Adverse events at the end of life of hospital patients with or without a condition relevant for palliative care: a nationwide retrospective record review study in the Netherlands.

BACKGROUND: Patient safety is crucial for quality of care. Preventable adverse events (AEs) occur in 1 of 20 patients in the hospital, but it is unknown whether this is different for patients with a condition relevant for palliative care. The majority of the limited available research on this topic is only focused on patients already receiving palliative care, and do not make comparisons with other patients at the end-of-life. We identified and compared the prevalence, preventability, nature and causes of AEs in patients with and without a condition relevant for palliative care. METHODS: A nationwide retrospective record review study was performed in 20 Dutch hospitals. A total of 2,998 records of patients who died in hospital in 2019 was included. Records were reviewed for AEs. We identified two subgroups: patients with (n = 2,370) or without (n = 248) a condition relevant for palliative care through the selection method of Etkind (2017). Descriptive analyses were performed to calculate prevalence, nature, causes and prevention strategies. T-tests were performed to calculate differences between subgroups. RESULTS: We found no significant differences between subgroups regarding AE prevalence, this was 15.3% in patients with a condition relevant for palliative care, versus 12.0% in patients without a condition relevant for palliative care (p = 0.148). Potentially preventable AE prevalence was 4.3% versus 4.4% (p = 0.975). Potentially preventable death prevalence in both groups was 3.2% (p = 0.938). There were differences in the nature of AEs: in patients with a condition relevant for palliative care this was mostly related to medication (33.1%), and in patients without a condition relevant for palliative care to surgery (50.8%). In both subgroups in the majority of AEs a patient related cause was identified. For the potentially preventable AEs in both subgroups the two most important prevention strategies as suggested by the medical reviewers were reflection and evaluation and quality assurance. DISCUSSION: Patient safety risks appeared to be equally prevalent in both subgroups. The nature of AEs does differ between subgroups: medication- versus surgery-related, indicating that tailored safety measures are needed. Recommendations for practice are to focus on reflecting on AEs, complemented with case evaluations.

Measurement and documentation of quality indicators for the end-of-life care of hospital patients a nationwide retrospective record review study.

BACKGROUND: Quality of care at the end of life in hospitals is often perceived to be lower compared to the care that is provided to people who die in their own home. Documenting and measuring indicators of common end-of-life symptoms could help improve end-of-life care in hospitals. This study provided insight into quality indicators for the end-of-life care of patients who died in a Dutch hospital, and assessed differences between deceased patients who were admitted for palliative/terminal care versus patients admitted for other reasons. METHODS: In a retrospective record review study, trained nurses reviewed electronic health records (EHRs) of patients who died in 2019 (n = 2998), in a stratified sample of 20 Dutch hospitals. The nurses registered whether data was found in de EHRs about quality indicators for end-of-life care. This concerned: symptoms (pain, shortness of breath, anxiety, depressive symptoms), spiritual and psychological support and advance care planning. Multilevel regression analyses were performed to assess differences between patients who had been admitted for palliative/terminal care and patients admitted for other reasons. RESULTS: Common end-of-life symptoms were rarely measured using a standardized method (e.g. Numeric Rating Scale, Visual Analogue Scale or Utrecht Symptom Diary). The symptom burden of pain was measured using a standardized method more often (63.3%) than the symptom burden of shortness of breath (2.2%), anxiety (0.5%) and depressive symptoms (0.3%). Similarly, little information was documented in the EHRs regarding wish to involve a spiritual counsellor, psychologist or social worker. Life expectancy was documented in 66%. The preferred place of death was documented less often (20%). The documentation of some quality indicators differed between patients who were admitted for palliative/terminal care compared to other patients. CONCLUSION: Except for the burden of pain, symptoms are rarely measured with standardized methods in patients who died in Dutch Hospitals. This study underlines the importance of documenting information about symptom burden and aspects related to advance care planning, and spiritual and psychological support to improve the quality of end-of-life care for patients in hospitals. Furthermore, uniformity in measuring methods improves the possibility to compare results between patient groups and settings.

Possible alleviation of symptoms and side effects through clinicians' nocebo information and empathy in an experimental video vignette study.

To alleviate anti-cancer treatment burden in advanced breast cancer, patient-clinician communication strategies based on nocebo-effect mechanisms are promising. We assessed distinct/combined effects on psychological outcomes (e.g. anxiety; main outcome) and side-effect expectations of (1) nocebo information about the (non)pharmacological origin of side effects, and (2) clinician-expressed empathy through reassurance of continuing support. Furthermore, we explored whether information and empathy effects on side-effect expectations were mediated by decreased anxiety. In a two-by-two experimental video-vignette design, 160 cancer patients/survivors and healthy women watched one of four videos differing in level of nocebo information (±) and empathy (±). Regression and mediation analysis were used to determine effects of information/empathy and explore anxiety's mediating role. Anxiety was not influenced by empathy or information (Stai-state: p = 0.295; p = 0.390, VAS p = 0.399; p = 0.823). Information improved (specific) side-effect coping expectations (p < 0.01). Empathy improved side-effect intensity expectations (p < 0.01 = specific; p < 0.05 = non-specific/partial) and specific side-effect probability expectations (p < 0.01), and increased satisfaction, trust, and self-efficacy (p < 0.001). No mediating effects were found of anxiety on expectations. Mainly empathy, but also nocebo information improved psychological outcomes and-mainly specific-side-effect expectations. Exploring the power of these communication elements in clinical practice is essential to diminish the anti-cancer treatment burden in advanced breast cancer.

What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer.

BACKGROUND: In the Netherlands, general practitioners (GPs) and community nurses play a central role in the palliative care for home-dwelling patients with advanced cancer and their relatives. To optimize the palliative care provision at home, it is important to have insight in the elements that patients and relatives consider essential for high-quality palliative care, and whether these essentials are present in the actual care they receive. METHODS: Qualitative semi-structured interviews were conducted with 13 patients with advanced cancer and 14 relatives. The participants discussed their experiences with the care and support they received from the GP and community nurses, and their views on met and unmet needs. Interview data were analysed according to the principles of thematic analysis. RESULTS: Patients as well as relatives considered it important that their GP and community nursing staff are medically proficient, available, person-focused and proactive. Also, proper information transfer between care professionals and clear procedures when asking for certain resources or services were considered essential for good palliative care at home. Most interviewees indicated that these essential elements were generally present in the care they received. However, the requirements of 'proper information transfer between professionals' and 'clear and rapid procedures' were mentioned as more difficult to meet in actual practice. Patients and relatives also emphasized that an alert and assertive attitude on their own part was vital in ensuring they received the care they need. They expressed worries about other people who are less vigilant regarding the care they receive, or who have no family to support them in this. CONCLUSIONS: Medical proficiency, availability, a focus on the person, proper information transfer between professionals, clear procedures and proactivity on the part of GPs and community nursing staff are considered essential for good palliative care at home. Improvements are particularly warranted with regard to collaboration and information transfer between professionals, and current bureaucratic procedures. It is important for care professionals to ensure that the identified essential elements for high-quality palliative care at home are met, particularly for patients and relatives who are not so alert and assertive.

Advance care planning in the palliative phase of people with intellectual disabilities: analysis of medical files and interviews.

BACKGROUND: Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID). METHOD: Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the 'surprise question', and 15 who had died after an identifiable period of illness. Additional pre-structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33). RESULTS: For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do-not-attempt-resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life-sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP. CONCLUSIONS: Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.

The methodological quality of nurse-sensitive indicators in Dutch hospitals: A descriptive exploratory research study.

OBJECTIVE: Nurse-sensitive indicators (NSIs) are increasingly being developed and used to establish quality of nursing care in Western countries. The objective was to gain insights into the methodological quality of mandatory NSIs in Dutch hospitals, including indicators for pain, wound care, malnutrition and delirium. DESIGN: A descriptive exploratory design was used, starting with desk research into publicly available documents and reports describing the development of the NSIs included in this study. We used the validated Appraisal of Indicators through Research and Evaluation (AIRE) instrument to evaluate the methodological quality. RESULTS: Although the purpose and relevance of each individual NSI have been described, no detailed information about the criteria for selecting these topics is available. It is not clear which specific stakeholders participated and how their input was used. We found no information about the process of collecting and compiling scientific evidence. It is unclear whether and to what extent the usability of NSIs has been tested. CONCLUSION: The methodological quality of NSIs used in Dutch hospitals is less than optimal in various ways and it is therefore questionable if the indicators are accurate enough to identify changes or improve nursing practice. Our study also provides an example of how the methodological quality of NSIs can be assessed systematically, which is relevant considering the increasing use of NSIs in various countries.

Mapping the Dutch SNOMED CT subset to Omaha System, NANDA International and International Classification of Functioning, Disability and Health.

BACKGROUND: Nurses register data in electronic health records, which can use various terminology and coding systems. The net result is that information cannot be exchanged and reused properly, for example when a patient is transferred from one care setting to another. A nursing subset of patient problems was therefore developed in the Netherlands, based on comparable and exchangeable terms that are used throughout the healthcare sector and elsewhere (semantic interoperability). The purpose of the current research is to develop a mapping between the subset of patient problems and three classifications in order to improve the exchangeability of data. Those classifications are the Omaha System, NANDA International, and ICF (the International Classification of Functioning, Disability and Health). METHOD: Descriptive research using a unidirectional mapping strategy. RESULTS: Some 30%-39% of the 119 SNOMED CT patient problems can be mapped one-to-one from the subset onto each separate classification. Between 6% and 8% have been mapped partially to a related term. This is considered to be a one-to-one mapping, although the meanings do not correspond fully. Additionally, 23%-51% of the patient problems could be mapped n-to-one, i.e. more specifically than the classification. Some loss of information will always occur in such exchanges. Between 1% and 4% of the patient problems from the subset are defined less specifically than the problems within the individual classifications. Finally, it turns out that 9%-32% of the terms from the subset of patient problems could not be mapped onto a classification, either because they did not occur in the classification or because they could not be mapped at a higher level. CONCLUSION: To promote the exchange of data, the subset of patient problems has been mapped onto three classifications. Loss of information occurs in most cases when the patient problems are transformed from the subset into a classification. This arises because the classifications are different in structure and in the degree of detail. Structural cooperation between suppliers, healthcare organisations and the experts involved is required in order to determine how the mapping should be used within the electronic health records, and whether it is usable in day-to-day practice.

The development of a nursing subset of patient problems to support interoperability.

BACKGROUND: Since the emergence of electronic health records, nursing information is increasingly being recorded and stored digitally. Several studies have shown that a wide range of nursing information is not interoperable and cannot be re-used in different health contexts. Difficulties arise when nurses share information with others involved in the delivery of nursing care. The aim of this study is to develop a nursing subset of patient problems that are prevalent in nursing practice, based on the SNOMED CT terminology to assist in the exchange and comparability of nursing information. METHODS: Explorative qualitative focus groups were used to collect data. Mixed focus groups were defined. Additionally, a nursing researcher and a nursing expert with knowledge of terminologies and a terminologist participated in each focus group. The participants, who work in a range of practical contexts, discussed and reviewed patient problems from various perspectives. RESULTS: Sixty-seven participants divided over seven focus groups selected and defined 119 patient problems. Each patient problem could be documented and coded with a current status or an at-risk status. Sixty-six percent of the patient problems included are covered by the definitions established by the International Classification of Nursing Practice, the reference terminology for nursing practice. For the remainder, definitions from either an official national guideline or a classification were used. Each of the 119 patient problems has a unique SNOMED CT identifier. CONCLUSIONS: To support the interoperability of nursing information, a national nursing subset of patient problems based on a terminology (SNOMED CT) has been developed. Using unambiguously defined patient problems is beneficial for clinical nursing practice, because nurses can then compare and exchange information from different settings. A key strength of this study is that nurses were extensively involved in the development process. Further research is required to link or associate nursing patient problems to concepts from a nursing classification with the same meaning.

Systematic Quality Monitoring For Specialized Palliative Care Services: Development of a Minimal Set of Quality Indicators for Palliative Care Study (QPAC).

BACKGROUND: A feasibility evaluation of a comprehensive quality indicator set for palliative care identified the need for a minimal selection of these indicators to monitor quality of palliative care services with short questionnaires for the patients, caregivers, and family carers. OBJECTIVES: To develop a minimal indicator set for efficient quality assessment in palliative care. DESIGN: A 2 round modified Research ANd Development corporation in collaboration with the University of California at Los Angeles (RAND/UCLA) expert consultation. SETTING/PATIENTS: Thirteen experts in palliative care (professionals and patient representatives). MEASUREMENTS: In a home assignment, experts were asked to score 80 developed indicators for "priority" to be included in the minimal set on a scale from 0 (lowest priority) to 9 (highest priority). The second round consisted of a plenary meeting in which the minimal set was finalized. RESULTS: Thirty-nine of the 80 indicators were discarded, while 19 were definitely selected after the home assignment, and 22 were proposed for discussion during the meeting; 12 of these survived the selection round. The final minimal indicator set for palliative care consists of 5 indicators about the physical aspects of care; 6 about the psychosocial aspects of care; 13 about information, communication, and care planning; 5 about type of care; and 2 about continuity of care. CONCLUSION: A minimal set of 31 indicators reflecting all the important issues in palliative care was created for palliative care services to assess the quality of their care in a quick and efficient manner. Additional topic-specific optional modules are available for more thorough assessment of specific aspects of care.

[Conflicts between healthcare professionals and families of a multi-ethnic patient population in the intensive care unit]. / Conflict tussen zorgverleners en families van een multi-etnische patiëntenpopulatie op de IC.

OBJECTIVE: To investigate which factors contribute to conflicts between healthcare professionals and family members from ethnic minority groups during medically critical situations in hospital. DESIGN: Descriptive, ethnographic research. METHOD: Ethnographic fieldwork was carried out in one intensive care unit (ICU) of a multi-ethnic urban hospital in Belgium in the period January-June 2014. Data were collected by means of negotiated interactive observation, in-depth interviews with healthcare professionals and examining the patients' medical files. Data were analysed using grounded theory procedures. RESULTS: Conflicts were primarily related to the participants' different views on 'good care'. Healthcare providers' (HCPs') views on good care were primarily grounded on a biomedical care model, whereas families' views on good care were mainly inspired by a holistic care approach. According to HCPs, giving good care included fighting the disease efficiently with great scientific competence, but family members considered this rather as attending to the patient and giving bedside care, amongst other things. The HCPs' biomedical vision on good care was strengthened by the strict application of ward regulations, characterizing the ICU setting. The families' holistic views on good care were strengthened by specific ethno-familial characteristics, including their ethno-cultural background. However, ethno-cultural differences only contributed to conflict if the policy context on the ICU could provoke this conflict. CONCLUSION: Conflicts cannot be exclusively linked to ethno-cultural differences. Structural, functional characteristics of the ICU contribute substantially to conflict development. Effective conflict prevention should, therefore, not only focus on ethno-cultural differences but should also focus sufficiently on the structural context and ward policy.

[Effects of a stepwise approach to behavioural problems in dementia: a cluster randomised controlled trial]. / Stapsgewijze aanpak van probleemgedrag bij dementie.

OBJECTIVE: To investigate whether implementation of a stepwise multidisciplinary intervention ('STA OP!' ['STAND UP!']) is effective in reducing behavioural problems and depressive symptoms in nursing home residents with advanced dementia. DESIGN: Cluster randomised controlled trial. METHOD: We implemented the STA OP! protocol on the intervention units by training the entire multidisciplinary team. This team was trained in all 6 steps of the protocol during five 3-hour sessions. Professionals working on the control unit received training on general technical nursing skills, dementia management and pain, but then without the stepwise component. All elderly care physicians were given additional training in pain management in patients with dementia, based on the guidelines on pain in vulnerable older people. Measurements were taken at baseline, and after 3 and 6 months. We used longitudinal 'multilevel' techniques to correct for clustering of data (e.g. at unit level) for statistical analysis (Dutch Trial Register: NTR1967). RESULTS: A total of 288 residents with dementia were included, from 12 nursing homes (21 units): 148 in the intervention group in 11 units and 140 in the control group in 10 units. On the units where the STA OP! protocol was used there was a significant decline in agitation, neuropsychiatric symptoms and depression compared with the control units at 6 months. Furthermore, use of anti-depressive medication was significantly lower on the intervention units (odds ratio: 0.32; 95% CI: 0.10-0.98). CONCLUSION: This cluster RCT revealed that the stepwise multidisciplinary intervention STA OP! is effective in reducing behavioural problems and use of psycho-pharmaceuticals in nursing home residents with dementia.

'To move or not to move': a national survey among professionals on beliefs and considerations about the place of end-of-life care for people with intellectual disabilities.

BACKGROUND: The aim of this article was to investigate the beliefs and considerations of professionals concerning an appropriate environment for end-of-life care for people with intellectual disabilities (ID). METHOD: A survey questionnaire was composed based on a scan of relevant literature and the results of group interviews with professionals, family members and people with ID. The questionnaire focused on the respondents' general beliefs about an appropriate environment for end-of-life care and their specific considerations regarding the place of care of the last client for whom the respondent provided end-of-life care. The questionnaire was sent to 294 care staff members recruited from a nationally representative panel of nurses and social workers, 273 ID physicians recruited from the members list of the Dutch professional association of ID physicians, and 1000 general practitioners (GPs) recruited from a nationally representative sample from a national registration of GPs. RESULTS: The overall response was 46%. Professionals predominantly believe that all efforts should be made to ensure that a person with ID receives end-of-life care in their own home environment, and that 24/7 care is available. Respondents indicated that most of the clients (79%) who had last received end-of-life care from an ID care service were able to stay in their own home environment. Decisions to keep the client in their own home environment were primarily based on the familiarity of the environment and the expertise of the team in end-of-life care. Insufficient expertise and a lack of adequate equipment were the main considerations in decisions to move a client. Despite the belief of care staff in particular that the wishes of the person with ID should always be leading when deciding on the place of end-of-life care, only 8% of the care staff and ID physicians explicitly mentioned that the client's wishes were taken into account in actual decision-making. CONCLUSIONS: Professionals agree that end-of-life care for people with ID should preferably take place in the client's home environment, even when nursing expertise, experience and adequate equipment are not (yet) in place. Nonetheless, a lack of expertise in end-of-life care is the foremost consideration in decisions to move a client. If ID care services want to promote end-of-life care in the client's own home, we recommend formulating a policy on how to realise end-of-life care in the client's own home environment and provide sufficient training and support for staff. To involve people with ID as much as possible, we recommend that professionals integrate more collaborative principles in decision-making about the place of end-of-life care.

Negotiating jurisdiction in the workplace: a multiple-case study of nurse prescribing in hospital settings.

This paper reports on a multiple-case study of prescribing by nurse specialists in Dutch hospital settings. Most analyses of interprofessional negotiations over professional boundaries take a macro sociological approach and ignore workplace jurisdictions. Yet boundary blurring takes place and healthcare professionals renegotiate formal policies in the workplace. This paper studies the division of jurisdictional control over prescribing between nurse specialists and medical specialists in the workplace, and examines the relationship between workplace jurisdiction and legal jurisdiction over prescribing. Data collection took place in the Netherlands during the first half of 2013. The study used in-depth interviews with fifteen nurse specialists and fourteen medical specialists, non-participant observation of nurse specialists' prescribing consultations and document analysis. Great variety was found in the extent to which and way in which nurse specialists' legal prescriptive authority had been implemented. These findings suggest that there is considerable discrepancy between the division of jurisdictional control over prescribing at the macro (legal) level and the division at the micro (workplace) level.

Respecting autonomy in the end-of-life care of people with intellectual disabilities: a qualitative multiple-case study.

BACKGROUND: The aim of this article was to describe how caregivers and relatives shape respect for autonomy in the end-of-life care for people with intellectual disabilities (ID) and to discuss to what extent this corresponds with a relational concept of autonomy, such as described in care ethics. METHOD: This study consisted of a qualitative design in which the cases of 12 recently deceased people with ID were reconstructed by interviewing the caregivers and relatives who were closest to the person at the end of their life. A cyclic process of data collection and analysis was used. Interviews were transcribed verbatim and data were analysed inductively. RESULTS: Respect for autonomy in the end-of-life care of people with ID was mainly reflected in helping the person with ID familiarise with three transitions: new information on the diagnosis and prognosis, changing care needs and wishes, and important decisions that were at stake. In respecting autonomy, relatives and caregivers encountered several challenges. These concerned ascertaining information needs, communicating about illness and death, inexperience in end-of-life care, eliciting current and hidden last wishes, the dependence of people with ID and conflicting wishes. Several qualities were important for respecting autonomy: attention to information needs, connecting, recognising end-of-life care needs, giving space to show wishes and preferences, and discussing dilemmas. CONCLUSIONS: If caregivers and relatives embrace autonomy as a relational construct, attained through an open, active and reflective attitude, and have more access to knowledge about communication and how to identify end-of-life care needs, this could lead to improved respect for the ID persons' autonomy at the end of life. We discuss the view that a relational concept of autonomy is useful for describing respect for autonomy in end-of-life care for people with ID, but that more reflection and openness is needed to sufficiently employ relationships and regard autonomy as a product of joint work.

Quality of life of nursing-home residents with dementia subject to surveillance technology versus physical restraints: an explorative study.

OBJECTIVE: As physical restraints should only be used in exceptional cases, there is an urgent need for alternatives to restraint use. Surveillance technology could be such an alternative. This study explored whether nursing-home residents with dementia subjected to surveillance technology had better quality of life scores for mood, behavioral and societal dimensions than residents with physical restraints. METHODS: Quality of life was assessed longitudinally, with three measurements in six psychogeriatric nursing homes of residents with surveillance technology (n = 170) and residents with physical restraints (n = 22). QUALIDEM subscales were used to measure five dimensions of quality of life. Multilevel longitudinal univariate and multivariate regression techniques were used to analyze the data. RESULTS: Because physical restraints were almost exclusively used in residents with low activities of daily living (ADL) independency (18 of the 22), we restricted the regression analyses to residents with a Barthel Index score ≤ 5 (overall n = 53). Univariate results showed that highly ADL-dependent residents with surveillance technology had significantly more positive affect than highly ADL-dependent residents with physical restraints. However, this difference proved to be no longer significant after adjustment for the confounders: age, sex and stage of dementia. CONCLUSIONS: Quality of life of highly ADL-dependent nursing-home residents with dementia seems to be unrelated to the use of surveillance technology as opposed to physical restraints.

[Problems and needs of informal caregivers of persons with dementia: a comparison between the initial stage and subsequent stages of the illness process]. / Problemen en wensen van mantelzorgers van mensen met dementie: een vergelijking tussen de beginfase en latere fasen in het ziekteproces.

This paper investigates whether informal caregivers of persons who have had symptoms of dementia for less than a year, differ from informal caregivers of persons in subsequent stages of dementia. Differences will be investigated in (a) problems experienced in the provision of informal care, (b) the use of ambulatory types of professional support, and (c) the need for additional professional support. Results are based on a survey among 1494 Dutch informal caregivers. Almost all informal caregivers experience problems in caring for a person with dementia, irrespective of the stage of the illness process. Their main problems concern dealing with changes in the behaviour of the person with dementia and dreading the person's admission to a nursing home. Informal caregivers of persons who have had symptoms of dementia for a longer period of time (> 1 year) also experience limitations in their social network. Most persons with dementia receive some kind of professional support. Still, the majority of informal caregivers indicate a need for additional professional support, mainly concerning advice and information. Limiting the available support options for persons with initial symptoms of dementia and their informal caregivers is therefore undesirable. Considering the need for additional support in the initial stage of dementia as well as in subsequent stages, persons with dementia and their informal caregivers should be supported during the entire illness process.

Home care for terminally ill Turks and Moroccans and their families in the Netherlands: carers' experiences and factors influencing ease of access and use of services.

The aim of this study was to explore the experiences of relatives of elderly terminally ill Turks and Moroccans regarding Dutch professional home care and the barriers to the use this care. Nine Turkish and ten Moroccan family members, who recently looked after dying members of their families, were interviewed using a semi-structured topic list. The data was analyzed using the method described by Glaser and Strauss. The results of this study make it clear that there is no uniform pattern in the use of home care. However, family members who did use home care facilities were all satisfied. Furthermore, on the basis of this study, several factors influencing access to and use of home care were discerned, e.g., illness, family structure, decision making, pressure from the community, information and formal referrals. In addition, the authors found that 'preferences regarding family care' influenced all former factors.

Sonography-guided injection of botulinum toxin A in children with cerebral palsy.

Visual identification of muscles and depth control of needle placement are the key features of sonography-guided injection that lead to improved targeting and safety of BoNT/A injections. This method may be especially helpful to validate already established injection techniques or when learning the correct injection technique. We recommend sonography-guided injection as a simple and painless "add-on" to the currently used standard procedure of palpation. The additional expenditure for sonography-guided injection is more than offset by the improved reliability in correct needle placement.