N. Bekkema

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

BackgroundA 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.MethodsThe 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.ResultsHalf 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.ConclusionsA 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.

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 familys 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.

‘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

BackgroundProfessionals 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.MethodsA 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.ResultsFive 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.ConclusionsEnd-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.

Zorgen over patiënten met verstandelijke beperking

SamenvattingNaar verwachting zullen geleidelijk aan meer mensen met een verstandelijke beperking aanspraak maken op huisartsenzorg. Uit onderzoek van het NIVEL blijkt dat huisartsen zorgen hebben over deze ontwikkeling.

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.