Living beyond cancer: using people's experiences to develop a resource as
Lead Research Organisation:
University of Oxford
Department Name: Primary Care Health Sciences
Abstract
Seen as an almost fatal disease half a century ago, cancer has become a treatable disease for many, with a growing proportion of cancer patients living for more than five years after a diagnosis. Recent estimates suggest that there are now 2 million people living past a diagnosis of cancer in UK and over half of these have had breast, colorectal or prostate cancer. As the five-year survival rates for all cancers combined has reached 50%, the long-term effects of cancer and its treatments, both physical and psychological, are becoming more relevant. While many people surviving at least 5 years from diagnosis report few or no problems, 20-30% report physical problems, poorer quality of life, psychological distress, sexual problems, problems with social relationships and financial concerns.
Although there is an enormous range of resources available to people with cancer, most are aimed at supporting people through the diagnosis and active treatment phases. There has been relatively little research, and few resources, to help survivors to deal with life beyond the active treatment phase. Our research with cancer survivors demonstrates the need for internet resources to support the growing number of people living with cancer long-term.
The proposed project will follow on from a Cancer Research UK funded study about the use of primary care services and unmet needs of long-term cancer survivors. As part of that research, 40 people who had survived at least 5 years from diagnosis of breast, colorectal or prostate cancer were interviewed about what it is like to live beyond cancer. The interview study was conducted using qualitative methods developed by a group of social scientists in the Health experiences research group Oxford that have been developed and refined over 10 years and based on rigorous social science research methodology. These data will be combined with interview recordings from long-term survivors of other types of cancer who participated in previous HTO studies, and re-analysed for the purpose of writing 20-25 summaries for HTO on the issues that are most important to cancer survivors. The topic summaries will be illustrated with clips from the interviews in video, audio or text format. The topic summaries will be drafted by the researcher, checked by another researcher who will familiarise themselves with all the data, and by an appropriately qualified member of an expert advisory panel. The panel will include cancer survivors, social scientists and health and social care professionals. The researcher will identify, in consultation with the advisory panel, a list of respected national and local organisations and websites that provide other kinds of information and support, for inclusion on the site.
Before our project partners, DIPEx, publish the material on the HTO website we offer a couple of pilot focus groups to ensure that the new site reflects the experiences of cancer survivors and that we have correctly identified the issues that are important to a broader range of cancer survivors than those included in the original interview sample. Audio tape recorded focus group interviews would be conducted with long-term cancer survivors and used to identify unmet information and support needs. Participants would then be invited to explore the 'draft' website and complete a brief questionnaire which would cover whether the site addressed their unmet needs, whether the issues that they think are important were covered, whether perspectives akin to their own had been covered in the topic summaries, if they had learnt anything new and whether they would recommend the site to others.
The new section of HTO on living beyond cancer will be intended primarily as a resource for other people who are living beyond cancer, their family and friends, and will also be used to educate health and social care professionals.
Although there is an enormous range of resources available to people with cancer, most are aimed at supporting people through the diagnosis and active treatment phases. There has been relatively little research, and few resources, to help survivors to deal with life beyond the active treatment phase. Our research with cancer survivors demonstrates the need for internet resources to support the growing number of people living with cancer long-term.
The proposed project will follow on from a Cancer Research UK funded study about the use of primary care services and unmet needs of long-term cancer survivors. As part of that research, 40 people who had survived at least 5 years from diagnosis of breast, colorectal or prostate cancer were interviewed about what it is like to live beyond cancer. The interview study was conducted using qualitative methods developed by a group of social scientists in the Health experiences research group Oxford that have been developed and refined over 10 years and based on rigorous social science research methodology. These data will be combined with interview recordings from long-term survivors of other types of cancer who participated in previous HTO studies, and re-analysed for the purpose of writing 20-25 summaries for HTO on the issues that are most important to cancer survivors. The topic summaries will be illustrated with clips from the interviews in video, audio or text format. The topic summaries will be drafted by the researcher, checked by another researcher who will familiarise themselves with all the data, and by an appropriately qualified member of an expert advisory panel. The panel will include cancer survivors, social scientists and health and social care professionals. The researcher will identify, in consultation with the advisory panel, a list of respected national and local organisations and websites that provide other kinds of information and support, for inclusion on the site.
Before our project partners, DIPEx, publish the material on the HTO website we offer a couple of pilot focus groups to ensure that the new site reflects the experiences of cancer survivors and that we have correctly identified the issues that are important to a broader range of cancer survivors than those included in the original interview sample. Audio tape recorded focus group interviews would be conducted with long-term cancer survivors and used to identify unmet information and support needs. Participants would then be invited to explore the 'draft' website and complete a brief questionnaire which would cover whether the site addressed their unmet needs, whether the issues that they think are important were covered, whether perspectives akin to their own had been covered in the topic summaries, if they had learnt anything new and whether they would recommend the site to others.
The new section of HTO on living beyond cancer will be intended primarily as a resource for other people who are living beyond cancer, their family and friends, and will also be used to educate health and social care professionals.
Planned Impact
In common with other HTO sections, the proposed project has the potential to improve the health and well-being of the population both directly (through use by patients and the public) and indirectly (through use in training health and social care professionals) in improving how services are delivered. This is possible because of the combination of rigorous academic research and the extensive dissemination of the projects via HTO.
People living with cancer now routinely use the internet for many purposes, including to understand what has happened to them after treatment finishes as well as during treatment, and to find out about other people's experiences. The proposed HTO site on living beyond cancer will be a valuable resource to other long-term cancer survivors who have physical or psychological needs as a result of their cancer and its treatment. The site could provide reassurance that they are not alone in having those needs, and give them the impetus or confidence to tackle unresolved issues either alone or by seeking professional help.
The general public and other people affected by the condition, such as family, friends and colleagues, can also learn how to support people living beyond cancer.
The site can also be used in education and training of health and social care professionals. A recent survey of teachers in Higher Education in the UK found that HTO summaries and video clips are being used to teach on a wide variety of courses for health professionals. A 'teaching and learning' area of HTO was launched in October 2008. Interview material used in this project will contribute to video montages for use in teaching and professional development. Material can be provided free of charge for educational purposes.
Raising the profile of issues of long-term cancer survivorship on the site could lead to the development of new or improved interventions to support people living beyond cancer e.g. by continued professional follow-up or social support, or helping people return to work. The Health Experiences Research Group is working with NICE to inform the development of guidelines and the new Quality Standards through secondments and secondary analyses of our archive of over 2,000 interviews. The analyses on experiences of cancer survivorship will feed into this process. Secondary analysis of the interviews is also being used to help improve service delivery by incorporating trigger films featuring patients' experiences into 'experience-based co-design' and 'experience led commissioning'.
www.healthtalkonline.org is available free on the Internet and advertised via posters and leaflets distributed to GPs and hospital clinics, libraries and information centres in order to maximise universal access and help to overcome the digital divide. It is recommended by staff at Maggies Centres and cancer support helplines as well as through information prescriptions. The site receives over 3 million hits per month and the DIPEx charity is continually optimising the site to further increase Google access.
HTO has links from over 500 other sites including NHS Choices, Macmillan Cancer Support, the British Heart Foundation and the Cochrane Library. The resource section within each section has links to other websites, organisations and sources of support.
HTO regularly features in the media on lists of the top health websites and is a resource on the BBC website and for BBC radio 4 programmes such as Woman's Hour and Case Notes. Doctors are increasingly being encouraged to recommend reliable websites to their patients. The site (formerly known as www.dipex.org) has been widely cited as an example of good health information on the Internet and commended in the national press. The promotion of 'information prescriptions' for patients means that many more doctors and academics recommend websites; HTO has a reputation as a site that can be trusted because it is based on rigorous social science research.
People living with cancer now routinely use the internet for many purposes, including to understand what has happened to them after treatment finishes as well as during treatment, and to find out about other people's experiences. The proposed HTO site on living beyond cancer will be a valuable resource to other long-term cancer survivors who have physical or psychological needs as a result of their cancer and its treatment. The site could provide reassurance that they are not alone in having those needs, and give them the impetus or confidence to tackle unresolved issues either alone or by seeking professional help.
The general public and other people affected by the condition, such as family, friends and colleagues, can also learn how to support people living beyond cancer.
The site can also be used in education and training of health and social care professionals. A recent survey of teachers in Higher Education in the UK found that HTO summaries and video clips are being used to teach on a wide variety of courses for health professionals. A 'teaching and learning' area of HTO was launched in October 2008. Interview material used in this project will contribute to video montages for use in teaching and professional development. Material can be provided free of charge for educational purposes.
Raising the profile of issues of long-term cancer survivorship on the site could lead to the development of new or improved interventions to support people living beyond cancer e.g. by continued professional follow-up or social support, or helping people return to work. The Health Experiences Research Group is working with NICE to inform the development of guidelines and the new Quality Standards through secondments and secondary analyses of our archive of over 2,000 interviews. The analyses on experiences of cancer survivorship will feed into this process. Secondary analysis of the interviews is also being used to help improve service delivery by incorporating trigger films featuring patients' experiences into 'experience-based co-design' and 'experience led commissioning'.
www.healthtalkonline.org is available free on the Internet and advertised via posters and leaflets distributed to GPs and hospital clinics, libraries and information centres in order to maximise universal access and help to overcome the digital divide. It is recommended by staff at Maggies Centres and cancer support helplines as well as through information prescriptions. The site receives over 3 million hits per month and the DIPEx charity is continually optimising the site to further increase Google access.
HTO has links from over 500 other sites including NHS Choices, Macmillan Cancer Support, the British Heart Foundation and the Cochrane Library. The resource section within each section has links to other websites, organisations and sources of support.
HTO regularly features in the media on lists of the top health websites and is a resource on the BBC website and for BBC radio 4 programmes such as Woman's Hour and Case Notes. Doctors are increasingly being encouraged to recommend reliable websites to their patients. The site (formerly known as www.dipex.org) has been widely cited as an example of good health information on the Internet and commended in the national press. The promotion of 'information prescriptions' for patients means that many more doctors and academics recommend websites; HTO has a reputation as a site that can be trusted because it is based on rigorous social science research.
| Description | 149 interviews with people living at least 5 years beyond a diagnosis of one of 11 types of adult cancer were secondarily analysed. The findings are presented at http://www.healthtalk.org/Cancer/Living_with_and_beyond_Cancer in 27 thematic summaries illustrated with 262 extracts from 119 interviews in video, audio or text format. The themes are as follows: Physical impacts (Eating and bowel habits, Fatigue or weakness, Lymphoedema, Vulnerabilty to infection, Pain, Urinary functioning, Nerve damage, Sexual functioning and intimate relationships, Hormonal changes and treatment, Fertility, Other long-term physical effects, Other health problems); Psychological impacts (Depression and other negative emotions, Body image, Sense of identity or self-image, Impact on friendships and family, Relationship with a spouse or partner, Changed attitudes or personal growth, Lifestyle choices, Raising awareness and supporting others, Facing the future, Reflections on the cancer experience); Practical issues (Work changes, Financial issues); Follow-up and further cancer treatment (Check-ups, Living with recurrent or advanced cancer, Living with chronic or slow growing cancers of the blood). A pre-launch evaluation with other long-term cancer survivors yielded positive feedback for the new website in terms of its presentation, trustworthiness, relevance and community support. Being diagnosed and treated for cancer affects people in a variety of ways and many of those whose initial treatment is successful make a full recovery by the time five years has elapsed since their diagnosis. However, some continue to need treatment over many years and others will be left with ongoing physical or psychological impacts of their cancer or its treatment. Physical problems mentioned in our interviews included: digestive difficulties, changed bowel habits, or managing a stoma, which affected their eating; excessive tiredness or lack of strength, restricting their activities; pain caused by surgery, radiotherapy or chemotherapy; needing to go to the toilet more often or urgently, or difficulty in directing the flow of urine; nerve damage to the hands, legs or feet, or hearing loss; changes to hormone functioning and/or fertility. Surgery or other treatment damage to lymph nodes in the groin or armpit left some with permanent lymphoedema - an incurable build up of fluid, usually in an arm or leg. People whose immune system has been compromised by their treatment may be left more vulnerable to infections; some may need to take antibiotics at the first sign of infection or to prevent infection. Loss of interest in sex was common for those who were still in treatment. Some treatments had left men unable to achieve or maintain an erection naturally. Some people were living with other chronic conditions alongside their cancer, such as diabetes, heart disease, arthritis, epilepsy, osteoporosis, or Parkinson's disease, and sometimes the other condition had a greater impact on their life than the cancer had. While some conditions may have arisen as a side effect or complication of the cancer or its treatment, others will be unconnected with it, but people couldn't be certain whether a particular health problem that occurred after their cancer was related to it. Some people had developed a second type of cancer. Some people we spoke to who had survived five or more years after a cancer diagnosis were still living with changes to their emotions such as feeling angry or more tearful than before. Anxiety and/or intermittent depression were also common. Changes to the way their body looked, worked or felt, as a result of cancer treatment, affected some people's self-confidence and interactions with other people, especially where the affected parts of the body were associated with their sense of masculinity or femininity or were highly visible to others. In addition to changes to their body image, some felt their identity or self-image had changed because they had been unable to carry out all of their usual roles in life or they no longer felt whole. Many didn't like being referred to as a 'cancer survivor' because either they didn't want to be labelled solely in relation to their illness, they had no control over whether or not they survived, or their cancer experience had not been severe enough to warrant this label or that it might still come back. Having cancer could have long-term impacts on relationships with friends and family. It was common for people to say they now invested more effort into relationships with friends who had felt able to support them during the illness and not others. Family relationships often strengthened as a result of the cancer, although some people said the experience had altered the dynamics of the relationship with their spouse or partner, and some relationships broke down. People who were in remission often said that family members worried more than they did about a possible recurrence of the cancer. Whether their close relatives were at increased risk of developing the condition was also a cause for concern. Some people said that having had cancer changed their outlook on life: they appreciated life more and reassessed what was important to them and changed how they chose to spend their time accordingly, some giving up work or deciding to change their career. People who had to give up work due to illness found they had to reduce their spending to make ends meet. State benefits helped in some cases. Obtaining insurance policies could be difficult or more expensive than before their cancer. Some people no longer worried about trivial things; others said they had more confidence to tackle challenges or more empathy with other people's problems. A common reaction was to adopt a healthier lifestyle in the hope that it would help their body deal with the cancer or prevent it coming back. Having had cancer often led people to want to support others who were going through the same experience, or to get involved in fundraising for cancer charities or campaigning for greater awareness of their type of cancer and its symptoms. People who had been in remission for a long time said they thought about their cancer less and less nowadays and it had just been a temporary episode in their life. Reflecting back on their cancer experience, these people said that support from other people, religious faith, adopting a positive attitude and using humour, had all helped them to cope. Going for check-ups could make people temporarily anxious about a possible recurrence, while others said they worried about this all the time. Some people had had symptoms investigated to rule out a recurrence of their cancer; others had been treated for one or more recurrences. Some people were living with slow growing types of cancer that could not be cured but were managed with intermittent episodes of treatment. |
| Exploitation Route | The new website on living beyond cancer will be a valuable resource to other long-term cancer survivors who have social, practical, physical or psychological needs as a result of their cancer and its treatment. The site will provide reassurance that they are not alone in having those needs, help them in making decisions and in seeking professional help. Family, friends and colleagues can also learn from the site how to support people living beyond cancer. Doctors and nurses are increasingly being encouraged to recommend reliable websites (as 'information prescriptions') to their patients. The healthtalk website (formerly known as www.dipex.org) has been widely cited as an example of good health information on the Internet and commended in the national press. Raising the profile of issues of long-term cancer survivorship on the site could improve interventions to support people living beyond cancer e.g. by continued professional follow-up or social support, or helping people return to work. Our research group has worked with the National Institute for Health and Care Excellence to inform the development of clinical guidelines and Quality Standards through a secondary analysis of the Oxford archive of over 2,000 narrative interviews. Secondary analysis of the interviews is also being used (with colleagues in Organisational Development ) to help improve service delivery by incorporating trigger films featuring patients' experiences into a process known as 'experience-based co-design' and 'experience led commissioning'. The analyses on experiences of cancer survivorship are expected to feed into these processes. In summary, this project has the potential to improve the health and well-being of the population both directly (through use by patients and the public) and indirectly (through use in training health and social care professionals) in improving how services are delivered. This is possible because of the combination of rigorous academic research and the extensive dissemination of the research via the healthtalk website, and our links to policy-makers and professional training. Interview transcripts from our studies can be made available to researchers in other academic institutions for secondary analysis. |
| Sectors | Communities and Social Services/Policy,Education,Healthcare |
| URL | http://www.healthtalk.org/Cancer/ |
| Description | Narrative summary, 2015 Since its launch in April 2013 the Living With and Beyond Cancer section of www.healthtalk.org has received 3,307 visits. It currently receives around 137 visits per month, with around 101 videos played and over 2 hours of video watched every month. Around 700 pages are viewed in the section every month. While most visitors have been from the UK, others have come from as far afield as North America, Australia, South Africa and Malta. Pages on living with chronic or slow growing cancers of the blood, relationship with a spouse or partner, sense of identity or self-image, lymphoedema and vulnerability to infection are the most popular pages. On average, people view each page for two and a half minutes. In addition, some high profile site users have tweeted about the Living with and beyond cancer site, reaching a potential 6465 followers, as follows: A public health speciality registrar with 80 followers tweeted, "Patient experiences of various conditions including cancer and follow up http://healthtalkonline.org/node/47005 > a useful resource." The Chair of INVOLVE and NIHR National Director for Public Participation and Engagement in Research with 1812 followers tweeted, "Hi Everyone. Did you know @healthtalktweet have got an ace new module up called Living with and Beyond Cancer. http://www.healthtalkonline.org/Cancer/Living_with_and_beyond_cancer ". The Natural Death Centre tweeted to their 4231 followers, "So powerful. Videos of people's experience of living with & beyond #Cancer @healthtalktweet http://healthtalkonline.org/peoples-experiences/cancer/living-and-beyond-cancer/topics" Lastly, the Programme Manager on Consequences of Cancer Treatment for Macmillan Cancer Support and the National Cancer Survivorship Initiative tweeted to 342 followers about the scrapbook of interview extracts shown to the RCGP and SAPC conferences, "This is excellent: @healthtalktweet: Scrapbook for GPs: Psychological and physical issues for patients after #cancer http://healthtalkonline.org/content/some-physical-and-psychological-issues-after-cancer-gps" The Living with and beyond Cancer section of healthtalk has been publicised to cancer professionals, academics and charitable support organisations. An overview of the project was presented to a largely general practice audience at the annual conferences of the Society for Academic Primary Care and the Royal College of GPs (July and October 2013 respectively). A 'scrapbook' containing the interview extracts shown in video format at these presentations is also available on the healthtalk website at http://healthtalk.org/scrapbook/scrapbooks. Our project partner Macmillan Cancer Support provided a link from their website to the Living with and beyond Cancer section of healthtalk and also undertook to recommend it to people who contact them for information. www.healthtalk.org is intended primarily: a) for people who have health conditions who wish to learn from the experiences of other people who have had those conditions before them, and b) to educate health and social care professionals in training and continuing education. Others affected by those health problems (including partners, families and colleagues) will also be able to learn about a wide variety of perspectives of having those conditions. We do not know who the individual users of our website are but would expect them to include patients, their carers, relatives and friends, health and social care professionals and academic researchers. The Living with and beyond Cancer project advisory panel included long-term cancer survivors and representatives of charitable organisations that support people with cancer (Macmillan Cancer Support and Maggie's Cancer Caring Centres). Long term cancer survivors were also engaged in evaluating the site before it was launched; participants were recruited through the National Cancer Research Institute Consumer Liaison Group, various cancer charities, colleagues, friends and social media. www.healthtalk.org is freely available online, easily discoverable via internet search engines, and advertised via posters and leaflets distributed to GPs and hospital clinics, libraries and information centres in order to maximise universal access and help to overcome the digital divide. The website will continue to be available for the foreseeable future and will be updated every two years in line with requirements of the Department of Health's Information Standard with which the website has been accredited. Each section of healthtalk has the potential to improve the health and well-being of the population both directly (through use by patients and the public) and indirectly (through use in training health and social care professionals) in improving service delivery. Doctors are increasingly encouraged to recommend reliable websites to their patients. The promotion of information prescriptions for patients means that many more doctors and academics recommend websites; healthtalk has a reputation as a site that can be trusted because it is based on rigorous research. As with all of the interview collections held by the HERG in Oxford University, the collections can be made available to other researchers for further secondary analyses, to educators for the creation of tailored teaching packages for professionals, and to policy makers for use in guideline development. Update February 2016 The living beyond cancer section of the site has been used 11,230 times since its launch in April 2013, with roughly 1,477 videos from the section being viewed in that time. The five most popular topics are: 1.Living with chronic or slow growing cancers of the blood 2.Relationship with a spouse or partner 3.Vulnerability to infection 4.Body image 5.Sexual functioning and intimate relationships Update March 2017 This section had 11,808 sessions in 2016 and roughly 1,548 videos were played in the section during that time. The most popular sections were: 1. Living with chronic or slow growing cancers of the blood 2. Relationship with a spouse or partner 3. Vulnerability to infection 4. Reflections on the cancer experience 5. Sexual functioning and intimate relationships Update March 2018 The living beyond cancer section has been used 18,079 times during this submission period. In that time, roughly 4,700 videos from the section were watched. The most popular section in that time were: 1. Living with chronic or slow growing cancers of the blood 2. Vulnerability to infection 3. Relationship with a spouse or partner 4. Reflections on the cancer experience 5. Sexual functioning and intimate relationships Update 2019 The Living with and Beyond Cancer section was used 25,628 times in 2018, the most popular sections were again: 1. Living with chronic or slow growing cancers of the blood 2. Vulnerability to infection 3. Relationship with a spouse or partner 4. Reflections on the cancer experience 5. Sexual functioning and intimate relationships Update 2020 Our living beyond cancer section was used 17,559 times in 2019, with the most popular sections being 1. Living with chronic or slow growing cancers of the blood 2. Vulnerability to infection 3. Relationship with a spouse or partner 4. Check-ups 5. Reflections on the cancer experience |
| Sector | Communities and Social Services/Policy,Education,Healthcare |
| Impact Types | Cultural,Societal |
| Title | A web-based resource for 'Living with cancer'. |
| Description | A multi-media resource published on healthtalk.com. |
| IP Reference | |
| Protection | Copyrighted (e.g. software) |
| Year Protection Granted | 2013 |
| Licensed | Yes |
| Impact | See narrative impact section. |