One in three of us will develop cancer at some point in our lives. But survival rates have improved to the point that two-thirds of those diagnosed live more than five years.

This extraordinary shift over the past few decades introduces new challenges. A large and growing proportion of people diagnosed with cancer are living with it, rather than dying of it.

In our recently published research we examined the cancer experiences of 81 New Zealanders (23 Māori and 58 non-Māori).

We found survivorship not only entailed managing the disease, but also “wrangling” a complex health system.

Surviving disease or surviving the system

Our research focused on those who had lived longer than expected (four to 32 years since first diagnosis) with a life-limiting or terminal diagnosis of cancer.

Common to many survivors’ stories was the effort it took to wrangle the system or find others to advocate on their behalf, even to get a formal diagnosis and treatment.

By wrangling we refer to the practices required to traverse complex and sometimes unwelcoming systems. This is an often unnoticed but very real struggle that comes on top of managing the disease itself.

The common focus of the healthcare system is on symptoms, side effects of treatment and other biological aspects of cancer. But formal and informal care often falls by the wayside, despite being key to people’s everyday experiences.

The inequities of cancer survivorship are well known. Analyses show postcodes and socioeconomic status play a strong role in the prevalence of cancer and survival.

Less well known, but illustrated in our research, is that survival is also linked to people’s capacity to manage the entire healthcare system. That includes accessing a diagnosis or treatment, or identifying and accessing alternative treatments.

Survivorship is strongly related to material resources, social connections, and understandings of how the health system works and what is available. For instance, one participant who was contemplating travelling overseas to get surgery not available in New Zealand said:

We don’t trust the public system. So thankfully we had private health insurance […] But if we went overseas, health insurance only paid out to $30,000 and I think the surgery was going to be a couple of hundred thousand. I remember Dad saying and crying and just being like, I’ll sell my business […] we’ll all put in money. It was really amazing.

Assets of survivorship

In New Zealand, the government agency Pharmac determines which medications are subsidised. Yet many participants were advised by oncologists or others to “find ways” of taking costly, unsubsidised medicines.

This often meant finding tens of thousands of dollars with no guarantees. Some had the means, but for others it meant drawing on family savings, retirement funds or extending mortgages. This disproportionately favours those with access to assets and influences who survives.

But access to economic capital is only one advantage. People also have cultural resources – often described as cultural capital.

In one case, a participant realised a drug company was likely to apply to have a medicine approved. They asked their private oncologist to lobby on their behalf to obtain the drug through a compassionate access scheme, without having to pay for it.

Others gained community support through fundraising from clubs they belonged to. But some worried about where they would find the money, or did not want to burden their community.

I had my doctor friend and some others that wanted to do some public fundraising. But at the time I said, “Look, most of the people that will be contributing are people from my community who are poor already, so I’m not going to do that option”.

Accessing alternative therapies, almost exclusively self-funded, was another layer of inequity. Some felt forced to negotiate the black market to access substances such as marijuana to treat their cancer or alleviate the side effects of orthodox cancer treatment.

Cultural capital is not a replacement for access to assets, however. Māori survivorship was greatly assisted by accessing cultural resources, but often limited by lack of material assets.

Persistence pays

The last thing we need when faced with the possibility of cancer is to have to push for formal diagnosis and care. Yet this was a common experience.

One participant was told nothing could be found to explain their abdominal pain – only to find later they had pancreatic cancer. Another was told their concerns about breathing problems were a result of anxiety related to a prior mental health history, only to learn later their earlier breast cancer had spread to their lungs.

Persistence is another layer of wrangling and it often causes distress.

Once a diagnosis was given, for many people the public health system kicked in and delivered appropriate treatment. However, experiences were patchy and variable across New Zealand.

Issues included proximity to hospitals, varying degrees of specialisation available, and the requirement of extensive periods away from home and whānau. This reflects an ongoing unevenness and lack of fairness in the current system.

When facing a terminal or life-limiting diagnosis, the capacity to wrangle the system makes a difference. We shouldn’t have to wrangle, but facing this reality is an important first step.

We must ensure it doesn’t become a continuing form of inequity, whereby people with access to material resources and social and cultural connections can survive longer.

Kevin Dew, Professor of Sociology, Te Herenga Waka — Victoria University of Wellington; Alex Broom, Professor of Sociology & Director, Sydney Centre for Healthy Societies, University of Sydney; Chris Cunningham, Professor of Maori & Public Health, Massey University; Elizabeth Dennett, Associate Professor in Surgery, University of Otago; Kerry Chamberlain, Professor of Social and Health Psychology, Massey University, and Richard Egan, Associate Professor in Health Promotion, University of Otago

This article is republished from The Conversation under a Creative Commons license. Read the original article.

While many people maintain positive emotional wellbeing as they age, around half of older Australians living in residential aged care have significant levels of depression. Symptoms such as low mood, lack of interest or pleasure in life and difficulty sleeping are common.

Rates of depression in aged care appear to be increasing, and without adequate treatment, symptoms can be enduring and significantly impair older adults’ quality of life.

But only a minority of aged care residents with depression receive services specific to the condition. Less than 3% of Australian aged care residents access Medicare-subsidised mental health services, such as consultations with a psychologist or psychiatrist, each year.

Instead, residents are typically prescribed a medication by their GP to manage their mental health, which they often take for several months or years. A recent study found six in ten Australian aged care residents take antidepressants.

While antidepressant medications may help many people, we lack robust evidence on whether they work for aged care residents with depression. Researchers have described “serious limitations of the current standard of care” in reference to the widespread use of antidepressants to treat frail older people with depression.

Given this, we wanted to find out whether psychological therapies can help manage depression in this group. These treatments address factors contributing to people’s distress and provide them with skills to manage their symptoms and improve their day-to-day lives. But to date researchers, care providers and policy makers haven’t had clear information about their effectiveness for treating depression among older people in residential aged care.

The good news is the evidence we published today suggests psychological therapies may be an effective approach for people living in aged care.

We reviewed the evidence

Our research team searched for randomised controlled trials published over the past 40 years that were designed to test the effectiveness of psychological therapies for depression among aged care residents 65 and over. We identified 19 trials from seven countries, including Australia, involving a total of 873 aged care residents with significant symptoms of depression.

The studies tested several different kinds of psychological therapies, which we classified as cognitive behavioural therapy (CBT), behaviour therapy or reminiscence therapy.

CBT involves teaching practical skills to help people re-frame negative thoughts and beliefs, while behaviour therapy aims to modify behaviour patterns by encouraging people with depression to engage in pleasurable and rewarding activities. Reminiscence therapy supports older people to reflect on positive or shared memories, and helps them find meaning in their life history.

The therapies were delivered by a range of professionals, including psychologists, social workers, occupational therapists and trainee therapists.

In these studies, psychological therapies were compared to a control group where the older people did not receive psychological therapy. In most studies, this was “usual care” – the care typically provided to aged care residents, which may include access to antidepressants, scheduled activities and help with day-to-day tasks.

In some studies psychological therapy was compared to a situation where the older people received extra social contact, such as visits from a volunteer or joining in a discussion group.

What we found

Our results showed psychological therapies may be effective in reducing symptoms of depression for older people in residential aged care, compared with usual care, with effects lasting up to six months. While we didn’t see the same effect beyond six months, only two of the studies in our review followed people for this length of time, so the data was limited.

Our findings suggest these therapies may also improve quality of life and psychological wellbeing.

Psychological therapies mostly included between two and ten sessions, so the interventions were relatively brief. This is positive in terms of the potential feasibility of delivering psychological therapies at scale. The three different therapy types all appeared to be effective, compared to usual care.

However, we found psychological therapy may not be more effective than extra social contact in reducing symptoms of depression. Older people commonly feel bored, lonely and socially isolated in aged care. The activities on offer are often inadequate to meet their needs for stimulation and interest. So identifying ways to increase meaningful engagement day-to-day could improve the mental health and wellbeing of older people in aged care.

Some limitations

Many of the studies we found were of relatively poor quality, because of small sample sizes and potential risk of bias, for example. So we need more high-quality research to increase our confidence in the findings.

Many of the studies we reviewed were also old, and important gaps remain. For example, we are yet to understand the effectiveness of psychological therapies for people from diverse cultural or linguistic backgrounds.

Separately, we need better research to evaluate the effectiveness of antidepressants among aged care residents.

What needs to happen now?

Depression should not be considered a “normal” experience at this (or any other) stage of life, and those experiencing symptoms should have equal access to a range of effective treatments. The royal commission into aged care highlighted that Australians living in aged care don’t receive enough mental health support and called for this issue to be addressed.

While there have been some efforts to provide psychological services in residential aged care, the unmet need remains very high, and much more must be done.

The focus now needs to shift to how to implement psychological therapies in aged care, by increasing the competencies of the aged care workforce, training the next generation of psychologists to work in this setting, and funding these programs in a cost-effective way.

Tanya Davison, Adjunct professor, Health & Ageing Research Group, Swinburne University of Technology and Sunil Bhar, Professor of Clinical Psychology, Swinburne University of Technology

This article is republished from The Conversation under a Creative Commons license. Read the original article.