Themes Related to Experienced Quality of Care in Nursing Homes From the Resident's Perspective: A Systematic Literature Review and Thematic Synthesis.

Background: The culture change from task-centered care to person- and relationship-centered care has resulted in the resident's voice gaining importance when assessing experienced quality of care in nursing homes. This review aimed to identify which factors contribute to experienced quality of care in nursing homes worldwide from the resident's perspective. Method: A systematic literature review and thematic data synthesis were performed. The databases PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycInfo, and Business Source Complete were searched to identify qualitative studies aimed at retrieving factors related to residents' experienced quality of care in nursing homes. Only studies in which residents themselves were interviewed were included.
Results: This literature review included 27 publications covering 14 countries. Thematic analysis revealed three overarching themes related to residents' care experiences: (a) The nursing home environment consisted of the physical environment and caring environment, (b) individual aspects of living in the nursing home consisted of personhood and coping with change, and (c) social engagement consisted of meaningful relationships and care provision. Discussion: To achieve high experienced quality of care in nursing homes, residents' care experiences need to be assessed and used in quality management.

Background

Worldwide, there is an increase in the number of older adults (60+ years) paired with an increasing demand for long-term care services (Smith & Feng, 2010; World Health Organization, 2015). Nursing homes aim to care for the most frail and dependent older adults in society, by providing 24-hr functional support and care for people with complex health needs, increased vulnerability, and who need support with activities of daily living (Sanford et al., 2015). Nursing home characteristics differ between and within countries; for example, some only provide long-term care, whereas others may also provide short-term rehabilitation care.

There is a wide variety in the quality of care between nursing homes (OECD/EU, 2013). This can partially be explained by the strain on resources due to an increase in aging population, increasing complexity of residents’ care needs, challenges in staff composition, and funding (Comondore et al., 2009; Hicks et al., 2004; Miller et al., 2010; Nakrem et al., 2011; Zimmerman et al., 2014). However, in addition, residents have different expectations of living in a nursing home due to the culture change from task-oriented to person- and relationship-centered care (Koren, 2010). Person-centered care focuses on residents being unique with their own needs, preferences, and relationships, which henceforth contributes to quality of care (Koren, 2010; Nakrem, 2015).

Whereas quality of care in nursing homes is traditionally assessed with clinical indicators, such as falling incidents or pressure ulcers, the culture shift has resulted in the need to assess social and emotional indicators of care too, such as perceived care experiences and resident satisfaction (Castle & Ferguson, 2010; Zimmerman et al., 2014). These outcomes are usually assessed with closed-end questionnaires that are often completed by residents’ proxies if residents have cognitive impairment and difficulty communicating; however, proxies do not always know what matters most to their loved ones (Castle, 2005; Reamy et al., 2011; Triemstra et al., 2010). To assess and improve quality of care, there is a need to understand residents’ care experiences by having in-depth conversations with the residents themselves (LaVela & Gallan, 2014; Wolf et al., 2014).

Previous qualitative research has focused on specific residents’ experiences such as transitions to the nursing home or the mealtime experience (Richards & Hagger, 2011; Watkins et al., 2017). A recent review identified seven qualitative studies of residents’ experiences of being cared for in nursing homes (Vaismoradi et al., 2016). The main findings related to residents wanting to retain the meaning of being alive in a homelike place that delivers person-centered care. This review was narrowed to the concept “being cared for” and recommended future reviews on residents’ experiences to include a broader spectrum of concepts as experienced quality of care is a process that can be influenced by multiple concepts. Therefore, the aim of this systematic review was to identify which factors contribute to experienced quality of care in nursing homes worldwide from the resident’s perspective.

Method

This systematic review and synthesis of qualitative research was reported according to the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) statement (Tong et al., 2012).

Databases and Search Strategy

In April 2019, PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycInfo, and Business Source Complete were searched and snowballing was performed by checking reference lists of key articles. The search strategy combined three key terms and their synonyms: “experienced quality of care” AND “resident perspective” AND “nursing home”. The search string for PubMed (Box 1) was adapted accordingly for each database (full searches are available on request). A predefined filter for qualitative studies and filters for scientific articles published in English or Dutch were added (Flemming & Briggs, 2007; Health Sciences Library University of Washington, 2019).

Box 1.

Search String PubMed.

([(Quality AND Care] OR (Experience*) OR (Perception*) OR (Perceive*) OR (View*) OR (Opinion*) OR (Satisfaction) OR (Quality Indicator, Health Care[MESH]) OR (Narrative Medicine[MESH]) OR (Patient Satisfaction[MESH]) OR (Perception[MESH]) OR (“Process Assessment (Health Care)[MESH])) AND ((Resident) OR (Residents) OR (Client) OR (Clients) OR (Patient) OR (Patients) OR (Elderly) OR (Senior) OR (Seniors) OR (Aged[MESH])) AND ((Nursing Home*) OR (Residential Facilit*) OR (Long Term Care) OR (Assisted Living) OR (Residential Care) OR (Housing for the Elderly) OR (Care Home*) OR (Institutional*) OR (Homes for the Aged) OR (Special Care Unit*) OR (Residential Facilities[MESH])))

Eligibility Criteria and Study Selection

Table 1 presents the predefined selection criteria. Qualitative studies reporting themes related to experienced quality of care in nursing homes, from the resident’s perspective, were eligible for inclusion. Themes needed to be identified bottom-up from the collected data. Studies focusing on only one factor of experienced quality of care such as the transition to the nursing home or the mealtime experience were excluded as these studies go into too little detail about the overall experienced quality of care.

Table 1.

Selection Criteria.

Reason	Include	Exclude
Population	Residents living in long-term care settings for older people	Children, adults aged <65.
Perspective	Resident	Family, caregiver, organizational.
Context	Long-term care settings for older adults receiving 24-hr care, including public and private nursing homes, residential care settings, assisted living	Hospital care, home care, mental care, acute care, short-term care.
Topic	ExperiencesQuality of care	Specific concept related to experiences or quality of care, that is, mealtimes, dignity, palliative care, quality of dying, transitions, quality of life, experiences of having a specific disease, and so on.Interventions.
Study design	Qualitative studies	Instrument validation, comments, editorials, briefs, theoretical, secondary data analyses, reviews.
Outcomes	Themes related to experiences or quality of care emerging from the data through bottom-up analysis	Data were analyzed and presented with predefined themes (top-down).Results presented combined for multiple perspectives, not reporting the resident perspective separately.
Irretrievable	—	Full-text articles that could not be accessed.

All titles and abstracts were screened by one researcher and a second researcher independently screened 10% to confirm consistency and refine the selection criteria (96% agreement). Full texts were screened by two researchers and discrepancies were solved by discussing with a third researcher to reach consensus.

Data Extraction and Quality Appraisal

Data extraction and quality appraisal were performed by one researcher and checked by a second researcher. The following information was extracted from the studies in a pre-developed template: the aim, population description, sample size and selection, setting, data collection and analysis methods, and the themes in the results. Included articles were critically appraised using a checklist to assess qualitative studies (Bunn et al., 2008). Articles were scored sufficient = 1 or insufficient = 0 on eight criteria, the total score ranging from 0 to 8. These criteria are (a) scope and purpose (clear statement of the research question), (b) design and method (appropriate use of qualitative methods), (c) sample (clear description of sample), (d) data collection (adequate description of data collection methods), (e) analysis (analytic methods are made explicit), (f) reliability and validity (presents how categories/themes are developed), (g) generalizability (limits for generalizability clearly stated), and (h) credibility and plausibility (results and conclusions are supported by evidence; Bunn et al., 2012). The research team decided to only include studies with a quality appraisal score ≥4 for data synthesis as the quality of the findings may otherwise be unreliable.

Data Synthesis

Thematic synthesis was used to analyze the results from each identified study (Thomas & Harden, 2008). This three-step inductive approach identifies common data elements across a variety of studies (Lucas et al., 2007). First, the results section from each study was openly coded line by line, enabling the researchers to translate concepts from one study to another. The themes identified by the authors and quotations from the original studies presented in the results sections were considered as data. Second, these codes were categorized into descriptive themes from which a tree structure emerged. Finally, the descriptive themes were translated into the final analytical themes, subthemes, and categories to answer the research question. Supportive quotes were added to clarify each subtheme. Analyses were performed in MAXQDA by two researchers (“MAXQDA, software for qualitative data analysis,” 1989–2020).

Results

The literature search identified 3,151 publications, of which 2,561 were reviewed based on title and abstract, and 207 on full text. As a result, 25 publications were included and two additional publications were identified through snowballing, a technique for reference review. Therefore, this literature review included 27 relevant publications covering 26 original studies for data extraction and quality appraisal (Figure 1).

Figure 1.

Flow-chart study selection.

Study Design and Quality Appraisal

This review includes the experiences of 578 residents living in 93 nursing homes in 14 countries. Table 2 presents the characteristics of the included studies. One study was reported in two publications with a different focus (Nakrem et al., 2011, 2013). Studies were performed in Europe (eight studies), Asia (eight studies), North America (six studies), Australia (three studies), and South America (one study). Studies ranged from five to 96 participants living in one (eight studies) to 19 (one study) long-term care facilities. Each study aimed to explore residents’ experiences and views on quality of care and/or needs. All studies performed interviews with residents and some performed additional observations (seven studies) or group interviews (two studies). Most only included residents who were cognitively capable to be interviewed (16 studies), a few deliberately included residents with cognitive impairment (three studies), and some were unclear about this (seven studies).

Table 2.

Characteristics of Included Studies.

Source	Aim	Setting	Sample size and description/selection	Data collection/analysis	Quality appraisal
Aggarwal et al. (2003)	To explore how people with dementia and their relatives experience dementia and to find out how they perceive and receive care provision by directly eliciting their views, experiences, feelings and needs.This review only presents information from residents living in residential care settings.	Residential care settingsUnited Kingdom	17 residents, various dementia stages.Random	Semi-structured interviews with stimulus materialsPassive participant observation (2,000 pages) and video (1 week)	5/8
				Modified Quality of Interactions Scale and qualitative analysis
Anderberg and Berglund (2010)	To gain a deeper understanding of older adults’ experiences of care and help, and how their lives change in nursing homes.	Four nursing homesSweden	15 residents (six male) aged 73 to 98 years, ≥6 months in nursing home, able to participate in interview.Selection by head nurse.	In-depth interviews (30–70 min)	7/8
				The four lifeworld existentials
Bowers et al. (2001)	To explore how nursing home residents define quality of care (QoC).	Three long-term care facilitiesUnited States	26 residents (five male), aged 64 to 104 years. Excluded: Residents too ill or cognitively impaired for interview.All informed, first nine residents/facility who expressed interest.	Interviews conducted twice (15–120 min)	5/8
				Grounded dimensional analysis
Chang (2013)	To understand the meaning and the essence of the experiences of nursing home residents in this specific situation deeply and accurately	Two private nursing homesKorea	11 residents (three male), aged 76 to 96 years, ability to express themselves verbally, cognitively intact, MMSE ≥ 24.Purposeful	Interviews conducted two to four times (25–100 min)|	8/8
				Seven-stage Colaizzi process
Chao and Roth (2005)	To determine residents’ perceptions of QoC in nursing homes in Taiwan	Four long-term care organizationsTaiwan	22 residents (10 male), aged 61 to 86 years, MMSE-score >24.Convenience	Semi-structured interviews and observation during the interviews (~1 hr)	7/8
				Miles and Huberman (1994) Inductive process
Cho et al. (2017)	To explore older adults’ perceptions of their daily lives in South Korean nursing homes.	Five nursing homesSouth Korea	21 residents (three male), aged 65 to 94 years, ≥3 month in nursing home. Normal cognitive function, ability to communicate, understand, and reiterate study purpose.Purposeful	Semi-structured, in-depth interviews (20–80 min)|	8/8
				Braun and Clarke (2006) six steps
Chuang et al. (2015)	To explore the older nursing home residents’ care needs from their own perspectives.	Two nursing homesTaiwan	18 residents (15 male), age M = 80.7 (SD = 6.3), ≥6 month in nursing home. Sufficient mental functions to score ≥20/30 MMSE (M = 24.6, SD = 3.6).Head nurse determined eligible residents.	In-depth interviews conducted one to five times (22–99 min)	7/8
				Five-step analysis:1. Ordering and organizing;2. Repeatedly reading data;3. Labeling into codes;4. Create subcategories;5. Generate themes.
Coughlan and Ward (2007)	Assessment of residents’ experience in a new “state-of-the-art” long-term care facility and their understanding of QoC shortly after relocation from two older hospital style facilities.	One long-term care facilityCanada	18 senior residents (five male), age M = 84.35, not severely cognitively impaired.All residents invited	In-depth, semi-structured interviews + field note observations	6/8
				Grounded theory
Drageset et al. (2017)	To identify and describe crucial aspects promoting nursing home residents’ experience of meaning and purpose in everyday life.	Nursing homeNorway	18 residents (seven male), aged 65+ years, ≥6 months in nursing home without dementia (clinical-dementia-rating ≤5), capable of having a conversation.NR	Interviews conducted once	7/8
				Gadamer’s hermeneutical approach
Eales et al. (2001)	To better understand the elements that residents themselves felt were integral to client-centered care.	One adult family living homeOne assisted living homeCanada	46 residents (12 male), age Mdn = 82, assisted (n = 16) or adult family living (n = 30). 70% had cognitive abilities within normal limits.All residents invited	In-depth interviews (30–90 min)	6/8
				Miles and Huberman (1994)
Evangelista et al. (2014)	To analyze the perception of the older adults on their living conditions and the process of institutionalization of a nursing home.	One nursing homeBrazil	14 older adults (nine male), aged 60 to 92 years, MMSE-score ≥ 13.All residents invited	Semi-structured interviews	3/8
				Thematic content analysis
Fiveash (1998)	To describe, interpret, understand, and question the experiences of nursing home residents + offer them an opportunity to reflect on their experiences and voice their opinions about their understanding of the situation.	Two private for-profit nursing homesAustralia	Eight residents.NR	Participant observation (2 hr, once/week 6 months)In-depth semi-structured open-ended interviews two to three times (~1 hr)	4/8
				Ethnographic
Grant et al. (1996)	A comprehensive identification of indicators of quality of nursing care as perceived by residents, significant others, and nursing staff in long-term care facilities.[a]	Five long-term care centers for the older adults and disabledCanada	52 residents (13 male), aged 25 to 99 years, mild cognitive impairment (≥4; Mental Status Questionnaire) were interviewed.Random	Critical incidence technique (direct observations)Interviews (twice, 929 incidents)	7/8
				Content analysis
Hwang et al. (2013)	To elucidate the nature of caring by describing the experience of older adult residents of Taiwan long-term care facilities.	Seven long-term care facilitiesTaiwan	12 residents (five male), aged 65 to 94 years, >7 score Short Portable Mental Status Questionnaire, and the ability to describe caring experiences.Purposeful	Semi-structured interviews (30–60 min)	8/8
				Patton’s content analysis
Milte et al. (2016)	To describe the meaning of quality residential care from the perspective of people with cognitive impairment and their family members.[a]	Three residential aged care facilitiesAustralia	15 people (six male), age M = 79 (SD = 11), with mild to severe cognitive impairment, living in residential care (n = 12) or the community (n = 3).Purposeful	Semi-structured interviews (~30 min)	6/8
				Inductive, themes generated from the data itself
Mohammadinia et al. (2017)	The goal of this study is to explore the older adults’ experiences of nursing homes.	One nursing homeIran	15 residents, aged 65 to 82 years, ≥6 months in nursing home, a degree of awareness and consciousness.Objective-oriented approach	Unstructured, in-depth interviews (30–45 min) and observation	7/8
				Seven-stage Colaizzi process
Nakrem et al. (2013)	To describe residents’ experiences of living in a nursing home related to QoC.	Four municipal public nursing homesNorway	15 residents (six male) aged 75 to 96 years, ≥1 month in nursing home with physical and mental capability for interview.Purposeful	In-depth interviews (~1 hr)Gubrium and Holstein (2001)	8/8
Nakrem et al. (2011)	To describe the nursing home resident’s experience with direct nursing care, related to the interpersonal aspects of QoC.				8/8
Palacios-Cena et al. (2013)	To describe residents’ experiences of nursing home organization and nursing care practices in a region of Spain	Five nursing homesSpain	30 Residents (15 male) aged 60 to 100 years, without cognitive impairment, able to communicate.Purposeful followed by in-depth	Unstructured interviews (n = 15, 1–2 times)Semi-structured question-guided in-depth interviews (n = 15, once).	8/8
				Giorgi (1997)
Rahayu et al. (2018)	To gain an overview of the experiences of older adults living in an older adult residential home	One older adult residential homeIndonesia	Six residents.Purposeful	In-depth, open-ended interviews	4/8
				Colaizzi
Robinson et al. (2004)	To advance the conceptualization of resident satisfaction by identifying essential content for resident satisfaction surveys synthesized from an analysis of existing instruments (Phase 1) and open-ended interviews with a diverse group of nursing home residents (Phase 2). This review only presents results from Phase 2.	Three nursing homesUnited States	15 residents (three male), aged 48 to 102 years, ≥4 weeks in nursing home, “independent” in the cognitive skills for daily decision-making (minimum data set).Purposeful (maximum variation)	Interview (20–105 min, once)	6/8
				Crabtree and Miller (1999) template organizing style of qualitative data analysis
Rodriguez et al. (2013)	To ascertain what QoC meant to residents in nursing homes.	One public nursing homeSpain	20 residents, aged 65+ years, without cognitive impairmentEight proxy family members of residents with cognitive impairment. This review only used resident data for analysis. Theoretical	In-depth interviews (50–120 min)	8/8
				Grounded theory dimensional analysis
Tappen (2016)	To compare residents’ descriptions of their experiences in the nursing home and comparisons with their stay in the hospital	19 nursing homesUnited States	96 residents (27 male), aged 47 to 99 years, long-stay (75%), short-stay (25%).All residents were invited	Interviews	6/8
				Miles and Huberman (2014)
Timonen and O’Dwyer (2009)	To explore lives in institutional care and make a contribution to theorizing on the (met and unmet) needs of institutional care residents.	One public sector residential care settingIreland	12 Members of the residents’ council (11 residents, one representative).NR	Group meetingsSemi-structured interviews (1–2 times)	3/8
				Manual coding, Nvivo
Tsai and Tsai (2008)	To explore the lived experiences of older nursing home residents in Taiwan.	Eight nursing homesTaiwan	33 residents (nine male), aged 65 to 97 years, information-rich or likely to talk openly about experiences. Excluded: Severe mental illness, severe cognitive or language deficits.Purposeful	Four focus groups followed by 52 in-depth interviews (~1 hr)	6/8
				Van Manen (1990) steps of thematic analysis
Walker and Paliadelis (2016)	To add to what is known about living in a residential aged care facilities, and such associated issues, from the perspectives of those who are currently residents in such facilities.	Five residential aged care facilitiesAustralia	18 residents (eight male), aged 77–96, ≥3 months in facility. Physically frail, cognitively able to participate. Excluded: Moderate-advanced dementia, unable to engage in interview.Purposeful	Semi-structured interviews	7/8
				Van Manen, thematically
van Zadelhoff et al. (2011)	To investigate experiences of residents, their family caregivers, and nursing staff in group living homes for older adults with dementia and their perception of the care process.[a]	Two group home living unitsNetherlands	Five residents, aged 68 to 93 years; MMSE-score M = 10 (range = 0–14).NR	Participant observation (8 days, 32 hr): Watching, listening, assisting with activities, having conversationsIn-depth interviews	8/8
				Open two-step coding

Note. MMSE = Mini-Mental State Examination; NR = not reported.

This review only presents the information related to the residents.

A majority of the studies were of high quality, scoring 6 to 8 points (20 studies). Two scored 3 points (Evangelista et al., 2014; Timonen & O’Dwyer, 2009) and were excluded from the thematic synthesis. The supplemental table, Supplement 1, presents the detailed results of the quality appraisal.

Thematic Synthesis

Across the 25 publications (24 studies), analysis revealed three overarching themes related to residents’ care experiences: the nursing home environment, the individual aspects of living in the nursing home, and social engagement. These themes were divided into six subthemes that covered 17 categories as presented in Table 3.

Table 3.

Identified Themes and Categories Related to Residents’ Experiences in the Nursing Home.

Theme	Subtheme	Category	Key aspects	Example quotes	References
Nursing home environment	Physical environment	Nursing home characteristics	Facilities, surroundings, space, noise, odor, cleanliness, affordability, and accessibility.	“The toilet is very clean, which is good for health.” (Chuang et al., 2015)“I’d say that a nursing home has quality on the basis of its staff, building, rooms, services and 24-hour medical care.” (Rodriguez et al., 2013)	Aggarwal et al. (2003); Chang (2013); Chao and Roth (2005); Chuang et al. (2015); Drageset et al. (2017); Eales et al. (2001); Fiveash (1998); Grant et al. (1996); Nakrem et al. (2013); Robinson et al. (2004); Rodriguez et al. (2013); Tappen (2016); van Zadelhoff et al. (2011)
		Resources	(Lack of) staff, staff turnover, timeliness and waiting, equipment and supplies.	“What should I do, ma’am? What should I do when three nurses have left since I lived here? What should I do?” (Chang, 2013)“They are expected to get everybody out to the table by 8:30 and it’s pretty hard . . . they are too short staffed. Very short staffed. And they come to look after you and they run and leave you sitting there. They have no choice, maybe she’s on the toilet, or he’s on the toilet or something.” (Coughlan & Ward, 2007)	Aggarwal et al. (2003); Bowers et al. (2001); Chang (2013); Chao and Roth (2005); Coughlan and Ward (2007); Fiveash (1998); Grant et al. (1996); Hwang et al. (2013); Nakrem et al. (2013); Nakrem et al. (2011); Palacios-Cena et al. (2013); Robinson et al. (2004); Tappen (2016); Walker and Paliadelis (2016)
	Caring environment	Home	Homelike environment, own personalized interior design, and feeling comfortable.	“My child bought a big fridge for me in my room . . . .” (Rahayu et al., 2018)“Well, I’d like to (have) freedom to get around, and get around the back yard and little things like that but can’t bear it when you’re locked, you’re locked in, you’re just in all day in the room.” (Walker & Paliadelis, 2016)	Aggarwal et al. (2003); Anderberg and Berglund (2010); Chang (2013); Chao and Roth (2005); Cho et al. (2017); Eales et al. (2001); Nakrem et al. (2013); Nakrem et al. (2011); Rahayu et al. (2018); Robinson et al. (2004); Tappen (2016); Tsai and Tsai (2008); Walker and Paliadelis (2016); van Zadelhoff et al. (2011)
		Privacy	(Loss of) privacy, own room, balance private space versus public space.	“In the beginning, the nursing assistant would respect your privacy, but this just lasted a short time.” (Chao and Roth, 2005)“I have my own room and I can come and go when I please. I can turn on the TV loud or soft, it don’t make any difference.” (Eales et al., 2001)	Aggarwal et al. (2003); Anderberg and Berglund (2010); Chao and Roth (2005); Chuang et al. (2015); Eales et al. (2001); Fiveash (1998); Grant et al. (1996); Milte et al. (2016); Nakrem et al. (2013); Nakrem et al. (2011); Robinson et al. (2004); Tsai and Tsai (2008); Walker and Paliadelis (2016); van Zadelhoff et al. (2011)
		Safety	Sense of security, knowing help is available 24/7, possessions being safe.	“I often wonder about safety here, and whether it is one of the most important issues for the residents. One night, I got up to go to the toilet. I fell down, but nobody knew about this until next morning.” (Chao & Roth, 2005)“I was frightened. I awoke one night and this man was standing at the end of my bed, looking at me. He had scars and sores on his face, a bandage over his ear. I’d never seen him before. I don’t like to complain, but it’s very frightening.” (Fiveash, 1998)	Anderberg and Berglund (2010); Chang (2013); Chao and Roth (2005); Chuang et al. (2015); Coughlan and Ward (2007); Eales et al. (2001); Fiveash (1998); Milte et al. (2016); Nakrem et al. (2013); Nakrem et al. (2011); Palacios-Cena et al. (2013); Robinson et al. (2004); Rodriguez et al. (2013); Tsai and Tsai (2008)
		Daily routines and activities	Daily routine, monotony, rules and regulations, boredom, meaningful activities, food (mealtimes), visits from family.	“Every day here is repetitive and exactly the same. I sit on the chair and look around aimlessly, I do not even think, and it will not work.” (Mohammadinia et al., 2017)“I have been here for a short period, but timetables and rules . . . I do not know, it is like the army. If you ask for anything out of the program, there are problems all around.” (Palacios-Cena et al., 2013)	Aggarwal et al. (2003); Chang (2013); Chao and Roth (2005); Cho et al. (2017); Chuang et al. (2015); Coughlan and Ward (2007); Drageset et al. (2017); Eales et al. (2001); Fiveash (1998); Grant et al. (1996); Hwang et al. (2013); Milte et al. (2016); Mohammadinia et al. (2017); Nakrem et al. (2013); Nakrem et al. (2011); Palacios-Cena et al. (2013); Rahayu et al. (2018); Robinson et al. (2004); Rodriguez et al. (2013); Tappen (2016); Tsai and Tsai (2008); van Zadelhoff et al. (2011)
Individual aspects of living in the nursing home	Personhood	Identity	Maintaining identity versus loss of identity. Sense of belonging and recognition.	“You’re pretty much just a number.” (Eales et al., 2001)“Well it makes you feel like somebody because normally when you do these things yourself, that’s the way you would do it. I mean you wouldn’t just start out to meet others or even pass people on the street looking ragged. I suppose it depends on the way you feel, but a lot of people are daring, they don’t care much but I like to look at least neat and tidy if nothing else. If they can take a minute to do that little thing, just quickly, it means a lot.” (Grant et al. 1996)	Anderberg and Berglund (2010); Bowers et al. (2001); Chao and Roth (2005); Coughlan and Ward (2007); Drageset et al. (2017); Eales et al. (2001); Grant et al. (1996); Hwang et al. (2013); Milte et al. (2016); Mohammadinia et al. (2017); Rodriguez et al. (2013); Walker and Paliadelis (2016); van Zadelhoff et al. (2011)
		Dignity	Being valued and respected versus loss of dignity.	“. . . when one can manage something on one’s own . . . then you are not so . . . disregarded . . . you sort of get a different worth for yourself.” (Anderberg & Berglund, 2010)“They treat us like children. Do what they want to do . . . No respect . . . They need to be polite to older persons. More polite. Respect us.” (Chuang et al., 2015)“I feel pain in my heart when I see I am hungry yet I must wait on the hour specified, to eat some food, or when I become dirty and I cannot take a bath unless it is at its specified time, I get so embarrassed.” (Mohammadinia et al., 2017)	Anderberg and Berglund (2010); Bowers et al. (2001); Chang (2013); Chao and Roth (2005); Cho et al. (2017); Chuang et al. (2015); Coughlan and Ward (2007); Drageset et al. (2017); Fiveash (1998); Grant et al. (1996); Hwang et al. (2013); Milte et al. (2016); Mohammadinia et al. (2017); Nakrem et al. (2011); Palacios-Cena et al. (2013); Rahayu et al. (2018); Robinson et al. (2004); Rodriguez et al. (2013); Tappen (2016); Tsai and Tsai (2008); Walker and Paliadelis (2016); van Zadelhoff et al. (2011)
		Self-determination	(Loss of) autonomy, decision-making, own choice, own will, independency versus dependency.	“Much choice? Not a great deal of choice, but whatever is given to me, I eat it.” (Aggarwal et al., 2003)“I like to make my own decisions, so staff does not need to make decisions for me.” (Hwang et al., 2013)“. . . the shock in so far as losing your independence and, it takes a heck of a time to get adjusted to it.” (Walker & Paliadelis, 2016)	Aggarwal et al. (2003); Anderberg and Berglund (2010); Bowers et al. (2001); Chang (2013); Chao and Roth (2005); Cho et al. (2017); Chuang et al. (2015); Drageset et al. (2017); Eales et al. (2001); Fiveash (1998); Grant et al. (1996); Hwang et al. (2013); Milte et al. (2016); Mohammadinia et al. (2017); Nakrem et al. (2013); Nakrem et al. (2011); Palacios-Cena et al. (2013); Rahayu et al. (2018); Robinson et al. (2004); Rodriguez et al. (2013); Tsai and Tsai (2008); Walker and Paliadelis (2016); van Zadelhoff et al. (2011)
	Coping with change	Getting older	Acceptance of the situation, deteriorating health, wanting to get better, fear of what will come.	“They [people with dementia] don’t recognize themselves as either alive or dead . . . Whenever I see them, I feel bad . . . I think it’s like the end of life . . . If we get older by 5 or 6 years, we can be like that, right? That can be my figure . . . It will be awful to watch.” (Chang, 2013)“The distance that took 5 minutes for me to walk [before] now takes 10 minutes, which makes me frustrated. I don’t have any confidence or hope. If there was any chance of getting better, I might feel hopeful, but I’m just getting worse, so I’m disappointed every time.” (Cho et al., 2017)	Aggarwal et al. (2003); Anderberg and Berglund (2010); Chang (2013); Chao and Roth (2005); Cho et al. (2017); Drageset et al. (2017); Eales et al. (2001) Fiveash (1998); Milte et al. (2016); Mohammadinia et al. (2017); Nakrem et al. (2013); Nakrem et al. (2011); Rahayu et al. (2018); Robinson et al. (2004); Tsai and Tsai (2008); Walker and Paliadelis (2016); van Zadelhoff et al. (2011)
		End of life	Coping with death, fear for and waiting for the end, funeral arrangements, preoccupation with past events.	“I have told my son that I want to be buried beside my wife. I don’t want to be cremated . . . .” (Chuang et al., 2015)“They put a dog down when he gets too old or too ill, but these people are left here.” (Walker & Paliadelis, 2016)	Chang (2013); Cho et al. (2017); Chuang et al. (2015); Coughlan and Ward (2007); Mohammadinia et al. (2017); Nakrem et al. (2011); Tappen (2016); Walker and Paliadelis (2016)
Social engagement	Meaningful relationships	Staff	Family-oriented versus service-oriented relationships, not wanting to be a burden.	“It’s OK . . . you know . . . really . . . . It doesn’t matter so much . . . I’ll get along . . . . She’s so sweet and tries so hard . . . and I wouldn’t want to hurt her feelings.” (Bowers et al., 2001)“They are friends of ours and they treat us like that, they’re company and they don’ just take the sheets off and clean up and take off again, they stop and stay here for 10 or 15 minutes.” (Walker & Paliadelis, 2016)	Aggarwal et al. (2003); Anderberg and Berglund (2010); Bowers et al. (2001); Chao and Roth (2005); Cho et al. (2017); Chuang et al. (2015); Coughlan and Ward (2007); Drageset et al. (2017); Eales et al. (2001); Fiveash (1998); Grant et al. (1996); Hwang et al. (2013); Mohammadinia et al. (2017); Nakrem et al. (2013); Nakrem et al. (2011); Rahayu et al. (2018); Robinson et al. (2004); Rodriguez et al. (2013); Tappen (2016); Tsai and Tsai (2008); Walker and Paliadelis (2016); van Zadelhoff et al. (2011)
		Family and friends	(Difficulty) maintaining long-term relationships, meaningful social interactions, sense of belonging versus loneliness and neglect.	“I am happy to see them [his son and family] here . . . I miss them very much . . . I feel pleasure when seeing them and do not feel alone.” (Chuang et al., 2015)“I stay in contact with friends and family but less and less often. When you come here, it seems like there isn’t more. It wasn’t like that when I was home and cooked and had them over.” (Nakrem et al., 2011)	Chang (2013); Chao and Roth (2005); Cho et al. (2017); Chuang et al. (2015); Coughlan and Ward (2007); Drageset et al. (2017); Eales et al. (2001); Grant et al. (1996); Hwang et al. (2013); Milte et al. (2016); Mohammadinia et al. (2017); Nakrem et al. (2011); Rahayu et al. (2018); Robinson et al. (2004); Tsai and Tsai (2008); Walker and Paliadelis (2016); van Zadelhoff et al. (2011)
		Other residents	(Lack of) meaningful social interactions, distance versus friendship.	“Mr. Shing sat there for many years. He has been gone for 1 month [passed away] . . . It is boring when I sit here alone.” (Chuang et al., 2015)“I don’t get very intimate, no. I speak to them but I don’t get very close.” (Eales et al., 2001)	Aggarwal et al. (2003); Chang (2013); Chao and Roth (2005); Cho et al. (2017); Chuang et al. (2015); Coughlan and Ward (2007); Drageset et al. (2017); Eales et al. (2001); Fiveash (1998); Mohammadinia et al. (2017); Nakrem et al. (2013); Nakrem et al. (2011); Robinson et al. (2004); Tappen (2016); Tsai and Tsai (2008); van Zadelhoff et al. (2011)
	Care provision	Tailored care	(Lack of) care tailored to the resident’s needs and preferences.	“I can’t hold a spoon because my hand still is powerless. They [staff] just left my meal [and did not help].”“They have a plan laid out. I would assume that applies to people who are sick differently one from another. And, I know in my case, at a meeting and I was there. And it was a matter of preparing for bed or getting up in the morning. And I said: ‘Well, I.’ I explained the things I can’t do and I would like covered. And they drew up a statement from the R.N. to the effect that when you get up in the morning you can wash your face and hands, and they would bring the water to you.” (Grant et al., 1996)	Aggarwal et al. (2003); Bowers et al. (2001); Chang (2013); Chao and Roth (2005); Coughlan and Ward (2007); Drageset et al. (2017); Grant et al. (1996); Hwang et al. (2013); Nakrem et al. (2013); Nakrem et al. (2011); Palacios-Cena et al. (2013); Robinson et al. (2004); Rodriguez et al. (2013); van Zadelhoff et al. (2011)
		Technical staff skills	Providing care well, possessing the right skills to provide care, understanding care needs.	“They are so good. They change my diaper regularly and prevent my developing bed sores.” (Chao & Roth, 2005)“They should be skilled enough to transfer me safely.” (Hwang et al., 2013)	Aggarwal et al. (2003); Anderberg and Berglund (2010); Bowers et al. (2001); Chao and Roth (2005); Cho et al. (2017); Chuang et al. (2015); Drageset et al. (2017); Fiveash (1998); Grant et al. (1996); Hwang et al. (2013); Milte et al. (2016); Nakrem et al. (2011); Palacios-Cena et al. (2013); Robinson et al. (2004); Rodriguez et al. (2013); Tappen (2016); Tsai and Tsai (2008)
		Emotional staff skills	Caring skills, staff’s attitude, providing emotional support.	“When they say kind things about you, adjust the pillows and ask if you are lying okay . . . are polite . . . and say ‘good morning’ and ‘good night.’” (Drageset et al., 2017)“Since they have to do things, what I most value is that they go about them with a good will.” (Rodriguez et al., 2013)	Anderberg and Berglund (2010); Bowers et al. (2001); Chao and Roth (2005); Chuang et al. (2015); Coughlan and Ward (2007); Drageset et al. (2017); Eales et al. (2001); Fiveash (1998); Grant et al. (1996); Hwang et al. (2013); Milte et al. (2016); Nakrem et al. (2013); Rahayu et al. (2018); Robinson et al. (2004); Rodriguez et al. (2013); Tappen (2016); Tsai and Tsai (2008)

The nursing home environment

The nursing home environment consisted of the physical environment (19 studies) and the caring environment (24 studies). In the physical environment, nursing home characteristics (13 studies), such as space, noise, odor, and cleanliness, and the availability of facilities, such as on-site shops and a restaurant, were mentioned repeatedly and a few studies mentioned accessibility and affordability. In addition, sufficient resources (14 studies) were considered a prerequisite for a good care experience. Residents specifically stressed having sufficient staff with low turnover rates and staff having enough time to attend to residents’ needs in a timely manner.

In the caring environment, residents’ needs for feeling at home (14 studies), receiving privacy (14 studies), feeling safe (14 studies), and having a daily routine (22 studies) were reported. Some studies highlighted the challenges of residents living together in a public facility. Residents stressed the importance of making the nursing home a home in which they could feel comfortable. Having access to their own personally furnished and decorated rooms contributed to this as residents receive the option to withdraw from the communal setting to their own space. Residents also specifically mentioned their need for privacy. Some reported a loss of privacy in the nursing home, whereas others reported accepting the lack of privacy as it enhanced their feelings of security. In half the studies, residents addressed the importance of their sense of security. This was accomplished by assuring residents that 24/7 help is available and providing them the opportunity to lock their doors, to avoid people stealing from them or other residents entering when not being welcome. Many studies addressed daily routines, either as residents having the freedom to structure their days as they wished or experiencing monotony in their days and feeling limited by rules and regulations. Meaningful activities tailored to residents’ preferences were considered very important to decrease boredom and enhance residents’ sense of purpose. Some specific activities mentioned were religious/spiritual activities, outings outside of the nursing home, mealtimes, and visits from loved ones.

Individual aspects of living in the nursing home

The individual aspects of living in the nursing home consisted of personhood (25 studies) and coping with change (20 studies). Personhood was addressed in all studies as maintaining identity, maintaining dignity, and/or having self-determination. Residents valued being able to maintain their identity and being treated as individuals with their own preferences and needs (13 studies). Maintaining dignity by being respected and valued was also considered important (22 studies). In addition, gaining self-determination and autonomy in the nursing home contributed to personhood by providing residents with choice and involving them in decision-making (23 studies). Residents also struggled with becoming more dependent on others.

Studies reported that residents were coping with getting older and living in the nursing home (17 studies). Whereas many residents experienced deteriorating health and some expressed wanting this to improve, most accepted the situation and some even experienced improved health since living in the nursing home. A few studies touched upon the topic of coping with end of life (eight studies) and that living in the nursing home felt as waiting for the end. Some addressed specific aspects, including fear of death, reflection on life, funeral arrangements, and coping with death of other residents.

Social engagement

Social engagement consisted of having meaningful relationships (24 studies) and how care is provided by staff (23 studies). In their relationships with staff (22 studies), some residents preferred a family-oriented approach, going beyond care and toward friendship, whereas others preferred a service-oriented approach focused on receiving proper care. Some studies stressed that residents did not want to be considered as a burden to staff and henceforth making themselves subservient. Studies reporting on relationships with friends and family (17 studies) mostly mentioned residents’ desires to maintain long-term relationships and have meaningful social interactions that contribute to their sense of belonging. Some experienced difficulty maintaining their relationships or even felt neglected by their relatives. Forming friendships with other residents (16 studies) and having valuable meaningful social interactions added to feelings of self-worth and identity according to multiple studies. Some, however, mentioned the lack of meaningful social interactions because of the challenges of interacting with people with cognitive impairments and the lack of choice who resides in the nursing home.

Care provision is an interactive and reciprocal act. Studies reporting on the care provided by staff highlighted the importance of a tailored care approach adapted to the care needs of each individual resident (14 studies). Many residents expected staff to possess the right technical skills to provide proper care (17 studies). Equally important for the care experience were staff’s emotional skills (17 studies), such as caring skills (trust, engagement, and encouragement), emotional support, and adopting a good attitude toward the residents.

Discussion

This review identified three main factors in each included study contributing to experienced quality of care in nursing homes from the resident’s perspective: environment, individual aspects, and social engagement. The nursing home environment consisted of both the physical environment and caring environment. Individual aspects of living in the nursing home consisted of residents wanting to maintain their personhood and personal self, and their need to cope with change. Social engagement consisted of residents wanting to have meaningful relationships and the way staff provides care.

Our findings that the nursing home environment contributes to experienced quality of care is in line with other research, emphasizing the importance of the physical environment on residents’ behaviors and well-being (Chaudhury et al., 2018). The sociocultural, professional, governmental, and organizational environment can support maintaining personhood (Siegel et al., 2014). This is achieved by residents feeling in control of their own life and feeling that they matter, by being recognized and valued as stated in the Senses Framework (Nolan et al., 2006; Oosterveld-Vlug et al., 2013). To increase quality of care and personhood, professional caregivers need to develop meaningful relationships with residents, family members, and colleagues (McCormack et al., 2012). The quality of care relationships are characterized on the resident level, professional level, interaction between resident and professional level, and contextual level and can be used to gain insight into how relationships influence care provision and the resident’s personhood (Scheffelaar, Bos et al., 2018; Smebye & Kirkevold, 2013).

People with dementia should more often be included in studies about experiences. Only three studies explicitly included this population. People with dementia or aphasia may be limited to verbally express themselves or find it challenging recalling on past experiences; however, future studies should adopt an inclusive design by using a tailored approach for this population by, for example, using supportive visuals or observations (Alzheimer’s Disease International, 2015; Curyto et al., 2008; Gardner et al., 1976; Scheffelaar, Hendriks, et al., 2018; Stans et al., 2013; Whitlatch, 2001). A recent review explored self-reported needs and experiences of people with dementia in nursing homes (Shiells et al., 2019). This is complementary to our review as it included qualitative and quantitative studies and focused on experiences, quality of life, and well-being expressed by people with dementia. The identified themes were similar to our findings, focusing on tailored activities, meaningful relationships, choice, environment, end of life, and reminiscence. Reminiscence, defined as opportunities to share memories with others, was not identified explicitly in the current review because it might be more related to well-being and quality of life.

Some methodological issues should be considered. The relatively high number of included studies performed in a variety of countries contributes to the generalizability of the findings from this review, especially as no major differences were identified between countries. This should, however, be done cautiously as there is a large variety in types of nursing homes and nursing home residents (Schols et al., 2004). Selection bias may be present as many studies excluded residents with cognitive impairment and only performed interviews with residents capable of this. Proxies were excluded to ensure only the resident’s voice was included. This might have narrowed the findings; however, research has shown that proxies’ expression of resident’s needs can differ and this review explicitly focuses on the residents’ perspective (Crespo et al., 2012; Orrell et al., 2008)

Whereas the current review identified known themes from residents’ reports, the voice of residents in informing quality management and improving daily practice is still insufficient (Castle & Ferguson, 2010; OECD/EU, 2013). Guidelines are more frequently stressing the importance of including the resident’s voice when monitoring and improving quality of care (OECD/EU, 2013; Thomas et al., 2014; Zorginstituut Nederland, 2017). In the Netherlands, several methodologies are being developed that include narratives to assess quality of care from the resident’s perspective (Triemstra & Fracke, 2017). As demonstrated through this review, narratives provide residents the space to share their stories and specify what needs to be improved and how (Martino et al., 2017; Schlesinger et al., 2015). In practice, this is, however, more complicated than surveys (Schlesinger et al., 2015). In addition, assessing the resident’s voice is not enough; it needs to be translated to policy and practice.

To our knowledge, this review is one of the first to synthesize data from residents’ experiences with quality of care in nursing homes. Our findings highlight the need for residents to express variation in their preferences regarding their physical environment, individual aspects, and social engagement (Edvardsson et al., 2019). Residents should receive enough space to share their care experiences in a way that they feel comfortable doing so. Focusing on meaningful care experiences as a whole can contribute to a new way of assessing experienced quality of care (Corazzini et al., 2019; LaVela & Gallan, 2014; Wolf et al., 2014). This review presents the first steps into identifying what residents consider important. To achieve high-quality experience of care in nursing homes, future research should focus on how best to assess residents’ experiences and how care teams can use these experiences for quality improvement.

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Supplemental material, Suppl_1 for Themes Related to Experienced Quality of Care in Nursing Homes From the Resident’s Perspective: A Systematic Literature Review and Thematic Synthesis by Katya Y. J. Sion, Hilde Verbeek, Sandra M. G. Zwakhalen, Gaby Odekerken-Schröder, Jos M. G. A. Schols and Jan P. H. Hamers in Gerontology and Geriatric Medicine