Needs-identified dementia health care service in nursing homes

The topic of this PhD project is patient and public involvement in health services research, including the James Lind Alliance (JLA) approach, as well as a focus on what matters to nursing home residents regarding the nursing home as a home and an institution. This study aims to (1) summarise study descriptions of the JLA approach to the priority setting partnership (PSP) process and how this process is used to identify uncertainties and develop lists of Top 10 research priorities; (2) describe the reflections of caregivers of people with dementia on the possibility of participating in the JLA?s PSP process, for both themselves and the recipients of their care, as well as explore barriers to and facilitators of their participation; and (3) explore what matters to nursing home residents with dementia based on their perceptions of nursing home as their home and an institution. The study design in this thesis consists of three approaches, which are as follows: (1) a scoping review, (2) data from focus groups and (3) data from individual qualitative interviews. In the scoping review, data from 37 studies were included. Four focus groups were performed with 36 caregivers of people with dementia, as well as unstructured individual interviews with 35 people with dementia living in nursing homes. Data from the focus groups and individual qualitative interviews were analysed using thematic analysis. The scoping review revealed 37 studies published from 2010?2018. The JLA approach participants were patients, caregivers and healthcare professionals, aged 18 years and older. The number of submitted uncertainties varied across the included studies, from 323 submitted by 58 participants to 8,227 submitted by 2,587 participants. No studies reported difficulties in developing their lists of top 10 research priorities. The caregivers of people with dementia highlighted, in the focus group, the importance of creating empowering teams where all voices are heard during the PSP process. The overall results indicated that caregivers are willing to participate in a PSP processes and that they thought it was important for people with dementia to participate in these processes as well, even if some might need extra support to do so. The caregivers also identified the need for research topics that influence policy development, healthcare services and their everyday lives. The statements of the nursing home residents regarding what was important when the nursing home was their home and an institution. The analysis resulted in one overarching theme, ?tension between the experiences of a nursing home being a home and an institution?. The residents found it challenging to create relationships with fellow residents and appreciated having single rooms with personal decor that enhances a sense of connectedness. The transition between the old home and the new home was reported as difficult to accept because of few possibilities for doing meaningful everyday activities. Furthermore, nursing home residents suggested that, with respect to the nursing home being their institution for healthcare, there was a mismatch between the goal of person-centred care and everyday routines in healthcare. The analysis resulted in an overarching theme, ?mismatch between the goal of person-centred care and everyday routines in healthcare?. The residents wanted healtcare professionals to have more time to sit down and talk with them. The residents felt that their own needs often disappeared in the daily nursing home routine. Healthcare in nursing homes must focus more on how to enable the residents to participate in daily activities and sustain their personhood as well as their sense of self. The scoping review indicates that the JLA based PSP process makes a useful contribution to identifying research questions in healthcare services. Caregivers of people with dementia stated that both caregivers and the people with dementia are able to contribute to the PSP process when given sufficient support. What mattered to nursing home residents regarding the nursing home as a home was the feeling of being safe, having single rooms, and having possibilities for meaningful relations and opportunities to continue some activities that they did in their previous home. The residents? reports indicated a mismatch between the goal of person-centred care and everyday routines in healthcare services. Healthcare services in nursing homes should focus on how to operationalise the person-centred dimensions of healthcare.

De potensielle virkningene og effektene basert på dette phd prosjektet er at vi har fått belyst at personer med demens kan delta i en forskningsprosess dersom det blir tilrettelagt for deltakelse. Det handler om at forskerne snakker et språk deltakerne forstår, de ønsker å bli tatt på alvor og ikke være et alibi for forskningen. De ønsker en reell brukermedvirkning, slik at de kan være med å bidra til bedre helsetjenester for personer med demens og deres pårørende. Resultatene fra dette phd prosjektet kan overføres til alle type prosjekter i kommunene hvor det kreves brukermedvirkning. Vi har fått kunnskap om hva som er god brukermedvirkning sett ut i fra et brukerperspektiv.

Etterspørsel etter behovsidentifisert forskning er en internasjonal trend som blant annet ble initiert av en artikkelserie i The Lancet i 2014 som hevdet at 80% av helseforskning er 'waste'). I Norge har Helse og omsorgsdepartementet uttrykt et ønske om økt bruk av virkemiddelet behovsidentifisert helseforskning.Begrunnelsene basert på nasjonale og internasjonale forhold er at dagens forskning i for liten grad svarer på brukernes, praksisfeltets, befolkningens og myndighetenes behov. Dette prosjektet vil ta utgangspunkt i modellen for 'Priority Setting Partnerships' for å identifisere kunnskapshull og aktuelle forskningsspørsmål av relevans for personer med demens på sykehjem.Det er nedsatt en tverrfaglig prosjektgruppe med representanter fra alle samarbeidspartnerne: kommunen, Utviklingssenteret, forskningsmiljø ved HIOA, Akershus Universitetssykehus HF og Nasjonalforeningen for folkehelsen. Denne prosjektgruppen, inkludert veiledere og stipendiat har satt seg grundig inn i «Priority Setting Partnerships»og fremgangsmåten for å involvere brukere i prioritering av forskning.Videre har prosjektgruppen gjennomført et kort kurs/workshop arrangert av tidligere leder av James Lind Alliance som også vil være rådgiver for prosjektet videre. Prosjekt skal bidra til brukerrelevant forskning i sykehjemmene knyttet til:(1)Forskningsområder og tiltak som beboere og pårørende mener er viktige for å sikre at mennesker som har demenssykdom og deres pårørende får gode og brukerorienterte tjenester av god kvalitet(2) Kunnskap og ressurser som sykehjemansatte mener mangler for å gi gode og brukerorienterte tjenester til beboere med demens og deres pårørende (3) Områder og tiltak som kommuneansatte mener er viktige for å sikre at mennesker som har demens sykdom og deres pårørende får gode og brukerorienterte tjenester av god kvalitet og blir ivaretatt på en god måte; og (4)Utvikle forskningsbasert brukerrelevant kunnskap basert på prioriterte behovsidentifiserte forskerspørsmål.