The cost-effectiveness of opt-in and send-to-all HPV self-sampling among long-term non-attenders to cervical cancer screening in Norway : The Equalscreen randomized controlled trial

OBJECTIVE: We assessed the cost-effectiveness of mailing a human papillomavirus self-sampling (HPV-ss) kit, directly or via invitation to order, compared with mailing reminder letters among long-term non-attenders in Norway. METHODS: We conducted a secondary analysis using the Equalscreen study data with 6000 women aged 35-69 years who had not screened in 10+ years. Participants were equally randomized into three arms: reminder letter (control); invitation to order HPV-ss kit (opt-in); directly mailed HPV-ss kit (send-to-all). Cost-effectiveness (2020 Great British Pounds (GBP)) was estimated using incremental cost-effectiveness ratios (ICERs) per additional screened woman, and per additional cervical intraepithelial neoplasia grade 2 or worse (CIN2+) from extended and direct healthcare perspectives. RESULTS: Participation, CIN2+ detection, and total screening costs were highest in the send-to-all arm, followed by the opt-in and control arms. Non-histological physician appointments contributed to 67% of the total costs in the control arm and ≤ 31% in the self-sampling arms. From an expanded healthcare perspective, the ICERs were 135 GBP and 169 GBP per additional screened woman, and 2864 GBP and 4165 GBP per additional CIN2+ detected for the opt-in and send-to-all, respectively. CONCLUSIONS: Opt-in and send-to-all self-sampling were more effective and, depending on willingness-to-pay, may be considered cost-effective alternatives to improve screening attendance in Norway

Når deltid er norm : Hjelpepleieres forhandlinger om valg av arbeidstid: Deltid og merarbeid.

Velges arbeidstid? Hvordan forhandles det om valg av arbeidstid når mulighetene er få og strukturell tvunget deltid er et forhandlingspremiss? I denne studien drøftes problemstillingen ”Hvordan forhandler hjelpepleiere ansatt ved sykehjem på bygda om valg av arbeidstid? Datamaterialet er dybdeintervjuer med seks hjelpepleiere ansatt i to ulike kommuner på Sørøstlandet. Dette metodiske utgangspunktet har muliggjort å studere ambivalens og dilemmaer i forhandlingen om valg av arbeidstid. To av hjelpepleierne ønsket å jobbe full stilling, to ønsket en større deltidsstilling og to var fornøyd med deltidsstillingene sine. De som ønsket større fast stilling jobbet ekstra som vikar ved behov. Hvor mye de jobbet ekstra hadde sammenheng med hvor stor fast stilling de besatte. Forhandlingen om å jobbe ekstra var på den ene siden et spørsmål om å forvalte en god relasjon til arbeidsgiver og kollegaer. Flere fikk dårlig samvittighet når de sa nei til å jobbe ekstra. På den andre siden var forhandlingen også et spørsmål om økonomisk avhengighet av ekstravakter. Hjelpepleierne forhandlet i tre sfærer om stillingsstørrelse og merarbeid; med familien, arbeidsgiver og kollegaer. To ulike teorier er trukket inn for å belyse og forstå hjelpepleiernes valg og preferanser av arbeidstid; Hakims preferanseteori og Cromptons mer strukturelle teori om kvinner og arbeidstid. Disse teoriene fanget likevel ikke godt nok opp forhandlingenes kompleksitet, når det gjaldt hvordan det forhandles om arbeidstid, og premissene i og for forhandlingene. Derfor har jeg tatt inn begrepene normer, forventninger og roller i det teoretiske perspektivet. De er nyttige for å kunne utforske valg, frivillighet og makt på den ene siden, og tvang, ufrivillighet og avmakt på den andre. I tillegg er teorier om makt og kjønn trukket inn i det teoretiske perspektivet. Det har vært nyttige for å kunne problematisere naturaliserte premisser i forhandlingen om valg av arbeidstid. Arbeidsgiver tilbød en fleksibel arbeidstid, som kortere arbeidsdager, og krevde til gjengjeld tilgjengelighet og beredskap av de ansatte for å dekke opp ledige vakter. Det lå sterke forventninger om å si ja til å jobbe ekstra når man ønsket en større stilling. De måtte gjøre seg tilgjengelig for arbeidsstedet ved å stille opp og ta det de kunne få av ekstravakter. Denne gruppen hjelpepleiere kunne i liten grad velge arbeidstid. Arbeidssituasjonen var i det hele tatt ufrivillig. Ufrivillig deltid er i denne sektoren en forutsetning for organiseringen av arbeidstiden. At noen ønsker mer arbeidstid er en forutsetning for at ledige vakter dekkes opp. De som var fornøyde med stillingsbrøken sin, kunne til en viss grad gjøre seg utilgjengelige for disse forventningene og kravene, for eksempel om å jobbe ekstra. Hjelpepleiernes maktposisjon er et viktig premiss i forhandlingen om arbeidstid. Ulike posisjoner innenfor dette systemet, at noen ufrivillig har små stillinger mens andre frivillig har store stillingsbrøker, er kanskje derfor også er en viktig forutsetning for dette systemets opprettholdelse, fordi disse posisjonene svekker grunnlaget for kollektivdannelser som kan endre på organiseringen av arbeidstiden. Deltidsarbeidet er kjønnet. Kjønn er også et viktig premiss i forhandlingene om arbeidstid. Kvinner velger det som er igjen av alternativer etter at mannen har valgt arbeid og arbeidstidstilpassning. Dette handler både om lønn, ugunstige arbeidstider og tilgjengelighet og omsorg for familien. Forhandlingene om valg av arbeidstid har dermed både kjønnete konsekvenser og konsekvenser for opprettholdelse av maktstrukturene. Valg av arbeidstid har altså både frivillighet og ufrivillighet knyttet til seg. Takknemmelighet, hjelpsomhet og samvittighet er normative orienteringer som var viktige i forhandlingene om ”valg” av arbeidstid. Disse hensynene virket disiplinerende og som et normativt press, noe som igjen utfordrer ideen om arbeidstid som valgt. Likevel var ideen om valg nærværende hos hjelpepleierne. De normative orienteringene hjelpepleierne brukte i forhandlingen, mener jeg, forsterkes i omsorgsyrket, på bygda og i et kvinneyrke. Dette gjør også valgmulighetene færre, fordi det kan tenkes at prisen av å gå på tvers av gjeldende normer er for høy. I grådige organisasjoner er forutsetningene nettopp kvinners samvittighetsfulle innsats. Når ”rettferdighet” i et urimelig system søkes, og ”valg” i et system uten valgmuligheter gjøres, avpolitiseres både det urimelige systemet og fraværet av valgmuligheter. Konsekvenser av slike prosesser blir dermed at kvinnelig underordning ”velges,” naturaliseres og reproduseres

Affected and responsible: A qualitative study of family caregivers in interaction with chronically ill persons and health care professionals

The aim of this thesis is to deepen scientific knowledge of the interactions among family caregivers, chronically ill persons and health care professionals, with a particular focus on the work of family caregivers. This knowledge can improve understanding of how to support the caregivers of chronically ill persons. In this study, the interactions among family caregivers, persons with chronic obstructive pulmonary disease (COPD) and health care professionals are analysed in three different contexts: everyday life, acute situations and home visits by pulmonary ambulatory nurses. The increasing proportion of the elderly in the population and the growing prevalence of chronic diseases, represent future challenges for long-term care services. In recent years, health care policies have emphasised transferring more responsibility for care provision to community health care, and families are expected to take on a greater care responsibility for ill relatives. However, the implications of these shifts in expectations and responsibility for the relation between informal and formal health care provision have received little attention in research and public discourse. The present study has a qualitative research design. The empirical materials were drawn from qualitative interviews with the spouses of COPD patients and pulmonary ambulatory nurses. The participants were recruited from the patient pool of ambulatory pulmonary services at two hospitals in Oslo. In addition, participant observation was carried out during home visits to COPD patients. The findings in this study show that family caregivers are both affected by illness and feel responsible for managing it. In this context, the caregivers faced several dilemmas as they made great efforts to maintain continuity and normality in their relationships with the ill persons and in everyday life. A crucial part of these was the caregivers’ attempts to maintain their shared, continued biographies with their ill partners - their ‘biographical we’. This involved maintaining the routines, practices and arrangements that constituted symbols of their shared life project and maintaining their shared narrative as a couple. However, the caregivers’ sense of affectedness and responsibility resulted in competing considerations in their endeavour to maintain self, reciprocity and the biographies of themselves and the person for whom they cared. Family caregivers strive to recognise their own needs for support, in a relational process with the ill spouses and formal health care providers. The caregivers expressed needs for respite, a greater sense of safety and sharing of responsibilities. On one hand, they feared letting the ill person feel abandoned by them, but on the other, caregivers made efforts of making health care services fit into their lives. In addition, several caregivers described difficulties having their needs for support recognised within formal health care services. Health care encounters with pulmonary ambulatory nurses show the importance of the nurses’ ability to grant recognition to both the patients and caregivers to enable discussion of the management of the illness. In these discussions, health care professionals helped both patients and caregivers navigate a complex illness trajectory. This assistance was crucial as management of illness might reflect underlying tensions and support needs that are often unclarified between spouses. The thesis draws attention to the need to develop a more sensitive approach towards caregivers’ experiences as both affected and responsible. In various ways, this thesis’s findings demonstrate the importance of supporting both patients and caregivers in facing relational dilemmas, such as legitimating and seeking health care within the marital relationship. This thesis highlights the gap between the ideals in health care policies and the realities in health care provision concerning supporting family caregivers. Caregivers have an ambiguous status in health care policies due to the increased expectations for performance and responsibility without secured rights to support from health care services, or inclusion in health care encounters. As the expectations on family caregivers increase, it is crucial to provide them with accessible and flexible services in both acute care and systematic followup throughout the illness trajectory, including a relational focus with explicit attention also to caregivers. In this way, it might be possible for caregivers to maintain a sense of safety while shouldering extensive care responsibilities

It’s not just about me: a qualitative study of couples’ narratives about home death when one of the partners is dying of cancer

Background: Most cancer patients state a preference for home death. Care and support from primary caregivers are important to enable dying at home. A preference for home death from the perspective of couples has rarely been investigated. Objectives: To explore how a preference for home death is understood and enacted in couples where one of the partners is dying of cancer. Design: A qualitative interview research design with a narrative approach was used. Methods: Five couples participated in dyad interviews. During the analysis, two interviews that particularly illuminated couples’ shared and individual views were chosen as the primary cases. Results: The interviews show, in two highly different ways, how a preference for home death is a significant relational matter. The interviews are presented as two cases: ‘Struggles in an Unknown Terrain’ and ‘Reliance at the Kitchen Table’. They show how a preference for home death can be understood and enacted as a struggle or as reliance based on the couple’s shared biography and the partner’s ability to care for the partner during the end-of-life phase. The analysis highlighted the negotiations that underpin a preference for home death. In these negotiations, the couples drew on idealised understandings of home death. These ideas were supported by cultural values related to autonomy and independence as well as participation and citizenship. Thus, in the negotiations about being cared for and caring, legitimate dependency and the maintenance of a reciprocal relationship were balanced. The presence of healthcare professionals and medical devices in the home had to be balanced with the need to maintain a sense of self and an authentic home. Conclusion: A relational perspective on a preference for home death made us attentive to couples’ negotiations. These negotiations give couples the opportunity to re-evaluate and reconfirm individual and mutual needs in the end-of-life phase

Searching for ‘transformative moments’: a qualitative study of nurses’ work during home visits to COPD patients and their caregivers in Norway

Aim The integration of families into healthcare services is being emphasized increasingly in healthcare polices. The aim of this study was to investigate how professionals during home visits support both patients and caregivers in accepting and accommodating to illness. Design An explorative qualitative design. Methods Participant observations from home visits (N = 20) of pulmonary ambulatory nurses to COPD patients in Norway, followed by interviews with these nurses. Results Our findings demonstrate the delicate nature of nurses’ work during home visits to COPD patients and their caregivers. They support both patients and caregivers in reconciling themselves with the negative consequences of illness, as well as giving legitimation to and potential room for, sustainable arrangements within the scope of the relationship. The nurses address significant issues, having transformative potential concerning attitudes and practices related to the management of illness and adjusting to a complex illness trajectory

Searching for ‘transformative moments’: a qualitative study of nurses’ work during home visits to COPD patients and their caregivers in Norway

Aim: The integration of families into healthcare services is being emphasized increasingly in healthcare polices. The aim of this study was to investigate how professionals during home visits support both patients and caregivers in accepting and accommodating to illness. Methods: Participant observations from home visits (N = 20) of pulmonary ambulatory nurses to COPD patients in Norway, followed by interviews with these nurses. Results: Our findings demonstrate the delicate nature of nurses’ work during home visits to COPD patients and their caregivers. They support both patients and caregivers in reconciling themselves with the negative consequences of illness, as well as giving legitimation to and potential room for, sustainable arrangements within the scope of the relationship. The nurses address significant issues, having transformative potential concerning attitudes and practices related to the management of illness and adjusting to a complex illness trajectory

The role of close relations in cancer patients’ decisions on home death: An exploratory study

The leading cause of death in Norway is cancer, and among cancer patients, around 70 % prefer to die at home. However, there is a significant gap between cancer patients’ preferences and actual place of death in Norway, with major regional differences. More knowledge is needed to identify circumstances that would lead to the home as the actual place of death and not merely the preferred location . To develop deeper insights into the issue of home death, we believe closer focus should be on what actually takes place between spouses and within families when it comes to discussions and decisions on home death. We understand that the interplay between the resources that family carers—particularly spouses—have available to them, the relationship between seriously ill cancer patients and their partners, and the practical tasks and caregiving challenges that lie ahead when discussing and deciding on home death are complex. This study will unpack important parts of this complexity, paying particular attention to how family biography and the relationship between the person dying of cancer and his/her spouse impacts on how dying at home becomes an issue and is discussed, reflected upon, decided and handled

‘It’s not just about me’: a qualitative study of couples’ narratives about home death when one of the partners is dying of cancer

Background: Most cancer patients state a preference for home death. Care and support from primary caregivers are important to enable dying at home. A preference for home death from the perspective of couples has rarely been investigated. Objectives: To explore how a preference for home death is understood and enacted in couples where one of the partners is dying of cancer. Design: A qualitative interview research design with a narrative approach was used. Methods: Five couples participated in dyad interviews. During the analysis, two interviews that particularly illuminated couples’ shared and individual views were chosen as the primary cases. Results: The interviews show, in two highly different ways, how a preference for home death is a significant relational matter. The interviews are presented as two cases: ‘Struggles in an Unknown Terrain’ and ‘Reliance at the Kitchen Table’. They show how a preference for home death can be understood and enacted as a struggle or as reliance based on the couple’s shared biography and the partner’s ability to care for the partner during the end-of-life phase. The analysis highlighted the negotiations that underpin a preference for home death. In these negotiations, the couples drew on idealised understandings of home death. These ideas were supported by cultural values related to autonomy and independence as well as participation and citizenship. Thus, in the negotiations about being cared for and caring, legitimate dependency and the maintenance of a reciprocal relationship were balanced. The presence of healthcare professionals and medical devices in the home had to be balanced with the need to maintain a sense of self and an authentic home. Conclusion: A relational perspective on a preference for home death made us attentive to couples’ negotiations. These negotiations give couples the opportunity to re-evaluate and reconfirm individual and mutual needs in the end-of-life phase

Prosjektforslag hjemmetest: Implementering av hjemmeprøvetaking i Livmorhalsprogrammet

Effektiv forebygging av livmorhalskreft fordrer at kvinner deltar i Livmorhalsprogrammet som anbefalt. I dag er deltakelsen på 71%, mens anbefalt deltakelse er minimum 80% ifølge internasjonale retningslinjer. Over halvparten av livmorhalskrefttilfellene diagnostisert i Norge er blant kvinner som ikke har tatt livmorhalsprøver som anbefalt. I tillegg får de som aldri eller sjelden screener seg, oftere påvist livmorhalskreft på et høyere stadium enn de som screener seg som anbefalt. En ny norsk studie viser at tilbud om hjemmetest til denne gruppen avdekker et betydelig antall forstadier til kreft og kreft som ikke ville blitt avdekket ved ordinær påminnelse om å ta screeningprøve hos lege. Både internasjonale og norske studier har vist at man på en kostnadseffektiv måte kan oppnå en betydelig forbedret deltakelse i screeningprogrammet blant kvinner dersom de får tilbud om hjemme-prøvetaking (= hjemmetest). Helsedirektoratet har bedt Kreftregisteret om å utrede hjemmetest som et tiltak for å øke deltakelsen i Livmorhalsprogrammet blant kvinner som ikke har møtt til screening på mer enn ti år. Forslaget skulle også inkludere bruk av hjemmetest for kvinner som ikke har tatt livmorhalsprøve på grunn av covid-19 pandemien, og eventuelle andre grupper. Denne rapporten skisserer hvordan hjemmetest kan innføres i Livmorhalsprogrammet. Anbefalt strategi er å gi tilbud om hjemmetest til tre grupper. Den første gruppen er kvinner med betydelig økt risiko for alvorlige celleforandringer i livmorhalsen på grunn av manglende deltakelse over lengre tid. Spesifikt anbefales det at kvinner uten registrert livmorhalsprøve i løpet av ti år eller mer får hjemmetest tilsendt i posten (opt-out). Den andre gruppen er kvinner uten registrert livmorhalsprøve de siste åtte eller ni år, denne gruppen anbefales å få mulighet til å bestille hjemmetest (opt-in). Den siste gruppen er kvinner som av fysiske eller psykiske årsaker vegrer seg for å ta en livmorhalsprøve hos legen. Det planlegges at disse kvinnene får tilbud om hjemmetest via lege. Hjemmetesting er enda mer aktuelt nå på grunn av covid-19 pandemien. Normalt registrerer Livmorhalsprogrammet cirka 450 000 prøver per år. Grove estimater viser at det ble registrert 50 000 færre livmorhalsprøver enn forventet i 2020. En ny smittebølge av covid-19 i november 2020, som førte til en ny sosial nedstenging av samfunnet i Oslo-regionen i januar 2021, ser også ut til å ha påvirket antall registrerte prøver i januar 2021. Hjemmetest i seg selv er et mer kostnadseffektivt alternativ enn legetatt prøve, ettersom helsepersonell ikke involveres i selve prøvetakingen. De helseøkonomiske modellene inkludert i rapporten viser at tilbud om hjemmetest gir en helsegevinst ved at andelen kvinner som deltar i screeningprogrammet vil øke, og dermed reduseres deres livstidsrisiko for å utvikle livmorhalskreft. Økt deltakelse vil imidlertid medføre en økt kostnad for screeningvirksomheten, men for samfunnet som en helhet vil det være lønnsomt. Dette tilbudet vil resultere i samfunnsmessige besparelser fordi færre kvinner vil måtte behandles for livmorhalskreft. Kvinner som rammes av livmorhalskreft får økte kvalitetsjusterte leveår (på engelsk: quality-adjusted life years -QALYs). I vår forenklede modell-baserte analyse ble det estimert at opt-out hjemmetesting, sammenlignet med påminnelsesbrev, kunne gi mer enn 1 365 ekstra (diskontert) QALYs blant de 217 000 kvinnene som kvalifiserer til hjemmetest i løpet av fem år. Dette er langt flere QALYs enn de 155 som behøves for å være kostnadseffektiv, gitt at myndighetenes betalingsvillighet for et ekstra leveår er 385 000 kroner. Samlet viser også beregningsmodellene som er gjennomført, at kostnaden per tilfelle av alvorlige celleforandringer som oppdages, er lavere ved hjemmetest sammenlignet med vanlig påminnelse og prøvetaking hos lege