Energy hardship – Understanding issues for people with palliative care needs at home and promoting actions
Energy needs, Energy usage, Home heating, Income, Support measures, Energy poverty, Financial hardship, Inequalities, Palliative Care
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.
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:
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.
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.
Project planning started in January 2023. The project commenced in March 2023, and will conclude with dissemination events in January 2024.
The research team is happy to announce the acceptance of two paper presentations for the dissemination of findings:
News articles regarding the project:
For more updates on the research project, follow our Twitter page: https://twitter.com/EHPCHproject
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
The project is funded by the Irish Cancer Society.
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.
Guidance[PIP-CPC criteria]: for medicines for the relief of symptoms c
Email: Suzanne.denieffe@setu.ie
Email: info@aiihpc.org | Telephone: +353 (0)1 491 2948
