Life Interrupted: An Interpretative Phenomenological Analysis of Young People and their Family/Significant Other Living with Malignant Melanoma

Introduction Melanoma is one of the most common human malignancies. Yet, it is often thought of as a disease of adulthood rather than one affecting children and young people. Although melanoma is rare in children, the incidence is rising in adolescents and young adults. Despite improvements in survival rates for young people, there is no evidence around the experiences of young people and their family/significant of living with this disease. Method A qualitative study underpinned by Interpretive Phenomenological Analysis was conducted using a novel multiperspective design to explore the experiences of young people and their family/significant other living with malignant melanoma in Scotland. Five young people were purposively sampled from three Scottish National Health Service Boards based on the treatment location. Each young person and a nominated family member/significant other were interviewed (n=10) either individually (n=4) or as a dyad (n=6). Semi-structured interviews were conducted, and, with the participant’s consent, interview data were audio-recorded and transcribed verbatim and analysed. This identified key themes which were then clustered into four dominant super-ordinate themes and the findings distilled into an overarching metanarrative. Findings The metanarrative ‘Life Interrupted' was the core conceptual thread woven throughout the findings. It represents the interconnections and interrelationships between the four identified super-ordinate themes that encapsulated the experience of young people living with malignant melanoma and that of their family/significant other: (1) ‘Is it Serious’, (2) ‘Too Much too Young’, (3) ‘Not the Same’, and (4) ‘Time to Live’. Conclusion Being able to recognise and seek support in diagnosing malignant melanoma was challenging for young people and their families/significant other with limited physical, emotional or social support, often resulting in feelings of isolation. To overcome this lack of support and isolation, it is recommended that the care of young people and their families/significant other is seamless, and that clear links are established between services. Improvements to their journey can be made by focussing and addressing the experiences of young people and their family/significant other identified through this study

Lost in transition: Exploring how young people with cancer are transitioned from child to adult services acrossdifferent healthcare systems.

Cancer nursing care across the United Kingdom over the past 20 years has dramatically improved for children and young people with cancer (Department of Health 2007). Today around 70% of young people diagnosed with cancer survive into adulthood, albeit with long term health complications. This raises the contemporary concern of how best to transition these patients to an adult focused care regime (National Cancer Institute 2012).In the United Kingdom alone there are approximately 1,400 new cases of cancer in children under the age 15 years of age each year. In the 15-to-24 year olds, there are approximately 1,900 new cases per year (National Cancer Intelligence Network 2008). The types of cancer that affect young people are different to the cancers that strike children and adults (Children Cancer Leukaemia Group 2012) and these individual patients and their families require specific expert care.It is therefore crucial that care is provided in an age appropriate setting. It is estimated that many of these young people with cancer are not treated within a setting appropriate for their age (National Institute of Clinical Excellence 2005). The majority of these patients are not currently considered for entry into clinical trials (Hollis and Hooker 2009) which ultimately impacts on the overall cancer survival and recovery from the disease. The experience of young people living with or beyond a cancer diagnosis is vital to the overall understanding of the cancer journey. Once a child or young person reaches a certain age, transition of care from a child to adult service should begin in an age appropriate, planned and seamless way (Royal College Nursing 2004). McCann (2012) found in a recent study that all health professionals, young people and their families need to be too ready for transition. In order to achieve this appropriate planning and preparation for the transition needs to be put in place.This report and associated review of the literature reveals the wide discrepancy in the transition models currently being implemented for young people and their families with cancer. Some are transitioned to adult services at a well-defined and clearly communicated juncture, such as age or on completion of their treatment regime. Many others remain within the children’s oncology/haematology specialist service late into adulthood with no clear model of transition (Department of Health 2007). In addition it is recommended that all young people are given the opportunity to decide when and where they would prefer to be treated (Royal College of Physicians of Edinburgh 2008, National Cancer Action Team 2012). For example the National Institute of Clinical Excellence (2005) suggests that young adults aged 19 years and above may make an informed choice on their place of care.The development and introduction of appropriate and effective transition models is now emerging as one of the most important factors within the individual patients overall cancer journey experience. This report compares the various transition models currently being utilised across the United Kingdom (Scotland, Northern Ireland, England and Wales), Finland (Lahti) and the United States America (North Carolina).The specific objectives of this report are to: Develop an understanding of national and international transitional practices. Establish if patients are given a genuine choice regarding their place of care. Identify how nurses (undergraduate and postgraduate) are prepared to care for young people with cancer as they transition from child to adult services. Strengthen links between the Children and Young People’s Cancer Community Nursing education group and international partners. Create a clinical / academic writing team to further explore this important area.This report presents a series of recommendations to further improve nursing practice and advance the care delivery for this patient group and their families. These recommendations will be presented at a European or International conference, and published through a high impact academic journal and a peer review journal during 2013. It is also the author’s intention to take forward a number of the recommendations made in this report through applying for further research grants early in 2013

Malignant Melanoma: How Do We Meet the Needs of Young People and Their Families?

No abstract available

Healthcare Professional and Service User Perspectives on Formal Educational Programmes for Children and Young People with Cancer in the UK

Caring for children and young people with cancer requires specific knowledge, skills and experience to deliver the complex care regimes both within the hospital or community environment. This study explored the educational gaps in caring for children and young people with cancer. To address this, a mixed methodology approach was adopted in two phases. Phase one was a questionnaire circulated to healthcare professional members (n = 850) of the Children’s Cancer and Leukaemia Group and Managed Service Network, Scotland. Response rate (n = 121) (14%) was achieved. In phase two of the study, a focus groups (n = 4) was conducted with young people in Scotland through the Managed Service Network. This was to gain a critical understanding from service user perspective and what they deemed as important to their overall care delivery. Phase one: healthcare professional results reported that 76% (n = 93) were aware of education; 69% (n = 84) found that knowledge supported practice development, but only 45% (n = 55) finding current education provision useful. The top education topics identified to be lacking in educational availability were communication, psychological support, dealing with young people, supportive care, diagnosis and treatment and challenges to learning. Several participants 64% (n = 78) suggested that funding and time was a barrier, and that there was a lack of provision. Phase two: Findings from the focus group (n = 4) thematic analysis identified five key themes. Service users expected professionals to be knowledgeable and trained, but when talking about experiencing care, gave insights into the gaps in their care. Findings suggest that formal cancer education is required

Healthcare Professional and Service User Perspectives on Formal Educational Programmes for Children and Young People with Cancer in the UK

Caring for children and young people with cancer requires specific knowledge, skills and experience to deliver the complex care regimes both within the hospital or community environment. This study explored the educational gaps in caring for children and young people with cancer. To address this, a mixed methodology approach was adopted in two phases. Phase one was a questionnaire circulated to healthcare professional members (n = 850) of the Children’s Cancer and Leukaemia Group and Managed Service Network, Scotland. Response rate (n = 121) (14%) was achieved. In phase two of the study, a focus groups (n = 4) was conducted with young people in Scotland through the Managed Service Network. This was to gain a critical understanding from service user perspective and what they deemed as important to their overall care delivery. Phase one: healthcare professional results reported that 76% (n = 93) were aware of education; 69% (n = 84) found that knowledge supported practice development, but only 45% (n = 55) finding current education provision useful. The top education topics identified to be lacking in educational availability were communication, psychological support, dealing with young people, supportive care, diagnosis and treatment and challenges to learning. Several participants 64% (n = 78) suggested that funding and time was a barrier, and that there was a lack of provision. Phase two: Findings from the focus group (n = 4) thematic analysis identified five key themes. Service users expected professionals to be knowledgeable and trained, but when talking about experiencing care, gave insights into the gaps in their care. Findings suggest that formal cancer education is required

Determinants of psychological distress in teenagers and young adults affected by cancer: a systematic review and meta-analysis. [Protocol]

The objective of this systematic review is to look at the key determinants of psychological distress in teenagers and young adults (TYAs) affected by cancer. Sources to be searched are MEDLINE, PsycINFO, CINAHL, the Cochrane Database of Systematic Reviews, EMBASE and PsycARTICLES. Any quantitative studies that assess the association among different factors (including individual and contextual types of factors commonly explored in the available literature in the subject area) with psychological distress will be included e.g. cross-sectional and longitudinal studies. Participants will be teenagers and young adults (TYA) a) aged 13-24 years at cancer diagnosis (in line with Teenage Cancer Trust’s definition b) at any stage of cancer, c) diagnosed with anxiety, depression, or/and PTSD or reported depressive/anxiety/PTSD symptomatology (on a validated self-report or clinician measure)

Life Interrupted: Experiences of adolescents, young adults and their family living with malignant melanoma

AimMelanoma is one of the most common human malignancies; yet, it is often thought of as a disease of adulthood rather than one affecting adolescents and young adults. This study sought to understand the experiences of adolescents, young adults and their family living with malignant melanoma.DesignA qualitative study using Interpretive Phenomenological Analysis, through a multi-perspective design.MethodsData collection was conducted between January and August 2018 in each participant's Primary Care Centre when they were attending for an outpatient appointment. Each young person and a nominated family member were interviewed (n = 10) either individually (n = 4) or as a dyad (n = 6) according to their personal choice. In-depth semi-structured interviews were conducted and audio-recorded with the participant's consent. Interview data were transcribed verbatim and analysed.FindingsThe metanarrative ‘Life Interrupted’ was the core conceptual thread woven throughout the findings. It represents the interconnections and interrelationships between the adolescent or young adult and their family. Being able to recognize the disease and seek support was challenging with often limited physical, emotional or social support resulting in feelings of fear and isolation. Four super-ordinate themes were identified: (a) ‘Is it Serious’, (b) ‘Too Much too Young’, (c) ‘Not the Same’ and (d) ‘Time to Live’.ConclusionsWith the rising incidence of MM in the adolescents and young adults population globally, there are demands to improve healthcare professionals and nurse's knowledge and understanding of MM. As young people with MM experience their journey outside specialist cancer services, the care delivery for this patient group and their families require stronger links between services.ImpactThis study will inform the improvement of care delivery for MM in order that this patient group is provided with the same access to service delivery as other adolescents and young adults with cancer

International collaboration: developing an international nursing module through the use of Wiki technology

The internationalisation of education gathered momentum with the Bologna process initiated in 1998, which focused upon lifelong learning, involvement of students into HEI’s (Higher Education Institutions), and easing mobility of students for job placements by 2010 (Davies, 2008). This goal for globalization continues to be unmet due to obstacles related to migration and language. Other barriers exist with cultural, social, and ethical factors. Educators are seeking creative virtual learning environments (VLE) to augment the learning experience for all students to help meet these goals by 2020. With shrinking of the world economies and technological revolutions of the past ten years, educators desire innovative methodologies enhancing students’ international experiences. Traditionally, nursing students were encouraged to engage in overseas clinical placements to gain cultural and diverse experiences. Due to increased costs of overseas travel, these types of culturally enriching experiences are waning. With increased global migration, students must be prepared to become active world citizens in the care for their patients. Regardless of background of the student, educators want technologies to enable culturally authentic experiences that simulate the previous era. The authors of this paper sought to utilize Wiki technology to broaden the global learning experiences for students from three higher education institutions (HEIs)

Widening Access; Developing an eLearning Resource for Health and Social Care Professionals Caring for Children and Young People with Cancer

Cancer is a key priority worldwide, and caring for children and young people with cancer requires a range of specific knowledge, skills and experience in order to deliver the complex care regimes both within the hospital or community environment. The aim of this paper is to disseminate work undertaken to design and develop pedagogical practice and innovation through an eLearning resource for health care professionals caring for children and young people with cancer across the globe. The work undertaken evaluated an existing cancer course (which has been withdrawn) that was developed and delivered through the Paediatric Oncology Nurses Forum, Royal College Nursing (Nurse Educators) and Warwick University. The evaluation consisted of 26 open and closed questions relating to the previous resource and was circulated to all health and social care professionals involved directly within specialist oncology services through the Children’s Cancer and Leukaemia Group. Questionnaires were sent out to a convenience sample of 773 health care professionals and the response rate was 14%. The findings identified that the course was predominantly accessed by nurses, but other health care professionals also found it useful. Participants highlighted several areas where they believed content could be developed or was lacking. This included areas such as palliative and end of life care, nutrition, sepsis and teenagers and young people. This feedback was then used to develop a site dedicated to the care of children and young people with cancer