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

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Richard Boulton ◽  
Annette Boaz
Keyword(s):  
Health Care ◽  
Quality Improvement ◽  
End Of Life ◽  
Patient Experience ◽  
End Of Life Care ◽  
Care Service ◽  
Unintended Consequences ◽  
Life Care ◽  
Emotional Labour ◽  
Service Staff

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 experiences 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, and the experiences of staff carrying out shadowing for the purposes of service 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 service 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.

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 ◽  
Care Service ◽  
Unintended Consequences ◽  
Life Care ◽  
Emotional Labour ◽  
Service Staff

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 experiences 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, and the experiences of staff carrying out shadowing for the purposes of service 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 service 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.

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 ◽  
Care Service ◽  
Unintended Consequences ◽  
Life Care ◽  
Emotional Labour ◽  
Service Staff

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 experiences 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, and the experiences of staff carrying out shadowing for the purposes of service 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 service 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.

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 ◽  
Care Service ◽  
Unintended Consequences ◽  
Life Care ◽  
Emotional Labour ◽  
Service Staff

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 experiences 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, and the experiences of staff carrying out shadowing for the purposes of service 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 service 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.

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.

St Christopher's and the Future

2008 ◽  
Vol 56 (1) ◽  
pp. 63-75 ◽  
Author(s):  
Barbara Monroe ◽  
Penny Hansford ◽  
Malcolm Payne ◽  
Nigel Sykes
Keyword(s):  
Health Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Health Care Services ◽  
Care Service ◽  
Health Care Service ◽  
Cost Effective ◽  
Patient Choice ◽  
Life Care ◽  
Effective Models

The founding vision of St Christopher's Hospice was based on a recognition that permeating mainstream health care services would be essential and an emphasis on an adaptable philosophy rather than a building. Today, demographic and disease related changes mean that need and demand for end-of-life care will inevitably outstrip professional and financial resource. Hospices must engage with the development of cost-effective models of service delivery and rational planning. Only partnership working with the National Health Service, care homes, and others will ensure that appropriate care is available to everyone wherever the bed in which they die, regardless of diagnosis. Only collaboration and active engagement will ensure that future strategy in end-of-life care retains the original insight that its focus rightly includes not only patients but also the social context that will be affected by their death. Cost and patient choice dictate an emphasis on care at home. Health-promoting, public education and family-focused strategies will be essential. At a pivotal moment for the delivery of health care generally, hospices can play a vital part by marrying the role of “insistent conscience” of the health care service with continued cost-effective clinical innovation.

scholarly journals What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents

2021 ◽  
pp. 026921632110233
Author(s):  
Cari Malcolm ◽  
Katherine Knighting
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Service ◽  
Life Care ◽  
Care Providers ◽  
Specialist Care ◽  
Bereaved Parents ◽  
Home Based ◽  
Qualitative Interview Study ◽  
At Home

Background: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, particularly from the perspective of parents who experienced the death of a child at home. Aim: To explore the value and assess the effectiveness of an innovative model of care providing home-based, end-of-life care as perceived by families who accessed the service. Design: A qualitative descriptive study design was employed with in-depth semi-structured interviews conducted with bereaved parents. Setting/participants: Thirteen bereaved parents of 10 children supported by the home-based end-of-life care service. Results: Parents reported effective aspects of end-of-life care provided at home to include: (1) ability to facilitate changes in preferred place of death; (2) trusted relationships with care providers who really know the child and family; (3) provision of child and family-centred care; (4) specialist care and support provided by the service as and when needed; and (5) quality and compassionate death and bereavement care. Parents proposed recommendations for future home-based end-of-life care including shared learning, improving access to home-based care for other families and dispelling hospice myths. Conclusion: Parents with experience of caring for a dying child at home offer valuable input to future the policy and practice surrounding effective home-based, end-of-life care for children. New models of care or service developments should consider the key components and attributes for effective home-based end-of-life identified by bereaved parents in this study.

Refining Patient-Centered Measures of End-of-Life Care Quality for Children With Cancer

2021 ◽  
Author(s):  
Prasanna Ananth ◽  
Sophia Mun ◽  
Noora Reffat ◽  
Soo Jung Kang ◽  
Sarah Pitafi ◽  
...  
Keyword(s):  
Health Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Care Quality ◽  
Life Care ◽  
Children With Cancer ◽  
Symptom Screening ◽  
Palliative Care Consultation ◽  
Patient Reported

PURPOSE: There are no existing quality measures (QMs) to optimize end-of-life care for children with cancer. Previously, we developed a set of 26 candidate QMs. Our primary objective in this study was to achieve stakeholder consensus on priority measures. METHODS: We conducted an iterative, cross-sectional electronic survey, using a modified Delphi method to build consensus among clinician and family stakeholders. In each of the two rounds of surveys, stakeholders were asked to rate QMs on a 9-point Likert scale, on the basis of perceived importance. Health care professionals were additionally asked to rate measures on perceived feasibility. After each round, we computed median scores on importance and feasibility of measurement, retaining QMs with median importance scores ≥ 8. RESULTS: Twenty-five participants completed both rounds of the survey. In round 1, participants were asked to rate 26 QMs; nine QMs, including QMs pertaining to health care use, were removed because of median importance scores < 8. Two new measures were proposed for consideration in round 2, on the basis of participant feedback. Following round 2, 17 QMs were ultimately retained. QMs related to symptom screening and palliative care consultation were rated highly in importance and feasibility. QMs related to communication were rated highly important, yet less feasible. Measuring whether a patient's needs were heard by their health care team was rated among the least feasible. CONCLUSION: Childhood cancer stakeholders prioritized QMs pertaining to patient-reported outcomes, deeming measures of health care resource use less important. Future research should seek to develop novel tools for quality assessment to enhance feasibility of implementing priority measures.

Sign in / Sign up

Export Citation Format

Share Document