Development of a framework and the content for a psychoeducational internet-delivered intervention for women after treatment for gynaecological cancer

This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/).The number of women treated for gynecological cancer is increasing. At the same time, the duration of in-patient hospitalization has decreased, and follow-up with its primary focus on early recognition of recurrence does not meet all patients’ needs. One method of follow-up may be digital intervention. This study describes the development of a psychoeducational Internetdelivered intervention targeting women’s psychosocial needs during the follow-up period after treatment for gynecological cancer. The project consisted of three phases following the UK Medical Research Council Framework guidelines for the development of complex interventions. Phase one identified the evidence in the field, phase two identified the relevant theoretical framework, and phase three included a two-year work process including focus group interviews and think aloud interviews with users. Through the steps of literature review, theoretical framework, and an iterative development process with users and other stakeholders, a six-week program was developed. The program included psychoeducational information, multimedia, exercises, and weekly telephone follow-up with a dedicated nurse. This Internet-delivered intervention can be a novel method for addressing the gap in the provision of follow-up for women after treatment for gynecological cancer.publishedVersio

“Finding oneself after critical illness”: voices from the remission society

Under embargo until: 2021-10-07The number of people who survive critical illness is increasing. In parallel, a growing body of literature reveals a broad range of side-effects following intensive care treatment. Today, more attention is needed to improve the quality of survival. Based on nine individual stories of illness experiences given by participants in two focus groups and one individual interview, this paper elaborates how former critically ill patients craft and recraft their personal stories throughout their illness trajectory. The analysis was conducted from a phenomenological perspective and led to the meaning structure; a quest to find oneself after critical illness. In this structure, illness represented a breakdown of the participants’ lives, forcing them to develop a new understanding of themselves. Despite acute illness, they felt safe in hospital. Coming home, however, meant a constant balancing between health and illness, and being either in or out of control. To gain a deeper understanding of the participants’ narratives of survival, the meaning structure was developed from a phenomenological life world perspective, Heidegger’s concept of homelikeness and Arthur Frank’s typologies of illness narratives. In conclusion listening to and acknowledging the patients’ lived experiences of critical illness may support the patient efforts to establish the newly defined self and hence be vital for recovery. Phenomenology is one approach facilitating care tailored to the patients’ lived experience of critical illness and its aftermaths.acceptedVersio

Towards Adaptive Technology in Routine Mental Healthcare

This paper summarizes the information technology-related research findings after 5 years with the INTROducing Mental health through Adaptive Technology project. The aim was to improve mental healthcare by introducing new technologies for adaptive interventions in mental healthcare through interdisciplinary research and development. We focus on the challenges related to internet-delivered psychological treatments, emphasising artificial intelligence, human-computer interaction, and software engineering. We present the main research findings, the developed artefacts, and lessons learned from the project before outlining directions for future research. The main findings from this project are encapsulated in a reference architecture that is used for establishing an infrastructure for adaptive internet-delivered psychological treatment systems in clinical contexts. The infrastructure is developed by introducing an interdisciplinary design and development process inspired by domain-driven design, user-centred design, and the person based approach for intervention design. The process aligns the software development with the intervention design and illustrates their mutual dependencies. Finally, we present software artefacts produced within the project and discuss how they are related to the proposed reference architecture. Our results indicate that the proposed development process, the reference architecture and the produced software can be practical means of designing adaptive mental health care treatments in correspondence with the patients’ needs and preferences. In summary, we have created the initial version of an information technology infrastructure to support the development and deployment of Internet-delivered mental health interventions with inherent support for data sharing, data analysis, reusability of treatment content, and adaptation of intervention based on user needs and preferences.publishedVersio

Development of a Framework and the Content for a Psychoeducational Internet-Delivered Intervention for Women after Treatment for Gynecological Cancer

The number of women treated for gynecological cancer is increasing. At the same time, the duration of in-patient hospitalization has decreased, and follow-up with its primary focus on early recognition of recurrence does not meet all patients’ needs. One method of follow-up may be digital intervention. This study describes the development of a psychoeducational Internet-delivered intervention targeting women’s psychosocial needs during the follow-up period after treatment for gynecological cancer. The project consisted of three phases following the UK Medical Research Council Framework guidelines for the development of complex interventions. Phase one identified the evidence in the field, phase two identified the relevant theoretical framework, and phase three included a two-year work process including focus group interviews and think aloud interviews with users. Through the steps of literature review, theoretical framework, and an iterative development process with users and other stakeholders, a six-week program was developed. The program included psychoeducational information, multimedia, exercises, and weekly telephone follow-up with a dedicated nurse. This Internet-delivered intervention can be a novel method for addressing the gap in the provision of follow-up for women after treatment for gynecological cancer

Livet etter underlivskreft. Kvinner sine erfaringar fem og seks år etter behandling for kreftsjukdom

Målet med studien var å få kunnskap om og innsikt i korleis det kan opplevast for kvinner å få underlivskreft og korleis desse erfaringane verkar inn på livet i eit langtidsperspektiv. Det var i tillegg eit mål å få fram korleis kvinnene opplevde møtet og samhandlinga med helsepersonell. Studien har eit kvalitativt design beståande av 32 djupintervju med 16 kvinner i alderen 39-66 år. Alle blei intervjua to gonger i perioden 2006-2007. Første intervju blei gjort rett før kvinnene skulle inn til siste kontroll i ei femårig oppfølging og det andre blei gjort eitt år seinare. Studien er forankra i eit fenomenologisk livsverdsperspektiv og meiningsstrukturar kom fram ved hjelp av trinnvis meiningsfortetting. Sentrale teoriperspektiv er forankra i Heidegger sine eksistensialer i forhold til den spesifikt menneskelege veremåte. ”Egentlighet,” ”uegentlighet,” ”befintlighet” og ”tidlighet” var eksistensialer som kom til syne og som igjen blei konkretisert i ulike teoretiske perspektiv. Funna i studien viser at opplevinga av kreftsjukdom var ein livsendrande prosess i kvinnene sine liv. Behandlinga for underlivskreft førte til kroppslege endringar knytt til ei framandkjensle i eigen kropp. Kjensla av eit tomrom i underlivet den første tida etter behandling, heitebyger som gradvis gjekk over til ein endra kroppstemperatur, eit endra seksualliv og ein meir sårbar og uføreseieleg kropp kom til uttrykk. Prosessen med å forstå og forhalda seg til desse endringane, som òg omfatta mange intime og sårbare tema, blei skildra som ein einsam prosess. Kvinnene sakna samtalen med helsepersonell kring desse tema. Dei kroppslege endringane hadde òg eit eksistensielt aspekt som kom til uttrykk mellom anna i ein kroppsleg basert beredskap for tilbakefall eller ny kreftsjukdom. Sjølv om det var stor variasjon i kva grad kreftsjukdomen var tilbakelagt, skulle det lite til for å vekka denne uroa. Dette blei tenkt på og omtalt som ei varig endring. Samtidig hadde det òg kome noko positivt og styrkande ut av det å ha vore gjennom kreftsjukdom. Ei auka takksemd for livet i seg sjølv, å vera meir til stades og i djupare kontakt med livet, og for nokre, ein djupare kontakt med seg sjølv og andre menneske, blei framheva. Ei revitalisering av verdiar kom tydeleg til uttrykk i kvinnene sine liv, sjølv fem og seks år etter behandling for underlivskreft. Variasjonane i forhold til korleis kvinnene hadde kome seg gjennom erfaringane knytt til kreftsjukdomen, blei vidare analysert ut i tre typologiar. Studien viser at å leva som langtidsoverlevar etter underlivskreft handla om å leva vidare med både vanskelege og berikande endringar i livet. Denne kunnskapen kan helsepersonell dra nytte av i oppfølging og i vegleiing av kvinner, både i tida rundt diagnose og behandling, men òg i eit lengre perspektiv knytt til oppfølging på poliklinikken. Studien viser vidare at ein bør styrka den heilskaplege oppfølginga med vektlegging på konkret informasjon og vegleiing i forhold til kroppslege endringar, så vel som psykososiale og eksistensielle aspekt. Å skapa rom og tid for samtale, for eksempel i form av ein sjukepleiepoliklinikk der kvinnene sine forteljingar er utgangspunkt for oppfølging, blir foreslått. Ved å ta utgangspunkt i kvinnene sine forteljingar, som kan vera verdfullt i seg sjølv for den det gjeld, får sjukepleiarar kunnskap og innsikt i kva den enkelte kan trenga i ei eventuell vidare oppfølging

Lærerikt og utfordrende, et skritt videre mot målet som ferdig sykepleier. Evalueringsrapport om prosjekt overta avdeling 2. studieår ved sykepleierutdanningen ved Diakonissehjemmets høgskole

Rapporten beskriver et prosjekt hvor studenter i 2. studieår ved Diakonissehjemmets høgskole deltok ved Prosjekt overta avdeling våren 1999. Studentene skulle få prøve seg i sykepleierrollen og overta ansvar for sykepleien til pasientene i to døgn ved medisinske og kirurgiske avdelinger ved Diakonissehjemmets sykehus i Bergen

Fatigue and quality of life in women treated for various types of gynaecological cancers: a cross-sectional study

Aims and objectives To examine the prevalence of cancer-related fatigue in women treated for various types of gynaecological cancers and, for these cancers, to assess fatigue in relation to distress, health-related quality of life, demography and treatment characteristics. Background Advances in treatment of cancer have improved the likelihood of survival. Consequently, there are a growing number of patients who become survivors after cancer and who face side effects even years after treatment. One of the most frequently reported side effects across all types and stages of the disease is cancer-related fatigue. Design A descriptive cross-sectional study. Methods One hundred and twenty women treated for gynaecological cancers who were participants in an intervention study were included. Fatigue, psychological distress, health-related QoL and demographics were assessed by questionnaires. Disease and treatment characteristics were extracted from medical records. Results Cancer-related fatigue was reported in 53% of the women treated for gynaecological cancers, with a higher proportion in the group of cervical cancer, followed by ovarian cancer. Younger participants reported fatigue more frequently than older participants. When adjusting for age, the type of cancer a woman experiences was shown to have little impact on her risk of experiencing fatigue. The participants with fatigue reported higher levels of anxiety and depression than participants without fatigue. There was a relationship between fatigue and quality of life as measured by SF-36 domains. Conclusion The findings underscore the importance of screening for fatigue, patient education and symptom management. This should be included in a standard procedure during treatment and follow-up. Both somatic and psychological aspects of fatigue should be emphasised. Relevance to clinical practice The findings imply the need for health personnel to have focus on fatigue during the entire cancer trajectory of women after gynaecological cancers, as well as the need for screening, information, guidance and symptom management

The nurse`s role in palliative care: A qualitative meta-synthesis

Aims and objectives: To explore how nurses, across various health systems, describe their role in providing palliative care for patients with life-threatening illnesses. Background: Despite the fact that nurses make up the largest group of healthcare professionals, little is known about their role in palliative care, across health services. Design: A qualitative systematic review of studies. Methods: A search was made for relevant articles, published between January 2000–June 2016. Twenty-eight articles were selected and analysed using thematic synthesis. Results: The themes that emerged from the analysis were as follows: Being available, which gave nurses a pivotal role in palliative care and paved the way for Being a coordinator of care for patients and relatives, as well as for other health personnel. Doing what’s needed was to handle an enormous breadth of activities, always in a holistic framework of understanding. Being attentively present and dedicated as well as using flexible and nontraditional methods was essential in the role. Standing in demanding situations dealt with lack of time and resources, limited legitimacy, handling ethical dilemmas and being in need of support and knowledge. Conclusion: Being available as well as a coordinator characterises the nurse’s role across healthcare systems. The nurse acts as a link between different levels of health care, between different professions and between patient and family, which contribute to ensuring the quality of care to the individual patient. The review illuminates that the basic tenets of care in nursing are also fundamental to the nurse’s role in palliative care. To be able to give individually tailored palliative care to patients with life-threatening illnesses and their relatives, the nurses need all their knowledge of basic nursing. Situations challenge nurses in practical, relational and moral dimensions of care and make demands on their role in a comprehensive wa

Sexual activity and functioning in women treated for gynaecological cancers

Aims and objectives. A description and comparison of sexual activity and function in relation to various gynaecological cancer diagnoses, treatment modalities, age groups, psychological distress and health-related quality of life. Background. Various forms of gynaecological cancer have the potential to negatively influence sexual functioning, but there are few studies that describe and compare sexual activity and functioning according to diagnosis. Design. A descriptive cross-sectional study. Methods. The study includes 129 women from an intervention study. The questionnaires addressed sexuality, psychological distress, health-related quality of life and demographics. Disease and treatment characteristics were extracted from medical records. Results. Close to two-thirds of the women were sexually active. However, 54% of the sexually active women reported that they were not satisfied or little satis- fied with their sexual activity. About half of the women reported dryness in the vagina, and 41% reported pain and discomfort during penetration. There were no significant differences concerning pleasure and discomfort related to treatment modality, diagnoses or FIGO stage. Conclusion. Health personnel should make a priority of sexuality throughout a patient’s cancer treatment and in the follow-up, as sexuality is a vital part of a good life. Relevance to clinical practice. Since the patients experience relatively low satisfaction with their sexual activity and many report pain during penetration, health personnel need to be sensitive to the woman, her questions, and her needs. Of importance are also the personnel’s ability to communicate and their expertise in diagnosing and treating difficulties relating to sexuality