Title: Loneliness among people with a terminal illness and their carers in Northern Ireland.
Funder: Marie Curie

Abstract: Background: Loneliness is associated with poorer physical and mental health outcomes and quality of life (QoL). Limited evidence exists regarding the impact of loneliness on people living with a terminal condition or their carers. No evidence relates specifically to those living with a terminal illness in Northern Ireland. Aim: Explore the impact of loneliness on the health, wellbeing and QoL of people with a terminal illness and their carers in Northern Ireland; and identify potential solutions to addressing loneliness among this group. Design: Mixed methods study with PPI input to design, analysis and dissemination Data Collection: Phase 1: An online survey of Marie Curie Community Nurses and Patient and Family Support Team (PFST) members working in Northern Ireland to identify a broad range of perspectives on the impact of loneliness on the health, wellbeing and QoL of people living with a terminal illness and their caregivers, and identify potential solutions. Phase 2: Online focus groups with community nurses and PFST members to collect in-depth qualitative data around the same issues Data Analysis: Quantitative survey data will explore the reported impact of loneliness on health, wellbeing and QoL. Qualitative focus group data will be analyzed thematically. Implications: This study will provide evidence regarding the potential impact of loneliness on the health, wellbeing and QoL of people living with a terminal illness in Northern Ireland and their carers. This evidence will feed into future loneliness policy development, including a Northern Ireland Loneliness Strategy, ensuring that the experiences and voices of people living with a terminal illness are included within this

Lay abstract: Research suggests that being lonely could be associated with poorer physical and mental health and lower quality of life. However, there is very little research looking at how loneliness affects people living with a terminal illness or people caring for them. In Northern Ireland, a Loneliness Strategy is likely to be developed within the next 12-18 months. We want to make sure that the experiences of people living with a terminal illness and those supporting them in Northern Ireland are heard and included in this plan. To do this, our project will explore how loneliness could impact upon on the health, wellbeing and quality of life of people living with terminal illness, their carers, and family. We also want to think of ideas for things that could help reduce loneliness in this group. Given the tight timeframe, and resource available, data collection with patients will not be possible. Instead we will draw on staff experience to offer preliminary insights, but future work will involve patients and families directly. We plan to: 1. Send an online survey to all Marie Curie community nurses and members of the Patient and Family Support Team (PFST) in Northern Ireland to ask what they think the impact of loneliness is for people living with a terminal illness, their carers, and family. 2. Invite a smaller number of Marie Curie Community nurses and members of the PFST in Northern Ireland to join online group discussions (focus groups) to talk more about the impact of loneliness and to think of ideas for things that could be useful for reducing loneliness in this group. Once we have analysed this information, we will deliver a programme of public affairs engagement to influence loneliness policy development, ensuring that people impacted by terminal illnesses are represented in the NI Loneliness Strategy.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE;MENTAL HEALTH