Papers by Christina Bökberg
Journal of Nursing Scholarship, 2015
A descriptive crosscountry design concerning eight European countries as a part of the European r... more A descriptive crosscountry design concerning eight European countries as a part of the European research project, RightTimePlaceCare (RTPC). Methods: The research team in each country used a mapping system to collect country-specific information concerning dementia care and service system. The mapping system consists of fifty types of care and service activities. Sixteen of the fifty predefined activities concerning care and service at home were selected for this study and subdivided into three categories, following the stages of dementia. Findings: Availability was reported to be higher than utilization and the findings indicated more similarities than differences among the eight countries involved. Even though there were several available activities of Basic care and services and Health care interventions they were utilized by few in most countries. Furthermore, Specialized dementia care and services were sparsely available and even more sparsely utilized in the participating countries. Conclusions: The findings indicated that persons with dementia in Europe received formal care and service on a general, basic level but seldom adjusted to their specific needs. Clinical Relevance: This study describe the gap between service provision and utilization enabling nurses to develop individually adjusted care plans for persons with dementia during the progress of the disease. The findings do not include matters of quality of care or how to best organize effective care and services. However, the activities of care and services presented here should shed light on what room there is for improvement when it comes to enabling persons with dementia to go on living at home.
The overall aim of this thesis was to investigate formal care and services at home, regarding str... more The overall aim of this thesis was to investigate formal care and services at home, regarding structure, process, and outcomes, for persons with dementia (aged 65+ years) at risk of nursing home admission. Availability and utilization of formal care and services at home for persons with dementia, from diagnosis to end-of-life stage, in eight European countries was described in study I. A mapping form was used to collect data. The results revealed that availability was reported to be higher than utilization, and indicated more similarities than differences among the countries involved. Dementia-specific care and services were sparsely available and even more sparsely utilized. Study II investigated formal care providers’ views on conditions for best practice in terms of collaboration and improvement needs in the chain of care from early to end-of-life stage for persons with dementia in Sweden. Three focus group interviews were conducted to collect data. Data were analysed using conte...
Community Mental Health Journal
Affective and anxiety diagnoses are common in older people with intellectual disability (ID). The... more Affective and anxiety diagnoses are common in older people with intellectual disability (ID). The aim was to describe support and social services for older people with ID and affective and/or anxiety diagnoses, also to investigate in this study group the association between support and social services and frailty factors in terms of specialist healthcare utilisation, multimorbidity, polypharmacy, level of ID and behavioural impairment. Data was selected from four population-based Swedish national registries, on 871 identified persons with affective and/or anxiety diagnoses and ID. Multivariate regression analysis was used to investigate associations between frailty factors during 2002–2012 and social services in 2012. People with multimorbidity who frequently utilised specialist healthcare were less likely to utilise residential arrangements. Those with polypharmacy were more likely utilise residential arrangements, and receive personal contact. People with moderate, severe/profound...
Aging & Mental Health
Objectives: This study investigates specialist healthcare visits of older people with intellectua... more Objectives: This study investigates specialist healthcare visits of older people with intellectual disability ID having affective and anxiety diagnoses in comparison with the general population, as well as across different levels of ID, behavioural impairment, and living in special housing in Sweden. Method: The study is a retrospective national-register-based study from 2002-2012 of people with ID 55 years and older (n ¼ 7936) and a control group the same size matched by birth year and sex from the general population at the end of study. The study groups comprised those with affective (n ¼ 918) and anxiety (n ¼ 825) diagnoses who visited specialist healthcare, including data about living in special housing at the end of study in 2012. Results: Older people with ID and with affective and anxiety diagnoses have a higher risk of inpatient and unplanned visits to psychiatric and somatic healthcare than the general population. The average length of stay in inpatient psychiatric healthcare was higher in older people with ID and anxiety diagnoses than in the general population. Within the ID group, more inpatient and unplanned visits were made by those with moderate and severe levels of ID, behavioural impairment, and living in special housing. Conclusion: Older people with ID and affective and anxiety diagnoses are more likely to have inpatient and unplanned visits for specialist healthcare than the general population. Future research should explore the quality of healthcare services delivered by healthcare providers to older people with ID and with affective and anxiety diagnoses.
BMC Nursing
Background Few studies have focused on how older persons living in nursing homes perceive their l... more Background Few studies have focused on how older persons living in nursing homes perceive their last period of life. Furthermore, previous research on older persons’ perceptions of death and dying is limited. Hence, there is an urgent need to explore their experiences during their final period in life. Aim To explore thoughts about death and dying and experiences of care in end-of-life among older persons living in nursing homes. Methods This study employed a qualitative approach including individual interviews with 36 older persons living in Swedish nursing homes. Questions related to quality of life; physical health; thoughts about death, dying, and the future; and experiences related to the living condition and environment were asked. The interview transcripts were analysed through content analysis. The study was approved by the Regional Ethics Review Board (reference number: 2015/4). Results The analysis resulted in the identification of three main thematic categories: The unavo...
Aging & Mental Health, Mar 25, 2020
Objectives: This study investigates specialist healthcare visits of older people with intellectua... more Objectives: This study investigates specialist healthcare visits of older people with intellectual disability ID having affective and anxiety diagnoses in comparison with the general population, as well as across different levels of ID, behavioural impairment, and living in special housing in Sweden. Method: The study is a retrospective national-register-based study from 2002-2012 of people with ID 55 years and older (n ¼ 7936) and a control group the same size matched by birth year and sex from the general population at the end of study. The study groups comprised those with affective (n ¼ 918) and anxiety (n ¼ 825) diagnoses who visited specialist healthcare, including data about living in special housing at the end of study in 2012. Results: Older people with ID and with affective and anxiety diagnoses have a higher risk of inpatient and unplanned visits to psychiatric and somatic healthcare than the general population. The average length of stay in inpatient psychiatric healthcare was higher in older people with ID and anxiety diagnoses than in the general population. Within the ID group, more inpatient and unplanned visits were made by those with moderate and severe levels of ID, behavioural impairment, and living in special housing. Conclusion: Older people with ID and affective and anxiety diagnoses are more likely to have inpatient and unplanned visits for specialist healthcare than the general population. Future research should explore the quality of healthcare services delivered by healthcare providers to older people with ID and with affective and anxiety diagnoses.
Nursing Open
This is an open access article under the terms of the Creative Commons Attribution License, which... more This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
Quality of Life Research
Purpose The purpose of this study was to evaluate whether an educational palliative care interven... more Purpose The purpose of this study was to evaluate whether an educational palliative care intervention improved the quality of life for next of kin to older persons in nursing homes. Methods Altogether, 90 next of kin in the intervention group and 105 next of kin in the control group were included. Data were collected using the WHOQOL-BREF questionnaire, answered before and 3 months after the intervention was completed. Descriptive and comparative analyses were performed. Results This study found a statistically significant increase in the Physical health subscale in the intervention group but not in the control group. In contrast, the General health score decreased in the control group but not in the implementation group. Furthermore, we found an increase in the item able to perform activities of daily living in the intervention group and a decrease in the item energy and fatigue in the control group. Conclusion The results indicated small statistical changes regarding next of kins' QoL in favour of the intervention. Lessons learned from the study for future research are to include next of kin as participants at meetings about next of kin and to include more meetings about the theme next of kin. Both approaches would bring a stronger focus on the family-centred care aspect of the intervention into the education component, which this study indicates the need for. Trial registry Trial registration NCT02708498. Date of registration
BMC Palliative Care
Background: The needs of care based on palliative principles are stressed for all people with pro... more Background: The needs of care based on palliative principles are stressed for all people with progressive and/or life-limiting conditions, regardless of age and the place in which care is provided. Person-centred palliative care strives to make the whole person visible and prioritizes the satisfaction of spiritual, existential, social, and psychological needs to the same extent as physical needs. However, person-centred palliative care for older persons in nursing homes seems to be sparse, possibly because staff in nursing homes do not have sufficient knowledge, skills, and training in managing symptoms and other aspects of palliative care. Methods: This study aimed to evaluate whether an educational intervention had any effect on the staff's perception of providing person-centred palliative care for older persons in nursing homes. Methods: A knowledgebased palliative care intervention consisting of five 2-h seminars during a 6-month period was implemented at 20 nursing homes in Sweden. In total, 365 staff members were participated, 167 in the intervention group and 198 in the control group. Data were collected using two questionnaires, the Person-centred Care Assessment Tool (P-CAT) and the Person-Centred Climate Questionnaire (PCQ-S), answered before (baseline) and 3 months after (follow-up) the educational intervention was completed. Descriptive, comparative, and univariate logistical regression analyses were performed. Results: Both the intervention group and the control group revealed high median scores in all subscales at baseline, except for the subscale amount of organizational and environmental support in the P-CAT. The staff's high rating level of person-centred care before the intervention provides limited space for further improvements at follow-up. Conclusion: This study shows that staff perceived that managers' and the organization's amount of support to them in their everyday work was the only area for improvement in order to maintain person-centred care. The experiences among staff are crucial knowledge in understanding how palliative care can be made person-centred in spite of often limited resources in nursing homes. The dose and intensity of education activities of the intervention model need to be tested in future research to develop the most effective implementation model.
International Journal of Older People Nursing
This is an open access article under the terms of the Creat ive Commo ns Attri bution License, wh... more This is an open access article under the terms of the Creat ive Commo ns Attri bution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
Journal of the American Medical Directors Association
Scandinavian Journal of Caring Sciences
Journal of the American Medical Directors Association, 2014
Keywords: Dementia quality of life quality of care international comparisons a b s t r a c t Obje... more Keywords: Dementia quality of life quality of care international comparisons a b s t r a c t Objectives: To explore how quality of life (QoL) and quality of care (QoC) for people with dementia (PwD) vary across 8 European countries; to explore how QoL and QoC for PwD vary across living arrangements; and to assess the association between QoL and QoC. Design: Cross-sectional survey. Setting: Institutional long term care and home care in 8 European countries (the Netherlands, Spain, and Sweden). Participants: PwD receiving formal home care but at risk for admission to an institutional setting, and PwD who were recently admitted. Measurements: QoL was assessed by the PwD and by their best informed proxies using the Quality of Life-Alzheimer's Disease scale (QoL-AD) (range 13e52). QoC was measured using quality of care indicators (eg, the presence of depressive symptoms, the presence of pressure ulcers). Results: A total of 1123 PwD living at home (mean age 82.2, 63%women) and 791 PwD living in institutional care (mean age 84.1, 74% women) participated. QoL of PwD was most often rated highest in Sweden and England and lowest in Estonia and Spain. No differences in QoL were detected among the settings. For the QoC indicators, no consistent patterns were visible in such a way that certain countries or settings scored "higher" or "lower." The presence of depressive symptoms was most consistently associated with lower QoL (P .001). Conclusion: There is great variation in QoL and QoC scores among European countries and settings. To gain insight into the underlying causes of these differences, more knowledge is needed about the effect of different national health care systems and dementia strategies on QoL and QoC indicators. Depressive symptoms were associated with QoL, and executing longitudinal studies investigating which factors are associated with change in QoL is highly recommended.
Journal of the American Medical Directors Association, 2014
Keywords: Dementia quality of life quality of care international comparisons a b s t r a c t Obje... more Keywords: Dementia quality of life quality of care international comparisons a b s t r a c t Objectives: To explore how quality of life (QoL) and quality of care (QoC) for people with dementia (PwD) vary across 8 European countries; to explore how QoL and QoC for PwD vary across living arrangements; and to assess the association between QoL and QoC. Design: Cross-sectional survey. Setting: Institutional long term care and home care in 8 European countries (the Netherlands, Spain, and Sweden). Participants: PwD receiving formal home care but at risk for admission to an institutional setting, and PwD who were recently admitted. Measurements: QoL was assessed by the PwD and by their best informed proxies using the Quality of Life-Alzheimer's Disease scale (QoL-AD) (range 13e52). QoC was measured using quality of care indicators (eg, the presence of depressive symptoms, the presence of pressure ulcers). Results: A total of 1123 PwD living at home (mean age 82.2, 63%women) and 791 PwD living in institutional care (mean age 84.1, 74% women) participated. QoL of PwD was most often rated highest in Sweden and England and lowest in Estonia and Spain. No differences in QoL were detected among the settings. For the QoC indicators, no consistent patterns were visible in such a way that certain countries or settings scored "higher" or "lower." The presence of depressive symptoms was most consistently associated with lower QoL (P .001). Conclusion: There is great variation in QoL and QoC scores among European countries and settings. To gain insight into the underlying causes of these differences, more knowledge is needed about the effect of different national health care systems and dementia strategies on QoL and QoC indicators. Depressive symptoms were associated with QoL, and executing longitudinal studies investigating which factors are associated with change in QoL is highly recommended.
Journal of Advanced Nursing, 2014
Journal of Nursing Scholarship, 2015
To describe available and utilized formal care and service at home for persons with dementia, fro... more To describe available and utilized formal care and service at home for persons with dementia, from diagnosis to end-of-life stage, in eight European countries. A descriptive cross-country design concerning eight European countries as a part of the European research project RightTimePlaceCare. The research team in each country used a mapping system to collect country-specific information concerning dementia care and service system. The mapping system consists of 50 types of care and service activities. Sixteen of the 50 predefined activities concerning care and service at home were selected for this study and subdivided into three categories, following the stages of dementia. Availability was reported to be higher than utilization, and the findings indicated more similarities than differences among the eight countries involved. Even though there were several available activities of "basic care and services" and "healthcare interventions," they were utilized by few in most countries. Furthermore, "specialized dementia care and services" were sparsely available and even more sparsely utilized in the participating countries. The findings indicated that persons with dementia in Europe received formal care and service on a general, basic level but seldom adjusted to their specific needs. This study describes the gap between service provision and utilization enabling nurses to develop individually adjusted care plans for persons with dementia during the progress of the disease. The findings do not include matters of quality of care or how to best organize effective care and services. However, the activities of care and services presented here should shed light on what room there is for improvement when it comes to enabling persons with dementia to go on living at home.
Journal of Advanced Nursing, 2014
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Papers by Christina Bökberg