"Se meg" : Sykepleiere i møte med smertelindring til premature barn

Formål: Studiets hensikt er å undersøke hva sykepleiere opplever er utfordringer når det gjelder smertelindring til premature barn. Ved å få mer kunnskap om hva de opplever som problematisk, kan det synliggjøres hvor det kan settes inn tiltak for å bedre smertelindringen. Teoretisk forankring: Et etisk-filosofisk perspektiv er tilnærmingen i den teoretiske forankringen. Kari Martinsens omsorgsfilosofi er benyttet og barnets sårbarhet ses i lys av Levinas tilnærming til den Annens humanisme. Metode: Studien er utforskende og beskrivende. Kvalitativ tilnærming med intervju av åtte sykepleiere på to neonatalavdelinger er gjennomført med semistrukturert guide og bruk av lydbånd. Kvales analysemetode er benyttet. Situasjonsanalyse av narrativ ble utført. Resultater: Sykepleirne ser at barnet har smerter, mange gjøremål og konkurrerende stimuli kjemper om sykepleiernes oppmerksomhet. Sterke beskrivelser som overgrep og tortur benyttes i forhold til hva barna utsettes for når smertelindringen ikke er god nok. Det kreves kunnskaper og ferdigheter av ulik karakter fra sykepleiernes side for å ha tilstrekkelig oversikt over barnets tilstand. Sykepleiere og leger beskrives å jobbe på siden av hverandre istedenfor å samarbeide. Det er en påkjenning for sykepleierne å jobbe i et miljø der avdelingskultur, krav og holdninger går på tvers av egne omsorgsverdier. Noen sykepleiere har hatt tanker om å slutte, men vissheten om at deres arbeid for å bedre smertelindringen bidrar til økt kunnskap og bedret smertelindring, har medført at de fortsetter. Konklusjon: Ulik kompetanse og ulike personligheter ser ut til å påvirke samarbeidet mellom helsepersonell og påvirker kvaliteten på barnas smertebehandling. Mulighet og rom for etisk refleksjon i det daglige mangler og er et savn hos sykepleierne. Det menneskelige og medmenneskelige aspektet innenfor nyfødt intensivavdelingene står i fare for å forsvinne på bekostning av teknikk og effektivitet. Nøkkelord: smerte, prematur, sykepleier, etikk, moralsk stress, narrativ. ENGELSK: Purpose: The purpose of this study is to explore which experiences nurses find challenging regarding pain relief to premature babies. By getting more information about what nurses experience as problematic, areas for improvement of pain relief treatment can be pointed out. Theoretical foundation: The theoretical foundation is an ethic-philosophic approach. Kari Martinsens philosophy of care is used and the children vulnerability is interpreted by Levinas approach to Humanism of the Other. Method: This study is investigative and descriptive. It uses a qualitative approach with interviews of eight nurses at two different neonatal intensive care units. The interviews were carried out with semi-structured guide and were recorded. The analysis used is based on Kvales method. Situation analysis of the stories has been carried out. Results: Nurses recognize the child’s pain but a tight schedule and competing stimuli are fighting for the nurses’ attention. Strong characteristics like harassment and torture are used to describe the children’s situation when pain relief is insufficient. Knowledge and skills of different kinds are necessary from the nurses’ side in order to understand the child’s condition. The cooperation between nurses and doctors is described as poor. It is a strain for the nurses to work in an environment where the culture at the working place, requirements and attitudes are conflicting with their own values of care. Some nurses have had thoughts about quitting, but the awareness that their work contributes to increased knowledge and improved pain relief, made them reconsider their decision. Conclusion: Different skills and different personalities seem to affect the cooperation between health care workers and affect the quality of the children’s pain treatment. Possibilities and arenas for reflection about ethical values lack in the day to day work, and are missed by the nurses. Technology and effectiveness are threatening the human aspect within neontatal intensive care units. Key words: pain, premature, nurse, ethics, moral stress, narrativ

Pain and pressure pain thresholds in adolescents with chronic fatigue syndrome and healthy controls: a cross-sectional study

Objectives: Although pain is a significant symptom in chronic fatigue syndrome (CFS), pain is poorly understood in adolescents with CFS. The aim of this study was to explore pain distribution and prevalence, pain intensity and its functional interference in everyday life, as well as pressure pain thresholds (PPT) in adolescents with CFS and compare this with a control group of healthy adolescents (HC). Methods: This is a case–control, cross-sectional study on pain including 120 adolescents with CFS and 39 HCs, aged 12–18 years. We measured pain frequency, pain severity and pain interference using self-reporting questionnaires. PPT was measured using pressure algometry. Data were collected from March 2010 until October 2012 as part of the Norwegian Study of Chronic Fatigue Syndrome in Adolescents: Pathophysiology and Intervention Trial. Results: Adolescents with CFS had significantly lower PPTs compared with HCs (p<0.001). The Pain Severity Score and the Pain Interference Score were significantly higher in adolescents with CFS compared with HCs (p<0.001). Almost all adolescents with CFS experienced headache, abdominal pain and/or pain in muscles and joints. Moreover, in all sites, the pain intensity levels were significantly higher than in HCs (p<0.001). Conclusions: We found a higher prevalence of severe pain among adolescents with CFS and lowered pain thresholds compared with HCs. The mechanisms, however, are still obscure. Large longitudinal population surveys are warranted measuring pain thresholds prior to the onset of CFS

Making room for life and death at the same time – a qualitative study of health and social care professionals’ understanding and use of the concept of paediatric palliative care

This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativeco mmons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.Background: The concept of pediatric palliative care (PPC) is applied diferently within the healthcare system and among healthcare professionals (HCPs). To our knowledge, no studies have investigated how multidisciplinary HCPs understand the concept of PPC and the aim of this study was to explore the concept of PPC from the view of HCP in a paediatric setting. Methods: We employed an explorative and descriptive design and conducted four focus groups with a total of 21 HCPs working in hospitals with children in palliative care. The data were analysed using qualitative content analysis. Results: The data analysis of the concept of pediatric palliative care resulted in two themes. The frst theme “A fright ening concept that evokes negative emotions,” contains categories to explore the meaning, named “An unfamiliar and not meaningful concept, “A concept still associated with death and dying” and “Healthcare professionals’ responsibility for introducing and using the concept and, to obtain a common meaning.” The second theme was named “A broad and complementary concept,” containing the categories “Total care for the child and the family,” “Making room for life and death at the same time” and “The meaning of alleviation and palliative care.” Conclusions: The included HCPs refected diferently around PPC but most of them highlighted quality of life, total care for the child and the child’s family and interdisciplinary collaboration as core elements. Attention to and knowl edge among HCPs might change the perception about PPC from a frightening concept to one that is accepted by all parties, implemented in practice and used as intended. However, our study reveals that there is still some work to do before PPC is understood and accepted by all those involved.publishedVersio

Health Care Professionals’ Experiences and Perspectives on Using Telehealth for Home-based Palliative Care: Scoping Review

Background: Telehealth seems feasible for use in home-based palliative care (HBPC). It may improve access to health care professionals (HCPs) at patients’ homes, reduce hospital admissions, enhance patients’ feelings of security and safety, and increase the time spent at home for patients in HBPC. HBPC requires the involvement of various HCPs such as nurses, physicians, allied health professionals, dietitians, psychologists, religious counselors, and social workers. Acceptance of the use of technology among HCPs is essential for the successful delivery of telehealth in practice. No scoping review has mapped the experiences and perspectives of HCPs regarding the use of telehealth in HBPC. Objective: The aim of this review was to systematically map published studies on HCPs’ experiences and perspectives on the use of telehealth in HBPC. Methods: A scoping review was conducted using the methodology of Arksey and O’Malley. The review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews. A systematic search was performed in AMED, CINAHL, Embase, MEDLINE, PsycINFO, and Web of Science for studies published in peer-reviewed journals between January 1, 2000, and August 23, 2022. The reference lists of the included papers were hand searched to identify additional studies. The inclusion criteria were (1) studies using qualitative, quantitative, or mixed methods; (2) studies including HCPs using telehealth with patients in HBPC; (3) studies on HCPs’ experiences and perspectives on the use of telehealth in HBPC; (4) studies published between January 1, 2000, and August 23, 2022; and (5) studies published in English, Portuguese, Norwegian, Danish, Swedish, or Spanish. Pairs of authors independently included studies and extracted data. The first 2 stages of thematic synthesis were used to thematically organize the data. Results: This scoping review included 29 papers from 28 studies. Four descriptive themes were identified: (1) easy to use but technological issues undermine confidence, (2) adds value but personal and organizational barriers challenge adoption, (3) potential to provide useful and meaningful patient-reported data, and (4) mutual trust as a prerequisite for interpersonal relationships. Conclusions: Telehealth in HBPC seems to be easy to use and may improve the coordination of care, time efficiency, clinical assessments, and help build and enhance personal and professional relationships. However, the introduction of technology in HBPC is complex, as it may not align well with the overall aim of palliative care from HCPs’ point of view. Further, changes in practice and requirements for HCPs may reduce motivation for the use of telehealth in HBPC. HCPs consider themselves to have central roles in implementing telehealth, and a lack of acceptance and motivation is a key barrier to telehealth adoption. Policy makers and telehealth developers should be aware of this potential barrier when developing or implementing new technology for use in HBPC.publishedVersio

Genetic variation in catechol-O-methyltransferase modifies effects of clonidine treatment in chronic fatigue syndrome

Clonidine, an α2-adrenergic receptor agonist, decreases circulating norepinephrine and epinephrine, attenuating sympathetic activity. Although catechol-O-methyltransferase (COMT) metabolizes catecholamines, main effectors of sympathetic function, COMT genetic variation effects on clonidine treatment are unknown. Chronic fatigue syndrome (CFS) is hypothesized to result in part from dysregulated sympathetic function. A candidate gene analysis of COMT rs4680 effects on clinical outcomes in the Norwegian Study of Chronic Fatigue Syndrome in Adolescents: Pathophysiology and Intervention Trial (NorCAPITAL), a randomized double-blinded clonidine versus placebo trial, was conducted (N=104). Patients homozygous for rs4680 high-activity allele randomized to clonidine took 2,500 fewer steps compared to placebo (pinteraction=0.04). There were no differences between clonidine and placebo amongst patients with COMT low-activity alleles. Similar gene-drug interactions were observed for sleep (pint=0.003) and quality of life (pint=0.018). Detrimental effects of clonidine in the subset of CFS patients homozygous for COMT high-activity allele warrant investigation of potential clonidine-COMT interaction effects in other conditions

Pain and health related quality of life in adolescents with chronic fatigue syndrome. A mixed method study

Background: Chronic fatigue syndrome (CFS) is a disabling disease that occurs among individuals across cultures and ages. Despite ample research, chronic fatigue syndrome is still poorly understood, and the ongoing debate on CFS reflects the intensive controversies linked to the disease. Patients often experience misconceptions and prejudices which constitute an extra burden. Research on adolescents with CFS is limited, especially from the patients’ perspective. Adolescents with CFS have reduced school attendance, spend less time with friends, and research indicates that living with CFS affects the adolescents quality of life negatively. Despite this, there is still limited research on HRQOL in this group. Pain is a significant additional burden in patients with CFS, however, also still insufficiently studied. Aim: The overall aim of this study was to get a broader insight into, and more knowledge about being an adolescent living with CFS as the adolescents themselves experienced and narrated it. Additional aims were to explore pain and health related quality of life in adolescents with CFS and healthy adolescents, and finally to compare the two groups. Methods: One hundred and twenty adolescents with CFS and 39 healthy adolescents (12-18 years) participated in this cross-sectional, mixed method study. The participants answered self-administrated, generic questionnaires to investigate HRQOL, depressive symptoms and pain. Algometry was used to measure pressure pain thresholds. A sub-sample of 18 adolescents with CFS were interviewed in depth about their experiences of living with CFS. Results: The interviews revealed that the adolescents with CFS felt different from and forgotten by peers. They felt lonely and as outsiders, not being able to attend school and follow their peers as they moved on with their lives. Further, they felt alienated from their own bodies and different from who they used to be before they got ill. The quantitative work showed that the adolescents were severely impaired by pain compared to the control group of healthy adolescents. They also had significantly lower pressure pain thresholds compared to the healthy adolescents. One surprising discovery, however, was that despite the severity of pain, mapped by the questionnaires, physical pain was not a subject the adolescents focused during the interviews. Health related quality of life was low on all domains in the adolescents with CFS, even lower than we anticipated and far lower than in the healthy controls. Conclusions: The integration of the qualitative and quantitative work in this study has provided more knowledge and a broader insight into the life of adolescents with CFS. Their self-understanding and development of identity are challenged when the illness make their body unfamiliar and narrows their ability to participate in “real” life. Experience of belonging might prevent mental health problems and possibly improve their health related quality of life. Despite the serious impact of the self-reported physical pain, the pain focus was different from what we expected. For adolescents with CFS, difficult feelings and existential thoughts might be equally, or even more painful than the physically measured pain. To verbalize difficulties related to their illness might be challenging and words might as well be insufficient. Awareness towards body language and other modes of expressions should be prioritized even though it might be challenging for health care professionals to prioritize time to become familiar with the individual patient’s way of expressing him or herself. Storytelling could be used as a strength and resource in assessment and treatment of adolescents with CFS

Home-Based Pediatric Palliative Care and Electronic Health: Systematic Mixed Methods Review

Background: Children and families in pediatric palliative care depend on close contact with health care personnel, and electronic health (eHealth) is suggested to support care at home by facilitating their remote interactions. Objective: This study aimed to identify and review the use of eHealth to communicate and support home-based pediatric palliative care and appraise the methodological quality of the published research. Methods: We conducted a convergent, systematic mixed methods review and searched Medical Literature Analysis and Retrieval System Online (Medline), EMBASE, PsycINFO, Cochrane Library, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Web of Science, and Scopus for eligible papers. Studies evaluating 2-way communication technology for palliative care for children aged ≤18 years and applying quantitative, qualitative, or mixed methods from 2012 to 2018 were eligible for inclusion. Quantitative and qualitative studies were equally valued during the search, screening, extraction, and analysis. Quantitative data were transformed into qualitative data and analyzed using a thematic analysis. Overall, 2 independent researchers methodologically appraised all included studies. Results: We identified 1277 citations. Only 7 papers were eligible for review. Evaluating eHealth interventions in pediatric palliative care poses specific methodological and ethical challenges. eHealth to facilitate remote pediatric palliative care was acknowledged both as an intrusion and as a support at home. Reluctance toward eHealth was mainly identified among professionals. Conclusions: The strengths of the conclusions are limited by the studies’ methodological challenges. Despite the limitless possibilities held by new technologies, research on eHealth in home-based pediatric palliative care is scarce. The affected children and families appeared to hold positive attitudes toward eHealth, although their views were less apparent compared with those of the professionals

Orthostatic responses in adolescent chronic fatigue syndrome: Contributions from expectancies as well as gravity

Background: Orthostatic intolerance is common in chronic fatigue syndrome (CFS), and several studies have documented an abnormal sympathetic predominance in the autonomic cardiovascular response to gravitational stimuli. The aim of this study was to explore whether the expectancies towards standing are contributors to autonomic responses in addition to the gravitational stimulus itself. Methods: A total of 30 CFS patients (12–18 years of age) and 39 healthy controls underwent 20° head-up tilt test and a motor imagery protocol of standing upright. Beat-to-beat cardiovascular variables were recorded. Results: At supine rest, CFS patients had significantly higher heart rate, diastolic blood pressure, and mean arterial blood pressure, and lower stroke index and heart rate variability (HRV) indices. The response to 20° head-up tilt was identical in the two groups. The response to imaginary upright position was characterized by a stronger increase of HRV indices of sympathetic predominance (power in the low-frequency range as well as the ratio low-frequency: high-frequency power) among CFS patients. Conclusions: These results suggest that in CFS patients expectancies towards orthostatic challenge might be additional determinants of autonomic cardiovascular modulation along with the gravitational stimulus per se