Purpose. To systematically develop and field test an intervention to engage families and healthcare teams in the decision-making process about life support for critically ill patients in the Intensive Care Unit (ICU). Setting. Adult medical-surgical ICU at a Canadian academic teaching hospital. Methods. The International Patient Decision Aid Standards (IPDAS) criteria and the Interprofessional Shared Decision Making (SDM) model guided the study of families facing decisions about life support for their relative in ICU that involved:1) systematic review; 2) qualitative descriptive study; 3) mixed methods field test of a novel patient decision aid (DA). Systematic review findings. Of 3162 citations, four trials evaluated interventions to improve communication between health professionals and patients/families. One intervention met eight of nine criteria for SDM but did not evaluate its effect on the benefit to communication. Qualitative study findings. Six family members and nine health professionals identified two options (life support or comfort care) and values associated with these options. Values included maintaining quality of life, surviving critical illness, minimizing pain and suffering, not being attached to machines, giving the family enough time to adapt emotionally to the patient’s health situation, and the judicious use of healthcare resources. Families were unlikely to become engaged without healthcare professionals making the decision explicit and minimizing other barriers across the decision-making process. Field test findings. Family members and health professionals for eight patients indicated that the DA was feasible to use, acceptable to users, had the potential to do what was intended, and did not seem to present adverse consequences to users. An enhanced delivery strategy is needed for future evaluation of its effect on facilitating patient/family involvement in decisions. Conclusions. Limited involvement of families in the process of decision-making about life support in the ICU reinforced the need for effective interventions to facilitate SDM. These studies validated the operationalization of the IPDAS criteria, as part of a systematic process for developing and field testing DAs. However, IPDAS criteria stop short of elements necessary to consider when implementing the DA in the processes of care.

Recent decades have seen increasing recognition of the importance of patient involvement during patient-professional interactions and promotion of preventative and long term approaches to healthcare for those with long-term conditions. The concepts of 'shared decision making' and 'personalised care planning' have both been advocated by patient groups, policy-makers, professional bodies and academia as best practice. During shared decision making, patients and healthcare professionals work in equal partnership to decide the best course of action. Shared decision making is a central tenet of personalised care planning, as it aims to foster partnerships between patients and healthcare professionals when making decisions, but personalised care planning also describes an overall approach to healthcare that is forward-planning and preventative, rather than episodic and reactive. Despite the breadth of support for such approaches, in reality they are not routinely adopted. Multiple Sclerosis (MS) is a heterogeneous neurodegenerative long term condition, which is unpredictable with limited treatments available. Such uncertainty and complexity position MS as an interesting long term condition to explore decisional and information needs. This doctoral research comprises of three methods stages. Firstly, two systematic reviews assessing the effectiveness of personalised care planning for people with long-term conditions and people with MS were carried out. Secondly, 22 in-depth semi-structured qualitative interviews were carried out with people with MS across the UK to explore experiences of decision making and interactions with healthcare professionals. Purposive sampling was carried out and data saturation determined sample size. A modified grounded theory approach was used and thematic analysis of interview data was carried out. Lastly, a series of structured qualitative interviews were carried out with 6 consultant neurologists. This stage was iterative in that problematic areas identified during analysis of interview data from stage 2 were presented to neurologists in infographic form to further examine issues raised. Framework analysis was carried out on neurologist interview data to examine their interpretations and potential solutions. Although there appears to be some evidence demonstrating that personalised care planning is effective for people with long term conditions, such favourable effects were not demonstrated in the context of MS. Based on the findings from the systematic reviews it is unclear whether personalised care planning is effective for people with MS and there is a clear gap in the literature examining this. Findings from the interview stages suggest there are key areas which are lacking in terms of information and decisional support. Such areas included the type and amount of information around the time of diagnosis, support when choosing disease modifying drugs and discussions about approaches outside mainstream medicine. Findings from neurologist interview data corroborated those from MS interview data, but through examination of issues raised it also highlighted some of the complexities and challenges of involving patients and enacting shared decision making in reality. This research identified key areas that require improvement for people with MS in terms of provision of the information and decisional support. Although in theory personalised care planning and shared decision making are positioned as best practice, in reality it is unclear whether they are effective or appropriate for people with MS. The way in which such approaches are enacted are complex and require careful consideration. Potential barriers and pitfalls identified within this study suggest a lack of clarity in how to respond to challenges and further investigation into how patient involvement is enacted is needed.

Inledning: En nyligen publicerad rapport visar att patientdelaktigheten i Sverige på flera sätt är låg i jämförelse med andra jämförbara länder. Personcentrering är ett förhållningssätt syftande till att öka patientdelaktighet och som i studier visat sig ha positiva hälsoeffekter. Vårdbehovet kan minskas framför allt för patienter med kroniska åkommor såsom hjärtsvikt vilket är den enskilt vanligaste orsaken till inneliggande vård i Sverige. Syfte: Syftet med förbättringsarbetet var att införa ett personcentrerat arbetssätt och därigenom öka patienternas delaktighet på en kardiologisk vårdavdelning. Syftet med studien av förbättringsarbetet var att undersöka personalens upplevelse av detta. Fynden skulle kunna underlätta vidare införande av denna arbetsmetod. Metod: Förbättringsarbetet bedrevs i projektform och genomfördes enligt Nolans förbättringsmodell. Ronden ersattes med ett fördjupat inskrivningssamtal varvid en skriftlig vårdplan upprättades. Patienterna fick skatta upplevd delaktighet i samband med hemgång. Personalens upplevelse studerades med induktiv kvalitativ ansats genom fokusgruppsintervjuer. Resultat: Enligt enkäterna var upplevelsen av delaktighet hög såväl före som efter införandet av personcentrerat arbetssätt, men variationen var stor. Samtliga yrkeskategorier tyckte arbetssättet gav mervärde, både för patienter och personal. Främst betonades ökad patientdelaktighet, bättre förståelse för sammanhanget, ökad teamkänsla och bättre framförhållning. Slutsats: Upplevelsen av införande av personcentrerad vård var allmänt positiv och skiljde sig inte mellan de olika yrkesgrupperna. Personal såg värde av ökad patientdelaktighet, bättre framförhållning samt ökad samstämmighet och samhörighetskänsla med ett personcentrerat arbetssätt. / Introduction: A recent published report shows that patient involvement in Sweden is in several ways low compared with other comparable countries. Person-centering is an attitude aimed at increasing patient involvement and which in studies has shown positive health effects. The need for care can be reduced especially for patients with chronic diseases such as heart failure, which is the single most common cause of inpatient care in Sweden. Purpose: The purpose of the improvement work aimed at introducing a person-centered approach and thereby increase the patient's involvement in a cardiac care department. The purpose of the study of the improvement work was to investigate the staff's experience of this. The findings could facilitate further implementation of this method of work. Method: Improvement work was conducted in a project form and implemented according to Nolan's improvement model. The round was replaced with an in-depth enrollment interview, and a written care plan was established. Patients were asked to rate their perceived involvement at time for discharge. The staff's experience was studied with inductive qualitative approach through focus group interviews. Result: According to the surveys, the experience of involvement was high both before and after the introduction of person-centered work methods, but the variation was high. All occupational categories thought the person-centered approach had added value, both for patients and staff. The main emphasis was on increased patient participation, better understanding of the context, increased team spirit and better advancement. Conclusion: The experience of introducing person-centered care was generally positive and did not differ between the different occupational groups. The staff saw value of increased patient involvement, better long term planning and increased coherence and sense of togetherness with a person-centered approach.

Purpose. To systematically develop and field test an intervention to engage families and healthcare teams in the decision-making process about life support for critically ill patients in the Intensive Care Unit (ICU). Setting. Adult medical-surgical ICU at a Canadian academic teaching hospital. Methods. The International Patient Decision Aid Standards (IPDAS) criteria and the Interprofessional Shared Decision Making (SDM) model guided the study of families facing decisions about life support for their relative in ICU that involved:1) systematic review; 2) qualitative descriptive study; 3) mixed methods field test of a novel patient decision aid (DA). Systematic review findings. Of 3162 citations, four trials evaluated interventions to improve communication between health professionals and patients/families. One intervention met eight of nine criteria for SDM but did not evaluate its effect on the benefit to communication. Qualitative study findings. Six family members and nine health professionals identified two options (life support or comfort care) and values associated with these options. Values included maintaining quality of life, surviving critical illness, minimizing pain and suffering, not being attached to machines, giving the family enough time to adapt emotionally to the patient’s health situation, and the judicious use of healthcare resources. Families were unlikely to become engaged without healthcare professionals making the decision explicit and minimizing other barriers across the decision-making process. Field test findings. Family members and health professionals for eight patients indicated that the DA was feasible to use, acceptable to users, had the potential to do what was intended, and did not seem to present adverse consequences to users. An enhanced delivery strategy is needed for future evaluation of its effect on facilitating patient/family involvement in decisions. Conclusions. Limited involvement of families in the process of decision-making about life support in the ICU reinforced the need for effective interventions to facilitate SDM. These studies validated the operationalization of the IPDAS criteria, as part of a systematic process for developing and field testing DAs. However, IPDAS criteria stop short of elements necessary to consider when implementing the DA in the processes of care.

Bakgrund: Patientinvolvering och patientdelaktighet inom vården har blivit allt mer aktuellt de senaste åren. En metod för patientdelaktighet som testats framför allt inom somatisk vård är Experience-Based Co-Design (EBCD). Lokalt problem: Verksamheten har strukturer för att fånga erfarenheter från patienter, men det saknas strukturer för att fånga närståendes och personals erfarenheter. Det saknas ett forum där patienter, närstående och personal kan mötas och tillsammans arbeta med förbättringar. Syfte: För förbättringsarbetet, testa metoder från EBCD inom kontexten psykiatrisk heldygnsvård. För studien, beskriva deltagares erfarenheter av att involveras i förbättringsarbete utifrån EBCD, samt att belysa vad som gör det svårt att engagera patienter i förbättringsarbete. Metod: Övergripande struktur för förbättringsarbetet är Nolans förbättringsmodell och PDSA. Studien utgörs av kvalitativ innehållsanalys av två semistrukturerade fokusgruppsintervjuer. Interventioner: Metoder från EBCD har anpassats efter kontexten och testats. Resultat: Att delta i förbättringsarbete utifrån EBCD har varit uppskattat och utvecklande. Svårigheter har framför allt varit rekrytering av patienter. Slutsatser: EBCD går att använda inom psykiatrisk heldygnsvård, modifieringar är nödvändiga. Vilka och hur behöver studeras vidare. EBCD påverkar individen och organisationen. För att uppnå ett önskat utfall och för att engagera deltagare behöver vissa förutsättningar uppfyllas vad gäller strukturer och maktutjämning mellan patienter, närstående och personal. / Background: Patient involvement and patient participation within health care has been more and more important the last years. One method for patient involvement that has been tested (mostly in somatic care) is Experience-Based Co-Design (EBCD).  Local problem: The organization has structures to gather experiences from patients, but there is no structure to gather experiences from dependants or staff. There is no forum for patients, dependants and staff to meet and together work with improvement. Aim: For the Quality Improvement project (QIP) try methods from EBCD in the context of psychiatric in-patient care. For the study of the QIP describe participant’s experiences of being part of a QIP based on EBCD, and highlight what makes it difficult to engage patients in QIP. Method: The main structure for the QIP is Nolan’s model of change and PDSA. The study consists of a qualitative content analysis based on two semi-structured focus group interviews. Interventions: Methods from EBCD has been adjusted according to the context and then tested. Result: To participate in a QIP based on EBCD has been appreciated and developing. Difficulties have above all been the recruiting of patients. Conclusions: EBCD is possible to use in psychiatric in-patient care, modifications are necessary. Which modifications and how needs to be examined further. EBCD affects both the individual and the organization. To achieve asked goals and to engage patients there are some conditions that need to be fulfilled according to structures and equalisation of power between patients, dependants and staff.

The diploma thesis focuses on impact of civic engagement on health care system. It studies to what level this participation helps health care system transformation and change of a relationship between patients and political and professional authorities. It's aim is to provide a critical sociological analysis and explain social processes accompanying patients' engagement by using examples. Patient organisations - an institutionalised form of civic society with a potential to evoke social change - get into scope here. The ambition of this thesis is to show the applicability of the reflexivity concept to the area of health care, to enrich this analytical framework by multilevel approach to the health care system and therefore add to the discourse around civic engagement phenomenon by a systemic and structured view of dynamic relationships between patient organisations and health care system. The findings of the author are based on an analysis of semi-structured interviews with patient organisations representatives and available documents. The author emphasises the ambivalent impact of civic engagement which on one side reinforces individual transformations of micro, meso, macro and meta levels of health care system and also acts as a catalyst of wider sociocultural changes. On the other hand, it is accompanied...

Medication safety and improving communication at care transitions are an international priority. There is vast evidence on the scale of error associated with medicines reconciliation and some evidence of successful interventions to improve reconciliation. However, there is insufficient evidence on the factors that contribute towards medication error at transitions, or the roles of those involved. This thesis examined current UK medicines reconciliation practice within primary and secondary care, and the role of HCPs and patients. Using a mixed-method, multi-centre design, the type and severity of discrepancies at admission to hospital were established and staff undertaking medicines reconciliation across secondary and primary care were observed, using evidence-informed framework, based on a narrative literature review. The overall processes used to reconcile medicines were similar; however, there was considerable inter and intra-organisational variation within primary and secondary care practice. Patients were not routinely involved in discussions about their medication, despite their capacity to do so. Various human factors in reconciliation-related errors were apparent; predominantly inadequate communication, individual factors e.g. variation in approach by HCP, and patient factors e.g. lack of capacity. Areas of good practice which could reduce medicines reconciliation-related errors/discrepancies were identified. There is a need for increased consistency and standardisation of medicines reconciliationrelated policy, procedures and documentation, alongside communication optimisation. This could be achieved through a standardised definition and taxonomy of error, the development of a medicines reconciliation quality assessment framework, increased undergraduate and post-graduate education, improved patient engagement, better utilisation of information technology and improved safety culture.

Optimizing meaningful engagement of older adults with multimorbidity and their caregivers as partners in health care research / Background: The importance of engaging older adults (> 65 years) with multimorbidity and their caregivers as partners in health care research has been widely recognized. Inclusion of patients as research partners has resulted in largely positive effects. However, little is known about how best to engage and support them in this role. The objective of this study was to examine how to optimize meaningful engagement of older adults with multimorbidity and their caregivers as research partners. Methods: The research objective was addressed using the persona-scenario method. Study participants were older adults with previous experience as a research partner or a research participant. Participants worked in pairs to create a persona and a scenario about how their persona(s) was involved on the research team. Analysis was conducted in two phases: (a) identification of themes, subthemes, and codes using a qualitative descriptive approach, and (b) interpretation of themes and subthemes into design specifications (actions and products). Results: Four persona-scenario sessions were held with 8 patient participants. Three major themes emerged from the data: (a) recruitment of patient or caregiver research partners (PCRPs); (b) planning for meaningful engagement; and (c) establishing collaborative relationships. These major themes contained 15 corresponding subthemes, and design specifications (52 actions and 37 products). Findings highlight key factors influencing the engagement of older adults with multimorbidity and their caregivers as research partners, such as the need for: early engagement of PCRPs; clarification of PCRPs’ roles and responsibilities; a flexible patient-centred approach to PCRP involvement; identifying and addressing barriers to their engagement (e.g., caregiving support, transportation); training about research; and continued dialogue and feedback to clarify roles and manage expectations. The results are important for identifying ways to promote greater patient engagement in research and ensure that the research reflects the needs of the patients it strives to serve. / Thesis / Master of Science (MSc) / The importance of engaging patients with multimorbidity and their caregivers as partners in health care research has been widely recognized. However, little is known about how to best engage and support them in this role. The objective of this study was to examine how researchers can best engage and support older adults with multimorbidity and their caregivers as research partners in health care research teams. The persona-scenario method was used for participants to create fictional stories. These stories were analyzed to shed light on specific strategies that can support older adults and their caregivers as partners on health care research teams, such as a patient-centred approach, identifying and addressing barriers to engagement, and clarifying roles and responsibilities on the research team. The results from this study can be used to inform research, policy, and education on supporting older adults with multimorbidity and their caregivers as research partners.

This thesis adds to a stream of research suggesting that healthcare can be more patient centered and efficient by redefining the role of the patient from a passive receiver to a more active and collaborative participant. This may relate to healthcare provision (Anderson and Funnell, 2005; Berry and Bendapudi, 2007; Bitner and Brown, 2008; McColl-Kennedy et al., 2012; Nordgren, 2008) and innovation (Bate and Robert, 2006; Groene et al., 2009; Longtin et al., 2010). Through research initiative containing four healthcare units and 68 patients, the present thesis combines healthcare research (e.g., Anderson and Funnell, 2005; Nelson et al., 2002) with service research (e.g., Grönroos, 2006; Vargo and Lusch, 2008, 2004) to explore three aspects of patient involvement and service innovation. Firstly, the concept of patient involvement itself is investigated through an extensive literature review of empirical research on patient involvement. A model describing the antecedents, forms and consequences of patient involvement is proposed. What value is, and how patients can co-create value is discussed from the perspectives of healthcare research and service management thought. Secondly, the thesis proposes a diary-based methodology for involving patients in service innovation. My colleagues and I developed the methodology in collaboration with the participating care providers and applied it in practice. We used the experiences we gained from the project and the contributions from the patients to examine the opportunities for user involvement in service innovation. The participants contributed with ideas and insights stemming from their experiences in their contact with healthcare and other resources. We suggest the following three ways of learning from the collected data: As ideas for improvements; through summary reports to illustrate other quantitative data; and as narratives to promote change. Thirdly, the thesis explores patients’ motivations to participate in service innovation, a hitherto unexplored field. Through an analysis of patients’ contributions and interviews with participants we found that there are a number of factors that motivate patients to participate and that participation is perceived as a social- and meaningladen event. Patients derive psychological well-being and support from participation, but disease was sometimes a barrier to participation. This thesis elaborates on how the most motivated users can be involved in service innovation, applying thinking from the lead-user methodology to a healthcare setting. Overall, the thesis explores patient involvement from new perspectives and, by doing so, adds to our collective efforts to improve healthcare. / Denna avhandling syftar till en mer patientcentrerad och effektiv sjukvård. Den bidrar till en strömning inom forskningen som menar att sjukvården kan förbättras genom en omdefiniering av patientrollen – från en roll som passiv mottagare till aktiv, samskapande aktör. Patienten kan ses som en resurs både i utförande av vården (Anderson and Funnell, 2005; Berry and Bendapudi, 2007; Bitner and Brown, 2008; McColl-Kennedy et al., 2012; Nordgren, 2008) och inom utveckling och innovation (Bate and Robert, 2006; Groene et al., 2009; Longtin et al., 2010). Avhandlingen kombinerar sjukvårdsforskning (Anderson and Funnell, 2005; Nelson et al., 2002) med tjänsteforskning (Grönroos, 2006; Vargo and Lusch, 2008, 2004) i en forskningsansats som innefattar fyra vårdenheter och 68 patienter. Den utforskar tre aspekter av patientinvolvering och tjänsteinnovation. För det första undersöks konceptet patientinvolvering genom en omfattande litteraturöversikt av den empiriska forskningen på området. Översikten leder till en konceptuell modell för att beskriva patientinvolvering: vad dess förutsättningar är, vilka former av patientinvolvering som finns och vad patientinvolvering leder till. Avhandlingen diskuterar även begreppet värde och hur patienter kan samskapa värde, utifrån perspektiv inom vårdforskning och tjänsteforskning. För det andra föreslår avhandlingen en dagboksbaserad metod för att involvera patienter i tjänsteinnovation. Deltagande patienter skriver i denna metod ner sina ner sina idéer och upplevelser varje dag under två veckors tid. Mina kollegor och jag utvecklade metoden i samarbete med personal från de deltagande vårdenheterna och applicerade den på praktiken. Erfarenheterna från projektet och de deltagande patienternas bidrag användes för att utforska möjligheterna med patientinvolvering i utvecklingen av vården. Vi föreslår tre sätt att lära sig från det insamlade materialet: som direkta idéer till förbättringar; summerat till rapporter för att ge kvalitativ förståelse av andra kvantitativa mätningar; och enskilda patienters berättelser kan användas för att förmedla patientperspektivet i organisationen och mana till förändring. För det tredje undersöker avhandlingen patienters motivation att bidra till tjänsteinnovation, ett hittills outforskat område. Genom en analys av patienters bidrag och genom intervjuer med deltagare finner vi att patienter motiveras att delta av en rad olika anledningar, från ett behov av upprättelse till en glädje av att utföra aktiviteten. Deltagandet uppfattas som en social och meningsfull händelse. Patienter upplever psykiskt välbefinnande och stöd genom att delta, även om sjukdom kan vara ett hinder i deltagandet. Avhandlingen undersöker även hur de allra mest motiverade patienterna kan identifieras och inkluderas i tjänsteinnovation, detta inspirerat av lead  user-metoden (von Hippel, 1986). Sammantaget utforskar avhandlingen patientinvolvering och tjänsteinnovation från nya perspektiv och bidrar därmed till våra gemensamma ansträngningar för att förbättra vården och patienters välbefinnande.