Research project examines cancer support engagement

Ireland has a wonderful record of public support for cancer services. The dreaded disease has inveigled its way into the lives of almost every Irish home, making it a cause that resonates with people.

In Westmeath LARCC (Lakelands Area Retreat and Cancer Centre) has provided therapy and support to clients confronted by an illness that continues to confound and frighten.

LARCC offers psychological and emotional aid to those living with cancer, providing a homely environment where patients and family members engage in a selection of services including one-to-one counselling, complementary therapies, nurse support and telephone helpline.

It’s a National Cancer Support Centre and has been assisting service users since November 2002. The Irish Association for Cancer Research believe such centres may be under-utilised by adults facing, or who have faced cancer, who perceive barriers to the service.

Moyvore native Niall Kennedy is a postgraduate psychology student in the School of Psychology at UCD. In conjunction with Professor Suzanne Guerin, he’s preparing to launch a research project in the Westmeath area.

Prof Guerin is associate professor in research design and analysis and head of school at the UCD School of Psychology. She has worked with Barretstown, the organisation that supports children with serious illness, for the last 30 years.

The research will investigate the levels of engagement with community support by adult cancer survivors. Conducted on behalf of the National Cancer Control Programme (NCCP), it hopes to improve understanding of the perceived obstacles.

The first step in the process is the recruitment of participants and to raise awareness of the project among the public.

“This is a programme of research looking at aspects of the health services and the support for people with different illnesses and conditions,” Prof Guerin explained.

The goal of the NCCP is to work with services to promote prevention, treatments, and look at not only survival, but the quality of life of people experience after a diagnosis of cancer.

“We’ve been working on the project since September,” Niall told the Examiner, “The project will link in with organisations across the country to get ‘the lay of the land’ when it comes to cancer support. It’s been great working with them.”

Niall and Suzanne believe there are a good number of people who can provide valuable data to the project: “When we look to the international literature, there are definitely increasing numbers of people affected by cancer. Improvements in early detection and early treatments, and the efficacy of the medical treatments, means there are more people living what we call ‘with and after cancer’.

“If you think about the number of people impacted by cancer, it’s a significant proportion of the population, particularly when you add in family members of the person with the diagnosis,” Professor Guerin says.

Support services like LARCC have formed an alliance of community support. Joining together the independent cancer support services makes sense: “This affords a standardisation of care, and a standardisation of the service provision around the country,” Niall says.

Tracking how people engage with the supports is difficult: “The reach of cancer, as a disease, is very complex. There’s obviously different forms. People at different stages of life are affected by different types.

“We know more about some than others. What’s common is that connection to an understanding of the threat of cancer, the impact it can have, but also increasingly the recognition that it’s something that you can live with and after,” Suzanne says.

Support services play a vital role in a societal approach to treating cancer. Making that support relevant to people who have recently been diagnosed, or are in remission can ensure the best long term outcomes.

“We’re hoping to talk to people who don’t engage with these centres. It’s really important to recognise that the nature of cancer can be very individual. Some people will engage with every support they get, they’ll go to every support group, they’ll take part, they’ll gather all the information.

“Others will respond to the illness in a different way, maybe they get massive support from families, and they may not feel it is necessary to go to these centres,” Professor Guerin states.

She says the success of the project will be down to identifying people who have gone through cancer treatment: “Our question for people who don’t engage with centres in their local communities is, what are the factors that influence their decision or choice or reason not to engage? It’s tricky to do research on something that you can’t really define.

“We want to hear from anybody who has had cancer or has cancer, even those who’ve accessed the services. We are also asking about their experience of engaging with the services and how that has been for them.”

As a Westmeath native, one of the things Niall brings to the research is his knowledge of the local community, and he will be harnessing that to encourage as many people as possible to participate in the research.

This type of research requires a knowledge of the local environments; knowing where people have their coffees, knowing the pharmacists, knowing the GAA clubs so people can recommend participants.

This will in turn improve service offering across the country: “The ultimate aim is to find out why the levels of engagement are. Are people of a certain age more likely to avail of the service?

“We don’t know the answers yet, but I recently spoke to a number of the Alliance members around the country, and they’re really excited about the results of this research because they can use it to ameliorate their service offerings,” Niall says.

The project hopes to speak to as many people as possible: “Anyone 18 years and over and who has had any type of cancer. We are focusing on people with the diagnosis. We don’t have the capacity to extend the research to family members, but we do think that family members could be a point of contact.

“They may know their dad or their sister is feeling isolated. By engaging in this piece of research they can give an insight that will inform practice. It will also raise awareness of the centres just by having people complete the survey.”

If you are living with, or after, cancer you can participate in this National Cancer Control Programme by scanning the QR code in the advertisement on this page.