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Mutual Support in Palliative Care

Research Project Title

Support Exchange between Patients and Family Caregivers in Palliative Care

KeyWords

Family Caregivers, Decision Making, Support, Reciprocity, Patient, Specialist Palliative Care, Informal Caregiver, Caregivers, Supportive Care, Family Relations, Qualitative Research

Challenge

Family caregivers have been traditionally considered as providers of support within the patient-family caregiver dynamic. Recent research suggests, however, that support between patients and family caregivers can be exchanged, with support being provided to and by both patients and family caregivers. Notably, people with life-limiting illness and their family caregivers can make decisions about care in the interest of one another’s wellbeing. However, the contexts and processes of support exchange between patients and family caregivers in palliative care are poorly understood, in addition to the ways in which mutual support can influence decision-making processes between patients and family caregivers in palliative care.

Research Project aims and methods

The aims of the project are to describe and explain support exchange between patients and family caregivers in palliative care. The project explains the supportive relationship between patients and family caregivers in palliative care as reciprocal (as opposed to being given solely from family caregiver to patient) to identify the ways in which people with life-limiting illness and their family caregivers support one another. Recognising patients as both providers and recipients of support is an under-investigated concept in palliative care.

Research questions/aims:

  1. What contexts act as barriers and/or facilitators to support exchange between patients and family caregivers in palliative care? And why?
  2. Through what actions or interactions do patients and family caregivers in palliative care support one another? And why?
  3. How are palliative care patients’ and family caregivers’ preferences for care and decisions about care informed by their perceived responsibilities to one another?

The grounded theory method is being used to answer the research questions of the project. Grounded theory is a qualitative research approach that can generate theory or explanatory frameworks about phenomena, in particular new concepts for which there is a lack of pre-existing research.

Public, patient and personal involvement (PPI)

Engaged with AIIHPC Voices4Care http://aiihpc.org/policy-practice/voices4care/ and with the TCD-PPI Ignite programme https://www.tcd.ie/tcaid/ignite/index.php.
Further details coming soon!

Key Findings & Recommendations

Some results (see below) from the research have already been shared through this poster which was presented at the 18th World Congress of the European Association for Palliative Care, 15 – 17 June 2023 in Rotterdam, Netherlands.

 ‘Mutual support’ between patients and family caregivers took the following forms:

  • Remaining positive for one another
  • Being open about their care preferences and mutual distress
  • Counselling one another
  • Making decisions together about care
  • Collectively preparing for financial implications of the patient’s impending death


Patients provided emotional support
through overt expressions of concern, encouragement, and affection in lieu of physical support they received and were unable to physically reciprocate to family caregiver.

Patients with advanced illness in palliative care can still reciprocate in a caring role and remain sensitive to needs of their family caregiver. These findings directly inform the development of psychosocial interventions in palliative care focused on supportive relationships between patients and family caregivers.

Further findings from the project are currently going through a peer review process and will be shared here when they have been published.

Timeline

Sept 2019 – Feb 2024

Research Team

Dr Geraldine Foley BSc.OT MSc PhD (Primary Investigator)
Assistant Professor in Occupational Therapy
Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin, Ireland

Rachel McCauley MSc BSc (PhD Student)
Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin, Ireland

Collaborators

Prof. Karen Ryan MB BCh BAO BMed Sc FRCPI
Consultant in Palliative Medicine
St. Francis Hospice, Dublin, Ireland and Mater Misericordiae Hospital Dublin, Ireland
Clinical Professor, University College Dublin, Ireland

Dr Regina McQuillan MB BCh BAO FRCPI
Consultant in Palliative Medicine, St. Francis Hospice, Dublin and Beaumont Hospital, Dublin, Ireland
Honorary Associate Clinical Professor, Royal College of Surgeons of Ireland, Dublin, Ireland

Funding

Provost’s PhD Award Scholarship, Trinity College Dublin.

Research Project Outputs and impact

Publications:
McCauley R, Ryan K, McQuillan R, Selman LE, Foley G. Supportive relationships between patients and family caregivers in specialist palliative care: A qualitative study of barriers and facilitators. BMJ Supportive and Palliative Care, 2023
http://dx.doi.org/10.1136/spcare-2023-004371


McCauley R, Ryan K, McQuillan R, Foley G.  Mutual support between patients and family caregivers in palliative care: A qualitative study
https://journals.sagepub.com/doi/10.1177/02692163231205130

McCauley R, Ryan K, McQuillan R, Foley G.  Patient and caregiver reciprocal support: Impact on decision making in specialist palliative care. Journal of Pain and Symptom Management, 2023.
https://doi.org/10.1016/j.jpainsymman.2023.08.002

McCauley R, McQuillan R, Ryan K, Foley G.  Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis. Palliative Medicine, 2021
https://doi.org/10.1177/0269216321999962

Oral Presentation:
Barriers to and Facilitators for Mutual Support between Patients and Family Caregivers in Palliative Care

22nd Irish Association for Palliative Care (IAPC) Annual Education and Research Seminar
2 February 2023
Dublin, Ireland

A Systematic Review with Narrative Synthesis on Mutual Support between Patients and Family Caregivers in Palliative Care

17th World Congress of The European Association for Palliative Care
6 – 8 October 2021
Helsinki, Finland

Poster Presentation:
A Qualitative Study of Mutual Support between Patients and Family Caregivers in Palliative Care

18th World Congress of the European Association for Palliative Care
15 – 17 June 2023
Rotterdam, Netherlands

Related prior work

Systematic review which outlines scarcity of literature on the topic – highlights need for and novelty of this project:
McCauley R, McQuillan R, Ryan K, Foley G. Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis. Palliative Medicine, 2021
https://doi.org/10.1177/0269216321999962

For Further Information Contact:

ramccaul@tcd.ie
Twitter: @rachelcmccauley