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Contains fulltext : 194344.pdf (Publisher’s version ) (Open Access)

Contains fulltext : 196607.pdf (publisher's version ) (Open Access)

Contains fulltext : 196147.pdf (publisher's version ) (Open Access), BACKGROUND: An ageing population in the EU leads to a higher need of long-term institutional care at the end of life. At the same time, healthcare costs rise while resources remain limited. Consequently, an urgency to extend our knowledge on factors affecting efficiency of long-term care facilities (LTCFs) arises. This study aims to investigate and explain variation in technical efficiency of end-of-life care within and between LTCFs of six EU countries: Belgium (Flanders), England, Finland, Italy, the Netherlands and Poland. In this study, technical efficiency reflects the LTCFs' ability to obtain maximal quality of life (QoL) and quality of dying (QoD) for residents from a given set of resource inputs (personnel and capacity). METHODS: Cross-sectional data were collected by means of questionnaires on deceased residents identified by LTCFs over a three-month period. An output-oriented data-envelopment analysis (DEA) was performed, producing efficiency scores, incorporating personnel and capacity as input and QoL and QoD as output. Scenario analysis was conducted. Regression analysis was performed on explanatory (country, LTCF type, ownership, availability of palliative care and opioids) and case mix (disease severity) variables. RESULTS: 133 LTCFs of only one type (onsite nurses and offsite GPs) were considered in order to reduce heterogeneity. Variation in LTCF efficiency was found across as well as within countries. This variation was not explained by country, ownership, availability of palliative care or opioids. However, in the 'hands-on care at the bedside' scenario, i.e. only taking into account nursing and care assistants as input, Poland (p = 0.00) and Finland (p = 0.04) seemed to be most efficient. CONCLUSIONS: Efficiency of LTCFs differed extensively across as well as within countries, indicating room for considerable efficiency improvement. Our findings should be interpreted cautiously, as comprehensive comparative EU-wide research is challenging as it i

Contains fulltext : 196156.pdf (publisher's version ) (Open Access), BACKGROUND: ACP enables individuals to define and discuss goals and preferences for future medical treatment and care with family and healthcare providers, and to record these goals and preferences if appropriate. Because general practitioners (GPs) often have long-lasting relationships with people with dementia, GPs seem most suited to initiate ACP. However, ACP with people with dementia in primary care is uncommon. Although several barriers and facilitators to ACP with people with dementia have already been identified in earlier research, evidence gaps still exist. We therefore aimed to further explore barriers and facilitators for ACP with community-dwelling people with dementia. METHODS: A qualitative design, involving all stakeholders in the care for community-dwelling people with dementia, was used. We conducted semi-structured interviews with community dwelling people with dementia and their family caregivers, semi structured interviews by telephone with GPs and a focus group meeting with practice nurses and case managers. Content analysis was used to define codes, categories and themes. RESULTS: Ten face to face interviews, 10 interviews by telephone and one focus group interview were conducted. From this data, three themes were derived: development of a trust-based relationship, characteristics of an ACP conversation and the primary care setting. ACP is facilitated by a therapeutic relationship between the person with dementia/family caregiver and the GP built on trust, preferably in the context of home visits. Addressing not only medical but also non-medical issues soon after the dementia diagnosis is given is an important facilitator during conversation. Key barriers were: the wish of some participants to postpone ACP until problems arise, GPs' time restraints, concerns about the documentation of ACP outcomes and concerns about the availability of these outcomes to other healthcare providers. CONCLUSIONS: ACP is facilitated by an open relationship based o

Contains fulltext : 193327.pdf (publisher's version ) (Open Access)

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Contains fulltext : 190314.pdf (publisher's version ) (Open Access), OBJECTIVE: To evaluate the effectiveness of a nurse-supported self-management programme to improve social participation of dual sensory impaired older adults in long-term care homes. DESIGN: Cluster randomised controlled trial. SETTING: Thirty long-term care homes across the Netherlands. PARTICIPANTS: Long-term care homes were randomised into intervention clusters (n=17) and control clusters (n=13), involving 89 dual sensory impaired older adults and 56 licensed practical nurses. INTERVENTION: Nurse-supported self-management programme. MEASUREMENTS: Effectiveness was evaluated by the primary outcome social participation using a participation scale adapted for visually impaired older adults distinguishing four domains: instrumental activities of daily living, social-cultural activities, high-physical-demand and low-physical-demand leisure activities. A questionnaire assessing hearing-related participation problems was added as supportive outcome. Secondary outcomes were autonomy, control, mood and quality of life and nurses' job satisfaction. For effectiveness analyses, linear mixed models were used. Sampling and intervention quality were analysed using descriptive statistics. RESULTS: Self-management did not affect all four domains of social participation; however. the domain 'instrumental activities of daily living' had a significant effect in favour of the intervention group (P=0.04; 95% CI 0.12 to 8.5). Sampling and intervention quality was adequate. CONCLUSIONS: A nurse-supported self-management programme was effective in empowering the dual sensory impaired older adults to address the domain 'instrumental activities of daily living', but no differences were found in addressing the other three participation domains. Self-management showed to be beneficial for managing practical problems, but not for those problems requiring behavioural adaptations of other persons. TRIAL REGISTRATION NUMBER: NCT01217502; Results.

Item does not contain fulltext, The notion of social health (Huber et al., 2011) as applied to dementia care research was introduced to redress the balance of empirical studies that tended to focus on biomedical, cognitive, and functional status in dementia (Vernooij-Dassen and Jeon, 2016). The introduction of social health has followed the zeitgeist of campaigners for a better life for those living with dementia, with initiatives to improve the social images of dementia (Alzheimers.org, 2017). Examples from social research in dementia to examine friendships and the social environments of people with dementia exist (Medeiros et al., 2012), but introduction of the paradigm of social health in dementia (Vernooij-Dassen and Jeon, 2016) has harnessed a growing research agenda (de Vugt and Droes, 2017). This paradigm provides an umbrella concept to study how social aspects influence the dynamic balance between opportunities and limitations in dementia. Social health goes beyond the neuropathology of dementia, to understand how people, their social networks and wider society with its norms, interact with the condition (Vernooij-Dassen and Jeon, 2016). It is not far removed from the ideas of Tom Kitwood, the pioneer of person-centered dementia care, who noted that "personhood is a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being" (Kitwood, 1997). The INTERDEM (Early detection and timely INTERvention in DEMentia, www.interdem.org) psychosocial research agenda aspired to improve knowledge about social inclusion and reciprocal relationships for people with dementia (Moniz-Cook et al., 2011). The concept of social health (Vernooij-Dassen and Jeon, 2016) with its dimensions for dementia research (Droes et al., 2017) has begun to develop this knowledge-base.

Item does not contain fulltext, Dementia can interfere with the maintenance of social interactions. The ability to participate in social interactions is one of the elements that enables good social health (Hubert et al., 2011), and having dementia does not automatically eliminates the person's opportunity to have good social health (Vernooij-Dassen and Jeon, 2016). We highlighted in a previous study that people with dementia who did not know each other interacted spontaneously when they were in a stimulating social interaction setting (Mabire et al., 2016). However, a lack of activity and social interaction in nursing homes is still a widespread issue (Harper Ice, 2002). Stimulation of social interactions is rarely used as an intervention and social interactions are seldomly used as social health related outcomes.

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Radboud University, 06 juli 2018, Promotores : Nijhuis-van der Sanden, M.W.G., Vernooij-Dassen, M.J.F.J. Co-promotor : Graff, M.J.L., Contains fulltext : 191609.pdf (publisher's version ) (Open Access)

Radboud University, 22 november 2017, Promotor : Vernooij-Dassen, M.J.F.J. Co-promotores : Smits, C.H.M., Jukema, J.S., Contains fulltext : 178242.pdf (publisher's version ) (Open Access)

Item does not contain fulltext, BACKGROUND: Many patients with cancer suffer from pain, which is often not optimally treated. In 2008, the evidence-based, multidisciplinary Dutch guideline on the diagnosis and treatment of pain in this patient group was published. We assessed knowledge about and adherence to the guideline by pain specialists. METHODS: A cross-sectional case vignette survey describing a palliative patient with intractable pancreatic cancer and pain was sent to all 350 Dutch anesthesiologists registered as pain specialists at the Netherlands Association of Anesthesiology. Descriptive statistics were conducted. RESULTS: Ninety-three pain specialists completed the questionnaire (27%). The majority appeared to follow the guideline recommendations on pharmacological (99%) and invasive treatment (95%) in the diverse stages of the disease. However, the recommendation to use a one-dimensional pain scale to evaluate the effect of pain treatment and the recommendation to perform a multidimensional pain assessment if the patient in pain is in a deteriorating stage were only followed by a minority of the respondents (23% and 15%, respectively). CONCLUSIONS: Regarding most recommendations, Dutch pain specialists know and intend to follow the national multidisciplinary cancer pain guideline. Yet, only a minority of them perform structural pain assessment of the patient with cancer pain. However, as the response rate was low (27%), the results should be interpreted with caution and cannot be generalized to the entire population of pain specialists in the Netherlands. We recommend that, in the guideline update and implementation programs, more attention be given to thorough assessment of the patient with pain and cancer.

Item does not contain fulltext, BACKGROUND: Shared decision-making (SDM) is a means of allowing people with dementia to take part in making choices, be autonomous and participate in social activities. Involving them in SDM is an important way of promoting social health. However, including families and dementia residents in decision-making can be challenging for care staff working in nursing homes. The objective of this study was to identify barriers and facilitators regarding the implementation of an SDM framework for care planning in two nursing homes, one in Italy and one in the Netherlands. METHODS: Focus group interviews were conducted with healthcare professionals who, after being trained, applied the SDM framework. Content analysis was used to analyze the data. RESULTS: Six months after the feasibility trial, focus group interviews with healthcare professionals (n = 10 in Italy; n = 9 in the Netherlands) were held. We found 6 themes and 15 categories. Within these themes, facilitators and barriers were identified. The categories of team collaboration, communication skills and nursing home policy were found to be facilitators to the implementation process, whereas regulations, lack of funding and of involvement of family caregivers were the main barriers. Family attitudes towards SDM could be both. The main difference between countries concerned the residents' cognitive status that influenced their degree of involvement. CONCLUSION: Communication skills training for professionals, training of family caregivers, and involvement of the management in the implementation process seem to be crucial factors in successfully implementing SDM in nursing homes, and increasing the involvement of families and dementia residents in decision-making.

Contains fulltext : 170080.pdf (publisher's version ) (Open Access), OBJECTIVE: To gain insights into the problems of dual sensory impaired older adults in long-term care. Insights into these problems are essential for developing adequate policies which address the needs of the increasing population of dual sensory impaired older adults in long-term care. METHODS: A qualitative study was conducted in parallel with a cluster randomized controlled trial. Dual sensory impaired older adults in the intervention group (n = 47, age range 82-98) were invited by a familiar nurse to identify the problems they wanted to address. Data were taken from the semi-structured intervention diaries in which nurses noted the older adults' verbal responses during a five-month intervention period in 17 long-term care homes across the Netherlands. The data were analyzed using descriptive statistics and qualitative content analysis based on the Grounded Theory. FINDINGS: The 47 dual sensory impaired older adults identified a total of 122 problems. Qualitative content analysis showed that the older adults encountered participation problems and problems controlling what happens in their personal environment. Three categories of participation problems emerged: (1) existential concerns of not belonging or not being able to connect with other people, (2) lack of access to communication, information and mobility, and (3) the desire to be actively involved in care delivery. Two categories of control-in-personal-space problems emerged: (1) lack of control of their own physical belongings, and (2) lack of control regarding the behavior of nurses providing daily care in their personal environment. CONCLUSIONS: The invasive problems identified indicate that dual sensory impaired older adults experience great existential pressures on their lives. Long-term care providers need to develop and implement policies that identify and address these problems, and be aware of adverse consequences of usual care, in order to improve dual sensory impaired residents' autonomy and qua

Item does not contain fulltext, This prospective multiperspective study provides insight into the decision trajectories of people with dementia by studying the decisions made and related key events. This study includes three waves of interviews, conducted between July 2010 and July 2012, with 113 purposefully selected respondents (people with beginning to advanced stages of dementia and their informal and professional caregivers) completed in 12 months (285 interviews). Our multilayered qualitative analysis consists of content analysis, timeline methods, and constant comparison. Four decision themes emerged-managing daily life, arranging support, community living, and preparing for the future. Eight key events delineate the decision trajectories of people with dementia. Decisions and key events differ between people with dementia living alone and living with a caregiver. Our study clarifies that decisions relate not only to the disease but to living with the dementia. Individual differences in decision content and sequence may effect shared decision-making and advance care planning.

Item does not contain fulltext, In this article, we describe the current state of affairs with respect to informal care for people with dementia. We focus on the impact of informal care on the caregiver, caregiving strategies and effective ways to support informal caregivers, including e-health and technological support.- Informal care for people with dementia is intense and has consequences, both positive and negative: 78% of informal caregivers has good feelings about the care they give, but 15% feels heavily burdened.- A stimulating and supportive approach creates a positive and safe environment. Person-centred interventions providing several types of support are most effective for people with dementia and their informal caregivers.- E-health and technological interventions have favourable effects on trust, concern and depressive symptoms of informal caregivers.- New interventions should focus more on social health: interactions between people with dementia and their informal caregivers and encouragement of both to use their abilities.

Item does not contain fulltext, A qualitative exploration of the stigma of dementia reported that general practitioners described lack of reciprocity as one way in which people with dementia are perceived within society. This was closely linked to their perception of dementia as a stigma. In this article, we explore whether general practitioners perceive people with dementia as lacking reciprocity and, if so, if this is linked with societal opinions about dementia as a stigma. The implications of both perceptions of people with dementia failing to reciprocate and of stigma for timely diagnosis are explored. Our approach is to follow the thread of reciprocity in the data from our initial study. In this follow-up study, general practitioners' perceptions of societal views of people with dementia included a perception of a lack of reciprocity specifically linked with; failing to respond to human contact, the absence of an appropriate return on social investment and failing to contribute to, or being a burden on, society. General practitioners reported a link between societal perceptions of lack of reciprocity and stereotypes about advanced dementia, difficulties communicating with people with dementia, and lack of opportunities for people with dementia to reciprocate. General practitioners occupy a key position, they can challenge stereotypes and, with support and targeted training about communicating with people living with dementia, can emphasize the ways in which people with dementia can communicate, thereby enhancing their potential to reciprocate. Such changes have implications for improved care and quality of life through the continued maintenance of social inclusion and perceptions of personhood.

Item does not contain fulltext, BACKGROUND: Family caregivers of people living with dementia can have both positive and negative experiences of caregiving. Despite this, existing outcome measures predominately focus on negative aspects of caregiving such as burden and depression. This review aimed to evaluate the development and psychometric properties of existing positive psychology measures for family caregivers of people living with dementia to determine their potential utility in research and practice. METHOD: A systematic review of positive psychology outcome measures for family caregivers of people with dementia was conducted. The databases searched were as follows: PsychINFO, CINAHL, MEDLINE, EMBASE, and PubMed. Scale development papers were subject to a quality assessment to appraise psychometric properties. RESULTS: Twelve positive outcome measures and six validation papers of these scales were identified. The emerging constructs of self-efficacy, spirituality, resilience, rewards, gain, and meaning are in line with positive psychology theory. CONCLUSIONS: There are some robust positive measures in existence for family caregivers of people living with dementia. However, lack of reporting of the psychometric properties hindered the quality assessment of some outcome measures identified in this review. Future research should aim to include positive outcome measures in interventional research to facilitate a greater understanding of the positive aspects of caregiving and how these contribute to well-being.

Contains fulltext : 170099.pdf (publisher's version ) (Open Access), BACKGROUND: In cost-effectiveness analyses in healthcare, Quality-Adjusted Life Years are often used as outcome measure of effectiveness. However, there is an ongoing debate concerning the appropriateness of its use for decision-making in palliative care. AIM: To systematically map pros and cons of using the Quality-Adjusted Life Year to inform decisions on resource allocation among palliative care interventions, as brought forward in the debate, and to discuss the Quality-Adjusted Life Year's value for palliative care. DESIGN: The integrative review method of Whittemore and Knafl was followed. Theoretical arguments and empirical findings were mapped. DATA SOURCES: A literature search was conducted in PubMed, EMBASE, and CINAHL, in which MeSH (Medical Subject Headings) terms were Palliative Care, Cost-Benefit Analysis, Quality of Life, and Quality-Adjusted Life Years. FINDINGS: Three themes regarding the pros and cons were identified: (1) restrictions in life years gained, (2) conceptualization of quality of life and its measurement, including suggestions to adapt this, and (3) valuation and additivity of time, referring to changing valuation of time. The debate is recognized in empirical studies, but alternatives not yet applied. CONCLUSION: The Quality-Adjusted Life Year might be more valuable for palliative care if specific issues are taken into account. Despite restrictions in life years gained, Quality-Adjusted Life Years can be achieved in palliative care. However, in measuring quality of life, we recommend to-in addition to the EQ-5D- make use of quality of life or capability instruments specifically for palliative care. Also, we suggest exploring the possibility of integrating valuation of time in a non-linear way in the Quality-Adjusted Life Year.

Contains fulltext : 170085.pdf (Publisher’s version ) (Open Access), BACKGROUND: Because the pattern of illnesses changes in an aging population and many people manage to live well with chronic diseases, a group of health care professionals recently proposed reformulating the static WHO definition of health towards a dynamic one based on the ability to physically, mentally and socially adapt and self-manage. This paper is the result of a collaborative action of the INTERDEM Social Health Taskforce to operationalize this new health concept for people with dementia, more specifically the social domain, and to formulate directions for research and practice to promote social health in dementia. METHOD: Based on the expertise of the Social Health Taskforce members (N = 54) three groups were formed that worked on operationalizing the three social health dimensions described by Huber et al.: (1) capacity to fulfil potential and obligations; (2) ability to manage life with some degree of independence; (3) participation in social activities. For each dimension also influencing factors, effective interventions and knowledge gaps were inventoried. After a consensus meeting, the operationalizations of the dimensions were reviewed by the European Working Group of People with Dementia (EWGPWD). RESULTS: The social health dimensions could be well operationalized for people with dementia and are assessed as very relevant according to the Social Health Taskforce and EWGPWD. Personal (e.g. sense of coherence, competencies), disease-related (e.g. severity of cognitive impairments, comorbidity), social (support from network, stigma) and environmental factors (e.g. enabling design, accessibility) that can influence the person with dementia's social health and many interventions promoting social health were identified. CONCLUSION: A consensus-based operationalization of social health in dementia is proposed, and factors that can influence, and interventions that improve, social health in dementia identified. Recommendations are made for research and pract

Contains fulltext : 182511.pdf (publisher's version ) (Open Access), OBJECTIVE: To explore how people with dementia, their informal caregivers and their professionals participate in decision making about daycare and to develop a typology of participation trajectories. DESIGN: A qualitative study with a prospective, multiperspective design, based on 244 semistructured interviews, conducted during three interview rounds over the course of a year. Analysis was by means of content analysis and typology construction. SETTING: Community settings and nursing homes in the Netherlands. PARTICIPANTS: 19 people with dementia, 36 of their informal caregivers and 38 of their professionals (including nurses, daycare employees and case managers). RESULTS: The participants' responses related to three critical points in the decision-making trajectory about daycare: (1) the initial positive or negative expectations of daycare; (2) negotiation about trying out daycare by promoting, resisting or attuning to others; and (3) trying daycare, which resulted in positive or negative reactions from people with dementia and led to a decision. The ways in which care networks proceeded through these three critical points resulted in a typology of participation trajectories, including (1) working together positively toward daycare, (2) bringing conflicting perspectives together toward trying daycare and (3) not reaching commitment to try daycare. CONCLUSION: Shared decision making with people with dementia is possible and requires and adapted process of decision making. Our results show that initial preferences based on information alone may change when people with dementia experience daycare. It is important to have a try-out period so that people with dementia can experience daycare without having to decide whether to continue it. Whereas shared decision making in general aims at moving from initial preferences to informed preferences, professionals should focus more on moving from initial preferences to experienced preferences for people with dementia. Professi

Radboud University, 13 november 2017, Promotores : Vernooij-Dassen, M.J.F.J., Kempen, G.I.J.M., Zuidema, S.U. Co-promotor : Graff, M.J.L., Contains fulltext : 177939.pdf (publisher's version ) (Open Access)

Contains fulltext : 174294.pdf (publisher's version ) (Closed access), OBJECTIVE: This study describes the process elements of decision-making for dementia, in order to enrich a model to facilitate shared decision-making for professionals working with people with dementia and their informal caregivers. METHODS: We performed a qualitative study based on secondary analysis of 117 interviews from 23 care networks consisting of people with dementia, their informal caregivers and professionals. Findings were compared to an existing model of collaborative deliberation. RESULTS: We made an enhancement to the existing collaborative deliberation model, to include: (1) constructive network engagement, (2) recognizing the need for a decision, (3) defining what to decide on, (4) developing alternatives, (5) constructing preferences through deliberation and trying out alternatives, (6) multiple preference integration, and (7) evaluating decision-making. CONCLUSION: In describing the process elements of decision-making in dementia, this empirical study proposes a modification of the model of collaborative deliberation for the context of dementia care. The adaptation highlights the special attention needed to recognize and define what to decide on, try out alternatives, and handle conflicting interests and preferences. PRACTICE IMPLICATIONS: Professionals should be attentive to mark the start of the decision-making process and work with participants towards a shared view on the pressing matters at hand.

Item does not contain fulltext, OBJECTIVE: We developed a tailor-made intervention aimed at improving social participation of people with cognitive problems and their caregivers. This programme consists of an integration of healthcare and welfare interventions: occupational therapy, physiotherapy and guidance by a welfare professional. This article describes the feasibility evaluation of this Social Fitness Programme. METHODS: Feasibility in terms of acceptability, demand, implementation, practicability and limited efficacy was evaluated based on experiences from professionals (programme deliverers), people with cognitive problems and their caregivers (programme recipients). We used qualitative research methods (focus group discussions, interviews, collection of treatment records) and applied thematic analyses. RESULTS: The intervention was feasible according to stakeholders, and limited efficacy showed promising results. However, we found feasibility barriers. First, an acceptability barrier: discussing declined social participation was difficult, hindering recruitment. Second, a demand barrier: some people with cognitive problems lacked motivation to improve declined social participation, sometimes in contrast to their caregivers' wishes. Third, implementation and practicability barriers: shared decision-making, focusing the intervention and interdisciplinary collaboration between healthcare and welfare professionals were suboptimal during implementation. DISCUSSION: Although this intervention builds upon scientific evidence, expert opinions and stakeholder needs, implementation was challenging. Healthcare and welfare professionals need to overcome obstacles in their collaboration and focus on integrated intervention delivery. Also, they need to find ways to (empower caregivers to) motivate people with cognitive problems to participate socially. After modifying the intervention and additional training of professionals, a consecutive pilot study to assess feasibility of the research design and ou

Item does not contain fulltext, BACKGROUND: Care planning nowadays is a key activity in the provision of services to nursing home residents. A care plan describes the residents' needs and the actions to address them, providing both individualized and standardized interventions and should be updated as changes in the residents' conditions occur. OBJECTIVE: The aim of this review was to identify the core elements of the implementation of changes in nursing homes' care plans, by providing an overview of the type of stakeholders involved, describing the implementation strategies used, and exploring how care plans changed. METHODS: An integrative literature review was used to evaluate intervention studies taking place in nursing homes. Data were collected from PubMed, CINHAL-EBSCO, and PsycINFO. English language articles published between 1995 and April 2015 were included. Data analysis followed the strategy of Knafl and Whittemore. RESULTS: Twenty-six articles were included. The stakeholders involved were professionals, family caregivers, and patients. Only a few studies directly involved residents and family caregivers in the quality improvement process. The implementation strategies used were technology implementation, audit, training, feedback, and supervision. The majority of interventions changed the residents' care plans in terms of developing a more standardized care documentation that primarily focuses on its quality. Only some interventions developed more tailored care plans that focus on individualized needs. CONCLUSION: Care plans generally failed in providing both standardized and personalized interventions. Efforts should be made to directly involve residents in care planning and provide professionals with efficient tools to report care goals and actions in care plans.

Item does not contain fulltext, The Dutch clinical practice guideline on the diagnosis and management of pain in patients with cancer was published in 2008 and intensively promoted to healthcare professionals who see patients with cancer. One of the most important recommendations is the systematic registering of the pain and its intensity. To evaluate in which degree this part of the practice guideline is implemented, we analyzed the medical records of patients attending the outpatient oncological clinic in an academic hospital, a large teaching hospital, and 4 smaller peripheral hospitals. None of the participating hospitals assessed pain by a standardized scale. Reference to pain in the medical record happened more frequently in the academic hospital than in the other hospitals. The frequency of recording pain in the medical record in the academic hospital was much higher in this study than the one previously reported, whereas the findings in the other hospitals were comparable. There may be several reasons for the difference in reporting rate of pain in patients with cancer. Our findings indicate that the clinical practice guideline with regard to pain registration is poorly implemented in oncology outpatient clinics. More efforts should be made to generate the awareness for the need of pain registration.

Contains fulltext : 167779.pdf (publisher's version ) (Open Access), OBJECTIVES: To gain insights into the process of nurses' changing perceptions when trained to implement a self-management programme for dual sensory impaired older adults in long-term care, and into the factors that contributed to these changes in their perceptions. DESIGN: Qualitative study alongside a cluster randomised controlled trial. SETTING: 17 long-term care homes spread across the Netherlands. PARTICIPANTS: 34 licensed practical nurses supporting 54 dual sensory impaired older adults. INTERVENTION: A 5-month training programme designed to enable nurses to support the self-management of dual sensory impaired older adults in long-term care. PRIMARY OUTCOMES: Nurses' perceptions on relevance and feasibility of the self-management programme collected from nurses' semistructured coaching diaries over the 5-month training and intervention period, as well as from trainers' reports. RESULTS: Nurses' initial negative perceptions on relevance and feasibility of the intervention changed to positive as nurses better understood the concept of autonomy. Through interactions with older adults and by self-evaluations of the effect of their behaviour, nurses discovered that their usual care conflicted with client autonomy. From that moment, nurses felt encouraged to adapt their behaviour to the older adults' autonomy needs. However, nurses' initial unfamiliarity with conversation techniques required a longer exploration period than planned. Once client autonomy was understood, nurses recommended expanding the intervention as a generic approach to all their clients, whether dual sensory impaired or not. CONCLUSIONS: Longitudinal data collection enabled exploration of nurses' changes in perceptions when moving towards self-management support. The training programme stimulated nurses to go beyond 'protocol thinking', discovering client autonomy and exploring the need for their own behavioural adaptations. Educational programmes for practical nurses should offer more longitudin

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Item does not contain fulltext, BACKGROUND: Pain assessment and monitoring is a prerequisite for its adequate treatment in patients with cancer. We performed a feasibility study on the use of short message service (SMS) and interactive voice response (IVR) to improve pain management in patients with cancer, including terminally ill patients. METHODS: During 4 weeks, palliative patients received a daily IVR asking to provide their pain score on a numeric rating scale (NRS) with their mobile phone. If pain was moderate or high, the nurse contacted the patient the same day and, if required, adapted the treatment. RESULTS: Thirteen of the 17 invited patients agreed to participate (79%), four died during the study period. IVR/SMS provides a reliable assessment of the pain intensity, and if required, treatment can be rapidly adapted. All patients were satisfied with the intervention. There were no difficulties for the, mainly older, patients in handling this communication way on pain intensity. The mean pain score decreased from 4.78 to 3.33 (P = 0.07). The pain scale of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) decreased significantly from 56 to 35 (P = 0.047). DISCUSSION: Monitoring and managing pain with IVR/SMS in patients with cancer at home appeared acceptable and feasible, even in terminally ill patients. The reluctance for actively contacting the professional in case of increased pain intensity is circumvented in this setting. Further research, preferably in a controlled study, is needed to establish the use of this intervention in a larger patient population.

Contains fulltext : 167675.pdf (publisher's version ) (Open Access), BACKGROUND: A community-based occupational therapy intervention for people with mild to moderate dementia and their family carers (Community Occupational Therapy in Dementia (COTiD)) was found clinically and cost effective in the Netherlands but not in Germany. This highlights the need to adapt and implement complex interventions to specific national contexts. The current trial aims to evaluate the United Kingdom-adapted occupational therapy intervention for people with mild to moderate dementia and their family carers living in the community (COTiD-UK) compared with treatment as usual. METHODS/DESIGN: This study is a multi-centre, parallel-group, pragmatic randomised trial with internal pilot. We aim to allocate 480 pairs, with each pair comprising a person with mild to moderate dementia and a family carer, who provides at least 4 hours of practical support per week, at random between COTiD-UK and treatment as usual. We shall assess participants at baseline, 12 and 26 weeks, and by telephone at 52 and 78 weeks (first 40 % of recruits only) after randomisation. The primary outcome measure is the Bristol Activities of Daily Living Scale (BADLS) at 26 weeks. Secondary outcome measures will include quality of life, mood, and resource use. To assess intervention delivery, and client experience, we shall collect qualitative data via audio recordings of COTiD-UK sessions and conduct semi-structured interviews with pairs and occupational therapists. DISCUSSION: COTiD-UK is an evidence-based person-centred intervention that reflects the current priority to enable people with dementia to remain in their own homes by improving their capabilities whilst reducing carer burden. If COTiD-UK is clinically and cost effective, this has major implications for the future delivery of dementia services across the UK. TRIAL REGISTRATION: Current Controlled Trials ISRCTN10748953 Date of registration: 18 September 2014.

Contains fulltext : 168143.pdf (publisher's version ) (Open Access), AIM: To determine whether the number of residents' preferences and needs together with the actions taken to satisfy them recorded into their 'life-and-care plans' will increase and the process of shared decision-making will improve the residents' psychosocial well-being. BACKGROUND: Shared decision-making is defined as a process where healthcare professionals and patients make decisions together, using the best available evidence. The aims of the present study were to assess the feasibility and acceptability of an SDM framework for care planning in long-term care facilities and its potential effectiveness on the proportion of dementia residents whose own preferences and needs and the related actions, are known, satisfied and documented in their 'life-and-care plans'. DESIGN: The current project is a feasibility trial and it was approved in November 2013. METHODS: Research subjects are triads composed of the resident with dementia, a family caregiver and the professional usually taking care for the resident. Professional caregivers of two nursing homes, one located in Italy and one in the Netherlands, will receive a specific training in SDM principles and will guide the SDM interview in the triad. The primary outcome will be the proportion of residents whose preferences and needs, together with the related actions to meet them, are known, documented and satisfied in their 'life-and-care plans'. TRIAL REGISTRATION: NCT02118701.

Rede uitgesproken bij het afscheid als hoogleraar Psychosociale aspecten van zorg voor kwetsbare ouderen - de Joop Michels-leerstoel - aan de Radboud Universiteit/het Radboudumc op 9 oktober 2015, Contains fulltext : 159913.pdf (publisher's version ) (Open Access)

11 juli 2016, Contains fulltext : 167536.pdf (publisher's version ) (Open Access), BACKGROUND: In the Netherlands, consent from relatives is obligatory for post mortal donation. This study explored the perspectives of relatives regarding the request for consent for donation in cases without donor registration. METHODS: A content analysis of narratives of 24 bereaved relatives (14 in-depth interviews and one letter) of unregistered, eligible, brain-dead donors was performed. RESULTS: Relatives of unregistered, brain-dead patients usually refuse consent for donation, even if they harbour pro-donation attitudes themselves, or knew that the deceased favoured organ donation. Half of those who refused consent for donation mentioned afterwards that it could have been an option. The decision not to consent to donation is attributed to contextual factors, such as feeling overwhelmed by the notification of death immediately followed by the request; not being accustomed to speaking about death; inadequate support from other relatives or healthcare professionals, and lengthy procedures. CONCLUSION: Healthcare professionals could provide better support to relatives prior to donation requests, address their informational needs and adapt their message to individual circumstances. It is anticipated that the number of consenting families could be enlarged by examining the experience of decoupling and offering the possibility of consent for donation after circulatory death if families refuse consent for donation after brain-death.

Contains fulltext : 167676.pdf (publisher's version ) (Open Access), OBJECTIVES: Although a growing number of older people are dying in care homes, palliative care has developed in these settings only recently. Cross-country representative comparative research hardly exists in this area. As part of a large EU-funded project, we aim to undertake representative comparative research in care homes in Europe, to describe and compare 6 countries in terms of (1) resident outcomes, quality and costs of palliative and end-of-life care; and (2) palliative care structures and staff knowledge and attitudes toward palliative care. We also aim to explore country, facility, staff, patient, and care characteristics related to better outcomes at resident level. DESIGN AND METHODS: To obtain a representative nationwide sample, we will conduct a large-scale cross-sectional study of deceased residents in care homes in Belgium, Finland, Italy, the Netherlands, Poland, and the United Kingdom, using proportional stratified random sampling (taking into account region, facility type and bed capacity). In each country, all participating care homes retrospectively report all deaths of residents in and outside the facilities over the previous 3-month period. For each case, structured questionnaires, including validated instruments, are sent to (1) the administrator/manager, (2) staff member most involved in care, (3) treating physician (general practitioner or elderly care physician), and (4) a closely involved relative. It is estimated that, per country, 50 care homes are needed on average to obtain a minimum of 200 deceased residents. Collected data include clinical and sociodemographic characteristics, quality of dying, quality and costs of palliative care and end-of-life care, and palliative care structures at the facility level and country level. To obtain a representative view of staff knowledge and attitudes regarding palliative care, PACE will conduct a cross-sectional study of staff working in the participating care homes. CONCLUSION: Considering the g

13 september 2016, Promotores : Leeuwen, E. van, Vernooij-Dassen, M.J.F.J. Co-promotor : Smeets, W., Contains fulltext : 159498.pdf (publisher's version ) (Open Access), This thesis concerns the decision making process of relatives, who are requested to give consent for organ donation of their beloved brain dead patient. We did a literature review. Proxies are not always satisfied about their decision: 10% of families regrets consent, but over 33% of relatives who refuse donation regret their refusal afterwards. Focus interviews with physicians, ICU-nurses and transplant coordinators show that these caregivers are not aware of this regret. Relatives were approached with in deptht interviews about their decision making (proxies who gave consent as well as who refused donation).Relatives followed always the wish of the patient who was registered in the National Donor Register. If the patient was not registered, families did not always follow his wish –if known. In cases when the wish was not known, relatives mostly refused donation. These relatives are often ambivalent about their decision. Support in decision making is advised for these situations.

Item does not contain fulltext, BACKGROUND: In dementia, cognitive and psychological disorders might interfere with maintaining social interactions. We have little information about the nature of these interactions of people with dementia in nursing homes. The aim of this study is to investigate social interactions between people with dementia and to validate an observation grid of them. METHODS: Fifty-six institutionalized people with dementia took part in this study. Residents had not met beforehand and were divided into groups of four to six. Social behaviors were videotaped and analyzed by two independent raters with an observation grid measuring frequency of occurrence. The ethogram was the conceptual tool that became the Social Observation Behaviors Residents Index (SOBRI). RESULTS: Two-thousand-six-hundred-seventy instances of behavior were collected. Behaviors directed at others represented 50.90% and self-centered behaviors 47.83%. No negative behaviors were observed. Principal Component Analysis (PCA) was used to validate the SOBRI and showed two components of social behaviors that explained about 30.56% of the total variance: social interactions with other residents (18.36%) and with care staff (12.20%). The grid showed a good internal consistency with a Cronbach's alpha of 0.90 for the first component and 0.85 for the second one. CONCLUSIONS: The SOBRI presents robust psychometric validity. This pilot study indicates that people with dementia spontaneously interact with other residents. These results contradict the stigma of non-communication and the stereotypes about dementia. More studies and validations are needed to contribute to the knowledge of social interactions in dementia.

17 februari 2016, Promotores : Vernooij-Dassen, M.J.F.J., Vissers, K.C.P. Co-promotor : Engels, Y.M.P., Contains fulltext : 151714.pdf (publisher's version ) (Open Access)

Item does not contain fulltext, No breakthrough has been made in dementia research to find a cure in the last century (Selkoe, 2012), but a great deal of progress has been made in the description of pathology. The damage caused by this multifaceted "disease" has been described in terms of its physical, neuropsychological, and social manifestations at an individual level but also its societal impact at large, often in financial terms.

Contains fulltext : 167872.pdf (publisher's version ) (Open Access), BACKGROUND: There is a gap between readily available evidence of best practice and its use in everyday palliative care. The IMPACT study evaluated the potential of facilitated use of Quality Indicators as tools to improve palliative care in different settings in England. METHODS: 1) Modelling palliative care services and selecting a set of Quality Indicators to form the core of an intervention, 2) Case studies of intervention using the Quality Indicator set supported by an expert in service change in selected settings (general practice, community palliative care teams, care homes, hospital wards, in-patient hospices) with a before-and-after evaluation, and 3) realist evaluation of processes and outcomes across settings. Participants in each setting were supported to identify no more than three Quality Indicators to work on over an eight-month period in 2013/2014. RESULTS: General practices could not be recruited to the study. Care homes were recruited but not retained. Hospital wards were recruited and retained, and using the Quality Indicator (QI) set achieved some of their desired changes. Hospices and community palliative care teams were able to use the QI set to achieve almost all their desired changes, and develop plans for quality improvements. Improvements included: increasing the utility of electronic medical records, writing a manual for end of life care, establishing working relationships with a hospice; standardising information transfer between settings, holding regular multi-disciplinary team meetings, exploration of family carers' views and experiences; developing referral criteria, and improvement of information transfer at patient discharge to home or to hospital. Realist evaluation suggested that: 1) uptake and use of QIs are determined by organisational orientation towards continuous improvement; 2) the perceived value of a QI package was not powerful enough for GPs and care homes to commit to or sustain involvement; 3) the QI set may have been to

Item does not contain fulltext, OBJECTIVES: General practitioners (GPs) are crucial to improving timely diagnosis, but little is reported about how they perceive dementia, and whether their perceptions display any elements of stigma. The aim of this study was to explore how GPs' perceptions of dementia map onto current conceptualizations of stigma and whether GPs feel that stigma affects timely diagnosis. METHODS: Twenty-three GPs from England were interviewed by telephone. Data were analyzed by means of content analysis. This involved open coding followed by the application of a coding framework derived from the literature to explore how and to what extent their perceptions relate to stigma as well as the unique nature of their perceptions. RESULTS: Three themes emerged from the analysis: (1) 'making sense of dementia', (2) 'relating perceptions of dementia to oneself' and (3) 'considering the consequences of dementia'. GPs' perceptions of dementia mapped onto current conceptualizations of stigma. Perceptions about dementia that were linked to their own existential anxiety and to a perceived similarity between people with dementia and themselves were particularly salient. GPs perceived dementia as a stigma which was gradually being overcome but that stigma still hindered timely diagnosis. They provided examples of structural discrimination within the health service, including lack of time for patients and shortcomings in training that were to the detriment of people with dementia. CONCLUSION: Measures to involve GPs in tackling stigma should include training and opportunities to explore how they perceive dementia, as well as support to address structural discrimination.

Radboud Universiteit Nijmegen, 23 september 2015, Promotor : Vernooij-Dassen, M.J.F.J. Co-promotor : Graff, M.J.L., Contains fulltext : 142763.pdf (publisher's version ) (Open Access)

Contains fulltext : 152748.pdf (publisher's version ) (Open Access), BACKGROUND: In the past decades, many new insights and best practices in palliative care, a relatively new field in health care, have been published. However, this knowledge is often not implemented. The aim of this study therefore was to identify strategies to implement improvement activities identified in a research project within daily palliative care practice. METHODS: A nominal group technique was used with members of the IMPACT consortium, being international researchers and clinicians in cancer care, dementia care and palliative care. Participants identified and prioritized implementation strategies. Data was analyzed qualitatively using inductive coding. RESULTS: Twenty international clinicians and researchers participated in one of two parallel nominal group sessions. The recommended strategies to implement results from a research project were grouped in five common themes: 1. Dissemination of results e.g. by publishing results tailored to relevant audiences, 2. Identification and dissemination of unique selling points, 3. education e.g. by developing e-learning tools and integrating scientific evidence into core curricula, 4. Stimulation of participation of stakeholders, and 5. consideration of consequences e.g. rewarding services for their implementation successes but not services that fail to implement quality improvement activities. DISCUSSION: The added value of this nominal group study lies in the prioritisation by the experts of strategies to influence the implementation of quality improvement activities in palliative care. Efforts to ensure future use of scientific findings should be built into research projects in order to prevent waste of resources.