‘We’re passengers sailing in the same ship, but we have our own berths to sleep in’: Evaluating patient and public involvement within a regional research programme: An action research project informed by Normalisation Process Theory

© 2019 Keenan et al. This is an open access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.Background: Patient and public involvement (PPI) is a requirement for UK health and social care research funding. Evidence for how best to implement PPI in research programmes, such as National Institute for Health Research (NIHR) Collaborations for Applied Health Research and Care (CLAHRCs), remains limited. This paper reports findings from an action research (AR) project called IMPRESS, which aims to strengthen PPI within CLAHRC East of England (EoE). IMPRESS combines AR with Normalisation Process Theory (NPT) to explore PPI within diverse case study projects, identifying actions to implement, test and refine to further embed PPI.Methods:We purposively selected CLAHRC EoE case study projects for in-depth analysis of PPI using NPT. Data were generated from project PPI documentation, semi-structured qualitative interviews with researchers and PPI contributors and focus groups. Transcripts and documents were subjected to abductive thematic analysis and triangulation within case. Systematic across case comparison of themes was undertaken with findings and implications refined through stakeholder consultation.Results:We interviewed 24 researchers and 13 PPI contributors and analysed 28 documents from 10 case studies. Three focus groups were held: two with researchers (n = 4 and n = 6) and one with PPI contributors (n = 5). Findings detail to what extent projects made sense of PPI, bought in to PPI, operationalised PPI and appraised it, thus identifying barriers and enablers to fully embedded PPI.Conclusion:Combining NPT with AR allows us to assess the embeddedness of PPI within projects and programme, to inform specific local action and report broader conceptual lessons for PPI knowledge and practice informing the development of an action framework for embedding PPI in research programmes. To embed PPI within similar programmes teams, professionals, disciplines and institutions should be recognised as variably networked into existing PPI support. Further focus and research is needed on sharing PPI learning and supporting innovation in PPI.Peer reviewedFinal Published versio

iRun: a situational, neo-assemblage perspective of information and records in running.

Running is a popular leisure activity, and there is great interest and use of data and information amongst its participants. Researching information about running has attracted scholarly attention in human-computer interaction (HCI) and digital sociology through self-tracking studies. There has also been limited attention in research on information behaviour upon embodied representations in short-term information use. Archival science has not considered long term running data practices despite some runners keeping information about their leisure pursuits for a long time. Both information behaviour and archival science have attempted to understand personal information and record creation contexts outside of running. This study provides a new lens to understand the interconnected complexity between people who run, technology and information environments. It uses the concept of the neo-assemblage to achieve this understanding. The research also gives a renewed understanding of the types of information runners collect and use, whether they value their running information, and to what extent runners are concerned about its long- term existence and third party involvement with their data. An innovative mobile method using a 360-degree action camera collected data whilst the researcher ran with four participants asking them questions. The four participants then participated in virtual interviews to understand how they used information created during their running. A virtual interview method collected data from four more participants about their information use in their running activities. The researcher applied situational analysis and a complementary neo-assemblage theory analysis to the collected data. Runners use both embodied information and information derived from devices when running. Both types of information are valuable to a runner’s short-term running goals. Most participants gave little thought to their represented information in the distant future. There is evidence that such information can have emotional meaning for some participants because it is central to their running identity. There was very little concern about how third parties held their personal information, such as running watch companies. Underscoring this is using the neo-assemblage theory lens to understand the interrelated complexity of the human, information and technology in these findings. The originality of this work is drawing together the study of information behaviour and archival science in a poststructural perspective using situational analysis and neo- assemblage theory. The result contributes a new perspective on the complex relationships between embodied and recorded forms of information, including records, people, and technology. This thesis makes an empirical contribution by documenting the creation and use of information during and after physical activity. This thesis contributes to data collection methods by considering the ethical implications and practicalities of recording data with a 360-degree camera. This data capture method led to a further contribution in using a virtual reality viewer as an immersive technology for data analysis

Parenthood in the (Child) Welfare State : Legitimation of care orders and care rights in Norway

Merk at den upubliserte artikkelen ikke skal tilgjengeliggjøres i BORA.Denne avhandlingen utforsker et spesifikt ‘svart hull’ i det norske velferdsdemokratiet, nemlig alvorlige inngrep i familien for å beskytte barn. Legitimering av slike inngrep studeres gjennom argumentene til de to partene i saker om omsorgsovertakelse av nyfødte – staten gjennom sitt barnevernsystem på den ene siden, og de biologiske foreldrene på den andre. Hvordan begrunner og rettferdiggjør staten slike inngrep? Hvordan forsvarer biologiske foreldre sitt foreldreskap og sin omsorgsevne? Hvilke(n) informasjon, argumentasjon og indikatorer støtter opp om, og trekkes inn i, disse beslutningene? Avhandlingen benytter et bakkebyråkratisk blikk på legitimering gjennom argumentasjon, og utforsker hva rettslige beslutningsfattere i barnevernsystemet gjør når de utøver skjønn ved inngrep i familieliv. Den utforsker også biologiske foreldres argumentasjon og deltakelse i en rettslig barnevernkontekst. Med en deliberativ forståelse av demokrati som utgangspunkt, bidrar avhandlingen til forståelsen av legitimitet som den faktiske kvaliteten på velferdspolitikk. Den empiriske settingen for avhandlingen er det norske barnevernssystemet, mer spesifikt omsorgsovertakelse av nyfødte barn rett etter fødsel. Med utgangspunkt i en spesifikk velferds- og barnevernskontekst, må rettslige beslutningsfattere vurdere hvorvidt det er overveiende sannsynlig at en skadelig situasjon eller risiko for barnet vil oppstå dersom barnet ikke plasseres ved fødsel. Disse beslutningene innebærer spesifikke, men ikke unike, utfordringer til beslutningssituasjonen. Ettersom foreldre har utøvd minimal til ingen omsorg for barnet, og situasjonen innebærer en grad av usikkerhet knyttet til konsekvensene av å gripe inn ved fødsel, har det blitt satt en forhøyet terskel for inngripen, sammenlignet med omsorgsovertakelse av eldre barn. Samtidig er nyfødte barns sårbarhet og umiddelbare behov for omsorg og trygghet åpenbare. Omsorgsovertakelse av et nyfødt barn fremstår som et sterkt og alvorlig statlige inngrep i privatlivet til enkeltmennesker og familier, som utøves fjernt fra de demokratiske prosessene som har lagt grunnlag for utformingen av velferds- og barnevernslovgivning. Disse beslutningene utfordrer derfor legitimiteten i skjønnsutøvelse og delegering av slik myndighet til beslutningsfattere på frontlinjen i velferdsstaten. I tillegg analyseres det i avhandlingen et utvalg ordinære saker om omsorgsovertakelse fra en norsk tingrett, med spesifikt søkelys på foreldres begrunnelser for å overprøve slike vedtak. I sum gir fire individuelle artikler økt forståelse av hvordan beslutningsfattere og berørte borgere deltar og bidrar inn i en kompleks, kritisk og avgjørende del av det moderne velferdsbyråkratiet. Den bredere diskusjonen i avhandlingen vektlegger tre hovedfunn og bidrag som framkommer gjennom avhandlingsarbeidet. For det første, etablerer og diskuterer avhandlingen den empiriske virkeligheten av omsorgsovertakelse av nyfødte i Norge mellom 2012 og 2016, noe som ikke tidligere har blitt systematisert. Dette empiriske bidraget er omsorgsovertakelse av nyfødtes ‘hva, hvem og hvorfor’. Avhandlingen diskuterer hva dette inngrepet utgjør, med særlig fokus på rettslige utfall. Den kartlegger hvem disse beslutningene rammer og påvirker, og den undersøker hvorfor, på hvilket rettslig grunnlag, de besluttes. For det andre, undersøker avhandlingen hvordan beslutningsfattere håndterer (den mulige) usikkerheten i beslutninger om omsorgsovertakelse av nyfødte. Prognostiske beslutninger trekkes fram som en gråsone i barnevernspraksis og beslutningsfatting i velferdsstaten. Hvordan beslutningsfattere utøver skjønn framtrer gjennom bevismaterialet som anvendes til å støtte opp om vurderinger av framtidig foreldreskap, i tillegg til antallet og typer kilder som brukes i argumentasjonen. Der det mangler faktiske omsorgsobservasjoner, anvendes foreldres bredere sosial- og velferdshistorikk som indikatorer på foreldreskap. Avhandlingen påpeker en manglende synlighet i oversettelsen av gitte risikofaktorer til framtidig utilstrekkelig omsorgsevne, ettersom saker som ender i likt utfall, ellers varierer betydelig i risikobilde. Til slutt, finner avhandlingen at foreldre kommer med komplekse motsigelser mot omsorgsovertakelse, og støtteargumenter for sin egen omsorgsevne. Dette peker på både prosedurale og substansielle legitimitetsutfordringer som staten, gjennom barnevernssystemet, må konfrontere og anerkjenne. Artikkel 1 undersøker alle skriftlige vedtak om omsorgsovertakelser av nyfødte fattet av Fylkesnemndene for barnevern og sosiale saker (Fylkesnemnda) i tidsrommet 2012 til og med 2016. Prinsippet om likebehandling utforskes på to nivå – sakenes utfall og risikofaktorene vektlagt av Fylkesnemnda. Disse nivåene sammenlignes i saker hvor de biologiske foreldrenes kognitive begrensninger er en uttalt risiko, med saker hvor denne risikoen ikke framkommer. Analysen finner signifikante forskjeller mellom gruppene når det trykk på sentrale faktorer om barn og foreldre, i tillegg til stor variasjon i risiko- og beskyttelsesfaktorer innad i sakene hvor foreldre har kognitive begrensninger. Artikkelen konkluderer med å etterspørre mer synlighet i hvordan denne variasjonen i risiko som omringer foreldre med kognitive begrensinger vurderes, og følgelig oversettes til ‘lik’ framtidig risiko for omsorgssvikt. Artikkel 2 studerer alle skriftlige vedtak om omsorgsovertakelse av nyfødte fra 2016 fattet av Fylkesnemnda hvor barnet er familiens første barn, og spør hvordan framtidig omsorgsevne blir vurdert og begrunnet. Med et primærsøkelys på vurderinger av foreldrenes risikofaktorer og endringspotensiale, finner analysen at Fylkesnemnda enhetlig vurderer at sakene inneholder høy og langvarig risiko for omsorgssvikt, og setter likhetstegn mellom dette og manglende endringspotensiale. Tre nivåer av endringspotensiale kommer frem gjennom analysen, henholdsvis permanent manglende omsorgsevne, et langtidsperspektiv på endring, og kortidsperspektiv på endring. Det framkommer stor variasjon mellom sakene når det gjelder antall kilder og kontekster som vektlegges på tvers av sakene. Artikkelen konkluderer med et gjennomgående inntrykk av at foreldrenes institusjonelle velferdshistorikk brukes til å minimere usikkerhet om fremtidig omsorgsevne, og som indikasjon på framtidig foreldreskap. Artikkel 3 utforsker alle skriftlige ankesaker fra 2012 om omsorgsovertakelse av barn mellom 0-17 år fra én norsk tingrett. I fokus står foreldres rettslige argumentasjon og motargumenter i ankesaker om omsorgsovertakelse, til støtte for egen omsorgsevne og foreldreskap. Med et diskursteoretisk perspektiv på argumentasjon blir de pragmatiske, etiske og moralske elementene ved foreldres argumentasjon analysert, strukturert gjennom hensikten med argumentet, som enten rettferdiggjøring eller unnskyldning. Analysen viser at foreldre presenterer komplekse ankegrunnlag, og bruker både rettferdiggjøring og unnskyldninger for både konkrete situasjoner og sitt helhetlige foreldreskap. Av konkret argumentasjon bruker foreldrene hovedsakelig strategier som uttrykker pragmatisk og etisk motstrid, etterfulgt av plassering av skyld, påpeking av endringspotensiale, rettferdiggjøring om manglende rettsikkerhet, og etiske unnskyldninger om ung alder og marginalisert oppvekst. Normalisering framkommer som en tredje strategi, hvor foreldre eksplisitt forsøker å utvide normalitetsforståelsen av ‘godt nok’ foreldreskap, og dermed utfordrer den etablerte forsvarsdikotomien. Der artikkel 3 undersøker et lite antall saker om ordinær omsorgsovertakelse, går artikkel 4 bredere i den videre studien av foreldres argumentasjon. Studien tar for seg alle skriftlige vedtak om omsorgsovertakelse av nyfødt fra 2012 til og med 2016. Artikkelen spør hvilke argumenter foreldre bruker til å forsvare sin omsorgsevne, og hvorvidt det er forskjeller i argumentasjon ut ifra hvilke problemer eller risikoer foreldrene blir vurdert å inneha. Analysen viser at foreldre bruker både rettferdiggjøring og unnskyldninger i sin argumentasjon, og bruker i to tredjedeler av vedtakene rasjonaliseringsargumenter i tillegg. Foreldre rettferdiggjør gjennom hovedsakelig å benekte skade eller skadepotensialer, og ved å vise til hjelpetiltakene som har vært vurdert eller utprøvd. Foreldre unnskylder også situasjonen sin, og hevder å ha oppnådd tilstrekkelig endring. De legger skyld på både barneverntjenesten og andre aktører. Når foreldre bruker rasjonaliseringer, bruker de dem ikke til å forsvare foreldreskapet sitt som sådan, men normaliserer heller, gjennom å hevde å fortjene en sjanse, i tillegg til å vise grader av enighet med barneverntjenesten og fylkesnemnda i visse vurderinger. Foreldre fokuserer primært på seg selv og barneverntjenesten i sine argumenter, og argumentasjonen varierer ut ifra hvilke risikofaktorer de blir vurdert til å ha. Analysen viser dermed i sum samsvar og uenighet i forståelsen av hva som utgjør akseptable inngrep i familien, og hvor grensen går mellom privat og offentlig ansvar for barn. I sum er avhandlingen nyskapende i sin tilnærming til legitimering av statlig inngripen i privatsfæren som uttrykt gjennom argumenter både fra staten og dem inngrepene påvirker.This thesis examines a specific black hole of democracy and the welfare state, that of child welfare interventions in families to safeguard children. Under study are legitimation processes as argumentation and justifications in decisions about involuntary care orders and revoking parents’ rights to care for their children. How does the State assess and justify such interventions? This thesis applies a street-level bureaucracy perspective on the process of legitimation, seeking to understand what legal decision-makers do when equipped with discretionary authority to intervene in family life, and which arguments, information, and indicators are invoked to substantiate these decisions. Legitimacy is furthermore examined through birth parents’ engagement with this child welfare intervention, analyzing parents’ arguments provided against a care order. Building on a deliberative approach, parents’ engagement with a serious state intervention contributes to our understanding of legitimacy as a measure of the ‘quality of government’. The empirical setting is the Norwegian child welfare system, more specifically care order interventions involving newborns taken into care directly from the hospital. Within a somewhat unique child welfare context, legal decision-makers need to assess the high probability of a situation or risk to the child, as mentioned in the general care order paragraph, if the child moves home with his or her parents. These decisions pose some specific, but not unique, decision-making challenges. Due to the parents having cared minimally for the child or not at all, and some level of uncertainty of intervening at birth, a higher threshold for intervention has been set. Simultaneously, the vulnerability and immediate care needs of children in their infancies are undisputed. As the removal of a newborn is arguably one of the starkest displays of state power over the family, far removed from the parliamentary democratic committees in which policy and law originated, these decisions challenge and place pressure on discretionary authority and legitimate decision-making. In addition to this, a selection of ordinary care order judgments from a Norwegian district court is analyzed, specifically capturing parents’ reasons for appealing care order decisions. Four individual articles in sum contribute to our understanding of how decision-makers and affected citizens in sum engage with and participate in a complex, critical, and life-changing part of the modern welfare bureaucracy. The broader discussion emphasizes three main findings and contributions emerging from the dissertation work. Firstly, it establishes and discusses the empirical reality of newborn care orders in Norway between 2012 and 2016, which has not previously been systematized. This empirical contribution is the what – who – and why of Norwegian care interventions at birth. The thesis sheds light on what these legal decisions are, with a focus on legal outcomes, who they involve and affect, and finally why, on what legal basis, they are made. The regional variation in prevalence, the social reproduction of parenting, and the distribution of risks across parents and infants are of particular interest. Secondly, the thesis probes the managing of uncertainty involved in newborn care order decision-making, highlighting prognostic decision-making as a grey area in child welfare practice and law application. How decision-makers utilize their discretion is revealed by the types of evidence used to substantiate future parenting capacities, as well as the amount and types of contexts and sources applied in justifications. Where care observations are lacking, broader social and welfare histories are invoked as parenting indicators. There is a lack of transparency in the translation of risks to future insufficiencies, as cases receiving the same legal outcomes display great variation in risks. Finally, parents provide complex oppositions against care orders. This indicates potential legitimacy gaps towards both procedural and substantive aspects of state intervention that need to be acknowledged and confronted. Article 1 approaches decision-making in all newborn care orders before the County Board in Norway decided between 2012 and 2016. Probing the principle of formal justice, the analysis examines the treatment of these cases as legal outcomes and risk factors emphasized in cases with and without parental intellectual disability. The analysis reveals that cases with parental intellectual disability receive more uniform and restrictive outcomes than those cases without. Significant differences in emphasis on certain parental and child factors are evident, as well as the large variation in risk and protection within cases with intellectual disability. The article concludes by requesting more transparency in how this significant variation in risks surrounding parental intellectual disabilities is reasoned and translated into ‘similar’ future parenting. Article 2 studies all written care orders involving newborns decided in 2016 in Norway when the infant is the firstborn to the family, asking how future parenting is assessed and substantiated. With a primary focus on the parents’ problems and assessed capacity to change, the findings overall reveal that the County Board uniformly finds high, long-lasting risk and equates this with minimal capacity to change. Three levels of change capacity emerge: most frequent is a permanent incapacity, some instances involve a slow-moving capacity, and very few cases display a transient capacity. Decision-makers display large variations in the number of sources and contexts utilized to substantiate risk across the cases. The article concludes by suggesting that welfare history is used to mitigate future uncertainty and serves as indicative of future parenthood. Article 3 studies all appealed care order cases from 2012 concerning children between ages 0 and17 from one Norwegian District Court. Under examination is parents’ legal argumentation when involved in appealed care order case proceedings. Using a discourse ethics framework, the pragmatic, ethical, and moral bases within parents’ arguments are analyzed, structured by the intent of the claims, as either excuses or justifications. The analysis reveals complex reasons for appealing, displaying parents both justifying and excusing both specific situations and the totality of their parenthood. Parents primarily apply pragmatic and ethical adversarialism, followed by pragmatic blaming and claims of change, moral justifications about due process, and ethical excuses about age and own life histories. Normalization emerges as a third strategy, where parents explicitly aim to widen the scope of parental normality and adequacy, challenging the defense dichotomy. While article 3 approaches a small sample in-depth, article 4 takes a broader approach in exploring birth parents’ engagement, by studying all cases decided between 2012 and 2016 in Norway. The study asks which arguments parents use to assert their care rights and whether there are differences in arguments depending on the parents’ problems or risks. The analysis reveals that parents primarily both justify and excuse their risks and in two-thirds of cases use rationalizations to assert their care rights. Parents primarily deny harm and pinpoint (failed) service provision efforts, as well as excuse their situation by claiming sufficient change and placing blame on child welfare services and others. Parents’ rationalizations do not defend their parenting as such, but claim normalcy and deservingness, as well as echoing concerns raised by social work and legal professionals. Besides a parental and agency focus, as well as variation in arguments across parental risks, the analysis reveals both alignment and misalignment in the understanding of acceptable state intervention and responsibilities. In sum, the thesis paves new ground in its approach of legitimation through arguments from both government and governed concerning a complex State intervention into family life.Doktorgradsavhandlin

Children’s public service broadcasters and their challenges in the online era: a comparison between the UK and Germany

This thesis aims to establish the differences and similarities in how publicly- funded public service broadcasters in the UK and Germany negotiate challenges and opportunities related to the transition from broadcasting to a multi-platform provision for children. The substantive subject of this research is the transition from public service broadcasting to public service multi- platform media for children under 13 years in the United Kingdom and Germany, where public service broadcasters offer content and services on multiple platforms, including traditional TV, audio, online and mobile media. The research focuses on the publicly-funded broadcasters SWR, BR (ARD), BBC and ZDF and ARD/ZDF’s joint children’s channel KiKA, while the original research further narrows the focus down to those services on new online and mobile platforms. The research applies a qualitative comparative approach based on a triangulation of literature study, document analysis and semi-structured expert interviews with broadcasters, producers and stakeholders in the policy-making process. The thesis consists of three parts and a conclusion. The thesis concludes that, although there are some similarities, the BBC and the German public service broadcasters under review differ in regard to how they understand the challenge of the multi-platform transformation, the main sources and characteristics of that challenge and the purpose of the multi-platform provision

Transforming Conservation

There are severe problems with the decision-making processes currently widely used, leading to ineffective use of evidence, faulty decisions, wasting of resources and the erosion of public and political support. In this book an international team of experts provide solutions. The transformation suggested includes rethinking how evidence is assessed, combined, communicated and used in decision-making; using effective methods when asking experts to make judgements (i.e. avoiding just asking an expert or a group of experts!); using a structured process for making decisions that incorporate the evidence and having effective processes for learning from actions. In each case, the specific problem with decision making is described with a range of practical solutions. Adopting this approach to decision-making requires societal change so detailed suggestions are made for transforming organisations, governments, businesses, funders and philanthropists. The practical suggestions include twelve downloadable checklists. The vision of the authors is to transform conservation so it is more effective, more cost-efficient, learns from practice and is more attractive to funders. However, the lessons of this important book go well beyond conservation to decision-makers in any field

Understanding the development of information literacy in higher education: Knowing, doing, and feeling

Information literacy (IL) is the ability to recognize when information is needed and to find, evaluate, and effectively use this information. The aim of this doctoral research was to study the development of IL in undergraduates over three years, including their knowledge, skills, and attitudes, and the relationships among the three. Mixed methods were employed to better understand the totality of students’ IL development, and this research demonstrates the value of employing this methodology in the field of IL. Four psychometrically evaluated tools were developed to measure students’ IL knowledge, skills, and attitudes: a 21-item IL test (knowing); two authentic assignments to assess skills in evaluating and using information sources (doing); and a questionnaire to measure students’ interest in being or becoming information literate (feeling). These freely available IL-assessment tools contribute to both IL research and practice. The interest questionnaire can be employed to measure the development of other interests as well, and thereby represents a contribution also for those who study interest. This research fills gaps in the IL literature by studying interactions among several facets of IL over time. It follows IL development longer than most studies and introduces the measurement of interest – an important motivator for learning – into the field of IL. It is also the first study to explore transformative IL learning in students. Findings show that (1) IL is a multifaceted construct; (2) students’ IL knowledge and skills increase and intercorrelate more with time, as do their IL attitudes when measured by interest and IL’s usefulness and importance for them. Interviews revealed that (3) students gradually become more interested in being or becoming information literate people, and (4) some experience a change in identity as a result of becoming more information literate, which indicates that transformative IL learning can occur

Transforming Conservation

There are severe problems with the decision-making processes currently widely used, leading to ineffective use of evidence, faulty decisions, wasting of resources and the erosion of public and political support. In this book an international team of experts provide solutions. The transformation suggested includes rethinking how evidence is assessed, combined, communicated and used in decision-making; using effective methods when asking experts to make judgements (i.e. avoiding just asking an expert or a group of experts!); using a structured process for making decisions that incorporate the evidence and having effective processes for learning from actions. In each case, the specific problem with decision making is described with a range of practical solutions. Adopting this approach to decision-making requires societal change so detailed suggestions are made for transforming organisations, governments, businesses, funders and philanthropists. The practical suggestions include twelve downloadable checklists. The vision of the authors is to transform conservation so it is more effective, more cost-efficient, learns from practice and is more attractive to funders. However, the lessons of this important book go well beyond conservation to decision-makers in any field