Ahead of her plenary talk at the 14th World Congress of the European Association for Palliative Care on Friday, Professor Gunn Grande (University of Manchester, UK), talks to Nicoleta Mitrea (Hospice Casa Sperantei, Romania), about her work in supporting family carers in palliative care.
Nicoleta Mitrea: What inspired you to devote so much of your research life to palliative care?
Professor Gunn Grande: My first job was as a nursing auxiliary at a national hospital (Rikshospitalet) in Oslo, Norway, in the early ‘80s. I worked on a ward for patients with respiratory diseases. Many of the patients were what we would now term palliative, eg patients with lung cancer or end-stage chronic obstructive pulmonary disease (COPD). But this was not really recognised or addressed, and it seemed to me that there was a major element of patient care missing at the time. I then went on to study psychology at university and moved to Cambridge, England. When a job was advertised for a researcher for a study into domiciliary palliative care, I felt this was a welcome opportunity to look at some of the issues that had preoccupied me previously, and I haven’t looked back since. I think it is of such fundamental importance to all of us to get care towards the end of life right.
NM: Much of your work seems to focus on family caregivers. What sparked your interest in this?
GG: From the outset, a main interest area for me is how we support patients to remain at home towards the end of life and to die there if that is their preference. However, it became increasingly clear throughout my work that family carers are such an important part of that equation. To have a realistic chance of ensuring that more patients are looked after at home, we have to make sure that we support carers and equip them to support the patient, as well as look after their own needs so they ‘do not go under’. Most of the last year of life is spent at home, and whilst service providers clearly play a major part, family carers are the ones who are there 24/7.
NM: What has been your biggest achievement in palliative care?
GG: My biggest achievement is very much part of a team effort, which is the development of the Carer Support Needs Assessment Tool (CSNAT),1 together with my colleague, Gail Ewing, at the University of Cambridge, and the work to validate, trial and implement this as an intervention to support family carers, including colleagues at the University of Manchester, UK, Curtin University, Australia, and University of Victoria, Canada. This intervention has potential to make a real difference to the support of carers internationally.
NM: What lessons have you learnt in the course of your work?
GG: I have learnt lots of lessons and keep learning all the time, but a major one is to ensure that we do not do studies in isolation, but make sure that the research we do always forms part of the bigger whole to move the field forward. The Medical Research Council (MRC) framework for developing and evaluating interventions is a good guide here. 2 You also learn to be pragmatic and a problem solver when working in a complex field like palliative care.
NM: What are the main challenges of your work with family caregivers today?
GG: Although palliative care is supposed to support the family as well as the patient, I think that a major problem is that carers are often not fully ‘visible’ within the care system, e.g. there are often not systematic procedures for recording who the main carers are, documenting their needs and ensuring there is time and opportunity specifically to support them. Additionally, carers may often not define themselves as ‘carers’ or see their needs as legitimate. These form additional challenges in supporting carers as compared to patients.
NM: What gives you hope for the future?
GG: We find that practitioners are generally very keen to improve the support they provide for carers and are looking for tools and interventions to do so, which bodes well for the future. I think we are also seeing improvements in the research in this area, which is great.
1. Ewing G, Grande GE (2013). Development of a Carer Support Needs Assessment Tool (CSNAT) for end of life care practice at home: a qualitative study. Palliative Medicine; 27(3): 244 – 256. DOI: 10.1177/0269216312440607.
2. Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. Developing and evaluating complex interventions: The new Medical Research Council guidance. Int. J. of Nursing Studies 2013, 50 (5) pp.587-592.
If you’re coming to Copenhagen…
Prof Gunn Grande’s plenary talk, ‘Supporting family carers in palliative care: What are the main challenges?’, is on Friday 8 May at 14h40-15h10 in the A1/Plenary hall. You can now download the final programme and the book of abstracts for the 14th World Congress of the EAPC.
Follow all the Congress events on Twitter @EAPCOnlus – the official Congress hashtag is #eapc2015
Veniți la Copenhaga?
Vă așteptăm să participați la cel de-al 14-lea Congres Mondial al Asociației Europene pentru Îngrijiri Paliative – Copenhaga, Danemarca, 8-10 Mai, 2015. Urmăriți-ne pe Twitter @EAPCOnlus – hashtag-ul official al congresului este #eapc2015