults with cognitive impairment living at home experienced higher QoL, had better cognitive function, were less depressed and reported higher social connectedness compared to those living in institutional care. Therefore, support should be provided in enabling home care and empowering caregivers to provide better care for PWCI.

scholarly journals No Difference in Effects of ‘PACE Steps to Success’ Palliative Care Program for Nursing Home Residents With and Without Dementia: A Pre-Planned Subgroup Analysis of the Seven-Country PACE Trial

2020 ◽  
Author(s):  
Rose Miranda ◽  
Tinne Smets ◽  
Nele Van Den Noortgate ◽  
Jenny T. van der Steen ◽  
Luc Deliens ◽  
...  
Keyword(s):  
Palliative Care ◽  
Nursing Home ◽  
Quality Of Care ◽  
Nursing Homes ◽  
Care Program ◽  
Improve Quality ◽  
Palliative Care Program ◽  
Advanced Dementia ◽  
Disease Specific

Abstract Background ‘PACE Steps to Success’ is a multicomponent training program aiming to integrate generalist and non-disease-specific palliative care in nursing homes. This program did not improve residents’ comfort in the last week of life, but it appeared to improve quality of care and dying in their last month of life. Because this program included only three dementia-specific elements, its effects might differ depending on the presence or stage of dementia. We aimed to investigate whether the program effects differ between residents with advanced, non-advanced, and no dementia.Methods Pre-planned subgroup analysis of the PACE cluster-randomized controlled trial in 78 nursing homes in seven European countries. Participants included residents who died in the previous four months and had advanced (n=104 to 177), non-advanced (n=110 to 167) or no dementia (n=137 to 157). The nursing home staff or general practitioner assessed the presence of dementia; severity was determined using two highly-discriminatory staff-reported instruments. Using after-death questionnaires, staff assessed comfort in the last week of life (Comfort Assessment in Dying–End-of-Life in Dementia-scale; primary outcome) and quality of care and dying in the last month of life (Quality of Dying in Long-Term Care scale; secondary outcome).Results We found no subgroup differences on comfort, comparing advanced versus without dementia (baseline-adjusted mean sub-group difference 2.1; p-value=0.177), non-advanced versus without dementia (2.7; p=0.092), and advanced versus non-advanced dementia (-0.6; p=0.698); or on quality of care and dying, comparing advanced and without dementia (-0.6; p=0.741), non-advanced and without dementia (-1.5; p=0.428), and advanced and non-advanced dementia (0.9; p=0.632).Conclusions The lack of subgroup difference suggests that while the program did not improve comfort in dying residents with or without dementia, it appeared to equally improve quality of care and dying in the last month of life for residents with dementia (regardless of the stage) and those without dementia. A generalist and non-disease-specific palliative care program, such as PACE Steps to Success, is a useful starting point for future palliative care improvement in nursing homes, but to effectively improve residents’ comfort, this program needs further development.Trial registration. ISRCTN, ISRCTN14741671. Registered 8 July 2015 – Retrospectively registered.http://www.isrctn.com/ISRCTN14741671

scholarly journals A tablet-based intervention for activating nursing home residents with dementia: results from a cluster-randomized controlled trial

2021 ◽  
pp. 1-13
Author(s):  
Julie L. O’Sullivan ◽  
Sonia Lech ◽  
Paul Gellert ◽  
Ulrike Grittner ◽  
Jan-Niklas Voigt-Antons ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Randomized Controlled Trial ◽  
Nursing Home ◽  
Nursing Homes ◽  
Psychotropic Medication ◽  
Controlled Trial ◽  
Nursing Home Residents ◽  
Randomized Controlled ◽  
Cluster Randomized

Abstract Objectives: To investigate global and momentary effects of a tablet-based non-pharmacological intervention for nursing home residents living with dementia. Design: Cluster-randomized controlled trial. Setting: Ten nursing homes in Germany were randomly allocated to the tablet-based intervention (TBI, 5 units) or conventional activity sessions (CAS, 5 units). Participants: N = 162 residents with dementia. Intervention: Participants received regular TBI (n = 80) with stimulating activities developed to engage people with dementia or CAS (n = 82) for 8 weeks. Measurements: Apathy Evaluation Scale (AES-I, primary outcome), Quality of Life in Alzheimer’s Disease scale, QUALIDEM scale, Neuropsychiatric Inventory, Geriatric Depression Scale, and psychotropic medication (secondary outcomes). Momentary quality of life was assessed before and after each activity session. Participants and staff were blinded until the collection of baseline data was completed. Data were analyzed with linear mixed-effects models. Results: Levels of apathy decreased slightly in both groups (mean decrease in AES-I of .61 points, 95% CI −3.54, 2.33 for TBI and .36 points, 95% CI −3.27, 2.55 for CAS). Group difference in change of apathy was not statistically significant (β = .25; 95% CI 3.89, 4.38, p = .91). This corresponds to a standardized effect size (Cohen’s d) of .02. A reduction of psychotropic medication was found for TBI compared to CAS. Further analyses revealed a post-intervention improvement in QUALIDEM scores across both groups and short-term improvements of momentary quality of life in the CAS group. Conclusions: Our findings suggest that interventions involving tailored activities have a beneficial impact on global and momentary quality of life in nursing home residents with dementia. Although we found no clear advantage of TBI compared to CAS, tablet computers can support delivery of non-pharmacological interventions in nursing homes and facilitate regular assessments of fluctuating momentary states.

The experiences, priorities, and perceptions of informal caregivers of people with dementia in nursing homes: A scoping review

Dementia ◽  
2021 ◽  
pp. 147130122110126
Author(s):  
Alexandra E Harper ◽  
Lauren Terhorst ◽  
Marybeth Moscirella ◽  
Rose L Turner ◽  
Catherine V Piersol ◽  
...  
Keyword(s):  
Nursing Home ◽  
Nursing Homes ◽  
Home Care ◽  
Scoping Review ◽  
Informal Caregivers ◽  
Nursing Home Care ◽  
Person Centered Care ◽  
People With Dementia ◽  
Centered Care

Background Person-centered care has been shown to increase desired outcomes for people with dementia, yet informal caregivers’ dissatisfaction with care is often reported. For those living in a nursing home, informal caregivers are uniquely situated to provide key insights into the individual’s care. However, little is known of the informal caregivers’ perspective, which hinders efforts to improve their satisfaction with person-centered nursing home care. Thus, we examined the comprehensive experiences, priorities, and perceptions of informal caregivers of nursing home residents with dementia. Methods In collaboration with stakeholders, a scoping review of Medline (Ovid), EMBASE.com , CINAHL (EBSCO), the Cochrane Library (Wiley), and PsycINFO (Ovid) databases from January 2000 to July 2020 was conducted. Data were extracted reflecting the experiences, priorities, and preferences of caregivers of people with dementia residing in nursing homes. Results We identified 114 articles that revealed nine themes: (1) communication, (2) transition to nursing home, (3) quality of care, (4) quality of life, (5) informal caregiver role, (6) knowledge of dementia, (7) end-of-life preferences, (8) medication use to manage neuropsychiatric behaviors, and (9) finances. Conclusion Informal caregivers described aspects of care that led to both positive and negative experiences with and perceptions of nursing home care. The shortcomings in communication were discussed most frequently, indicating a high priority area. While researchers define the identified themes individually, informal caregivers perceive them to be interwoven as they relate to person-centered care delivery. Although we did not assess the quality of included articles, by identifying themes relevant to caregivers’ perspectives of nursing home care, our findings may help to inform efforts to optimize caregivers’ satisfaction with nursing home care for residents with dementia.

scholarly journals Quality of life of caregivers of cancer patients in home palliative care: a non-interventional study

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
E Faggian ◽  
S Favero ◽  
D Gregori ◽  
M Martinato
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Cancer Patient ◽  
Home Care ◽  
Continuity Of Care ◽  
Physical Stress ◽  
Private Life ◽  
Phone Call ◽  
Average Score

Abstract Background caregivers of home-cared cancer patient during palliative phase are often under psychological and physical pressure. This can lead to a low level quality of life (QoL). This study assesses the QoL of this type of caregiver, more specifically it aims to outline which factors (age, type of palliative care, amount of time spent daily with the patient) affect positively or negatively the QoL score. Methods The AC-QoL questionnaire has been completed by 25 caregivers of oncological patients in home care in north-eastern Italy. The questionnaire is made of 40 items divided into 8 subjects: support in care, choice of care, stress, economic issues, personal growth, sense of value, care skills and personal satisfaction. It has been administered during a home visit or during a follow-up phone call. Results The average score obtained is 71/120, which means a medium level of QoL. The factors which worsen the QoL are the psychological and physical stress (average score 5/15) and restrictions on caregivers' private life (average score 6/15). No significant differences in the QoL of the caregivers are related to social and personal variables (such as age, working condition, relationship with the patient, type of palliative care, amount of time spent daily with the patient). Conclusions These caregivers play a fundamental role in the management of an appropriate continuity of care and their health and QoL are important. Stress and restrictions on private life are the factors which worsen QoL, that's why nurses should evaluate the caregivers' wellbeing during home-visits. Caregivers usually feel able to offer adequate assistance if they have been adequately trained to by healthcare professionals: nurses should provide every useful tool to aloud the caregiver to feel able of and comfortable providing assistance to his/her relative trough an “empowerment process”. Key messages Caregiver of cancer patient in charge of home palliative care is fundamental for an appropriate continuity of care and his health and quality of life (QoL) are important to provide good assistance. Psycho-physical stress and restrictions on private life worsen QoL. Caregiver’s wellbeing should be assessed and useful tools should be provided by home care nurses to ease caregivers’ job.

scholarly journals Analyzing Nursing Home Complaints: From Substantiated Allegation to Deficiency Citations

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 82-83
Author(s):  
Kallol Kumar Bhattacharyya ◽  
Lindsay Peterson ◽  
John Bowblis ◽  
Kathryn Hyer
Keyword(s):  
Nursing Home ◽  
Quality Of Care ◽  
Nursing Homes ◽  
Staff Training ◽  
Policy And Practice ◽  
Abuse And Neglect ◽  
The Relationship ◽  
Investigation Process

Abstract Complaints provide important information to consumers about nursing homes (NHs). Complaints that are substantiated often lead to an investigation and potentially a deficiency citation. The purpose of this study is to understand the relationship between substantiated complaints and deficiency citations. Because a complaint may contain multiple allegations, and the data do not identify which allegation(s) lead to a complaint’s substantiation, we identified all substantiated single allegation complaints for NHs in 2017. Our data were drawn from federally collected NH complaint and inspection records. Among the 369 substantiated single-allegation complaints, we found most were categorized as quality of care (31.7%), resident abuse (17.3%), or resident neglect (14.1%). Of the deficiency citations resulting from complaints in our sample, 27.9% were categorized as quality of care and 19.5% were in the category of resident behavior and facility practices, which includes abuse and neglect. While two-thirds (N=239) of the substantiated complaints generated from 1 to 19 deficiency citations, nearly one third had no citations. Surprisingly, 28% of substantiated abuse and neglect allegations resulted in no deficiency citations. More surprisingly, a fifth of complaints that were categorized as “immediate jeopardy” at intake did not result in any deficiency citations. We also found a number of asymmetries in the allegation categories suggesting different processes by Centers for Medicare and Medicaid Services (CMS) region. These results suggest that the compliant investigation process warrants further investigation. Other policy and practice implications, including the need for better and more uniform investigation processes and staff training, will be discussed.

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