Exploring restrictive measures using action research: A participative observational study by nursing staff in nursing homes.

AIM: In nursing homes, nursing staff have a key role in the use of restrictive measures. However, their active role in reducing restrictive measures has so far been limited. The aim of this study is to explore how and when the application of restrictive measures in nursing homes occurs including underlying factors, together with nursing staff. DESIGN: Participatory action research was chosen for a bottom-up understanding of the use of restrictive measures. METHOD: Two Dutch nursing homes participated in 2016/2017 with 18 nursing staff members in the action research team. Nursing staff carried out 33 observations followed by a reflective interview. RESULTS: Nursing staff observed a wide range of restrictions, including restrictions in freedom of choice, not being able to go outside, not being in charge of medication, and a directive/unresponsive care attitude. Factors influencing restrictions included habits and institutionalization, cognitive ability of the resident, availability of personnel, and responsibility for safety. A responsive care attitude and raising awareness were seen as good practices to enhance freedom. CONCLUSIONS: By taking a distant view on their work, nursing staff discovered a broad range of restrictions, including 'less obvious' restrictions. Active forms of learning may position nursing staff to discuss and reduce restrictive measures. IMPACT: What problem did the study address?: Restrictive measures are still common in nursing homes. Despite their key role in using restrictive measures, nursing staff's active role in research has been limited. What were the main findings?: By participating as researchers, nursing staff gained a broader perspective on restrictive measures. Many 'less obvious' restrictions were related to routines and institutionalization and were considered as eye opening by nursing staff. Where and on whom will the research have impact?: Active forms of learning such as observing and reflecting has the potential to position nursing staff as 'agents of change'.

An exploration of the participation of people with intellectual disabilities in research-a structured interview survey.

BACKGROUND: Even though participation of people with intellectual disabilities in research is increasingly common, there is little insight into how many people with intellectual disabilities participate, their motivations to participate and their interests regarding study results. METHOD: Five questions were added to the Panel Living Together (PLT) survey among 508 people with intellectual disabilities. The questions aimed to gain insight into the (i) frequency of participation; (ii) methods used to participate; (iii) motivations to participate; and (iv) interests regarding study results. RESULTS: Although 73.5% (n = 347) of the respondents enjoyed their participation and 71.6% (n = 312) found it important to participate, only 11.8% (n = 60) participated in research other than PLT. Of the respondents, 61% (n = 261) indicated they wanted to be informed about study results, 29.1% (n = 148) of this group stated they wanted to compare, learn and share information. CONCLUSIONS: Future research should focus on how motivations of people with intellectual disabilities to participate in inclusive research, such as "empowerment," can be supported to facilitate their involvement in research.

Perspectives of people with mild intellectual disabilities on care relationships at the end of life: A group interview study.

BACKGROUND: Care relationships are crucial in tailoring the end-of-life care of a person with intellectual disabilities (ID) to their needs. Yet, almost all studies on end-of-life care for people with ID have been conducted among caregivers. The views of people with ID about care relationships at the end of life have not been a specific focus of research. AIM: To explore relevant dimensions of the care relationships in end-of-life care from the perspectives of people with mild ID in the Netherlands. DESIGN: Group interviews were conducted using nominal group technique. Interviews were inductively analysed by two researchers. SETTING/PARTICIPANTS: Seven groups participated (33 people). Inclusion criteria were as follows: having mild ID, being able to decide about participation and give informed consent, and not receiving end-of-life care. All groups were interviewed twice. RESULTS: Two dimensions of care relationships were found: (1) 'Ascertain, record and honour wishes' of the ill person. Adequately dealing with care wishes, 'last wishes' and funeral wishes was of central importance: 'it's about their life'. We found an emphasis on control that seemed to reflect the participants' experience that respecting autonomy does not always happen. (2) 'Being there': Ill people need people who are there for him or her, practically, as well as emotionally, socially and spiritually. Participants placed specific emphasis on providing positive experiences. CONCLUSION: The views of people with mild ID highlight the high demands which end-of-life care imposes on relational qualities of caregivers. This study shows the added value and potential of involving people with ID in studies on end-of-life care.

'From activating towards caring': shifts in care approaches at the end of life of people with intellectual disabilities; a qualitative study of the perspectives of relatives, care-staff and physicians.

BACKGROUND: Professionals and relatives increasingly have to deal with people with intellectual disabilities (ID) who are in need of end-of-life care. This is a specific type of care that may require a different approach to the focus on participation that currently characterizes the care for people with ID. This paper describes the shifts in care approaches and attitudes that relatives and professionals perceive as the death of a person with ID approaches, as well as the values underlying these shifts. METHODS: A qualitative design was used to reconstruct the cases of twelve recently deceased people with ID. Relatives and professionals who were closest to the person at the end of their life were interviewed. Interviews were transcribed verbatim and data were analyzed inductively, using elements of thematic analysis. RESULTS: Five shifts were found: 1) adapting to a new strategy of comforting care, taking over tasks and symptom relief, 2) interweaving of emotional and professional involvement, 3) stronger reliance on the joint interpretation of signals expressing distress and pain, 4) magnified feeling of responsibility in medical decisions, 5) intensified caring relationship between 'two families': relatives and care staff. Six relational values were behind these shifts: 'being there' for the person with ID, 'being responsive' to the person's needs, 'reflection' on their own emotions and caring relationships, 'attentiveness' to the ID person's wishes and expressions of distress, 'responsibility' for taking joint decisions in the best interests of the person, and 'openness to cooperation and sharing' the care with others. CONCLUSIONS: End-of-life care for people with ID involves curtailing expectations of participation and skill acquirement, and an increase in teamwork featuring intensified comforting care, symptom management and medical decision making. Three caring relationships need to be fostered: the relationship with the person with ID, relationships among professionals and the relationship between relatives and professionals. ID care services should invest particularly in the emotional support and expertise level of care staff, and in the collaboration between relatives and professionals.

Decision making about medical interventions in the end-of-life care of people with intellectual disabilities: a national survey of the considerations and beliefs of GPs, ID physicians and care staff.

OBJECTIVE: This paper explores the personal beliefs and specific considerations of professionals regarding decisions about potentially burdensome medical interventions in the end-of-life care for people with intellectual disabilities (ID). METHODS: A survey questionnaire covering decision making about potentially burdensome medical interventions was sent to nationally representative samples of 294 ID care staff-members, 273 ID physicians and 1000 GPs. RESULTS: Professionals predominantly believed that considerations about quality of life are most important. Quality of life and wellbeing were also frequently considered in both decisions to start/continue an intervention and decisions to forgo/withdraw an intervention. Seventy percent believed that people with ID should always be informed about interventions, and 61% would respect a refusal by the person. The family's wishes were explicitly considered more often than the wishes of the person with ID. CONCLUSION: Although respondents agree that the quality of life is highly important, the wishes of people with ID (especially of those with severe/profound ID) were often not considered in decisions about potentially burdensome medical interventions. PRACTICE IMPLICATIONS: To enhance the active involvement of people with ID in decision making we recommend that professionals integrate collaborative principles in decision making and make use of pictorial and easy reading resources.

Training needs of nurses and social workers in the end-of-life care for people with intellectual disabilities: a national survey.

BACKGROUND: Nurses and social workers caring for people with intellectual disabilities are increasingly confronted with clients in need of end-of-life care. Previous studies, however, suggest that professionals in intellectual disability care services lack knowledge and experience concerning end-of-life care. Moreover, the proportion of nurses within the staff of intellectual disability services has declined in recent years, while the proportion of social workers has increased, which may have consequences for the quality of end-of-life care. OBJECTIVES: To gain insight into the quality of end-of-life care, past vocational training, training needs and expert consultation opportunities of nurses and social workers working in intellectual disability care services. DESIGN: Survey questionnaire study conducted in the Netherlands. SETTINGS: Intellectual disability care services. PARTICIPANTS: The study sample was recruited from an existing nationally representative research panel of care professionals. In 2011, all 181 nurses and social workers in the research panel who worked in intellectual disability care services were sent our survey questionnaire. METHODS: Postal survey addressing education, views and needs regarding end-of-life care. RESULTS: The response was 71.8%. Respondents positively evaluated the quality of end-of-life care. However, most respondents felt inadequately trained in end-of-life care issues. Nurses had received more training in end-of-life care and had fewer training needs than social workers. Respondents wished for additional training, especially in supporting clients in dealing with the impending death and farewell process. Half of the respondents were unaware of the availability of external consultation facilities. CONCLUSIONS: This study shows that although nurses and social workers positively appraise the quality of end-of-life care for people with intellectual disabilities, the majority feel inadequately trained to provide good end-of-life care. As the number of people with intellectual disability in need of end-of-life care grows, organizations need to offer additional relevant training and must give information about the availability of external expert consultation for nurses and social workers.

Chronic Disease Management Programmes: an adequate response to patients' needs?

BACKGROUND: Inspired by American examples, several European countries are now developing disease management programmes (DMPs) to improve the quality of care for patients with chronic diseases. Recently, questions have been raised whether the disease management approach is appropriate to respond to patient-defined needs. OBJECTIVE: In this article we consider the responsiveness of current European DMPs to patients' needs defined in terms of multimorbidity, functional and participation problems, and self-management. METHOD: Information about existing DMPs was derived from a survey among country-experts. In addition, we made use of international scientific literature. RESULTS: Most European DMPs do not have a solid answer yet to the problem of multimorbidity. Methods of linking DMPs, building extra modules to deal with the most prevalent comorbidities and integration of case management principles are introduced. Rehabilitation, psychosocial and reintegration support are not included in all DMPs, and the involvement of the social environment of the patient is uncommon. Interventions tailored to the needs of specific social or cultural patient groups are mostly not available. Few DMPs provide access to individualized patient information to strengthen self-management, including active engagement in decision making. CONCLUSION: To further improve the responsiveness of DMPs to patients' needs, we suggest to monitor 'patient relevant outcomes' that might be based on the ICF-model. To address the needs of patients with multimorbidity, we propose a generic comprehensive model, embedded in primary care. A goal-oriented approach provides the opportunity to prioritize goals that really matter to patients.

Successful implementation of new technologies in nursing care: a questionnaire survey of nurse-users.

BACKGROUND: A growing number of new technologies are becoming available within nursing care that can improve the quality of care, reduce costs, or enhance working conditions. However, such effects can only be achieved if technologies are used as intended. The aim of this study is to gain a better understanding of determinants influencing the success of the introduction of new technologies as perceived by nursing staff. METHODS: The study population is a nationally representative research sample of nursing staff (further referred to as the Nursing Staff Panel), of whom 685 (67%) completed a survey questionnaire about their experiences with recently introduced technologies. Participants were working in Dutch hospitals, psychiatric organizations, care organizations for mentally disabled people, home care organizations, nursing homes or homes for the elderly. RESULTS: Half of the respondents were confronted with the introduction of a new technology in the last three years. Only half of these rated the introduction of the technology as positive.The factors most frequently mentioned as impeding actual use were related to the (kind of) technology itself, such as malfunctioning, ease of use, relevance for patients, and risks to patients. Furthermore nursing staff stress the importance of an adequate innovation strategy. CONCLUSIONS: A prerequisite for the successful introduction of new technologies is to analyse determinants that may impede or enhance the introduction among potential users. For technological innovations special attention has to be paid to the (perceived) characteristics of the technology itself.

Professional identification of psychosocial problems among children from ethnic minority groups: room for improvement.

OBJECTIVE: To assess the effectiveness of child health care professionals (CHP) in identifying psychosocial problems among children originating from industrialized and nonindustrialized countries and to assess whether parental concerns enhance CHP problem-identification. STUDY DESIGN: During routine well-child visits data were collected from a sample of children aged 5 to 12 years of Dutch, Moroccan, Turkish, Surinam, and Antillean origin (response: 82%). CHP reported on psychosocial problems that they identified in children. Parents completed the Child Behavior Checklist (CBCL) and a questionnaire on concerns regarding their child's psychosocial development. Interpreter services were used to support parents in filling out questionnaires. RESULTS: Elevated CBCL total and internalizing problem scores were more prevalent among children from nonindustrialized countries (10% and 17%, respectively) than among children from industrialized countries (3% and 5%, respectively). About 30% of the Turkish and Moroccan children with an elevated CBCL score were identified by CHPs compared with 60% of the children from industrialized countries. Parental concerns on their child's psychosocial well-being were related to elevated CBCL scores. Concerns were not related to CHP problem-identification. CONCLUSIONS: Better methods to support parents in disclosure of their concerns regarding the psychosocial development of their children may enhance CHP-identification of problems, especially among groups from nonindustrialized countries.