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“Non-palliative care” – a qualitative study of older cancer patients’ and their family members’ experiences with the health care system
Get PDFBackground
Among all cancer patients in the palliative phase, ¾ have reached the age of 65. An aging population will increase the number of people afflicted with cancer, and create challenges for patients, family members and health services. Nevertheless, limited research has focused explicitly on the experiences and needs of older cancer patients in the palliative phase and their families. Therefore, the aim of this study is to explore what older home dwelling cancer patients in the palliative phase and their close family members, as individuals and as a family, experience as important and difficult when facing the health services.
Methods
We used a qualitative descriptive design. Data was collected through family group interviews with 26 families. Each interview consisted of an older home dwelling cancer patient and one to four family members with different relationships to the patient (e.g. spouse, adult children and/or children-in-law). Data was analysed by qualitative content analysis.
Results
The main theme is “Non-palliative care” – health care services in the palliative phase not tailored to family needs. Three themes are revealed: 1) exhausting cancer follow-up, 2) a cry for family involvement, and 3) fragmented care.
Conclusion
The health services seem poorly organised for meeting the demands of palliative care for older home dwelling cancer patients in the palliative phase and their family members. Close family members would like to contribute but health services lack systems for involving them in the follow-up of the patient
Indigenous Peoples’ Self-determination and Long-term Care: Sápmi and Nunavut
Get PDFThis paper examines long-term care for the elderly as a point of departure for critically engaging with the debate on the self-determination of Indigenous peoples. By employing the case of the Arctic Indigenous peoples, the Sámi Parliament (Sámediggi) in Norway and Government of Nunavut in Canada, are utilised as central cases from which to explore the institutionalization and self-determination. The thrust of the paper calls for a critical re-investigation of the contingency of long-term care for the elderly in the context of claims of Indigenous sovereignty.
Specifically, I examine the landscape of population ageing and the organisation of care among the Sápmi and Nunavut populations, focusing on colonisation from a circumpolar perspective. The functions and practices of Sámediggi and Government of Nunavut are analysed to illustrate how self-determination is exercised and to what extent they safeguard the rights of elderly people. Sámediggi and Nunavut government as institutional arrangements that mark significant advancements in Indigenous peoples’ reclamation of power and restoration of sovereign rights are discussed. Unfortunately, the political functions that would allow self-determination and self-government to be effective continue to be limited for the Inuit in Nunavut and the Sámi in Sápmi on the Norwegian side
Reell brukermedvirkning eller bare ord? – En forskningsbasert evaluering av bruk av tjenestedesign i brukermedvirkning ved Klinikk psykisk helse og avhengighet ved Oslo universitetssykehus
Get PDFBakgrunn: Denne rapporten er en forskningsbasert evaluering av om metoden «tjenestedesign» gir reell brukermedvirkning i utviklingen av psykiske helsetjenester. Målgruppen for evalueringen er brukere og representanter for de lokale brukerrådene som har vært involvert i prosjektet «Endret skjerming. Økt verdighet og åpenhet» og «Hjelp meg, det haster» ved Klinikk psykisk helse og avhengighet ved Oslo universitetssykehus (OUS). Extrastiftelsen har gitt midler for å kunne evaluere hvordan brukerne vurderer sin deltagelse i tjenestedesignprosessen, og spesielt om metoden tjenestedesign oppleves å gi reell brukermedvirkning. I tillegg er det evaluert om deres erfaringer er sentrale i de foreslåtte endringene.
Metode: Denne forskningsbaserte evalueringen ble gjennomført med bruk av fokusgruppeintervjuer, individuelle dybdeintervjuer og telefonintervjuer. I tillegg fylte alle deltakerne ut et skjema for å hente inn bakgrunnsinformasjon, demografiske data og en kvantitativ vurdering av noen utvalgte påstander om hva deltakerne mener om brukermedvirkning.
Funn: Studiens funn er følgende tre hovedtemaer: (1) Tjenestedesign oppleves som inspirerende og skaper samarbeid, (2) Tjenestedesignerne bidro til å skape reell brukermedvirkning, og (3) Barrierer for reell brukermedvirkning i tjenestedesign som metode slik det er gjennomført i dette prosjektet. Funnene viser at deltakerne opplever at de blir tatt på alvor i tjenestedesignprosessen. Deltakerne beskrev at tjenestedesign er en prosess som legger til rette for aktiv deltakelse fra både brukere og tjenesteytere, der informasjonsdeling og reelle valg av løsninger er sentrale elementer. Funnene viser også at det er viktig at de er flere med bruker- og pårørendeerfaring med i prosjektene, slik at de ikke blir i mindretall. Dette er viktig for å skape reell brukermedvirkning.
Konklusjon: Studien viser at deltakerne var svært fornøyde med å delta i to prosjekter som har benyttet tjenestedesign som tilnærming. Funnene fremhever at tjenestedesign bidrar til aktiv deltakelse, motivasjon, inspirasjon og kreativitet i prosjektene og bidrar til reell brukermedvirkning. Brukerne har opplevd seg lyttet til og respektert, og deres innspill har hatt betydning for prosjektenes utvikling og sluttresultat. Funnene viser også at det er viktig at de er flere med bruker- og pårørendeerfaring med i prosjektene, slik at de ikke blir i mindretall. Dette er viktig for å skape reell brukermedvirkning.måsjekke
Rettighetsinngripende tiltak i kommunale botilbud – en nasjonal kartlegging
Get PDFRettsikkerheten til mange beboere i kommunale og private botiltak som kommunene har driftsavtale med ser ut til å være svak. Ansatte i kommunale tjenester står i vanskelige dilemma. De skal ivareta helse og sikkerhet samtidig som de skal ivareta beboernes rett til å bestemme over eget liv. Ikke alle situasjoner er regulert av lovverk og retningslinjer. Den nasjonale kartleggingen bekrefter også en tendens til at uheldig kultur fra spesialisthelsetjenestene med tvangsbruk overføres til kommunal praksis.måsjekke
“They take care of their own”: healthcare professionals’ constructions of Sami persons with dementia and their families’ reluctance to seek and accept help through attributions to multiple contexts
Get PDFBackground: Norwegian government white papers have stated that the Sami population is reluctant to seek help from healthcare services and has traditions of self-help and the use of local networks.
Objective: In this article we explore healthcare professionals’ discursive constructions of Sami persons with dementia and their families’ reluctance to seek and accept help from healthcare services.
Design: The article is based on an analysis of focus group interviews with healthcare professionals (n = 18) in four municipalities in Northern Norway with multiethnic populations. A narrative context analysis, which involved an examination of sequences of discourse, was employed.
Results: Reluctance to seek and accept help among Sami service users and assumptions about self-support were recurring themes in the focus groups. The reluctance was attributed to macro contexts, such as socio-historical processes and cultural norms, and to micro contexts, such as individual and interpersonal factors including the healthcare professionals’ cultural backgrounds and language competence. The healthcare professionals’ positioning as insiders or outsiders (Sami or non-Sami) affected their attributions.
Conclusions: Local healthcare professionals are at the front line for providing and assessing service users’ needs for healthcare services. Consequently, their perceptions of service users’ needs are pivotal for achieving equity in healthcare. The established opinion that Sami “take care of their own” and are reluctant to seek and accept help may lead to omissions or neglect. Healthcare professionals’ awareness about how present encounters in healthcare settings are framed and shaped by the service users’ previous and prevailing experiences of marginalisation and subordination is crucial to avoid omissions or neglect resulting from assumptions about cultural preferences. Discursively shaped boundaries and differences between groups may create the impression that the distance between the groups is too wide to traverse, which in turn may lead to further marginalisation of service users in healthcare encounters
Velferdsteknologi i omsorgstjenesten
Get PDFDen norske befolkningen blir eldre og det er utfordrende å rekruttere nok omsorgspersonell. En konsekvens av dette er færre hjelpende hender og begrensede ressurser i nær fremtid. Velferdsteknologi blir presentert som en mulig løsning på deler av utfordringen.
Målet med velferdsteknologiske bidrag er å understøtte og forsterke brukerens; trygghet, sikkerhet, sosiale deltakelse, fysiske aktivitet, daglige gjøremål, mobilitet og livskvalitet. Myndighetene, støttet av resultater fra forsknings- og utviklingsarbeider, er en sentral premissleverandør for innføring av velferdsteknologi Norge.
I Norge har direktoratet for e-helse fått i oppgave å etablere standarder og forvalte og realisere digitale, nasjonale e-helseløsninger.
Det er også etablert et nasjonalt velferdsteknologiprogram , for å stimulere kommunene til å ta i bruk velferdsteknologi. Dette har ledet ut i en rekke prosjekter med og uten følgeforskning. I tillegg har kommunene selv rapportert hvilke gevinster de opplever ved implementering av velferdsteknologi. Disse er beskrevet i Andre gevinstrealiseringsrapport med anbefalinger.
Utenfor velferdsteknologiprogrammet er det i dag mulig å identifisere om lag 260 ulike prosjekter som fokuserer på implementering av velferdsteknologi i en aller annen form.
I denne beskrivelsen ønsker vi å presentere de forhold som har betydning for å kunne orientere seg i det velferdsteknologiske landskapet
Markerless motion capture systems as training device in neurological rehabilitation: a systematic review of their use, application, target population and efficacy
Get PDFBackground
Client-centred task-oriented training is important in neurological rehabilitation but is time consuming and costly in clinical practice. The use of technology, especially motion capture systems (MCS) which are low cost and easy to apply in clinical practice, may be used to support this kind of training, but knowledge and evidence of their use for training is scarce. The present review aims to investigate 1) which motion capture systems are used as training devices in neurological rehabilitation, 2) how they are applied, 3) in which target population, 4) what the content of the training and 5) efficacy of training with MCS is.
Methods
A computerised systematic literature review was conducted in four databases (PubMed, Cinahl, Cochrane Database and IEEE). The following MeSH terms and key words were used: Motion, Movement, Detection, Capture, Kinect, Rehabilitation, Nervous System Diseases, Multiple Sclerosis, Stroke, Spinal Cord, Parkinson Disease, Cerebral Palsy and Traumatic Brain Injury. The Van Tulder’s Quality assessment was used to score the methodological quality of the selected studies. The descriptive analysis is reported by MCS, target population, training parameters and training efficacy.
Results
Eighteen studies were selected (mean Van Tulder score = 8.06 ± 3.67). Based on methodological quality, six studies were selected for analysis of training efficacy. Most commonly used MCS was Microsoft Kinect, training was mostly conducted in upper limb stroke rehabilitation. Training programs varied in intensity, frequency and content. None of the studies reported an individualised training program based on client-centred approach.
Conclusion
Motion capture systems are training devices with potential in neurological rehabilitation to increase the motivation during training and may assist improvement on one or more International Classification of Functioning, Disability and Health (ICF) levels. Although client-centred task-oriented training is important in neurological rehabilitation, the client-centred approach was not included. Future technological developments should take up the challenge to combine MCS with the principles of a client-centred task-oriented approach and prove efficacy using randomised controlled trials with long-term follow-up
A home program of strength training, movement strategy training and education did not prevent falls in people with Parkinson’s disease: a randomised trial
Get PDFQuestions
For people with idiopathic Parkinson’s disease, does a 6-week, comprehensive, home exercise program reduce falls and disability and improve health-related quality of life? Is the program cost-effective?
Design
Randomised, controlled trial with concealed allocation and assessor blinding.
Participants
One hundred and thirty-three community-dwelling adults with Parkinson’s disease.
Intervention
The experimental group completed a 6-week home program comprising progressive resistance strength training, movement strategy training and falls education. The control group completed 6 weeks of non-specific life skills training. Participants in both groups received weekly therapist-guided sessions for 6 consecutive weeks and a weekly self-directed home program.
Outcome measures
The primary outcome was the rate of falls, documented for the 12-month period immediately after therapy. Secondary outcomes were disability and health-related quality of life, assessed before and after intervention and at a 12-month follow-up.
Results
A total of 2255 falls were reported by the 12-month follow-up. The proportion of fallers in the experimental and control groups was 61 and 72%, respectively, which was not statistically significantly different (RR = 0.85, 95% CI 0.66 to 1.09). There was no significant between-group difference in the rate of falls (incidence rate ratio = 1.58, 95% CI 0.73 to 3.43). A survival analysis of participant time to first fall did not show a significant between-group difference (log-rank test χ2 = 0.79, p = 0.37). No significant between-group differences occurred for mobility, disability or quality of life. The mean cost of delivering the experimental intervention was AUD1596.
Conclusion
A home program of strength and movement strategy training and falls education does not prevent falls when applied at the dose used in this study. Arguably, the dosage of therapy was insufficient. Future trials need to explore further therapy content, repetitions and duration, in order to optimise outcomes and cost-effectiveness
Andre gevinstrealiseringsrapport med anbefalinger. Nasjonalt velferdsteknologiprogram
Get PDFStortinget etablerte gjennom RNB 2013 (Helse- og omsorgsdepartementet, 2013) «Nasjonalt program for utvikling og implementering av velferdsteknolog 2014-2020». Den nasjonale satsingen har som hovedmålsetning å møte kommunenes informasjons- og kunnskapsbehov for å tilrettelegge for bred bruk av velferdsteknologiske løsninger.
Det nasjonale programmet presenterer her den andre gevinstrapporten fra utprøvinger av trygghets- og mestringsteknologi som er foretatt av utviklingskommunene. Kommunene har høstet mange nye erfaringer i året som har gått og resultatene som fremkommer er entydige; velferdsteknologi gir betydelig gevinst. Resultatene gir grunnlag for anbefalinger om nye teknologiområder som du kan lese om i denne rapporten, i tillegg til flere erfaringer fra tidligere anbefalte løsninger.
Utviklingskommunene i det nasjonale programmet har lagt ned et imponerende arbeid: Fra det første tilskuddet ble gitt i 2013 og frem til i dag har kommunene tatt kvantesprang i prosjektstyring, tjenesteutvikling, evaluerings- og dokumentasjonsarbeid, bestillerkompetanse og generell kunnskap om velferdsteknologi. Disse kommunene besitter nå en verdifull kompetanse om muligheter og nytteverdi for sluttbruker, pårørende og tjenesten som helhet. Denne kunnskapen vil gjøre veien lettere for andre kommuner som vil i gang med velferdsteknologi, når stafettpinnen nå går videre.
Helsesektoren er i konstant endring - både behov og muligheter utvikler seg.Kommuner som ser muligheter i teknologien og legger om måten de leverer helse- og omsorgstjenester på står bedre rustet til å møte fremtidens utfordringer
Self-reported nutritional competence and -practice among health care workers at nursing homes in two Norwegian municipalities : a cross-sectional study
Get PDFBackground: Malnutrition is common in elderly. Possible causes are multimorbidity and natural changes from ageing.
Aim: The aim of this study was to describe nutritional competence and nutritional practice among health care workers in nursing homes in two municipalities.
Method: Health care workers from ten nursing homes received an electronic questionnaire. The questionnaire included 49 items regarding practice of documentation, self-reported nutritional competence, and knowledge about anthropometric measures and body mass index. In addition, familiarity of key documents and guidelines about nutrition were assessed. The data was analyzed with frequencies, Chi-square, and regression analyses.
Results: Out of 542 invited participants, 185 (34 %) responded to the survey, of which 37 % were registered nurses. The majority reported good nutritional competence. A small proportion were familiar with relevant documents about nutrition; 25 % knew the “Norwegian dietary guidelines” and 37 % were familiar with the “Dietary handbook”. The health care workers reported to have a good nutritional practice, especially of documenting food intake. The practice of measuring weight and height both on admission and regularly was good, but knowledge and practice regarding body mass index were insufficient. The staff wished for increased knowledge about nutrition, especially in dementia and patients with chronical diseases.
Conclusion: Self-perceived nutritional competence and -practice were relatively good, but there is room for improvement especially in regarding and familiarity with relevant documents and use of body mass index. The health care workers wanted more knowledge about nutrition