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Energy hardship - Understanding issues for people with palliative care needs at home and promoting actions

Research Project Title

Energy hardship – Understanding issues for people with palliative care needs at home and promoting actions

KeyWords

Energy needs, Energy usage, Home heating, Income, Support measures, Energy poverty, Financial hardship, Inequalities, Palliative Care

Challenge

People with palliative care needs and their carers may be more likely to be unable to afford to heat their homes adequately, for example if their income from work is reduced following a diagnosis. Energy usage (and therefore costs) may also increase if they and their carers are spending more time in the home. They are also often more vulnerable to the cold because of their treatment and condition. Living in a cold home adversely impacts their physical health and mental well-being at a time of crisis in their lives. In Ireland, we do not know the energy usage and needs of people with palliative care needs and their carers.

While energy companies have policies for vulnerable customers which may include payment plans, energy credits, and the installation of pay-as-you-go meters, for a range of reasons these measures may not be accessed by all who need them. There is limited awareness and understanding of the specific increased energy needs of those in need of palliative care and how vital it is for energy companies, energy regulators or government policy makers to support this vulnerable group.

People with palliative care needs and their carers may be more likely to be unable to afford to heat their homes adequately, for example if their income from work is reduced following a diagnosis. Energy usage (and therefore costs) may also increase if they and their carers are spending more time in the home. They are also often more vulnerable to the cold because of their treatment and condition. Living in a cold home adversely impacts their physical health and mental well-being at a time of crisis in their lives. In Ireland, we do not know the energy usage and needs of people with palliative care needs and their carers.

While some energy companies currently have policies for vulnerable customers which include payment plans, energy credits, and the installation of pay-as-you-go meters, these measures are across all customers. There is no awareness and understanding of the specific increased energy needs of those in need of palliative care and how vital it is for energy companies, energy regulators or government policy makers to support this vulnerable group.

Research Project aims and methods

The aim of this project is to examine and address the evidence gap in energy hardship for people with a life limiting cancer diagnosis receiving palliative care at home and to make informed recommendations that will be shared with key decision-makers who could address this economic inequality.

The objectives are to:

  1. Examine home energy usage and needs of people receiving palliative home care by exploring the views of home care nurses and family carers, patients, energy providers and energy regulators on fuel needs and energy hardship in this vulnerable cohort of people with life-limiting cancer diagnoses;
  2. Increase awareness among key stakeholders and decision-makers of home energy requirements for people with palliative care needs.
  3. Make informed recommendations and share with policymakers and energy providers the project evidence to influence fairer policy decisions and measures to address the home energy needs of those receiving palliative care at home.


This project is exploring home energy needs and usage experiences of people with palliative care needs and their family carers. People with palliative care needs and families will be invited to participate in interviews with the research team.

The project has also asked home care nurses from Milford Care Centre Limerick, Waterford Hospice, and the Irish Cancer Society national night nursing service to complete an online survey. Energy providers and regulators have also been invited to take part in interviews with the research team.

Public, patient and personal involvement

Members of the All Ireland Institute of Hospice and Palliative Care (AIIHPC) Voices4Care group (people with palliative care needs, family carers and interested citizens) reviewed the project outline. The feedback they provided on the use of language, impact, and methodology was incorporated into the final proposal

A steering committee, including three members of AIIHPC’s Voices4Care, clinicians, researchers and AIIHPC staff, will oversee the project and provide advisory support. This includes advising on the design, survey, recruitment and data collection, interpretation of results and co-design of dissemination.

Online consultation events have been undertaken with people with palliative care needs and family carers from AIIHPC’s Voices4Care group, to get their views on the issue of energy hardship, as well as on the early findings from the different parts of the research, so that these views can be incorporated into the analysis.

The research team are also interested in undertaking interviews with patients/family carers about their energy needs and issues. If you are interested in receiving more information, please email: pilar.luzrodrigues@setu.ie

People with palliative care needs and family carers will also be invited to the public dissemination event with other key stakeholders and policymakers in Dublin in January 2024. At this event, the project findings will be presented by the research team. Dissemination events will also be held in Waterford and Limerick.

Members of the All Ireland Institute of Hospice and Palliative Care (AIIHPC) Voices4Care group (people with palliative care needs, family carers and interested citizens) reviewed the project outline. The feedback they provided on the use of language, impact, and methodology was incorporated into the final proposal

A steering committee, made up of three members of AIIHPC’s Voices4Care, clinicians, researchers and AIIHPC staff, will oversee the project and provide advisory support. This includes advising on the design, survey, recruitment and data collection, interpretation of results and co-design of dissemination.

An online consultation will be held with people with palliative care needs and families from AIIHPC’s Voices4Care group, to get their views on the issue of energy hardship, as well as on the early findings from the different parts of the research, so that these views can be incorporated into the analysis.

People with palliative care needs and family carers will be invited to the public dissemination event with other key stakeholders and policymakers in Dublin in December 2023. At this event, the project findings will be presented by the research team.

Timeline

Project planning started in January 2023. The project commenced in March 2023, and will conclude with dissemination events in January 2024.

Project News and Updates

The research team is happy to announce the acceptance of two paper presentations for the dissemination of findings:

  • 3rd International Research Seminar of the AIIHPC and EAPC Reference Group on Public Health and Palliative Care, which will take place 16-17 November 2023 in Belfast, Northern Ireland. The conference theme is “A Human Rights Based Approach for Palliative Care: Towards Solutions for Public Health Palliative Care”. The team will present a paper titled “Exploring Energy Hardship in Palliative Care at Home: The Nurse Perspective”.
  • 12th Annual Palliative Care Research Network Symposium: Implementation of research for evidence based practice, which will take place on the 7th December 2023. The team will present a paper titled ‘Practice and Policy Considerations relating to Energy Hardship and Palliative Care at Home’.


News articles regarding the project:

Project Outputs

Social Media

For more updates on the research project, follow our Twitter page: https://twitter.com/EHPCHproject

Research Team

  • Dr Suzanne Denieffe, Dean of Humanities, South East Technological University
  • Dr Muireann Prendergast, School of Humanities, South East Technological University
  • Dr Pilar Rodrigues, School of Humanities, South East Technological University
  • Professor Martina Gooney, Department of Nursing and Healthcare, South East Technological University
  • Dr Patricia Hunt, Department of Nursing and Health Care, South East Technological University
  • Dr Mary Nevin, School of Nursing, Psychotherapy and Community Health, Dublin City University
  • Dr Peter May, King’s College London
  • Dr Mary Rabbitte, All Ireland Institute of Hospice and Palliative Care
Dr Suzanne Denieffe
Dr Muireann Prendergast
Dr Pilar Rodrigues
Professor Martina Gooney
Professor Martina Gooney
Dr Patricia Hunt
Dr Mary Nevin
Dr Peter May
Dr Mary Rabbitte

Collaborators

  • Milford Care Centre
  • University Hospital Waterford
  • Queen’s University Belfast
  • All Ireland Institute of Hospice and Palliative Care

Research Team

Principal Investigator: Dr Cathal Cadogan, School of Pharmacy and Pharmaceutical Sciences, Trinity College Dublin

Research Team:
Prof Carmel Hughes, School of Pharmacy, Queen’s University Belfast, Dr Sarah McLean, St Vincent’s Private Hospital, Dublin, Ireland, Ms Melanie Murphy, School of Pharmacy and Biomolecular Sciences, Royal College of Surgeons in Ireland, Prof Kathleen Bennett, Division of Population Health Sciences, Royal College of Surgeons in Ireland

Funding & Support

The project is funded by the Irish Cancer Society.

Research Impact:

A peer reviewed paper produced from this research (May et al. 2020) was used by the Department of Health to inform palliative care expenditure profiles within the ‘Spending review 2021: Impact of demographic change on health expenditure 2022-2025’, July 2021 paper.

Research Project Outputs:

Guidance[PIP-CPC criteria]: for medicines for the relief of symptoms c

For Further Information Contact:

Emailinfo@aiihpc.org | Telephone: +353 (0)1 491 2948