Adult Survivors of Childhood Liver Transplant: Personal Narratives of an Emerging 'New' Ageing Population
Lead Research Organisation:
King's College London
Department Name: Gerontology
Abstract
Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
Publications
Karen Lowton (Author)
(2012)
Adult Survivors of Childhood Liver Transplant: Personal Narratives of an Emerging 'New' Ageing Population
Karen Lowton (Author)
(2013)
Family Survival Strategies and Network Solidarity in the Context of Children Needing Liver Transplants
Karen Lowton (Author)
(2013)
Shark Bites and Surgery: Personal and Social Meanings of a Scar for a 'New' Ageing Population
Karen Lowton (Author)
(2014)
The Limitations of Biographical Disruption Approaches: The Case of Adult Survivors of Childhood Liver Transplant.
Lowton K
(2017)
Constructing embodied identity in a 'new' ageing population: A qualitative study of the pioneer cohort of childhood liver transplant recipients in the UK.
in Social science & medicine (1982)
| Description | The success of recent medical innovations has influenced greatly both child and adult identities, not only through creating a future of survivorship for many groups that historically did not survive for long after their diagnosis but also through the creation of bodily differences and experiences which act as important signifiers for social identity. Children who undergo liver transplantation in early life are one example of a group that has been profoundly transformed through medical innovation; we collectively term these groups 'new' ageing populations. Until now, social scientists have focused on how transplantation changes adults' lives, neglecting this experience for the growing number of children who also undergo this procedure. We were interested to learn about the experiences of the UK's first cohort of childhood liver transplant recipients, who at the time of their interviews had lived for 20-30 years with a donor organ. These children as 'future adults' are unique in that they have no template on which to base their experiences and expectations. These individuals have never existed before, either as children with a future or as now-adult survivors of childhood transplant. Broadly, society has had little occasion to react to or interact with these children in everyday life. In particular we wanted to understand these recipients' experiences of growing up before and after surgery, and what role their body, with a large surgical scar and marks from other clinical procedures, played in how they saw themselves and how others reacted to them. For all children and young adults issues connected to the body can be crucial in dealing with the contexts of what is 'normal' and what is different; this is all the more so for the participants we interviewed for this study. We found the social context of the child was extremely important in influencing their self- and social identities. At home, parents appeared to shape their child's identity through controlling tightly a medical regime focused on the concept of their body as a machine. Parents celebrated their survival as a transplant recipient, yet at the same time socialised their child as a 'normal' child, albeit one who had a serious illness. The hospital appeared instrumental in shaping parents' focus on their child's body as a machine that could be 'fixed' by prioritising bodily function over appearance and enabling parents to emulate a medical way of thinking. It also gave reassurance to children through their meeting other 'different' young patients who were just like them. At school, prolonged absences meant it was difficult for these recipients to make or sustain friendships. When returning to school, participants reported being identified by their peers as a 'sick' child, and having to work hard in trying to re-join friendship groups that had developed both their educational and social learning in their absence. Nearly all our participants reported being teased or bullied, despite this not being a specific area of our questioning. Primary school was generally reported as a more unpleasant environment than secondary school for constructing a positive identity, as the physical marks of liver disease or transplant were more evident and participants had few resources on which to draw in explaining their difference. What appeared to help foster and protect a 'normal' identity was being known first to other schoolchildren as a friend, fellow student, or healthy child, before needing time away from school or being noticed for bodily differences. In this context, friends' reactions to, for example, the new transplant scar, were positive and influenced strongly participants' own attitudes towards it. The unspoken societal assumption behind transplantation was that having saved the child through medical innovation they would be able to go back to a 'normal' life that would be relatively similar to that of their peers. However, we found that it is crucial to understand that there is no 'normal' life to be resumed. In recognising this, it could be that this group might be much more than purely a pioneer cohort of those who underwent organ transplantation. It may also be that they are living the much more unpredictable lives of young people interacting in a much more reflexive society where assumptions about what ageing has become are much more provisional. |
| Exploitation Route | This group of now-adult survivors of childhood liver transplant is just one example of many groups that constitute 'new' ageing populations - those now growing into adulthood and later life due to the impact of significant medical innovation and changes in societal attitudes towards those born with health impairments. Our findings demonstrate how the concepts of 'normal' health and 'normal' life have been challenged through the difference and diversity that this group experience as they grow up, both in their appearance and in how they experience everyday life. In many cases there is no 'normal' life that can be returned to or achieved following organ transplant, although this is not to suggest that a 'different' life is of any less value or enjoyment. This has implications for the language clinicians and other healthcare professionals use to discuss the outcome of this intervention with patients and/or their parents; for example the extent to which clinicians can claim a 'normal' life can be resumed post surgery. We were surprised at the number of accounts of teasing and bullying that these now-adult survivors had experienced, particularly at primary school, especially as this was a topic we had not set out to investigate. Although these accounts are historic, occurring 20-30 years ago, use of social media in contemporary society might now exacerbate rather than ameliorate this problem. We do not have evidence to make any claims about what children currently undergoing organ transplant experience but suggest that teachers be aware of the potential for bullying and teasing in this context. |
| Sectors | Education,Healthcare |
| Description | Clinicians (hepatologists and nurses) have reported to us that they use our findings of what constitutes 'normal' and 'different' for liver transplant recipients in their consultations. This is based on the notion that there is no longer one 'normal' way to appear (in terms of the body) or to be (in terms of behaviour and activities across the lifecourse). We trust this is reassuring to future recipients who may feel pressured to achieve a typical way of being post-surgery. Our findings have also been used by NHS Choices in the context of short videos on their website for current and potential future recipients of liver transplant (and indeed other organ transplant recipients). Parents making decisions for their children to be put forward for assessment and listed for transplant may also find these videos useful as they address the process of growing into adulthood with a transplant received in childhood. There is little facility to find out how well these videos are received, other than a brief star rating option. However, from the site we do know that the first video has been watched over 4,600 times, with the video focusing on the transplant scar being watched around 1,300 times. A feature in the Daily Telegraph focusing on the study and thee now-adult recipients of childhood liver transplant (January 2014) led to a similar feature piece being published two months later in the Daily Mail 'I'm 41 but my liver is just turning 30'. These have been helpful in highlighting for the lay public the issue of both organ donation need and the increasing longevity of transplant recipients. More recently, a feature piece in Cosmopolitan magazine, a publication aimed at young women in their twenties and thirties, focused on the liver transplant scar and body image after surgery through an article on one of the early transplant recipient. We are pleased that the article, 'I've got a large scar but I've never wanted to hide it - I'll happily walk around in a bikini on the beach', adds another perspective to debates around how young women's bodies are depicted in the media and body image more generally. We are aware that one of our study participants has accepted a role as an advocate for a charity that aims to encourage people to register as organ donors via various awareness campaigns. The study has fed into a wider body of research around the 'new' ageing populations; groups of people growing older with complex health conditions with which they historically would not have survived childhood. This research has been cited in the Health Select Committee's inquiry into the management of long term conditions (LTC), and it has now been acknowledged that the definition of LTC needs to be revisited to encompass the complexity of contemporary health conditions. The study and its findings are also used in teaching postgraduates in the Department of Social Science, Health & Medicine at King's College London (Designing Qualitative Research Methods for Social Science and Health; Researching Vulnerable Populations). On a more individual level, we understand that many of our study participants, who reported feeling very isolated in not knowing another now-adult childhood liver transplant recipient, continue to provide support and friendship to each other via a closed Facebook group set up by them during the study period. |
| First Year Of Impact | 2013 |
| Sector | Communities and Social Services/Policy,Education,Healthcare |
| Impact Types | Societal,Policy & public services |
| Description | Adult survivors of childhood liver transplant : personal narratives of an emerging 'new' ageing population |
| Amount | £134,772 (GBP) |
| Funding ID | ES/J002445/1 |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2012 |
| End | 01/2014 |
| Description | British Society of Gerontology Small Events Grant |
| Amount | £500 (GBP) |
| Organisation | British Society of Gerontology |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 11/2013 |
| End | 12/2013 |
| Description | NHS Choices: Childhood Liver Transplant |
| Organisation | NHS Choices |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | We worked with NHS Choices Video to produce a series of short films for their website about growing up and growing older after a childhood liver transplant. This series includes videos focusing on: the transplant; life after transplant; relationships with family and friends; the transplant scar; and becoming adult and leaving home. |
| Start Year | 2013 |
| Description | After Ben Hardwick, a Bittersweet Legacy: Living with a New Liver |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | A long feature article was published in the Health section of the Daily Telegraph about our study and the outcomes of the first British cohort to receive childhood liver transplant. We worked with acclaimed health journalist Simon Crompton to ensure a full picture of life after childhood liver transplant was portrayed to the general public. Section not completed |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.telegraph.co.uk/health/10566984/After-Ben-Hardwick-a-bittersweet-legacy-living-with-a-new... |
| Description | All Party Parliamentary Hepatology Group: Inquiry into progress in improving outcomes in liver disease |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Written evidence submitted for APPG Hepatology for the inquiry into progress in improving outcomes in liver disease. I submitted written evidence focusing on adults with congenital or rare syndrome-related liver disease, a significant and growing part of society for whom the experience, treatment and care of what has become for them a long-term condition has become paramount. I highlighted the paucity of evidence to clarify the extent to which existing adult health and social services will have capacity to meet future demand. This group are not currently included in any national long-term care strategies, which situate health and social care issues within populations who typically acquire long term conditions at older ages, or, in the case of liver disease, situate the problem in the context of entirely preventable factors, thus potentially serving to further marginalise their treatment and care. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.hepctrust.org.uk/Resources/HepC%20New/Documents/APPHG%20report%20March%202014%20FINAL%201... |
| Description | ESRC Social Science Festival: Living Life after Childhood Liver Transplant |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Participants in your research and patient groups |
| Results and Impact | The seminar enabled our participants to meet another now-adult recipient of a childhood liver transplant. It enabled lively discussion, debate and sharing of experiences amongst patients, their families, clinicians and members of non-government organisations. A health journalist invited to the seminar subsequently wrote a feature based on the childhood liver transplant programme and our research study, which was published in The Telegraph. NHS Choices Video subsequently arranged to produce a series of short videos about growing up with a childhood liver transplant which now feature on their website http://www.nhs.uk/livewell/donation/pages/childhood-liver-transplant.aspx A YouTube video was produced by King's College London featuring one of our participants and Rt Hon Shaun Woodward MP. The video focused on the unfair prescription charges that many of these recipients in England continue to pay in adulthood https://www.youtube.com/watch?v=7ADR8ea9AbI A private Facebook group has been set up by participants to enable continuing supportive contact |
| Year(s) Of Engagement Activity | 2013 |
| URL | http://www.kcl.ac.uk/sspp/news/eventrecords/2013/Living-life-after-childhood-liver-transplant.aspx |
| Description | Health Committee: Management of long-term conditions |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | The submission to the Health Select Committee focused on one of the issues the Committee wished to examine: the implications of an ageing population for the prevalence and type of long term conditions, together with evidence about the extent to which existing services will have the capacity to meet future demand. The submission gives evidence on: • The rise of 'new' ageing populations (NAPs) and associated long term conditions • Psychosocial needs of these populations • Professional careers and service provision for NAPs • Prescription charges • Research and recommendations The Health Committee published its report in July 2014 recommending that care of long-term conditions requires NHS system change. The Committee made many recommendations including that definitions should be reviewed and approaches changed to emphasise the importance of treating the person, not the condition. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.parliament.uk/business/committees/committees-a-z/commons-select/health-committee/news/lon... |
| Description | House of Commons Oral Evidence Taken Before the Health Committee |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Oral evidence given to the Health Select Committee on the Management of Long-Term Conditions. Tuesday 18th June 2013. The Health Committee published its report in July 2014 recommending that care of long-term conditions requires NHS system change. The Committee made many recommendations including that definitions should be reviewed and approaches changed to emphasise the importance of treating the person, not the condition. |
| Year(s) Of Engagement Activity | 2013 |
| URL | http://www.parliament.uk/business/committees/committees-a-z/commons-select/health-committee/news/lon... |
| Description | King's College London: A 'New' Ageing Population |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | We called on politicians to review the cost of prescriptions for liver transplant recipients, who must take daily immunosuppressants to prevent organ rejection for the rest of their lives. For the first time a suite of personal narratives from an emerging 'new' ageing population have been gathered from the surviving members of the first cohort of paediatric liver transplant recipients, who received their transplant up to 30 years ago at Addenbrooke's or King's College Hospital. We interviewed Dr Karen Lowton, Shaun Woodward MP and liver transplant recipient, Alexandra Sullivan, about the research and its implications. Through the video we call for politicians to review the Exemption from Prescription Charges list - the list of exempted conditions does not include organ transplant; these recipients require daily immunosuppressants to stop them rejecting their donor organ and so keep them alive. Through the video we call for politicians to review the Exemption from Prescription Charges list - the list of exempted conditions does not include organ transplant; these recipients require daily immunosuppressants to stop them rejecting their donor orga |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.youtube.com/watch?v=7ADR8ea9AbI |