scholarly journals Challenges when caring for end-of-life patients with advanced dementia and pain: A qualitative study in Swedish nursing homes

2019 ◽  
Author(s):  
Tove Godskesen ◽  
Emma Lundin
Keyword(s):  
Health Care ◽  
Pain Management ◽  
Nursing Homes ◽  
End Of Life ◽  
Care Staff ◽  
Health Care Staff ◽  
Common Symptom ◽  
Advanced Dementia ◽  
Good Communication ◽  
Individual Interviews

Abstract Background Of Swedish people with advanced dementia, the majority dies in nursing homes. Pain is a common symptom in patients at the end-of-life, and patients with advanced dementia often experience suboptimal and inadequate pain management. Compared to cancer patients, they receive fewer palliative care interventions. Although being largely responsible for the care of these patients, few studies address the experiences of registered nurses. Therefore, this study aimed to describe nurses' experiences of caring for end-of-life patients with advanced dementia and pain. Methods This study had a descriptive and explorative design. Individual interviews with thirteen nurses from twelve nursing homes in Sweden were qualitative and semi-structured. The content was analysed through inductive content analysis. Results Nurses described communicative, relational and organisational challenges. A major issue was difficulties to communicate with the patient, resulting in uncertain pain assessments. Other difficulties were to separate pain from anxiety, to balance benefits and risks in morphine administration, and to create good relationships with health care personnel and relatives. Relatives could greatly influence the assessment and management of pain, both as interpreters of pain behaviour and by questioning the care given. Facilitators of good pain management were good communication and relations with health care staff and relatives, having extensive professional experience, and knowing the patient.Conclusions This study highlights the need for nursing homes to employ specialist-trained nurses, who have the appropriate knowledge and skills to deal with the challenges in caring for end-of-life patients with dementia and pain. Additionally, there should be resources and strategies available for providing information to patients’ family members and for involving them in the decisional process, as they are often unfamiliar with the multitude of considerations involved in decisions such as whether to administrative morphine or not.

scholarly journals End-of-life care for people with advanced dementia and pain: A qualitative study in Swedish nursing homes 

2020 ◽  
Author(s):  
Emma Lundin ◽  
Tove Godskesen
Keyword(s):  
Pain Management ◽  
Nursing Homes ◽  
End Of Life ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Healthcare Personnel ◽  
Life Care ◽  
Advanced Dementia ◽  
Structured Interviews ◽  
Good Communication

Abstract Background: Of the Swedish people with advanced dementia, the majority die in nursing homes. Unresolved pain can occur in people with a terminal illness such as dementia. However, pain management in people with advanced dementia is often suboptimal and inadequate, with fewer palliative care interventions than offered to cancer patients. Although they are largely responsible for the care of these people, few studies have addressed the experiences of registered nurses in this respect. Therefore, the aim of this study was to describe the experiences of nurses in caring for people with advanced dementia and pain at the end of life.Methods: The study had a descriptive explorative design. Individual qualitative, semi-structured interviews were carried out with thirteen nurses from twelve nursing homes in Sweden. The results were analysed using thematic content analysis.Results: The nurses described communicative, relational and organisational challenges. One major issue involved difficulties in communicating with the person with advanced dementia, resulting in uncertain pain assessment. Other difficulties involved the differentiation of pain from anxiety, the balance of benefits and risks with morphine administration, and the creation of good relationships with healthcare personnel and the persons’ relatives. Relatives can greatly affect the assessment and management of pain, both because of their ability to interpret pain behaviour and by questioning the care given. Good pain management was facilitated by good communication and relationships with healthcare staff and relatives, extensive professional nursing experience, and already knowing the person with advanced dementia. Conclusions: This study highlights the need for nursing homes to employ specialist nurses who have been trained in the appropriate knowledge and skills to deal with the challenges of end-of-life care for people with advanced dementia and pain. Additionally, there should be resources and strategies available for providing information to family members and for involving them in the decision-making process, as they are often unfamiliar with the multitude of considerations involved in decisions such as whether to administer morphine or not.

scholarly journals End-of-life care for people with advanced dementia and pain: A qualitative study in Swedish nursing homes

2020 ◽  
Author(s):  
Emma Lundin ◽  
Tove Godskesen
Keyword(s):  
Pain Management ◽  
Nursing Homes ◽  
End Of Life ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Healthcare Personnel ◽  
Life Care ◽  
Advanced Dementia ◽  
Structured Interviews ◽  
Good Communication

Abstract Background Of the Swedish people with advanced dementia, the majority die in nursing homes. Unresolved pain can occur in people with a terminal illness such as dementia. However, pain management in people with advanced dementia is often suboptimal and inadequate, with fewer palliative care interventions than offered to cancer patients. Although they are largely responsible for the care of these people, few studies have addressed the experiences of registered nurses in this respect. Therefore, the aim of this study was to describe the experiences of nurses in caring for people with advanced dementia and pain at the end of life.Methods The study had a descriptive explorative design. Individual qualitative, semi-structured interviews were carried out with thirteen nurses from twelve nursing homes in Sweden. The results were analysed using thematic content analysis.Results The nurses described communicative, relational and organisational challenges. One major issue involved difficulties in communicating with the person with advanced dementia, resulting in uncertain pain assessment. Other difficulties involved the differentiation of pain from anxiety, the balance of benefits and risks with morphine administration, and the creation of good relationships with healthcare personnel and the persons’ relatives. Relatives can greatly affect the assessment and management of pain, both because of their ability to interpret pain behaviour and by questioning the care given. Good pain management was facilitated by good communication and relationships with healthcare staff and relatives, extensive professional nursing experience, and already knowing the person with advanced dementia.Conclusions This study highlights the need for nursing homes to employ specialist nurses who have been trained in the appropriate knowledge and skills to deal with the challenges of end-of-life care for people with advanced dementia and pain. Additionally, there should be resources and strategies available for providing information to family members and for involving them in the decision-making process, as they are often unfamiliar with the multitude of considerations involved in decisions such as whether to administer morphine or not.

scholarly journals End-of-life care for people with advanced dementia and pain: a qualitative study in Swedish nursing homes

BMC Nursing ◽  
2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Emma Lundin ◽  
Tove E. Godskesen
Keyword(s):  
Pain Management ◽  
Nursing Homes ◽  
End Of Life ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Healthcare Personnel ◽  
Life Care ◽  
Advanced Dementia ◽  
Structured Interviews ◽  
Good Communication

Abstract Background Of the Swedish people with advanced dementia, the majority die in nursing homes. Unresolved pain can occur in people with a terminal illness such as dementia. However, pain management in people with advanced dementia is often suboptimal and inadequate, with fewer palliative care interventions than offered to cancer patients. Although they are largely responsible for the care of these people, few studies have addressed the experiences of registered nurses in this respect. Therefore, the aim of this study was to describe the experiences of nurses in caring for people with advanced dementia and pain at the end of life. Methods The study had a descriptive explorative design. Individual qualitative, semi-structured interviews were carried out with 13 nurses from 12 nursing homes in Sweden. The results were analysed using thematic content analysis. Results The nurses described communicative, relational and organisational challenges. One major issue involved difficulties communicating with the person with advanced dementia, resulting in uncertain pain assessment. Other difficulties involved the differentiation of pain from anxiety, the balance of benefits and risks with morphine administration, and the creation of good relationships with healthcare personnel and the persons’ relatives. Relatives can greatly affect the assessment and management of pain, both because of their ability to interpret pain behaviour and by questioning the care given. Good pain management was facilitated by good communication and relationships with healthcare staff and relatives, extensive professional nursing experience, and already knowing the person with advanced dementia. Conclusions This study highlights the need for nursing homes to employ specialist nurses who have been trained in the appropriate knowledge and skills to deal with the challenges of end-of-life care for people with advanced dementia and pain. Additionally, there should be resources and strategies available for providing information to family members and for involving them in the decision-making process, as they are often unfamiliar with the multitude of considerations involved in decisions such as whether to administer morphine or not.

scholarly journals End-of-life care for people with advanced dementia and pain: A qualitative study in Swedish nursing homes

2020 ◽  
Author(s):  
Emma Lundin ◽  
Tove Godskesen
Keyword(s):  
Pain Management ◽  
Nursing Homes ◽  
End Of Life ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Healthcare Personnel ◽  
Life Care ◽  
Advanced Dementia ◽  
Structured Interviews ◽  
Good Communication

Abstract Background Of the Swedish people with advanced dementia, the majority die in nursing homes. Unresolved pain can occur in people with a terminal illness such as dementia. However, pain management in people with advanced dementia is often suboptimal and inadequate, with fewer palliative care interventions than offered to cancer patients. Although they are largely responsible for the care of these people, few studies have addressed the experiences of registered nurses in this respect. Therefore the aim of this study was to describe the experiences of nurses in caring for people with advanced dementia and pain at the end of life. Methods The study had a descriptive explorative design. Individual qualitative, semi-structured interviews were carried out with thirteen nurses from twelve nursing homes in Sweden. The results were analysed using thematic content analysis. Results The nurses described communicative, relational and organisational challenges. One major issue involved difficulties in communicating with the person with advanced dementia, resulting in uncertain pain assessment. Other difficulties involved the differentiation of pain from anxiety, the balance of benefits and risks with morphine administration, and the creation of good relationships with healthcare personnel and the persons’ relatives. Relatives can greatly affect the assessment and management of pain, both because of their ability to interpret pain behaviour and by questioning the care given. Good pain management was facilitated by good communication and relationships with healthcare staff and relatives, extensive professional nursing experience, and already knowing the person with advanced dementia. Conclusions This study highlights the need for nursing homes to employ specialist nurses who have been trained in the appropriate knowledge and skills to deal with the challenges of end-of-life care for people with advanced dementia and pain. Additionally, there should be resources and strategies available for providing information to family members and for involving them in the decision-making process, as they are often unfamiliar with the multitude of considerations involved in decisions such as whether to administer morphine or not.

scholarly journals Occupational Risk Factors for Upper-limb and Neck Musculoskeletal Disorder among Health-care Staff in Nursing Homes for the Elderly in France

2014 ◽  
Vol 52 (4) ◽  
pp. 334-346 ◽  
Author(s):  
Carole PELISSIER ◽  
Luc FONTANA ◽  
Emmanuel FORT ◽  
Jean Pierre AGARD ◽  
Francoise COUPRIE ◽  
...  
Keyword(s):  
Risk Factors ◽  
Health Care ◽  
Nursing Homes ◽  
Upper Limb ◽  
Musculoskeletal Disorder ◽  
The Elderly ◽  
Care Staff ◽  
Health Care Staff ◽  
Occupational Risk Factors ◽  
Homes For The Elderly

End-of-life care in nursing home settings: Do race or age matter?

2008 ◽  
Vol 6 (1) ◽  
pp. 21-27 ◽  
Author(s):  
Kimberly S. Reynolds ◽  
Laura C. Hanson ◽  
Martha Henderson ◽  
Karen E. Steinhauser
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Pain Management ◽  
Nursing Homes ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

ABSTRACTObjective:One-quarter of all U.S. chronic-disease deaths occur in nursing homes, yet few studies examine palliative care quality in these settings. This study tests whether racial and/or age-based differences in end-of-life care exist in these institutional settings.Methods:We abstracted residents' charts (N = 1133) in 12 nursing homes. Researchers collected data on indicators of palliative care in two domains of care—advance care planning and pain management—and on residents' demographic and health status variables. Analyses tested for differences by race and age.Results:White residents were more likely than minorities to have DNR orders (69.5% vs. 37.3%), living wills (39% vs. 5%), and health care proxies (36.2% vs. 11.8%; p < .001 for each). Advance directives were highly and positively correlated with age. In-depth advance care planning discussions between residents, families, and health care providers were rare for all residents, irrespective of demographic characteristics. Nursing staff considered older residents to have milder and less frequent pain than younger residents. We found no disparities in pain management based on race.Significance of results:To the extent that advance care planning improves care at the end of life, racial minorities in nursing homes are disadvantaged compared to their white fellow residents. Focusing on in-depth discussions of values and goals of care can improve palliative care for all residents and may help to ameliorate racial disparities in end-of-life care. Staff should consider residents of all ages as appropriate recipients of advance care planning efforts and should be cognizant of the fact that individuals of all ages can experience pain. Nursing homes may do a better job than other health care institutions in eliminating racial disparities in pain management.

scholarly journals The emotional labour of quality improvement work in end of life care: a qualitative study of Patient and Family Centred Care in England

2019 ◽  
Author(s):  
Richard Boulton ◽  
Annette Boaz
Keyword(s):  
Health Care ◽  
Quality Improvement ◽  
End Of Life ◽  
Patient Experience ◽  
End Of Life Care ◽  
Unintended Consequences ◽  
Care Staff ◽  
Health Care Staff ◽  
Life Care ◽  
Emotional Labour

Abstract BACKGROUND There is a growing emphasis on understanding patient experience in order to inform efforts to support improvement. This paper reports findings from an implementation study of an evidence based intervention called Patient and Family Centred Care (PFCC) designed to tap into patient experience as a basis for improvement. In this study the PFCC intervention was spread to a new service area (end of life care) and delivered at scale in England. The findings presented here focus specifically on one key aspect of the intervention: staff shadowing of patients, designed to help staff connect emotionally with patients’ experiences of their service in order to bring about improvements. METHODS The study methods were ethnographic observations of key events, semi-structured interviews with members of participating teams and the programme implementation support team and managers, and a review of the documents used in the set up and running of the programme. RESULTS One of the key strengths of the PFCC approach is to encourage staff through shadowing to engage with patient experience of services. Many staff described the process of shadowing as a transformative experience that alerted them to immediate areas where their services could be improved. However, engaging with patient experience of end of life care services also had unintended consequences for some staff in the form of emotional labour. Furthermore, we observed difficulties encountered by staff that are not accounted for in the existing PFCC literature relating to how care service structures may unevenly distribute the amount of ‘emotional labour’ that staff members need to invest in implementing the programme. CONCLUSIONS Connecting with patient experience is a crucial aspect of a number of quality improvement interventions that aim to help staff to engage with the lived experience of their services and reconnect their motivations for working in the health care system. However, there may be unintended consequences for health care staff, particularly in sensitive areas of service delivery such as end of life care. The ‘emotional labour’ for staff of engaging in quality improvement work informed by patient experience should be considered in planning and supporting patient experience led quality improvement.

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