Caring for the carers: research reveals pressures of caring

Caring for the carers: research reveals pressures of caring

New research has uncovered the emotional, financial and social pressures carers experience as they look after elderly relatives.

Massey health psychology researcher Barbara Horrell is examining the experiences of people who look after older adults in the community. As part of her doctoral degree she set up an internet forum where 60 carers from around the country shared stories over three months.

She found lack of support, an expectation to provide an increasingly technical level of care despite having no formal training, and the financial strain of replacing paid employment with unpaid caring were examples of the difficulties carers faced.

The study also found carers often put their lives on hold, feeling isolated and losing friendships because of their commitment to caring.

The study participants reported diverse experiences of care, ranging from caring for their spouse, parents, grandparents, and non-family members. They cared for people with different illnesses including chronic conditions associated with ageing, cancer, Parkinson’s and Alzheimer’s.

Mrs Horrell says carers experienced both positive and negative emotions highlighting the ambivalence and tension inherent in caring.

Her research focused on the carer’s capabilities and what they are able to do – but many of their comments were framed around the capabilities they had lost, highlighting the trade-offs they had to make.

“People tend to put their life on hold and devote themselves totally to caring. It’s what they want to do but it means they often neglect themselves in the process,” Mrs Horrell explains.

Participants shared their experiences of giving up work to become fulltime carers, which can significantly limit the things they are able to do aside from caring.

“Some carers who were previously working full time have become beneficiaries, especially once their savings run out. Others consider they are lucky to be able to continue working from home,” the Oamaru-based researcher says.

Carers also talked about the difficulties of maintaining friendships, as it could be hard to leave the person being cared for, or financial circumstances meant they could no longer afford their old lifestyle. “The carers described instances where friends stopped coming to visit. Sometimes this is because of sharing living space, which means there is a lack of privacy.

“They also mentioned that friends stop inviting them out - this may be because of carers' commitments or because they gradually lose the things they had in common with their friends and friendships become awkward,” Mrs Horrell says.

Other themes that emerged included feeling undervalued by medical professionals for their knowledge about the person being cared for, and the difficulties associated with taking a break from caring.

Mrs Horrell says the informal, invisible nature of voluntary care means carers’ work and needs go unheeded, so the research is about helping them to better manage their own health. “Because the population is ageing this research is timely, and it provides carers with the opportunity to have their say.”

She believes the research is increasingly important as New Zealand’s ageing population will put pressure on healthcare and lead to more people being cared for at home, by loved ones.

Mrs Horrell is moving onto the next stage of her research and is looking for five informal carers to share their experiences in more depth.

Over several weeks she will talk with the carers about their daily experiences; and they will choose a way to document what they do and how they feel, which may include keeping a diary, taking photos or making voice recordings.

“Often this type of research is carried out after caring has ceased. I am interested to hear about carers’ experiences as they happen, and particularly to understand how their feelings affect their daily lives,” she says.

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