Award Title: Ensuring proactive efficient and effective out of hours palliative care provision: examining the role, contribution and impact of the HCA
Funder: Marie Curie

Abstract: Background/ Scope of the study:  Most people spend their last year of their life at home, with many wishing to die there1-2. Multi-disciplinary teams comprised of GP, District Nurse, Specialist Palliative Care Nurse and Health Care Assistants (HCAs) have a key role to play in enabling this. HCAs are not regulated nor subject to standardised training, yet play a crucial role in the provision end of life care 3-5, often being the first to recognise and alert professionals to patient changes6. A patient priorities exercise demonstrated that out of hours (OOH) palliative care services (i.e. between 18.30 -08.00 hours) are integral to the care of patients at end of life7.   Little is known however, about the role, contribution and impact HCAs have on OOH palliative care services.

 

Aim: To examine the HCA role, contribution and impact on service delivery and patient care in out of hour’s community palliative care provided by hospice organisations.

 

Methods: The study will be conducted over four phases.

 

Phase one involves a scoping review of policy and literature, devised according to guidelines 27-28, to examine published evidence and policy that informs HCA practice, and to identify gaps in knowledge. 

 

Phase two comprises an online census of all Hospice Directors of Nursing or Community of Nursing Services Managers across the UK (n=260), to examine HCA workforce characteristics, roles, employment contracts, organisational and regulatory guidelines for service provision within community based OOH care.  Each hospice will be initially contacted to identify and confirm the contact details of the Director of Nursing or Community of Nursing Services Manager.  This will be followed by an email invitation with a hyperlink to the survey using Qualtrics, and two reminder emails.  These findings will provide an understanding of the HCA role and OOH community based practices in hospice organisations.  The survey data will also be used to inform the sampling matrix for the selection of case studies in phase 3. Data will be analysed using SPSS (v 23) and free text replies subject to content analysis and response rates according to CHERRIES checklist30. 

 

Phase three will comprise a series of in-depth organisational case studies31 across six hospices located in the UK. Hospices will be purposively selected as case studies to ensure a variety of organisational and service settings in which HCAs are involved in community based OOH care are included. The aim will be to explore the HCA role, contribution and impact on hospice organisation OOH service models and the extent to which they help patients stay in the home.  Each case study will include in-depth interviews and documentary analysis. In-depth interviews will be undertaken with a purposive sample of HCAs (n=5-7), patients and carers (n=2-4), key health professionals (n= 3-5) and managers (n=2-3). Participants’ demographic information will be collected using a brief questionnaire. Documents relating to the HCA role and polices, and structures of community based OOH working will be obtained from each organisation. A framework approach34 will be used to guide data analysis processes. 

 

Phase four will comprise of deliberative workshops, consisting of two deliberative panels, with a total of 30 key stakeholders, held in two locations in the UK.  The workshops will be held over a period of one day on two separate occasions.   Deliberative panels with selected participants from each study site (i.e., HCAs, healthcare professionals and management n=10-12) and a purposive snowball sample of key stakeholders (patient and carer representatives (n=8), service managers (n=5) and policy makers (n=5) will be invited.  The findings across the three previous phases will be integrated to provide a synthesis to inform phase 4 discussion.  A four-phased deliberative panel approach will be adopted36; enabling facilitated discussion of findings, reflection, identification and development of strategic recommendations relating to HCA role in community based OOH service provision.  Panels will be audio recorded and subjected to thematic analysis.

 

Proposed Outcomes:  First, it will provide a detailed understanding on the HCA workforce and the role they play in community based OOH palliative care provision.  Second the results will raise the profile of HCAs and assist in future national workforce planning in hospice palliative care.  Finally, the project will make policy and practice recommendations for enhancing the HCA role in community based OOH hospice care provision.

Lay Abstract: Most of the last year of a person’s life is spent at home with some care being delivered during out of normal working hour’s periods such as, evenings, night time and weekends. Out of hours palliative care in the home can be delivered by health care professionals including doctors, nurses and healthcare assistants.  Healthcare assistants deliver most of the bedside patient care by helping qualified nurses. They are not required to be trained to any national standard and are usually only provided with informal job-related training.   Research suggests that healthcare assistants support family members, provide most of the personal care to patients in the home and play a key role in delivering care to the dying. However, their role and influence on the delivery of out of hour’s palliative care is unknown but may help a patient remain at home.

 

The research will be undertaken in four distinct but related phases.

 

1. We will look at what has already been published to find out what is known about the healthcare assistant’s role in out of hours community palliative care and what gaps in knowledge exist.

 

2. A survey, based on phase one findings, to identify how healthcare assistants are employed across UK hospices will be undertaken. This will look at out of hour’s community service provision and the assistant role, describing the numbers, types and training nationally as well as describing the organisational guidelines.

 

3. Case studies across several hospices in the UK, will explore the experiences of the health care assistants and the impact of their role in the out of hours period that help patients stay in their home.  This will involve analysis of out of hour hospice service documents and interviews with members of the out of hours care team (such as healthcare assistants, specialist palliative care nurses, district nurses and general practitioners) patients and caregivers and managers of the service. Documents, transcriptions, and notes from the interviews will be analysed to identify themes.  

 

4. Findings from across the three phases will be analysed and two workshops will be held with key stakeholders to consider how the research findings can inform policy recommendations about the role healthcare assistants in the delivery of out of hour’s palliative care.

Research Activity Codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;7.2 END OF LIFE CARE
Health Categories: GENERIC HEALTH RELEVANCE