Walking a tightrope - as a next-of-kin to an adolescent or young adult with cancer facing eating difficulties.

PURPOSE: Eating difficulties cause reduced food intake and poor quality of life among adolescents and young adults (AYAs) with cancer. Therefore, next-of-kin eating support is crucial. The purpose of this study was to explore the lived experiences of being close to AYAs with cancer in the context of eating when they are at home between high-emetogenic chemotherapy (HEC) sessions. METHOD: In-depth interviews were conducted with 12 next-of-kin to AYAs (15-29 years old) with oncological or haematological diseases, treated with HEC. Van Manen's hermeneutic-phenomenological approach guided the design. RESULTS: The essential meaning of the next-of-kin experiences is reflected in the overarching theme "Utilizing meals as an action-opportunity" consisting of two subthemes: 'Being on constant alert' and "Walking a tightrope to maintain usual everyday life." CONCLUSIONS: Findings revealed that utilizing meals as an action-opportunity towards AYAs' food intake involved existential feelings including fear of losing their loved ones. Next-of-kin experienced that providing support through and with food was their only avenue of action. However, this sparked feelings of frustration and powerlessness.

Struggling to Eat to Survive Cancer-Lived Experiences of Eating Among Adolescents and Young Adults Undergoing High-Emetogenic Chemotherapy.

Purpose: The purpose of this study was to provide in-depth understanding of adolescents' and young adults' (AYAs') lived experiences of eating when they are at home between high-emetogenic chemotherapy sessions. Methods: The study was guided by van Manen's hermeneutic-phenomenological methodology. Eligible AYAs were 15-29 years old, diagnosed with either oncological or hematological cancer, treated with high-emetogenic chemotherapy, and Danish speaking. AYAs were recruited from three university hospital departments. Data were collected using semi-structured in-depth interviews. Results: Thirteen AYAs, aged 17-29 years, participated in the interviews via telephone or face-to-face in their homes. The essential meaning of the phenomenon of eating can be characterized by the overarching theme "Struggling to eat to survive" and unfolded through the following three themes: "Cooperating with a deceiving body", "Capturing moments of eating opportunities", and "Being loved and cared for at home". Conclusions: Struggling to eat was essential for survival and a fundamental existential challenge that required reflection and consciousness. AYAs experienced their deceiving bodies as a major concern, which challenged their ability to eat and forced them to develop strategies to capture moments of eating opportunities. AYAs kept hold of doing "something" themselves to maintain the slightest control of their own lives and thereby assist clinical outcomes and cure. However, AYAs had to struggle with food and start viewing food as a friend, not an enemy.

Love, joy and necessity - A phenomenological study of food and meals in adolescents and young adults with cancer receiving high-emetogenic chemotherapy.

PURPOSE: This study explored how the phenomenon of meals appeared in the interrelationship between adolescents and young adults (AYAs) receiving high-emetogenic chemotherapy, their next of kin and health professionals in the clinical setting. METHOD: Data were collected by 140 h of participant observation conducted to gain insights into the nature of how meals appeared in the interrelationship between 12 AYAs (age 15-29 years), their next-of-kin and health professionals. The AYAs were patients with oncological and haematological diseases recruited from three university hospital departments. Data analysis was guided by van Manen's hermeneutic-phenomenological approach. RESULTS: The essential meaning of the phenomenon may be characterized by the overarching theme; 'Seeking the joy of meals in the shadow of treatment' and the following three themes: 'Meals as a necessary evil' (AYAs); 'Meals as a matter of love' (next-of-kin); and 'Meals in the shadow of medical treatment' (health professionals). CONCLUSIONS: Meals is a multi-facetted and complex phenomenon that has different meanings to AYAs, next-of-kin and health professionals. To the AYAs, meals emerged as a necessary evil in connection with which urges to eat occurred as glimpses of desire. Prominent feelings of powerlessness and food as love were highlighted by the next-of-kin, whereas food and meals appeared secondary to treatment for health professionals, reflecting the traditional biomedical paradigm. The findings revealed that adopting a holistic approach to AYAs concerning meals can have the potential to increase their food intake.

Pathways to Diagnosis for Teenagers and Young Adults with Cancer in European Nations: A Pilot Study.

PURPOSE: The diagnosis of cancer is often prolonged in teenagers and young adults (TYA). There may be lessons in improving this from international comparisons. However, international studies are complex and so we conducted a pilot study to examine the key barriers to large-scale research in this field. METHODS: We provided translated questionnaires covering key aspects of presentation and clinical management within 60 days of a confirmed cancer diagnosis, to patients 13-29 years of age inclusive, to their primary care physicians and to the cancer specialists managing their cancer. We conducted descriptive analyses of the data and also the process of study implementation. RESULTS: For our pilot, collecting triangulated data was feasible, but varying regulatory requirements and professional willingness to contribute data were key barriers. The time of data collection and the method for collecting symptom reports were important for timely and accurate data synthesis. Patients reported more symptoms than professionals recorded. We observed substantial variation in pathways to cancer diagnosis to explore definitively in future studies. CONCLUSION: Focused research upon the mechanisms underpinning complex cancer pathways, and focusing that research upon specific cancer types within TYA may be the next key areas of study.

Like an ace up the sleeve: an interview study of nurses' experiences of the contact with relatives in a somatic emergency ward.

Research indicates that active involvement of patients' relatives generally has a positive impact on patients' hospitalisation, including patient safety. Campaigns urge relatives to ask questions in relation to nursing care and treatment to enhance patient safety and to increase involvement of both patient and relatives. The question is how nurses experience relatives who ask questions. The aim of this study was to explore how nurses experienced contact with patients' relatives during admissions to a somatic emergency ward including nurses' experience of relatives asking questions related to nursing care and treatment. Six nurses were interviewed. The participants gave written consent to participate after receiving both oral and written information about the study. Data were analysed using combined theory and data-driven qualitative content analysis. The findings formed three main themes: (i) relatives' involvement as a means to efficiency during hospitalisation, (ii) relatives welcomed on the terms of the system and (iii) tension between high ideals and frustrating realities. The six interviews answered the research questions. However, more interviews could have broadened the study and contributed with further details. The nurses experienced relatives as an important resource - 'an ace up the sleeve', while reality seemed to challenge the relationship between nurses and relatives. The study contributes to discussions before development and implementation of specific initiatives aiming at increasing involvement of relatives of patients in a somatic emergency ward.

Utilisation of academic nursing competence in Europe - A survey among members of the European Academy of Nursing Science.

BACKGROUND: In line with national and international strategies in Europe, the number of nurses with a doctoral degree has increased. The European Academy of Nursing Science (EANS) has for 18years delivered a three-year doctoral summer school for nurses. Questions have been raised in terms of how academic nurses' competencies are used and in what positions. AIM: To understand the progression of nurses' academic careers following completion of the EANS Summer School and to picture how research and academic skills of the nurses are being used for research and/or other fields in nursing. METHODS: We commenced a cross-sectional survey. Former EANS Summer School participants were invited to take part in the online survey with questions developed specifically for this study. The study conformed to the principle of good clinical research practice and was reviewed and approved by the EANS Board. RESULTS: Of 380 former participants, 308 were eligible for participating in the survey. A total of 140 (45%) responded. The respondents originated from 21 countries. Sixty-nine percent had their main position in universities or university colleges and 25% in healthcare organisations. More than 80% were involved in research, teaching and supervision, and 26% were involved in direct client/patients care while 71% reported doing postdoctoral research where descriptive research designs dominated. The research topics covered a large variety of aspects in clinical nursing, education, development and theory. CONCLUSION: The EANS Summer School is an example of an effort to improve nurses' academic competencies. The survey indicates that the competencies of academically trained nurses in Europe primarily are used in universities and educational institutions. However, a large proportion is working close to and in collaboration with clinical practice. Evidence of the legacy of having undergone the EANS Summer School includes using advanced research methods and collaboration with the international EANS network.

Virtual environments in cancer care: Pilot-testing a three-dimensional web-based platform as a tool for support in young cancer patients.

Bringing virtual environments into cancer support may offer a particular potential to engage patients and increase adherence to treatment. Developing and pilot-testing an online real-time multi-user three-dimensional platform, this study tested the use of an early prototype of the platform among adolescent and young adult cancer patients. Data were collected with an online questionnaire and using ethnographic methods of participant observation. The adolescent and young adult patients tested basic features of the virtual environment and some conducted brief in-world interactions with fellow patients during hospitalization. They had no reservations about using the technology and shared their ideas about its use. Our pilot test pointed to a number of areas of development for virtual environment applications as potential platforms for medical or behavioral interventions in cancer care. Overall, the results demonstrate the need for high user involvement in the development of such interventions and early testing of intervention designs.

Being Young and Getting Cancer: Development of a Questionnaire Reflecting the Needs and Experiences of Adolescents and Young Adults with Cancer.

PURPOSE: Cancer is the leading cause of nonaccidental deaths among adolescents and young adults (AYAs). In Denmark, there are substantial gaps in knowledge concerning how AYAs with cancer perceive their diagnostic and therapeutic trajectory and report health-related outcomes. The aim of this study is to describe the development of a questionnaire targeting AYAs with cancer aiming to evaluate treatment and survivorship from the perspective of the patients. METHODS: Identification of themes and development of items included in the questionnaire were based on a synthesis of literature and qualitative interviews with AYAs in an iterative process involving both a professional advisory panel and a youth panel. During the development process, items were validated through cognitive interviews. RESULTS: The final questionnaire contained 151 closed- and open-ended items divided into 6 sections regarding: (1) "Time before treatment," (2) "Being told about your illness," (3) "Being a young patient," (4) "Your treatment," (5) "Receiving help living with and after Cancer," and (6) "How are you feeling today?." One hundred one items were specifically developed for this study, while 50 were standardized validated indexes. The questionnaire combined different types of items such as needs, preferences, experiences, and patient-reported outcomes. CONCLUSION: This is one of few developed questionnaires aiming to evaluate the perspective of AYAs with cancer through their whole cancer trajectory. Results from the questionnaire survey are intended for quality improvements and research in AYA cancer care. The study highlights the importance of an extensive patient involvement in all steps of a questionnaire development process.

Supportive Care.

This chapter takes its point of departure in psychosocial aspects of supportive care in adolescent and young adult cancer care. The purpose is to describe some of the challenges that these young people face following a cancer diagnosis and guide healthcare professionals in how to provide care that improves the quality of life. In most hospitals and healthcare systems, adolescents and young adults are cared for and treated in settings for children or adults. Accordingly, healthcare professionals may lack attention to and knowledge about what characterize young peoples' life situation, their special needs and how to meet them. The topics we include in the chapter are the following: the youth friendly environment, social support and social network, parents, information during a psychosocial crisis event, the use of HEADSS, peer support, fertility, body image and self-esteem, after treatment and future challenges and palliative and end of life care.

[Pain audit as a tool to optimize pain treatment in hospital departments]. / Smerteaudit som et redskab til optimering af smertebehandlingen på hospitalsafdelinger.

On March 3 2011 the Department of Oncology, Aarhus University Hospital, conducted a cross-sectional pain audit. All patients present at the department were invited to complete a questionnaire about their pain experience, and their medical records were reviewed. The results indicated that patients with probable neuropathic pain reported the highest pain severity levels and experienced the greatest burden of their pain. Most patients with neuropathic pain did not receive any secondary analgesics and their general practitioners were infrequently involved in the treatment. The methods used in the present audit can be transferred to other departments for the benefit of the patients.

Caring for teenagers and young adults with cancer: a grounded theory study of network-focused nursing.

UNLABELLED: Teenagers and young adults (TYAs) are extremely vulnerable and dependant on a supportive social network when diagnosed with cancer and undergoing treatment. PURPOSE: The aim of the study was to generate a substantive theory by exploring processes and strategies of oncology nurses engaged in a nursing programme, which aims at supporting these young patients and their significant others to maintain, establish and strengthen support from their social network during the treatment period. METHOD: A grounded theory approach was used and data were generated through interviews, observations, informal conversations and documents. All nurses (7) from a Danish oncology youth unit participated. RESULTS: 'Bridging' was defined as the core concept in nurses' strategies aimed at creating a space for the TYAs' normal growth and development. By strategies of 'Tuning in', 'Framing the situation', 'Navigating towards the goal' and 'Connecting people' the nurses attempted to provide a foundation for the seriously ill TYAs to connect to their normal everyday life. CONCLUSIONS: The study complements existing knowledge of caring for TYAs with cancer, showing how oncology nurses can use their knowledge and position to facilitate involvement of the patients' social network. It contributes with a theoretical framework for clinical practice that offers insight into an unexplored area of nursing. Network-focused nursing is a complex and demanding practice that needs to be addressed by nurses, educators, researchers and health policy makers.

Network-focused nursing development of a new concept.

Network-focused nursing--a new concept--was generated in a grounded theory study of nurses, teenager and young adults with cancer and their significant others. This article explores and clarifies the concept to prevent it from being normalized and taken for granted in everyday clinical practice and in the literature, and from being limited in growth and meanings. The integrated approach by Meleis combined with the Hybrid Model by Schwartz-Barcott and Kim are used for analysis. Antecedents, attributes and consequences are identified. Network-focused nursing has potential to advance nursing science and to be implemented in other areas of patient care.

Keeping their world together--meanings and actions created through network-focused nursing in teenager and young adult cancer care.

In the transition between dependent childhood and independent young adulthood, teenagers and young adults (TYAs) are extremely vulnerable when diagnosed with cancer and while undergoing treatment. Nurses working on a youth unit for patients aged 15 to 22 years developed a nursing program that aims at supporting these young patients and their significant others to maintain, establish, and strengthen their social network during the treatment period. This article presents a grounded theory study that explored how the network-focused program was perceived by TYAs with cancer and their significant others. A theoretical account is presented on the meanings and actions that the inherent processes and interactions created. Twelve TYAs and 19 significant others participated. Data were generated through interviews, observations, and informal conversations. Embracing the program and building strength were the 2 subcategories that linked to a core concept of keeping their world together. The findings show that nurses are in a unique position to enhance and support the efforts of these young patients and their significant others in connecting with the social network that extends beyond the family and includes the wider social network.

Role of the nurse in patient education and follow-up of people receiving oral chemotherapy treatment: an international survey.

PURPOSE: The aim of this study was to explore the nursing role in education and follow-up of patients who were taking oral chemotherapy (CT) and to identify the worldwide gap in patient education about oral CT. MATERIALS AND METHODS: Multinational Association of Supportive Care in Cancer members were invited to participate in a survey on oral CT. Nurse coordinators collected data via a 16-item questionnaire. Respondents totaled 1115 oncology nurses from 15 countries. RESULTS: Findings showed that about half of subjects work in outpatient/ambulatory clinics and had given at least two or more oral CT drugs. Although 52% had some type of guidelines/protocols, 47% reported not having received any education about oral CT drugs. While 64% report being involved in patient education, 58% of subjects indicated lack of patient education materials that are specific for oral CT agents. Only 27% stated that they gave all necessary information such as when and how to take the drugs, drug safety and storage, side effects, and symptom management. Reasons for not being involved in oral CT education and follow-up included beliefs that the physician plans the oral CT and gives patients necessary instructions (34%), that nurses only see patients who receive intravenous chemotherapy (16%), that nurses have lack of knowledge about oral agents (15%), and belief that physicians are responsible for patient follow-up. The nurses suggested better education and follow-up of patients to include the written patient education materials (33%) and professional education for nurses (30%). CONCLUSIONS: Findings revealed the need for professional education for nurses to ensure comprehensive, consistent patient education and development of written materials for patients receiving oral CT treatment.