Tag Archives: Wellbeing

Balancing the benefits and harms of exercise for people living with and beyond cancer

Cancer On the Horizon – latest news Research

The benefits of exercise for people living with and beyond a cancer diagnosis are well established. A wide range of types and intensities of exercise have been shown to improve quality of life, reduce anxiety and depression, reduce cancer-related fatigue, improve treatment tolerance, and potentially lead to extended life.

The compelling evidence demonstrating the benefits of exercise for cancer survivors led to both the Exercise and Sports Science Australia (ESSA) and the Clinical Oncology Society of Australia (COSA) to call for exercise therapy to be embedded as standardised care for people with cancer.

“Exercise is widely accepted as safe, even for people living with or beyond cancer,” said Dr Rosa Spence, Research Fellow and senior member of ihop.

“However, every healthcare intervention brings risk of harm alongside potential for benefit. Unlike benefits, the harms of exercise have been poorly reported in exercise oncology trials to date, with the majority of studies failing to report or under-reporting harms.

“The problem with this is that widespread uptake of exercise into standard cancer care will require evidence of both benefit and low risk of harm across all cancer and treatment types and at the moment there is an evidence gap.

“There has been growing recognition across clinical trial disciplines of the need to provide balanced reporting of benefits and harms.

“This is why we designed the Exercise Harms Reporting Method or ExHarM protocol,” she said.

“This protocol is specifically designed for harms assessment within exercise oncology trials but can also be applicable in other behaviour change settings.”

Dr Spence says she defines the harms of exercise as ‘all undesirable, physical, psychological, economic or social consequences that are related to an individual’s participation in exercise’.

“It’s important for clinicians, patients and exercise professionals to understand the potential harms of exercise to ensure exercise is recommended to the right patients, prescribed in the right way and that individuals can make informed decisions about the potential positives and negatives of exercise participation ,” she said.

“The ExHarm protocol was developed, trialled and refined by the ihop research group to guide comprehensive and reliable harms assessment and reporting in both research and in practice.

“The protocol involves four core steps to capture, classify, analyse and report all adverse outcomes relating to exercise therapy,” she said.

  • Step 1 – Monitor and Identify – the participant reports or exercise professional observes adverse outcome.
  • Step 2 – Assess and record – record details of adverse outcome, severity, causality, impact on intervention and type of adverse outcome.
  •  Step 3 – Harms panel review – harms panel reviews and revises causality of adverse outcomes.
  • Step 4 – Analyse and report – all-cause adverse outcomes and exercise-related adverse outcomes are analysed and reported.

Dr Spence says the four-step process provides a simple framework for the collection, classification, analysis and reporting of adverse outcomes.

“ExHarm was developed with the goal of improving the quality of harms assessment and reporting within exercise oncology research and practice,” she said.

“It has been successfully implemented in multiple exercise oncology trials, involving samples with different cancer types (breast, brain and gynaecological), different stages of disease at diagnosis (stage I-IV), primary and recurrent diagnoses, and inclusion of samples with multiple comorbidities.

“Our hope is to continue to refine the protocol and continue to work to improve harms reporting across exercise research, with the goal of improving the quality of life for people living with and beyond cancer.”

To read the full manuscript on ExHaRM visit
ExHaRM Manuscript (BMJ Open)

For more information about the ihop research group, visit improvinghealth.com.au

Women in Hong Kong pilot Younger Women’s Wellness after Cancer Program

Cancer Interview Programs Research

A team of researchers at the Chinese University of Hong Kong have recently completed the pilot study of a culturally-adapted Younger Women’s Wellness After Cancer Program for Women in Hong Kong (YWWACPHK).

We sat down with Assistant Professor Dorothy Chan from the Faculty of Medicine at the University to discuss the program pilot and plans to conduct a full-scale study in the coming months.

What was the driver for developing a culturally-appropriate program for younger women after cancer in Hong Kong?

Breast cancer is the most common cancer among Hong Kong Chinese women, and its incidence rate has continued to rise in recent years. In 2020, 4,956 new cases of breast cancer were reported in Hong Kong. Of these, 1,314 patients were aged below 50 years, representing 26.5% of the total breast cancer cases.

The number of breast cancer cases diagnosed at age 50 or below in Hong Kong is increasing. Around 70% of Chinese women in this age group are married and participate in the work force. Younger Chinese women with breast cancer are therefore expected to return to work after their cancer diagnoses and treatment. Current health promotion programmes for women with breast cancer in Hong Kong do not specifically target the younger age group. Most require the women to physically attend during office hours, and thus many working women may not be able to participate. The availability of a flexible and Internet-based programme that overcomes the problems of time constraint and geographical location can offer a new channel through which women can receive health information, advice and care from healthcare professionals. Nearly 99% of Hong Kong citizens use their smartphones to connect to the Internet, and approximately 71% use desktop computers. The Internet-based YWWACP, aimed at providing a whole-lifestyle intervention to help younger women managing their health, can therefore represent a suitable approach, which meets younger women’s needs and facilitates the delivery of information and support.

How has the program been adapted for Chinese women in Hong Kong?

The programme was culturally adapted, and modifications made where necessary. The text of the electronic original YWWACP programme book was translated into traditional Chinese. Then, to enhance the cultural relevance, some modifications were made, for example, in relation to the diet (types of food), the types of physical activities commonly performed by Hong Kong Chinese women and the places where relaxation activities took place. The body mass index was modified with reference to the recommendation made by World Health Organisation for Asian adults. Information about alcohol after cancer was removed as alcohol intake is not common among Hong Kong women. Furthermore, instead of presenting the content in the form of an electronic book, the contents were presented on the website and scheduled on a daily and weekly basis (over a 12-week period). In addition, some health information, such as local cancer statistics and screening measures, and the official websites of health departments providing information on healthy eating and physical activities, were added.

To illustrate the steps to perform stretching and muscle strengthening exercises, graphics of young Chinese women were used. A voice plugin function was added so that the participants could click and listen to the content. Consultations with a cancer nurse were conducted either using telephone or text messaging with a cancer nurse at Weeks 6 and 12 as per the preference of Hong Kong Chinese women made during the virtual consultation at the beginning of the programme. The discussion board was removed as suggested by previous WWACP studies as it was rarely used by participants.

What are you hoping to achieve from conducting a full-scale study later in the year?

In our pilot study which was conducted during the COVID-19 pandemic, at 12 weeks after intervention completion, the intervention group showed a significant increase in the pain subscale scores of sexual function, and more improvement in the level of physical activity than the control group. Nineteen intervention group participants reported that they were satisfied with the programme and suggestions for improvement were provided. We hope that in our future full-scale study, not only could we see the changes in their level of physical activity and sexual function, but also we hope to see changes in other aspects, such as sleep quality, dietary intake and quality of life.

What are your long-term ambitions for the YWWACPHK?

In the long term, we hope that this programme will be incorporated into the routine health services offered to breast cancer patients or have the website of the programme made available to all cancer patients who would like to search and obtain information.

For more information about the Younger Women’s Wellness after Cancer Program for Women in Hong Kong, you can visit ywwacp.nur.cuhk.edu.hk/

Why women need to talk about type 2 diabetes

Diabetes Interview Programs Research

We recently spoke with Professor Jackie Sturt from Kings College London on the Women’s Wellness podcast about why women need to talk about type 2 diabetes and how the Women’s Wellness with Type 2 Diabetes program is helping women feel supported on their journey to wellness.

More than 200 million women across the globe are living with type 2 diabetes, which is a deficiency in insulin. Professor Sturt says the reason for the lack of insulin is often because the cells in our body have become resistant to the insulin circulating, which is necessary for glucose to get into our cells.

“Our body needs this glucose to function, but in type 2 diabetes there’s a problem between the lock and the key,” she says.

“The glucose is not getting from the circulating blood system into the cells that need it. So, there’s too much glucose circulating the body, which is what causes the problems.”

Professor Sturt says that type 2 diabetes now affects more than 60 million younger women, between the ages of 18 and 39, across the globe.

“There are genetic factors that affect your likelihood of developing type 2 diabetes, however, globally we’re living in this obesogenic environment, which is promoting sedentary behaviour and higher calory intake,” she says.

“These factors lead to weight gain and this can play a part in switching on those genes that trigger diabetes, so type 2 diabetes is certainly linked to lifestyle factors.”

Professor Sturt says women’s experiences of living with chronic health conditions differ from those of men so women need tailored support programs to suit their specific needs and concerns.

“Women have a reproductive stage of life, which can span between the age of 14 to 65, and this stage is very much impacted by living with a chronic condition like type 2 diabetes,” she says.

“Not only are women having to manage this complex metabolic condition, but they’re also having to manage their menstrual cycle, hormonal fluctuations, pregnancy and contraception and then the depletion of hormones and heading into menopause and the weight gain associated with this stage.

“All of these factors make it very difficult for women to focus on their diabetes, so they need extra support and special focus to help them feel like they’re in control and they’ve got some sense of management of these twin health experiences.”

Listen to the full episode on the Women’s Wellness podcast here or read more about the Women’s Wellness with Type 2 Diabetes program here.

 

Exploring the feasibility of a virtual wellness program for women after cancer

Cancer Interview

Since the start of the Covid-19 pandemic, workplaces and communities have been using online platforms more than ever before in order to stay socially connected despite physical distance. So how can this work in a wellness setting where support and connection is so key to success? We asked Dr Janine Porter-Steele from the Wesley Choices Cancer Support Centre and Dr Sarah Balaam from the University of Queensland about the latest EMERALD study, which is exploring the feasibility of the Younger Women’s Wellness after Cancer Program in Australian women.

What is the EMERALD Study and what are you trying to achieve with this trial? 

A team of leading Australian and New Zealand health researchers have been working together to pilot a virtual lifestyle intervention, the Younger Women’s Wellness after Cancer Program. This program aims to improve quality of life for younger women who have been diagnosed and treated for breast cancer. We aim to reduce treatment-related chronic disease risk for people taking part in the study and to determine whether this is feasible in the Australian context.

How did this Study come about? 

Partner trials of cultural-and language-adapted versions of EMERALD are currently underway in New Zealand and Hong Kong. The aim of this study is to test the feasibility of the Australian version of EMERALD in a similarly-aged, representative sample of women prior to a larger trial of the program across Australia, New Zealand and Hong Kong. Ultimately, we would like to see the wellness program embedded in clinical and community settings, making it easily accessible to those requiring post cancer treatment support.

Who can participate and how can they get involved? 

We are looking for women aged between 18 and 50 years old, who have had treatment for breast cancer in the previous 24 months, with no metastatic disease and have access to a personal computer, tablet device or smartphone.

Please visit us here to find out more.

 

One program doesn’t suit all – translating the WWACP in New Zealand and Hong Kong

Cancer Interview Programs

Following the success of the Women’s Wellness after Cancer Program (WWACP) trials in Australia, Professor Sandie McCarthy had the opportunity to take Women’s Wellness outside of Australia when she took up a position at the University of Auckland back in 2017. We talked to Professor McCarthy about why there was a need for Women’s Wellness programs overseas and how the programs have been translated to be culturally appropriate and successful in different countries and regions.

What was the impetus for translating the programs for different cultures?

In 2017 I took up the role as Head of the School of Nursing at the University of Auckland. Given my background as a chemotherapy nurse in Australia and many years in research developing the Women’s Wellness after Cancer Program, it soon became very clear that there was no cancer research happening in supportive care in New Zealand.

The system was similar in terms of acute cancer treatment but, like Australia, it lacked the aftercare that women were crying out for. And the more I embedded myself in the system and heard from clinicians and patients, the more I realised the critical need for a program like the Women’s Wellness after Cancer Program in New Zealand.

How did you adapt the program for New Zealand and, in particular, Māori women?

I started talking to Cancer Trials NZ, who traditionally dealt with acute treatment, but who were very interested in exploring the development of a supportive cancer recovery program for women in New Zealand. At the same time, we identified that Hong Kong women were also hungry for a program. We successfully secured a grant to support New Zealand and Hong Kong to work together to build up the Women’s Wellness after Cancer Programs to be culturally appropriate and address specific needs in each country.

We worked with community leaders, health practitioners and academics to tailor the programs. In New Zealand, the program we run looks very different to the one we run in Australia. For example, in New Zealand our sessions are run in a Māori cultural space in groups, rather than individual sessions, to recognise that illness is shared by the whole family rather than just tackled by the individual who is unwell.

In Hong Kong, where alcohol is not really a health concern, we stripped that out of the program and the approach we’ve taken is much more direct to suit the learning culture. The Hong Kong program also focuses mainly on gynecological cancer with a strong emphasis on sexuality.

And what’s next?

The trials in New Zealand and Hong Kong have been hugely successful and we’ve since secured two grants to develop Hong Kong and Cantonese versions of the program. We also secured a grant from the Health Research Council of New Zealand to develop a culturally appropriate program for younger women in New Zealand with breast cancer. This trial has just been completed and was a huge success, finishing 12 months earlier than expected, even though it started 9 months late.

We are also really excited to announce that we will be implementing our Women’s Wellness after Cancer Program across a major health service in Queensland and will start to train more than 200 clinicians across their public and private services.

For more information about the Women’s Wellness Programs, visit www.dawncomplete.org.au

Intimacy, Sexuality and Cancer

Cancer Personal Stories

Cancer can have an impact on just about every aspect of a person’s life but one of the more common long lasting effects of cancer, especially breast cancer, are issues relating to body image, intimacy, and sexual function. This supports the principle that these concerns need to be focused on and the opportunity created to discuss them at any stage of the treatment pathway.

There are many definitions for human sexuality and 1  how we feel about intimacy, sex, sexuality, and sexual relationships depends on a range of issues and it’s important to remember it’s not unusual to have sexual difficulties, even in times of good health and well-being. There are numerous reasons for this and often it can come down to inadequate information and education concerning sexual or reproductive health.

So why is it important to talk about sexuality and intimacy when diagnosed with cancer? It’s because this topic is very often overlooked and not discussed. This can be because it is often felt there are more important things to think about and discuss at this time, such as treatments and treatment schedules. Of course, it’s not going to be the first question someone asks their doctor but it commonly is an issue that comes to the fore at some point during or at the end of treatment. Understanding this will help you feel more confident to know when to talk more about it with someone who can help.

Living with cancer can affect a person’s sexual functioning in various ways, some of these effects may be due to the cancer itself, the treatments, or a person’s sense of self and/or their emotions at the time. Some of the sexual issues people with cancer have to deal with can be relatively minor, but sometimes they are ongoing and can be more serious and importantly, these questions change from the time of diagnosis, through treatment, and then into recovery.

As well as a cancer diagnosis, people may also have other conditions such as depression or hypertension, or they may be trying to manage menopause symptoms and along with this, their partners may be dealing with their own medical, psychological, and sexual issues. In fact, one of the best predictors of sexual concerns after a cancer diagnosis is to look at what a person’s intimate life was like before their diagnosis.

Sometimes, cancer can intensify these issues and while people may have managed different levels of desire before, cancer can complicate things and it can have an impact on both patients and their partners. People often say they experience loss of libido and interestingly, partners can too during this stressful time.

There are many solutions, and often a first step is knowing how to bring the topic up and ask for guidance. All patients should receive information about the possible side effects of the disease and treatment on sexuality and intimacy such as altered physical function and libido; problems regarding fertility; and menopause symptoms. It is, however, a difficult topic to bring up, not only for women but also for health care professionals who are also hesitant to initiate discussion and wait for the patient to voice their concerns –and consequently it often becomes an endless circle of inaction, frustration, and sadness.

It is also very important to acknowledge that these worries are valid regardless of a person’s age, whether or not they are in a relationship, the stage of their disease, and the type of cancer and surgery they are dealing with.

Here are some words you could use to help you bring the topic up.

How to bring up the topic with your health care provider:

“Is it safe to have sex / continue with our normal intimate relationship?”

“I have heard this treatment may affect my relationship with my partner.   Can you tell me what might happen?”

“My partner is worried he may hurt me if we have intercourse. Is this something I should be worried about?”

“I don’t feel attractive because of my scars and I’m worried my partner may not find me desirable any more. Can you recommend someone I can talk with about this?”

“I have developed vaginal dryness and its very painful and uncomfortable especially during intercourse – what can you suggest?”

And this may be helpful for health care professionals:

“I always ask how things are going with sexual relationships because it’s really very common to have difficulties after treatment. Is that something you would like to talk about?”

“I’m really pleased to hear the treatment side-effects are settling down. I find for most people at this stage another area of concern may be about intimacy and sexual function. Are there any issues you would like to discuss?”

If connection with a physiotherapist is available to you, their expertise can assist with advice relating to positioning and exercises to help improve pelvic floor strength. A breast care nurse or general practitioner may also be able to provide information regarding the appropriate use of gels and creams – and this is a topic we can provide more information about at another time!

Importantly, be kind to yourself and have realistic expectations.

1 W.H.O. Gender and reproductive rights: sexual health. 2002. who.int/reproductive- Health/gender/sexual_health.html. Accessed May 2007

By Janine Porter-Steele RN PhD and Leonie Young DUniv

This article first appeared in Reach to Recovery’s Bloom magazine, Issue 33 – December 2021.

Cancer, On the Horizon – latest news, Programs

Helping young people rebuild their lives after cancer

Video

A digital program to support young people adjusting to life after cancer has been awarded $1.37 million from the National Health and Medical Research Council.

Dawn collaborator Professor Sandie McCarthy, from the University of Queensland’s (UQ) School of Nursing, Midwifery and Social Work is leading the project BALANCE, which will be developed by UQ in partnership with cancer support organisation Canteen.

Professor McCarthy said the aim of the digital program was to enhance the physical and mental wellbeing of young people treated for cancer by giving them the knowledge and skills to sustain a healthy lifestyle.

“Surviving cancer does not necessarily mean younger people can return to their former state of health – they must work at it,” Professor McCarthy said.

“Young people need mental health strategies to manage the distress associated with their cancer experience.

“As the program is driven by the needs of young people, it will be designed and delivered in consultation with them.”

For more information about BALANCE, contact Professor McCarthy at s.mccarthy@uq.edu.au

Video courtesy of Channel 10 News, airing 8 October 2021

 

The BALANCE program is supported by:

UQ Balance Program Supporters

So what is motivation ?

On the Horizon – latest news

Motivation is the determination to reach our personal goals or desires. It is influenced by how much we want to achieve that goal, what we might gain from the achievement and what we from expect from ourselves.
There is little doubt that when it comes to health and wellness, the ability to stay positively motivated and continue with good physical activity and nutrition habits can be a struggle. Often we start out strong and then ‘life’ gets in the way and we go back to our old, perhaps not so good, behaviours. So here are some quick tips to help you stay motivated. 

- Self-belief to stay motivated is important as it influences our thinking. Developing a positive and high self-belief can create successful changes in our behaviours especially during exercise and help us reach our goals. Use positive self-affirmations.

- Find your reason why you want to achieve this goal, write it up somewhere and keep your focus on it, this is often a good way to stay motivated if you feel you are faltering.

- Set realistic, rewarding goals and regularly review them. This is a key aspect of keeping yourself motivated to get the positive benefits. To start with, it is sometimes helpful to just set one achievable goal and work it into your daily routine, break it down into manageable parts.  For example if your goal is to exercise, start by doing a daily walk for 30 minutes. Have a timeframe for when you want to have achieved this a s regular activity and then build on it.

- Keep a good and regular routine – Use an app or a reminder system so you can’t let the day escape before you have achieved your daily goal – some people make this work by creating a daily appointment for themselves just as they would for any other appointment for example the hairdresser, doctor, dentist or a friend. Being busy’ or ‘being too tired’ often causes a break down in the routine that was
initially set.

- Use your family and friends as support – tell them about your goals and encourage them to help keep you motivated. Buddy up with someone so you can help and motivate each-other or get yourself a mentor to guide you. Check your goals and your progress frequently. Seeing good progress is a great motivator in itself, and can also improve your self-confidence.

- Keep goals fun and reward yourself when you have achieved them, make a plan for when and how you will do this. Put a note on your calendar for reward day so you keep progressing towards the goal.

Remember …..
If you lose motivation for a day or two, don’t let that deter you. Pick yourself up and carry back on again, see it as a challenge not a failure, setbacks are normal.

Sexuality and Relationships after Cancer

Cancer

Cancer doesn’t just affect the person diagnosed it has an impact on the people who are closest to them and it can also be very stressful for their partners. For many partners there will be a period of shock, anxiety and fear until they have adjusted to the situation. There are many tricky topics for couples to negotiate during diagnosis, through treatment, and beyond and one of those topics is sexuality and intimacy.

Being close to someone who has been diagnosed and treated for cancer can impact on all aspects of the relationship including the sexual and intimate relationship of a couple. There may be a number of concerns, including resuming sexual activity because you are afraid of hurting your partner, or concerned that initiating sex is inappropriate when they are feeling tired or unwell. You may be worried about showing shock at scar or other bodily changes due to treatments, or anxious that the chemotherapy and radiotherapy could have an effect on you. It may be that you are worried about the future and are fearful of losing your partner. All of these issues may play a role in diminished sexual intimacy.

Equally your partner may be concerned about whether you will still find her attractive, how you see her now, and if you will be comparing things to how they were before. These concerns are common, and you may be both making assumptions about how the other feels without knowing it. Communication with your partner is key and taking the time to discuss how she feels about intimacy, and when she thinks a good time might be to resume sexual activity. It is important to have an open and honest conversation that remains supportive to discuss fears and worries you both have, dispel some myths  and how you will overcome them and potentially show affection in other ways.

If you can relate to some of these points, it is really important to chat to a health professional, there are often simple strategies to help address these problems.

Below are some resources that may also be helpful:

https://www.canceraustralia.gov.au/affected-cancer/cancer-types/breast-cancer/impact-breast-cancer-sexuality-and-intimacy

https://www.petermac.org/services/support-services/cancersurvivorship/survdirect/sex-and-intimacy

https://www.cancervic.org.au/living-with-cancer/sexuality-and-intimacy/sexuality-and-intimacy-overview

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/sex-and-cancer

https://breastcancernow.org/sites/default/files/intimacy_and_sexuality_for_cancer_patients_and_their_partners.pdf

Janine Porter-Steele

Personal Stories Research Spotlight on....

Janine is The Clinical Nurse Manager of the Wesley Hospital Choices Cancer Support Centre in Brisbane.  The centre offers support, sharing and information for women, men and their families affected by a diagnosis of cancer. For many years Janine has also been actively involved with the Women’s Wellness Research Programs as manager,  delivering the programs, supporting the development of resources, and co-writing a number of the journals.

Janine undertook much of her training in the UK as a registered nurse, midwife, health visitor and family planning nurse. She completed a Bachelor of Nursing at QUT, a Masters in Nursing Leadership at ACU and she is also Breast Care and Women’s Health Nurse. Janine believes very strongly in providing interdisciplinary and comprehensive support for people affected by a diagnosis and treatment of cancer and has a particular interest in younger, midlife and older women’s health. Janine completed her PhD studies in the area of cancer and sexuality linked with the Women’s Wellness after Cancer Program (WWACP). Her particular focus is in managing menopause, sexuality, body image and depression issues for women.

Lately, Janine has been working with Auckland University and the University of Queensland to deliver a program as part of a research trial providing a Women’s Wellness Program for young women in New Zealand  (NZ) diagnosed with breast cancer. She and the Women’s Wellness team have also been recipients of a grant from Wesley Medical Research. They are using this to replicate the NZ feasibility trial with young women diagnosed with breast cancer in Australia.

In her spare time Janine likes spending time with family and friends. She enjoys walking the local bush tracks in the area. Her favourite relaxation is wandering along the beach in Northern New South Wales and kayaking the rivers down there.