‘What matters to you?’— a qualitative study on the views of nursing home residents with dementia regarding the health care they receive

Aims and Objective: This study's aim is to examine what matters to nursing home residents with dementia by exploring their perceptions of nursing home health care through the conceptual lens of person - centred care . Background: Dementia is a major contributor to nursing home placement. To under stand the meaning of living with dementia, the inclusion of persons with dementia in research studies is essential. Methods: In total, 35 in- depth qualitative interviews were conducted with people who have dementia and live in nursing homes. A thematic analysis was applied to analyse the data. Checklist for qualitative studies: Consolidated Criteria for Reporting Qualitative Results: The analysis revealed one overarching theme with four sub- themes. Different matchings of person - centred care and routines in health care being the overarching theme. The four sub- themes were as follows: (a) understanding of the interplay be tween disabilities and ageing; (b) participating based on one's own preferences and needs; (c) incongruence between the person with dementia's preferences and needs and health- care support; and (d) working conditions: the relationship between res idents and health- care providers. Despite the substantive focus of researchers on person- centred care and the positive impact on the nursing home health care of those who receive it, the results showed that nursing home residents still want more person- centred care. Conclusions: The results indicate that the incongruence between general routines and individual preferences and needs, as well as the demand to operationalise the person- centred dimensions of health- care behaviour in nursing homes, must be re -solved. Health care in nursing homes must focus on enabling residents to participate in daily activities and sustain their personhood and sense of self.


| BACKG ROU N D
A person with dementia experiences a decline in memory, problemsolving, language and skills that affects their ability to perform everyday activities. Dementia is a main contributor to nursing home placement (Alzheimer's Association, 2019; Garcia-Ptacek et al., 2017). High-quality health care delivered by health-care providers via a municipal service is important for people with dementia (Garcia-Ptacek et al., 2017). The World Health Organization (2018) defined quality health care as effective, efficient, integrated, personcentred, equitable and safe. Milte et al., (2018) presented five key domains significant for cognitively impaired residents in nursing homes: feeling at home, own room, care staff being able to spend enough time with residents, feeling at home in shared spaces, and staff being very flexible regarding care routines. Providing care for people with dementia is particularly complex and challenging, and here, the residents' preferences and needs are critical. In research, including the views of people with dementia is necessary to secure relevant findings (Kelly et al., 2015). Edberg et al., (2008) mentioned the difficulties associated with care of people with dementia, referring to environmental factors such as the system, community attitudes, other staff and residents' family members as contributors.
Regarding care of people with dementia, three main sources of strain have been identified: being unable to reach the person beyond the facade of dementia, difficulty protecting patients and having to balance competing needs (Edberg et al., 2008(Edberg et al., , 2015. Quality of health care and well-being improve with a positive attitude that focuses on individual patients' abilities (Gerritsen et al., 2019).
To understand life with dementia, it is essential to include persons with dementia in research studies. With their perspectives, important values and unique insights highlight how people with dementia experience living with this disease. Providing a person with dementia, the opportunity to participate in relevant research is also essential to address their vulnerabilities (Alzheimer Europe, 2019).
Individuals with cognitive impairment can provide valuable information about their care experiences (Bartlett et al., 2019). According to Bolt et al., (2021), many studies have focused on how people with dementia not living in nursing homes feel about their futures and being cared for by others and how to adjust care provision to match their standards. However, research is needed with respect to those living with dementia in nursing homes and their perspectives on received health care. Bolt et al., (2021) stated that health-care providers should build equal and trustful care relationships with persons with dementia and their family caregivers; one should acknowledge ('see') the person with dementia and become well acquainted with them. Research based on the question 'What matters to you?' will provide important knowledge in the field of dementia care.

| Conceptual framework as a lens for understanding: Person-centred care
A person-centred approach is important to improving health care in nursing homes. Nicholson (2020) stated that there is a poor understanding of the complexities of living with dementia and the multifactorial interventions needed to provide holistic and effective support. A combination of a biopsychosocial approach with personcentred care (PCC) principles in health care for people with dementia has been called for (Nicholson, 2020). Kitwood (2007) criticised the biomedical approach to care for people with dementia for showing an insufficient understanding of individuals' mental and emotional states. Kitwood (2007) stated that a humanistic, ethical approach in which the illness is not the primary focus is vital to patients. Kitwood (1998) provided the groundwork for supporting the experience of sustained personhood. Naldemirci et al., (2017) stated that PCC care is grounded in the concept of personhood; it focuses on how people are recognised as unique individuals. Washburn and Grossman (2017) suggested the need for a relationship between the health-care provider and the care recipient-out of respect for the Relevance to clinical practice: Based on the residents' statements, the results contribute to the fields of dementia education, health-care provision and policy-making and may be used to achieve person-centredness and governance.  (Ocloo et al., 2020). Barry and Edgman-Levitan (2012) proposed the question 'What matters to you?' as well as 'What is the matter?' The question 'What matters to you?' can be used for personal goal setting, serving the ideal that-in the context of this study-the nursing home residents are given opportunities to determine and strive towards personal goals (Olsen et al., 2020

| Study design and setting
This article is one of two from a larger qualitative study on what matters to nursing home residents with dementia regarding the nursing home as a home and as an institution for health-care services.
The authors refer to a previous publication from this larger study: 'What Matters to You' When the Nursing Home is Your Home. A Qualitative Study on the Views of Residents with Dementia Living in Nursing Homes (Nygaard et al., 2020). While the aforementioned article focuses on the residents' perspectives of nursing homes as their home, this new article highlights what matters to nursing home residents with dementia by exploring their perceptions of nursing home health care through the conceptual lens of person-centred care. The study takes a qualitative design that is hermeneutical perspective based. According to Gadamer (2004), understanding is influenced by prejudices, and the present must be understood in light of the past. Our understanding of an experience is a fusion of the present and past based on the polarity between familiarity and strangeness (Brinkmann & Kvale, 2015). Analysis of the interviews was based on a hermeneutical perspective, which guided the interpretation of the residents' responses based on their experiences (Gadamer, 2004).
This study aims to improve the understanding of dementia and its impact on individuals, health-care providers, families and the broader community (Carmody et al., 2015;Eriksen et al., 2016).
Qualitative approaches can capture the interest of health-care providers, who have been 'underexploited' as a way to improve care.
Because several studies recommended using a qualitative design to address issues for those experiencing dementia, qualitative interviews are used. This study was conducted in nursing homes (n=3) in a large municipality in Norway. All three nursing homes have units dedicated to people with dementia, which is where the study's residents lived. The residents did not express similar experiences with the nursing homes as their health-care institution. The differences between the nursing home facilities exist mainly because when they were built. This manuscript was prepared in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) (Tong et al., 2007) https://www.equat or-netwo rk.org/repor tingguide lines/ coreq/ (Supplementary File 1).

| Residents and recruitment
In total, 35 nursing home residents all diagnosed with dementia participated, representing a convenience sample (Ilker et al., 2016).
Ethical guidelines require that either the residents or their caregivers be able to understand the written and oral information about the study and be willing to participate in it (World Medical Association, 1964).
The inclusion criteria were being diagnosed with dementia, being long-term residents and being able to express themselves.
The exclusion criteria were short-term stay. The participants were recruited by the manager of the nursing homes, and the team leaders in each unit identified potential residents for inclusion. The residents and their caregivers were informed about the study' goals and asked whether they wanted to participate. The residents provided oral and written consent, and their caregivers verbally agreed to residents' involvement. Given the severity of cognitive impairment in three of the participants, written consent was obtained from their caregivers. Two residents declined. One spouse stated that her husband was unable to express what mattered to him. In two interviews (P23 and P32), the residents' daughters were present because they were visiting. The daughters remained quiet during the interviews. The terms participant and resident are used synonymously, and in the current study, resident refers to nursing home residents. The quotations from the residents illustrate their experiences of the phenomenon of interest. Quotes are presented in italics followed by a number referring to which of the 35 residents gave the quote. Malterud et al., (2016) proposed the concept of information power as a guide for adequate sample sizes for qualitative studies: the more information the sample holds that is relevant to the actual study, the fewer residents are needed. Malterud et al., (2016) suggested that information power address sample specificity, use of established theory, dialogue quality and strategy of analysis. All available residents were interviewed, and the sample size yielded sufficient information power based on the study's aim, the sample specificity and the quality of the interviews (Malterud et al., 2016).
Saturation from having sufficient information power was achieved before the last four interviews, which yielded no new information.

| Data collection
The first author, who conducted the interviews, in addition to running PhD has more than 20 years clinical practice as a nurse in dementia care. The interviews were conducted in the residents' rooms, where they spoke freely and felt safe. The first author introduced herself and the project before starting the interviews, and the first author had not met any of the residents previously. Unstructured, in-depth, qualitative interviews were conducted in the form of an extended conversation between the researcher, first author and residents. The interview guide consisted of the following three main questions: (a) What is a nice day for you in a nursing home? (b) What matters to you regarding the health care you receive? (c) What must the health-care provider be able to do to meet your needs? Or do you have any suggestions for changes in the unit? The researcher had a general topic in mind for the unstructured interviews, related to the main interview question, 'What matters to you (regarding the health care you receive)?' Additionally, the first author formulated specific questions as the interviews proceeded in response to what the residents said to encourage them to answer at length and in vivid detail (Rubin & Rubin, 2012). Follow-up questions were added to explore topics related to the PCC framework. The follow-up questions were about whether the residents perceived health care as being individualised, respectful, allowing for the negotiation of care and offering them choices and involvement in health-care decisions of importance to them. Throughout the interviews, the first author observed how the residents were feeling and whether they became uneasy and/or expressed that they wanted to end the interviews. The interviews were conducted between October 2018 and April 2019, typically in the morning or early afternoon. The interviews ranged from six to 60 minutes in length, averaging 44 minutes. Only one interview lasted for six minutes; the rest were 36 minutes or more.

| Data analysis
The first author audio-recorded the interviews and then transcribed them verbatim. The field notes made after the interviews were not included in the analysis. The data were subjected to a thematic analysis, a method developed by Braun and Clarke (2006) to identify, analyse and report themes and describe patterns across qualitative data (Braun & Clarke, 2006). The authors-all female and, at the time, included three nurses and a physiotherapist-made their preunderstandings and existing knowledge about the context explicit. All authors have extensive clinical and/or research experience within the field of health care for older people and people with dementia. Accordingly, the first author had a preunderstanding of everyday life in a nursing home.
Furthermore, the researcher's preconception was that the quality standards of care for nursing home residents were being poorly met. All the authors' experiences meant that there were probably certain things that 'blinded' to; however, the authors were also well positioned to understand the context and perform the study (Beedholm & Frederiksen, 2019;Berger, 2015). For example, the research question was based on an identified knowledge gap and on personal interest. The first author did not share her preunderstandings with the residents, allowing open discussion of both positive and negative experiences. Trustworthiness was strengthened through established theory and quotations. To promote reflexivity, in an early phase, the first author wrote a 'researcher identity memo' to clarify her preconceptions. This memo was the beginning of a reflexive mapping process that continued throughout the research process. In this 'diary', the researcher wrote her thoughts, observations, methodological considerations and decisions, including the rationale and logic behind them and reflections on situations in terms of her own interests or values (Berger, 2015). Awareness of nursing home procedures and knowledge of the preferences and needs of residents and caregivers helped the researcher better understand the context. The researcher was open about her background as a nurse and her professional work experience in the field. The use of theory may have helped the researcher maintain a distant and reflected approach to the data; however, it could have shrunk the researchers' theoretical perspective. The authors attempted to present the analysis process transparently based on Braun and Clarke (2006) six phases of thematic analysis: (a) Become familiar with the data.
All four authors separately read and reread the transcripts and noted coding; then, in a face-to-face meeting, the authors discussed, compared and shared their overall understandings of the data to determine its essential meanings. (b) Generate initial codes. The authors separately generated initial codes on the transcripts manually and then met to compare their codes and construct a mutual coding tree (see Table 1). No software was used for the thematic analysis, as all the co-authors wanted to read the manuscript several times when coding and they wanted transparency and closeness to the data as well as to write and link memos to assist with the audit trail. The authors' choice to not use software was based on the reflection presented by John and Johnson (2000). (c) Search for themes. The authors identified central quotations and inserted them into a common matrix under the following headlines: quote, the authors understanding and sub-theme (see Table 1). (d) Review, compare and discuss the themes. The research group met, and the first author compared the findings across all groups and explored the similarities and differences between the researchers' answers on the same topics in dialogue with the co-authors. (e) Define and name themes.
This involved a back-and-forth process of mutual reflections by the researchers involved in the coding and further discussions of the findings with the first author. This produced the themes presented in the results. (f) Produce a report. The first author initiated writing up the thematic findings, and the other authors provided ongoing commentary (Braun & Clarke, 2006).
To ensure trustworthiness and prevent threats to validity, the authors used the 'trustworthiness' criteria described by Lincoln and Guba (1985): credibility, transferability, dependability and confirmability. Credibility was ensured through unstructured, in-depth qualitative interviews, a detailed and descriptive analysis of the data and quoting the residents' responses to substantiate the findings, thus enhancing their transferability. To increase dependability, the transcripts were reviewed several times and then coded and checked by each author. Interpretations were also based on a consensus among the authors. Confirmability was reached by substantiating each emergent sub-theme with quotes extracted from the residents' statements.

| Funding and ethical considerations
The Regional Ethical Committee considered the current study to be

| RE SULTS
In total, 35 residents were included. Table 2 shows the background characteristics of the residents.
In the analysis, one overarching theme and four interrelated subthemes emerged (Table 3) When you go to bed, you have to pee half the night.
The routines at the nursing home could also be a barrier to the perceived quality of care. Some residents wanted to decide when to get up in the morning, for example. One interviewee said the following: The residents focused on how they were recognised as unique individuals rather than patients; they wanted to be cared for as a person.
One resident wanted to help set the

| Incongruence between the person with dementia's preferences and needs and healthcare support
It seemed important that the health-care providers combine interpersonal competences and practical skills in their daily practice to meet the compound, complex and very different preferences and needs of the residents. The incongruence between the residents' preferences and the health care they received has an important impact on the residents' well-being. The health-care providers reported they would 'work separately' to cope with dementia rather

TA B L E 3 Overview of the overarching theme
Overarching theme Different matchings of person-centred care and routines in health care

Sub-themes
Understanding of the interplay between disabilities and ageing Participating based on one's own preferences and needs Incongruence between the person with dementia's preferences and needs and health-care support Working conditions: the relationship between residents and healthcare providers than 'working together'. One resident expressed that little attention was paid to how it felt to be naked in front of the health-care providers when receiving help with showering:

| Working conditions: the relationship between residents and health-care providers
Several residents highlighted the importance of developing a relationship with and confidence in the health-care providers, as well as health-care providers' knowledge about each resident. The residents observed that the health-care providers were busy, so they did not want to disturb them unnecessarily. At the same time, having proper access to health-care providers was identified as a significant need for many residents. One expressed this need as follows: The girls are so kind. I ask for something, then they say The residents saw that the health-care providers were busy, so they tended to make allowances for them. One resident said the following: Other residents were very pleased, and one said the following: The health-care providers have earned a gold medal. (P16)

| DISCUSS ION
The current study aimed to examine what matters to nursing home residents with dementia by exploring their perceptions of nursing home health care through the conceptual lens of person-centred care.
The results of this study show that health care in nursing homes must follow a more person-centred approach, even though some residents expressed satisfaction with the health care they received. Ebrahimi et al., (2020)  to express their needs and feelings because they feared the consequences of the health-care provider. The residents reported that they missed the experience of being seen and heard and relayed that their needs and desires were overlooked, exemplified by the statement from a resident whose need for hearing aids was not prioritised by health-care providers. The results in the current study might indicate that the residents asked for more emphatic skills in health care. Eklund et al., (2019) stated that respect means the person or patient is approached with a respectful attitude, which includes respecting beliefs and values as well as supporting dignity by, for example 'respecting patients' choices' (Eklund et al., 2019). Some residents in this study talked about lost dignity as nursing home residents, although they were proud of their earlier achievements before attending their nursing home. They wanted health-care providers to be curious about their achievements and life before they became nursing home residents, and they asked for more respect based on their beliefs, values and choices. The residents missed the possibilities of enjoying a beer daily, and they referred to the negative experience when little attention was paid to their discomfort regarding their nakedness before health-care providers when receiving help with showering.
Engagement in patient-centred care means to give one's time to the person or patient, not only the allocation of time in an objective sense, but also to be present and committed (Eklund et al., 2019).
Indeed, health-care providers must spend the time necessary to listen to and understand patients' preferences and needs (Eklund et al., 2019). The residents' perception of health-care providers' heavy workload might indicate dilemmas that often occur when healthcare providers fulfil professional tasks while maintaining relationships and respecting residents' needs and preferences (Olsen et al., 2019). In the interviews, the residents repeatedly stated the healthcare providers were busy. Many felt that they could not ask for more help, because someone else always took priority. The residents expressed how it was strenuous to repeatedly describe to new healthcare providers how to carry out relevant procedures for them. The residents found that some health-care providers performed tasks as expected but did not provide emotional support, which is essential to PCC. This might correspond to what Nakrem et al., (2013) discussed regarding the difficulty health-care providers in nursing homes face when required to meet the demands of performing tasks while providing emotional support.
Relationship is according to Eklund et al., (2019)  According to Kitwood (1997), in line with the results in this study, Last but not least, the theme coordinated care means that care is planned and coordinated across health-care providers, time and situations as well as integrated across the health system, medical and supportive services (Eklund et al., 2019). The results in the current study give little information with respect to the theme of coordinated care. However, the residents wanted that the daily care was coordinated in a way that make it possible with smaller group of health-care providers, since they experienced difficulties with know who is who from the other. In addition, the residents called for the health-care providers to coordinate the daily care to make it possible for health providers to sit down and have time to listen to want matters to them regarding their preferences and needs for health care.
As shown in the results in the current study, the components of PCC may be differently constructed and valued by various stakeholders and residents for disparate reasons. PCC is viewed as good, but it is also a means of achieving more efficient health care.
However, residents and health-care providers may have varied opinions about which elements or outcomes matter the most (Dwamena et al., 2012), as shown in this study.

| Strengths and limitations
Data describing people's experiences of their own situations always involve multiple meanings that depend on subjective interpretations; this is a strength of this study. The large number of participants is another strength. Through a thematic analysis, the four authors engaged in valuable dialogue, seeking agreement regarding the data. Patient groups, such as those from ethnic minorities, were not included in the sample, and the residents were not asked to provide feedback on the results. However, the inclusion of several researchers in a reflexive analytical process should enhance a study's trustworthiness (Lincoln & Guba, 1985). No software was used for the thematic analysis.

| CON CLUS IONS
The main challenge regarding health-care quality in nursing homes is finding a balance between the general routine and the residents' individual preferences and needs. The results indicate that healthcare providers may not have the necessary temporal resources to deal with the key aspects of the patient experience because they are affected by wider organisational systems and national forces.
Despite health-care providers' substantive focus on PCC, the results show that nursing home residents are asking for more PCC. Health care in nursing homes should enable residents to participate in daily activities, support decision-making and sustain their personhood and sense of self.

| RELE VAN CE TO CLINI C AL PR AC TI CE
The practices of health care should consider including specific professional approaches to build relationships and engage residents in activities. The results indicated that health care in nursing homes must follow a more person-centred approach allowing the negotiation of health care based on what matters to the residents. Healthcare providers should give residents a voice while caring. The present study can inform education, the health profession and policy, as well as enhance service delivery and governance.

| COMPE TING INTERE S TS
The authors declare that they have no competing interests.

ACK N OWLED G EM ENTS
The four authors would like to thank the 35 residents who participated in the interviews and the nursing home team leaders who helped recruit the residents.

CO N FLI C T O F I NTE R E S T
There are no conflicts of interest in related to this study.

AUTH O R S' CO NTR I B UTI O N S
All authors designed the study. The first author coordinated the project and conducted the interviews and was responsible for analysing the data and writing the initial draft of the manuscript. All the authors participated in interpreting the data and drafting the manuscript. The four authors contributed to the data analysis and interpretation and critically revised the manuscript to enhance its content. The four authors read and approved the final draft of the manuscript.

E TH I C A L A PPROVA L
This study was registered by the Norwegian Centre for Research Data,No. 54978.

CO N S E NT FO R PU B LI C ATI O N
The consent form that each resident signed included a statement explaining that the data would be presented in a way that concealed their identities.

E TH I C A L R E S TR I C TI O N S
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.