Elsevier

Nurse Education Today

Volume 34, Issue 4, April 2014, Pages 494-500
Nurse Education Today

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

https://doi.org/10.1016/j.nedt.2013.07.018Get rights and content

Summary

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.

Introduction

Professionals caring for people with intellectual disabilities (ID) are confronted with an aging population. Since health care has improved over recent decades, the life expectancy of people with ID has increased. However, the increased life expectancy is connected with growing incidences of life-limiting illnesses such as progressive cancer, chronic cardiovascular diseases, chronic lung diseases and dementia (Ellison and Rosielle, 2008, Janicki et al., 1999, Tuffrey-Wijne et al., 2007). As a result, professionals increasingly encounter people with ID who are in need of end-of-life care, a specific type of care requesting specific expertise and training.

End-of-life care focuses heavily on the quality of life by relieving pain and other distressing symptoms, incorporating the holistic needs of people, as reflected in physical, psychological and spiritual support. Professionals need a variety of knowledge and skills in order to provide comprehensive, multidisciplinary end-of-life care to the person and their family (de Vlieger et al., 2004). End-of-life care for people with ID can be especially challenging due to pre-existing intellectual disabilities combined with physical impairments resulting from a life-limiting illness. Professionals encounter difficulties, for example, in communicating about end-of-life issues with their clients (Bekkema et al., 2013, Stein, 2008, Tuffrey-Wijne et al., 2010). Furthermore, the identification and management of pain and other symptoms can be hard at the end of life, as signals that express pain or other distress can be very small and hard to recognize in people with ID (Bekkema et al., 2011, Ryan et al., 2010). As the work of professionals caring for people with ID has a strong focus on activating people rather than on ‘caring’ and symptom relief, end-of-life care may not be a matter of course (Kirkendall et al., 2012, McCallion et al., 2012, McCarron et al., 2010). Previous studies suggest that professionals working in ID care services may lack knowledge and skills concerning end-of-life care. Ng and Li (2003) found that in the UK, 50% of the professionals who care for incurably ill people with ID were unable to identify signs and symptoms of the illness. Ryan et al., 2010, Ryan et al., 2011 found that Irish professionals caring for people with ID often lacked confidence and training in end-of-life care, and that providing end-of-life care therefore led to considerable stress. Lack of training in end-of-life care was also rated as an obstacle by 72% of the directors of ID care services in the USA (Botsford, 2004). Likewise, a recent study in Australian ID community group homes revealed that less than one third of the professionals concerned received any training in end of-lifecare (Wiese et al., 2012a).

Also, research performed in the Netherlands among managers and physicians in ID care services suggested that professionals often have insufficient expertise with end-of-life care (Bekkema et al., 2011). In the Netherlands, professionals caring for people with ID have varying backgrounds, but the large majority are social workers, followed by nurses (RNs) and certified nursing assistants (CNAs) (Van der Windt et al., 2009). The de-institutionalization of the care for people with ID that started in the 1970s and the disappearance of specific vocational training in ID nursing in the 1990s led to a decrease in the number of nurses working in this field in the Netherlands that is still ongoing (AVVV, 2004, CBS (Statistics Netherlands), 2012). This necessitated a redefinition of the position of nurses working in ID care services in relation to other disciplines such as social workers; a development that also took place in other countries such as the UK and Ireland (Sheerin and McConkey, 2008, Sweeney and Mitchell, 2009). A survey performed in 2002 in the Netherlands revealed that 81% of the nurses working in Dutch ID care services expressed a need for additional training in end-of-life care (De Veer et al., 2004). No social workers were involved in the 2002 survey, but it seems probable that social workers will have received less training in end-of-life issues in their vocational training programs than nurses and that therefore their training needs will be also more pronounced. Indeed, since then there has been growing attention in the Netherlands for the quality of end-of-life care in ID care services, seen for example in the provision of training courses and consultation facilities on end-of-life care. In principle, these consultations facilities are available to all health-care professionals and may complement missing knowledge, especially for teams with no first-hand expertise in end-of-life care.

In order to further promote good care for incurably ill people with ID, more insight is needed into past vocational training in end-of-life care, the training needs and the consultation options of nurses and social workers. It is also important to know how nurses and social workers evaluate the quality of the end-of-life care provided by their team. Given their educational background, we expect that nurses will have received more training in at least the physical side of end-of-life care, will have fewer training needs and will be more aware of end-of-life care consultation facilities than social workers. The research questions are:

  • 1.

    How do nurses and social workers in ID care services appraise the quality of end-of-life care provided by their team or department?

  • 2.

    What views or needs do nurses and social workers have with regard to:

    • training in end-of-life care?

    • facilities that enable consultation of internal and external experts related to end-of-life care?

Section snippets

Sample

The study sample was recruited from an existing nationally representative research panel of care professionals in the Netherlands (De Veer and Francke, 2010, De Veer et al., 2011). This research panel consists of a group of care professionals who are prepared to fill in questionnaires on current topics in health care. In 2011, all 181 participants (RNs, CNAs or social workers) in the research panel who worked in care services for people with ID were sent our survey questionnaire.

Data Collection And Survey Questionnaire

The

Background Of The Respondents

130 questionnaires were completed (a response of 71.8%). The group of nursing staff is comprised of nurses with an associate degree or Bachelor's degree (n = 87), and also includes a small group of certified nursing assistants (n = 6). The group of 37 social workers is comprised of social workers with an associate degree or Bachelor's degree. Table 1 shows that the nurses in this study are on average older and have more work experience as a qualified care professional than the social workers. One

Discussion

Nurses and social workers working in ID care services positively evaluate the quality of end-of-life care provided by their team or within their department. Nurses are more involved in end-of-life care, received more training in end-of-life care and have fewer training needs than social workers. Although most professionals received training in at least one end-of-life care topic, many topics were not covered well in (basic and/or post basic) vocational training. Moreover, the large majority of

Strengths and Weaknesses

An important strength of this study is that respondents were recruited from an existent large, national panel of nurses and social workers. We were therefore able to provide insights into how staff working in ID care services perceive their knowledge and skills in end-of-life care. Another strength is the relatively high response rate; this might be due to the fact that all participants in the panel are in principle committed to completing survey questionnaires regularly. However, using the

Implications

This study raises the question of whether end-of-life care for a person with ID can best be provided within an ID care service, taking into account the lack of knowledge of the nurses and social workers. As the number of people with ID and end-of-life care needs is expected to grow, organizations must take adequate measures in order to equip care staff with the necessary expertise to answer the end-of-life care needs of their clients. Dying in one's own home environment is the preferred option

Conflicts Of Interest

The authors have declared no conflicts of interest.

Acknowledgments

The study was funded by the Dutch Ministry of Health.

References (39)

  • A.J. De Veer et al.

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

    BMC Medical Informatics and Decision Making

    (2011)
  • M. De Vlieger et al.

    A guide for the development of palliative nurse education in Europe

    Palliative Nurse Education: Report of the EAPC Task Force

    (2004)
  • N.M. Ellison et al.

    Palliative care for adults with developmental disabilities

    Journal of Palliative Medicine

    (2008)
  • L.C. Escobar Pinzón et al.

    Preference for place of death in Germany

    Journal of Palliative Medicine

    (2011)
  • S.L. Friedman et al.

    Unique and universal barriers: hospice care for aging adults with intellectual disability

    American Journal on Intellectual and Developmental Disabilities

    (2012)
  • J.E. Hahn et al.

    Development and evaluation of a staff training program on palliative care for persons with intellectual and developmental disabilities

    Journal of Policy and Practice in Intellectual Disabilities

    (2011)
  • I. Higginson et al.

    Place of care in advanced cancer: a qualitative systematic literature review of patient preferences

    Journal of Palliative Medicine

    (2000)
  • M.P. Janicki et al.

    Mortality and morbidity among older adults with intellectual disability: health services considerations

    Disability and Rehabilitation

    (1999)
  • A.M. Kirkendall et al.

    Caring for people with intellectual disabilities and life-limiting illness: merging person-centered planning and patient-centered, family-focused care

    Journal of Social Work in End-Of-Life and Palliative Care

    (2012)
  • Cited by (35)

    • Co-design and delivery of a relational learning programme for nursing students and young people with severe and complex learning disabilities

      2022, Nurse Education Today
      Citation Excerpt :

      Nursing students in the UK and elsewhere, have expressed fear and anxieties about caring for people with ILD, including distress at witnessing poor quality care (Northway and Dixon, 2019). Studies of registered nurses have shown NHS staff feel uncertain about caring for children with ILDs (Bekkema et al., 2014) or how to support families (Brown et al., 2016). A recent study of children's hospitals that do have a Learning Disability Liaison Nurse, found staff valued this provision however they remained unconfident and young people with ILD were not valued or deemed capable at an institutional level (Oulton et al., 2019).

    • Implementation and sustainment of palliative care innovations within organizations for people with intellectual disabilities: A multi-method evaluation

      2021, Disability and Health Journal
      Citation Excerpt :

      Some influencing factors for implementation were related to the specific care setting of people with ID. The limited palliative care knowledge and skills of professionals working with people with ID, which has been highlighted in previous research,9,11,28,31–33 was found to be a barrier for the use of the innovation. It is also known that professionals avoid the end of life as a topic and do not know how to talk about it.

    View all citing articles on Scopus
    View full text