Joan OstaszkiewiczpersName, Virginia Dickson-SwiftpersName, Alison HutchinsonpersName, Adrian WaggpersName (2020date). “A concept analysis of dignity-protective continence care for care dependent older people in long-term care settings..” BMC Geriatricstitle·j.
Object of study — the concept of dignity in continence careterm·dom for older people in long-term careterm·key settings
Research question — how dignityterm·key is protected in the provision of continence careterm·dom in long-term formal care settings
Contribution — a conceptual understanding of dignityterm·key usable as a guiding principle in an ethic of continence careterm·dom
phenomenon · claim-type · cross-domain-transfer · mechanism · claim-relation · replication-status · limitation — grounded in the full text| phenomenon | widespread concern about a lack of attention to the dignity of older people needing continence care in long-term care — “Although codes of conduct, guidelines and standards call for healthcare practitioners to protect patients’ dignity, there are widespread concerns about a lack of attention to the dignity of older people who need assistance with toileting, incontinence or bladder or bowel care in health or social care settings that provide long-term care.” | |
| claim-type | existence — “This study reveals that although dignity is subjectively experienced, the key attributes of dignity-protective continence care are privacy, respect, autonomy, empathy, trust, and communication, in the caregiving encounter.” | |
| method — evidence | — “In order to define the key concepts, the first four steps of Rodgers [ 57 ] evolutionary method of concept analysis were used.” | |
| object of study — evidence | — “The aim of this concept analysis was to explore, describe and explain the concept of dignity as it relates to continence care for older people in long-term care settings.” | |
| research question — evidence | — “How is dignity protected in the provision of continence care in long-term formal care settings?” | |
| contribution — evidence | — “This research resulted in a conceptual understanding of dignity that can be used as a value or guiding principle in an ethic of care for older people who need assistance with toileting, incontinence or bladder or bowel care in long-term care settings.” | |
| sense | dignity (Macklin) - no more than respect for persons or their autonomy — “Indeed, Macklin [ 16 ] generated considerable debate among healthcare professionals when she claimed dignity was a useless concept in healthcare, and that it “means no more than respect for persons or their autonomy” (p. 1419) and has “no meaning beyond what is implied by the principle of medical ethics, respect for persons, the need to obtain voluntary, informed consent; the requirement to protect confidentiality; and the need to avoid discrimination and abusive practices” (p. 1419).” | senses[0] |
| sense | human dignity (as interpreted) - historically, politically and culturally relative, and changing over time — “Interpretations of human dignity are historically, politically and culturally relative as they are culturally dependent and change over time [ 20 ].” | senses[1] |
| sense | continence care (as defined elsewhere) - the total package tailored to the needs of people with bladder and bowel problems — “Continence care has been defined as “the total package tailored to meet the individual needs of patients with bladder and bowel problems” [ 31 ].” | senses[2] |
| relation | dignity in continence care —same-as→ Dignity-protective continence care — Based on the findings of this analysis, we suggest dignity in continence care (dignity-protective continence care) is operationalised through practices that promote respect, empathy, trust, privacy, autonomy and communication. — “Based on the findings of this analysis, we suggest dignity in continence care (dignity-protective continence care) is operationalised through practices that promote respect, empathy, trust, privacy, autonomy and communication.” | concept_edges[0] |
| weight | dignity in continence care —same-as→ Dignity-protective continence care — 0.85 — “Based on the findings of this analysis, we suggest dignity in continence care (dignity-protective continence care) is operationalised through practices that promote respect, empathy, trust, privacy, autonomy and communication.” | concept_edges[0] |
| relation | Urinary incontinence —same-as→ UI — Urinary incontinence (UI) is defined as ‘the complaint of any involuntary leakage of urine’ [ 34 ]. — “Urinary incontinence (UI) is defined as ‘the complaint of any involuntary leakage of urine’ [ 34 ].” | concept_edges[1] |
| weight | Urinary incontinence —same-as→ UI — 0.9 — “Urinary incontinence (UI) is defined as ‘the complaint of any involuntary leakage of urine’ [ 34 ].” | concept_edges[1] |
| relation | Faecal incontinence —same-as→ FI — Faecal incontinence (FI) is ‘the involuntary loss of liquid or solid stool that is a social or hygienic problem’ [ 35 ]. — “Faecal incontinence (FI) is ‘the involuntary loss of liquid or solid stool that is a social or hygienic problem’ [ 35 ].” | concept_edges[2] |
| weight | Faecal incontinence —same-as→ FI — 0.9 — “Faecal incontinence (FI) is ‘the involuntary loss of liquid or solid stool that is a social or hygienic problem’ [ 35 ].” | concept_edges[2] |
| replication | not-applicable | |
| limitation | Studies in languages other than English were not accessed, so much literature may have been excluded. — “Studies in languages other than English were not accessed and a significant body of literature may therefore have been excluded.” | limitations[0] |
| limitation | The search yielded information from five Western countries only. — “The fact that the search yield information from five Western countries is an important limitation.” | limitations[1] |
| limitation | Another concept analysis method might have produced a different outcome. — “Additionally, employing an alternative method for the concept analysis may have produced a different outcome (eg Avant & Walker’s).” | limitations[2] |
finding · quantity · variable · definition · key-term — grounded in the full text| finding | Dignified continence care happens when privacy, respect, autonomy, empathy, trust and communication are the focus of the care encounter. — “Our analysis demonstrates that dignified continence care happens when key attributes of care including privacy, respect, autonomy, empathy and trust, communication are the focus of the care encounter.” | content_tags.findings[0] |
| finding | Humour in the care encounter can be dignity-protective or dignity-violating. — “The use of humour in the care encounter was identified as a key part of therapeutic communication and can be dignity-protective or dignity-violating [ 86 , 87 ].” | content_tags.findings[1] |
| finding | Concealment of incontinence is only one of several aspects of dignity-protective care. — “Whilst the desire to protect residents’ dignity is commendable, the findings of this concept analysis suggest that concealment is only one of several aspects of dignity-protective care.” | content_tags.findings[2] |
| quantity | 625 — — “The bibliographic search resulted in a total of 625 articles from across the relevant databases.” | content_tags.quantities[0] |
| quantity | 14 — — “Hence, the final number of actual studies was 14.” | content_tags.quantities[1] |
| quantity | 50 — — “The initial analysis of the included studies identified 50 different attributes that were then categorised into individual and environmental (physical and social) levels.” | content_tags.quantities[2] |
| quantity | 23 — — “The analysis of the included studies identified 23 consequences of undignified continence care that were categorised into 3 levels of impact (resident/family member, staff or organisation).” | content_tags.quantities[3] |
| key-terms | dignity, continence care, incontinence, dignity-protective continence care, person-centred care, long-term care, privacy, autonomy, therapeutic communication, residential aged care |
| concept | continence care — assistance with bladder and/or bowel function which includes supporting a person to maintain continence and manage incontinence — “For the purposes of this paper ‘continence care’ refers to assistance with bladder and/or bowel function which includes supporting a person to maintain continence and manage incontinence.” | concepts[0] |
| concept | Dignity-protective continence care — care that is delivered with compassion and respect — “Dignity-protective continence care is care that is delivered with compassion and respect.” | concepts[1] |
| concept | dignity in continence care — not defined in this paper's own words; the respect for a person's worth kept up while they are helped with toileting — “Based on the findings of this analysis, we suggest dignity in continence care (dignity-protective continence care) is operationalised through practices that promote respect, empathy, trust, privacy, autonomy and communication.” | concepts[2] |
| concept | Urinary incontinence — the complaint of any involuntary leakage of urine — “Urinary incontinence (UI) is defined as ‘the complaint of any involuntary leakage of urine’ [ 34 ].” | concepts[3] |
| concept | UI — Urinary incontinence — “Urinary incontinence (UI) is defined as ‘the complaint of any involuntary leakage of urine’ [ 34 ].” | concepts[4] |
| concept | Faecal incontinence — the involuntary loss of liquid or solid stool that is a social or hygienic problem — “Faecal incontinence (FI) is ‘the involuntary loss of liquid or solid stool that is a social or hygienic problem’ [ 35 ].” | concepts[5] |
| concept | FI — Faecal incontinence — “Faecal incontinence (FI) is ‘the involuntary loss of liquid or solid stool that is a social or hygienic problem’ [ 35 ].” | concepts[6] |
| concept | perceptual adjustment — a process by which a person forecasts the potential indignities that he or she expects to suffer whilst in care — “Matiti and Trorey used the term perceptual adjustment to describe a process by which a person forecasts the potential indignities that he or she expects to suffer whilst in care, “mentally analyses the situation and adjusts to a level that he or she feels comfortable enough to accept” [ [ 88 ] p. 741].” | concepts[7] |
| concept | person-centred care — based on a philosophy of care that promotes personal choice and autonomy for people in receipt of care — “Sometimes referred to as “person-centred care” this approach is based on a philosophy of care that promotes personal choice and autonomy for people in receipt of care [ 81 – 85 ].” | concepts[8] |
| concept | antecedents — factors that must be present before the occurrence of the concept — “Whilst antecedents are factors that must be present before the occurrence of the concept, consequences are events that occur as a result of the concept [ 44 ].” | concepts[9] |
| concept | consequences — events that occur as a result of the concept — “Whilst antecedents are factors that must be present before the occurrence of the concept, consequences are events that occur as a result of the concept [ 44 ].” | concepts[10] |
Full text — tagged
A concept analysis of dignity-protective continence careterm·dom for care dependent older people in long-term careterm·key settings.
Abstract Although codes of conduct, guidelines and standards call for healthcare practitioners to protect patients’ dignityterm·key, there are widespread concerns about a lack of attention to the dignityterm·key of older people who need assistance with toileting, incontinenceterm·key or bladder or bowel care in health or social care settings that provide long-term careterm·key. Incontinenceterm·key and care dependence threatens patient dignityterm·key. The aim of this research was to explore, describe and explain the concept of dignityterm·key as it relates to continence careterm·dom for older people requiring long-term careterm·key.
The first four steps of Rodgers evolutionary method of concept analysis were followed. First, a comprehensive and systematic search of databases and key guidelines about continence careterm·dom was undertaken to identify empirical research about dignityterm·key and continence careterm·dom in older people in facilities that provide permanent residential or inpatient care of older people for day-to-day living. Data were extracted on the authors, date, sample, country of origin, and key definitions, attributes, contexts and consequencesterm from each included record. Findings were inductively analysed and grouped according to whether they were the key attributes and antecedentsterm of dignityterm·key in relation to continence careterm·dom or the consequencesterm of undignified continence careterm·dom.
Of 625 articles identified, 18 were included in the final analysis. Fifty individual attributes were identified that were categorised in 6 domains (respect, empathy, trust, privacyterm·key, autonomyterm·key and communication). A further 15 were identified that related to the environment (6 physical and 9 social). Key consequencesterm of undignified continence careterm·dom were also identified and categorised into 3 levels of impact (resident/family member, staff or organisation).
This research resulted in a conceptual understanding of dignityterm·key that can be used as a value or guiding principle in an ethic of care for older people who need assistance with toileting, incontinenceterm·key or bladder or bowel care in long-term careterm·key settings.
Keywords: Dignityterm·key, Continence careterm·dom, Concept analysis, Person-centred careterm·dom, Dignity-protective continence careterm·dom, Long-term careterm·key Background The importance of dignityterm·key as core concept in health care is widely recognised. Dignityterm·key is a key aspect of patient care [ 1 – 5 ] that has been explored across a range of care disciplines (eg: nursing, allied health) and more broadly as part of patient-centred care [ 6 – 8 ]. Dignityterm·key is central to care in nursing [ 9 , 10 ], and dignified and respectful care is closely related to patient satisfaction [ 11 , 12 ].
Article 1 of the Universal Declaration of Human Rights (UDHR) states “all human beings are born free and equal in dignityterm·key and rights. They are endowed with reason and consciences and should act towards one another in a spirit of brotherhood” [ 13 ]. Professional codes of conduct for healthcare practitioners also advocate for care that protects patients’ dignityterm·key. Specifically, the International Council of Nurses’ (ICN) Code of Ethics [ 14 ] states ‘inherent in nursing is a respect for human rights, including cultural rights, the right to life and choice, to dignityterm·key and to be treated with respect’. The Declaration of Human Rights and the International Council of Nursing Code emphasise the inherent nature of dignityterm·key as a fundamental human right.
Despite dignityterm·key being entrenched within various codes of conduct, guidelines and standards for patient care, dignityterm·key remains a contested concept that is difficult to define, measure and apply to healthcare [ 15 – 18 ]. Indeed, Macklin [ 16 ] generated considerable debate among healthcare professionals when she claimed dignityterm·key was a useless concept in healthcare, and that it “means no more than respect for persons or their autonomyterm·key” (p. 1419) and has “no meaning beyond what is implied by the principle of medical ethics, respect for persons, the need to obtain voluntary, informed consent; the requirement to protect confidentiality; and the need to avoid discrimination and abusive practices” (p. 1419). However, the term ‘dignityterm·key’ intersects with other terms such as pride, self-respect, quality of life, wellbeing, hope, self-esteem [ 5 ], autonomyterm·key, respect, empowerment and communication [ 19 ]. Interpretations of human dignityterm·key are historically, politically and culturally relative as they are culturally dependent and change over time [ 20 ]. Some researchers highlight that it is often easier for practitioners to describe undignified care rather than to articulate dignified care [ 11 , 21 ]. Additionally, much of the research in relation to dignityterm·key focuses on the care of the dying [ 3 , 5 , 22 ] rather than on dignity-preserving personal care [ 23 ].
Despite the fact that respect for human dignityterm·key is widely promoted and, arguably, lies at the heart of care [ 24 , 25 ], international reports identify a lack of attention to the dignityterm·key of older people in care homes and hospitals [ 26 – 29 ]. According to the findings of the 2018 Care Quality Commission (CQC) NHS Inpatient Survey in the UK, almost one fifth of respondents did not feel they were treated with respect and dignityterm·key at all times [ 27 ]. In Australia the recent Royal Commission into Aged Care Quality and Safety found that more than half of the complaints made about the quality of care in its residential aged careterm·key homes, related to compromises to personal dignityterm·key [ 26 ]. Hence, there is a needs to focus on how dignityterm·key is enacted for people with continence careterm·dom needs in such settings.
While cognisant of the elusive nature of the term ‘dignityterm·key, we propose it could nevertheless be an important value or guiding principle in an ethic of care for older people who need assistance with toileting, incontinenceterm·key or bladder or bowel care, hereafter referred to as continence careterm·dom [ 23 , 30 ]. Continence careterm·dom has been defined as “the total package tailored to meet the individual needs of patients with bladder and bowel problems” [ 31 ]. For the purposes of this paper ‘continence careterm·dom’ refers to assistance with bladder and/or bowel function which includes supporting a person to maintain continence and manage incontinenceterm·key. Continence careterm·dom activities that aim to maintain a person’s continence include helping them to use the toilet or altering the environment to prevent disability incontinenceterm·key. Continence careterm·dom activities that centre on managing incontinenceterm·key include assisting a person to apply or change incontinenceterm·key products (eg absorbent pads, ostomies and urinary catheters), helping them with their personal hygiene after an episode of incontinenceterm·key and adopting measures to protect their skin from incontinence-associated dermatitis.
Providing continence careterm·dom necessarily involves transgressing peoples’ personal space and infringing social norms about privacyterm·key and touch [ 32 ] and places them at risk of violation of their personal dignityterm·key, particularly if they are also care-dependent, cognitively impaired and lack decision-making capacity [ 33 ].
High levels of dependence threatens patient dignityterm·key, especially with regard to personal care which is at odds with the standards and values that most people embrace throughout their adult lives [ 33 ] putting patient dignityterm·key at risk. People living permanently in nursing homes are likely to experience urinary and/or faecal incontinenceterm·dom. Urinary incontinenceterm·dom (UIterm·dom) is defined as ‘the complaint of any involuntary leakage of urine’ [ 34 ]. Faecal incontinenceterm·dom (FIterm·dom) is ‘the involuntary loss of liquid or solid stool that is a social or hygienic problem’ [ 35 ]. Incontinenceterm·key is a widespread condition that ranges in frequency, type and severity. International studies have shown that between 50 and 90% of people living in long-term careterm·key experience incontinenceterm·key and the majority require assistance to maintain continence or manage incontinenceterm·key [ 36 – 40 ].
Current standards, guidelines, models and principles that are underpinned by autonomyterm·key, justice, beneficence, and non-maleficence are largely concerned with issues of consent, competency, and advocacy, but they are silent about how dignityterm·key is understood, preserved and enacted on a day-to-day basis, including in the context of providing continence careterm·dom. Understanding dignityterm·key as a concept is critical to understanding incontinenceterm·key and its management. Previous concept analyses have highlighted key attributes, antecedentsterm and consequencesterm of dignityterm·key including privacyterm·key, autonomyterm·key and respect [ 41 – 45 ]. A previous concept analysis of incontinenceterm·key and continence undertaken by Dombrowsky & Gray [ 46 ] explored some of the key historical descriptions of incontinenceterm·key highlighting the role that stigma plays. More recently, a concept analysis of UIterm·dom highlighted the key attributes, the impact of the cultural/environmental context, and the consequencesterm of UIterm·dom [ 47 ]. Whilst these concept analyses of incontinenceterm·key and dignityterm·key provide valuable learning, there is limited research about dignityterm·key and incontinenceterm·key. This has led to a gap in knowledge regarding the requirements for dignified continence careterm·dom. Understanding the essential attributes of dignity-protective continence careterm·dom will allow caregivers and healthcare professionals to challenge practices that violate dignityterm·key, and recognise opportunities for dignityterm·key preservation.
International guidelines and standards about incontinenceterm·key identify dignity in continence careterm·dom as an important issue [ 48 – 52 ], however, they do not elaborate on the attributes of dignity-protective continence careterm·dom. Hence, there is no way to currently quantify if continence careterm·dom does or does not protect a person’s dignityterm·key. Therefore, a systematic analysis of the concept of dignityterm·key relating to continence careterm·dom which explores definitions and understandings of the term in both academic literature and other literature utilised by practitioners and policy makers is timely. The information could be used to design and validate an instrument to measure dignity-protective continence careterm·dom.
Aim The aim of this concept analysis was to explore, describe and explain the concept of dignityterm·key as it relates to continence careterm·dom for older people in long-term careterm·key settings.
Method Concept analysis is a well-established method that has been used to analyse many concepts in health and social care (for example - human dignityterm·key [ 43 ], critical health literacy [ 53 ], cultural competence [ 54 ] and poor care [ 44 ]. Concept analyses are integral to examining concepts that are often simply seen as a task or a series of tasks [ 55 , 56 ]. By using a structured and objective process, researchers can identify critical elements of a given concept, including antecedentsterm, attributes and consequencesterm [ 55 , 57 ]. Defining the key conceptual elements assists in the development of theory that may be useful in practice, education or further research [ 58 ].
The benefit of conducting a concept analysis is that it offers a method to develop a set of defining characteristics that articulates “what counts” as the concept [ 57 ]. Specifically, it allows the researcher to (a) formulate a clear, precise theoretical and/or operational definition to be used in the study; (b) choose measurement instruments that accurately reflect the defining characteristics of the concept to be measured; (c) determine if a new instrument is needed (if no extant measure adequately reflects the defining characteristics); and (d) accurately identify the concept when it arises in clinical practice or in qualitative research data [ 59 ]. Following the clarification of key concepts, operational definitions can be developed to guide education and clinical practice and to measure the core attributes; in this case, the attributes of dignity-protective continence careterm·dom.
The goal of this concept analysis was to define ‘dignity in continence careterm·dom’ based on attributes or “essences” that capture the meaning of the concept under study [ 56 ]. There are a number of different concept analysis methods available [see for example, [ 55 , 56 , 60 – 62 ]. Rodgers [ 56 ] highlights that it is the attributes that serve as the true definition of the concept under study and that the definition of the key attributes or the concept is the “primary accomplishment of a concept analysis” [ 57 ], p. 91]. In order to define the key concepts, the first four steps of Rodgers [ 57 ] evolutionary method of concept analysis were used.
Identification and naming of the concept of interest and its surrogate terms, Identification and selection of an appropriate sample for the data collection, Collection of data relevant to identifying attributes and contextual bases of the concept, Analysis of the data to identify key characteristics of the concept.
An inductive processes of analysis which included the definition of the concept of dignityterm·key in relation to continence careterm·dom as well as identifying its alternative statements and terms was used. This approach allowed for the consideration of concepts as dynamic [ 57 ] which provided a comprehensive understanding of the concept.
Sampling To identify and select an appropriate sample for data collection we used an iterative process that began with identifying key guidance about continence careterm·dom from contemporary sources and organisations that develop and promote best practice recommendations about incontinenceterm·key. The websites of several linked organisations were searched for guidance about continence careterm·dom. Guidance or policy documents were identified from the UK Continence Careterm·dom Steering Group [ 48 ], the UK National Health Service [ 49 ], the Royal College of Physicians [ 50 ] the Association for Continence Advice [ 51 ], Minimum Standards for Continence Careterm·dom in the UK [ 52 ], the Continence Nurses Society of Australia, [ 63 ], the Wound, Ostomy and Continence Nurses Society [ 64 ], the British Geriatrics Society [ 65 ] and the International Consultation on Incontinenceterm·key (ICI) [ 66 ]. As part of this development process, we extracted information that related to dignity in continence careterm·dom from each of the guidelines. This information was used to support the development of the search strategy. The concepts of interest developed from this process are outlined in Table 1 .
Concepts for search Whilst most of these guidelines state dignityterm·key is an important part of care, few provided definitions or examples of what dignityterm·key in relation to continence careterm·dom might look like. Two exceptions to this were found; the first was the British Geriatrics Society [ 65 ] campaign (Behind Closed Doors) whose best practice recommendations link dignityterm·key to an assessment of the older person’s toileting needs and personal choice and preferences related to continence careterm·dom. The second was the ICI Guidelines that cite the Dignity in Continence Careterm·dom Framework developed by OstaszkiewiczpersName [ 30 ].
Inclusion & exclusion criteria Inclusion and exclusion criteria were developed based on the initial guidelines and searches. The main requirement was that all studies had to address all of the following four key concepts: four key concepts (i) incontinenceterm·key or continence, (ii) dignityterm·key or indignity, (iii) older people and (iv) facilities or services that provide long-term residential or inpatient formal care and support for day-to-day living (see Table 2 ). Duplicates were removed except where two or more papers reported different aspects of the same study.
Inclusion/exclusion criteria Search strategy The relevant surrogate terms extracted from the initial search of the key continence guidelines and existing literature on dignityterm·key and continence were incorporated into the search strategy along with recommended terms from the research team. In order to undertake a comprehensive and systematic search, a specialist healthcare librarian assisted with the development of search strategies for each database (MEDLINE Ovid, Embase Ovid, PsycINFO, CINAHL EBSCO, Web of Science, Google Scholar and Cochrane Complete, based on the one developed for MEDLINE (Ovid) (see Table 3 ). Medical Subject Headings (MeSH) terms were also included to complement the search. Key search terms included truncation of key words, use of thesaurus terms and subject headings, and combining terms and search strings with the appropriate Boolean operators. Date limiters and English language were then applied for each database. The full search strategy, based on the MEDLINE strategy is outlined in Table 3 .
Search strategy developed for MEDLINE Screening of studies All included records were managed in Covidence [ 67 ] (systematic review management software) to assist with the review process. All reviewers assessed a sample of at least 25 articles to ensure reliability in application of the inclusion and exclusion criteria. Any discrepancies were resolved via discussion. All records were screened by a minimum of two reviewers. As screening was conducted, conflicts were automatically identified by the Covidence software, and these were then discussed by the review team until consensus was reached. A PRISMA flow chart was used to document all stages of study selection (see Fig. 1 ).
PRISMA Flow Diagram.
Data extraction As the focus of this review was on the concepts that relate to dignity protective continence careterm·dom for care-dependent older people, data were extracted with regard to authors, date, sample, country of origin, and key definitions, attributes, contexts and consequencesterm from each of the included records. The following questions were developed to guide the data extraction for the concept analysis.
How is dignityterm·key defined in continence careterm·dom for older care-dependent individuals in long-term formal care settings?
How is dignityterm·key protected in the provision of continence careterm·dom in long-term formal care settings?
What factors play a role in protecting the dignityterm·key of care-dependent older individuals in long-term formal care settings in relation to continence careterm·dom?
What are the consequencesterm of not protecting dignity in continence careterm·dom for care dependent older people, staff and families in long-term formal care settings?
Data analysis and synthesis As the purpose of this concept analysis was to explain and describe the concept, common applications and to clarify key attributes, a concept analysis employing Rodgers evolutionary methods was used [ 56 , 57 ]. In line with this method, we initially explored surrogate terms for ‘dignityterm·key’, searching for terms that had similar meanings or that might be related. The next steps in the analysis involved identifying the antecedentsterm of dignityterm·key and examining which events or concepts were related to dignityterm·key. Undertaking this process allowed us to identify and refine the central attributes of dignityterm·key in relation to continence careterm·dom [ 55 ]. Whilst antecedentsterm are factors that must be present before the occurrence of the concept, consequencesterm are events that occur as a result of the concept [ 44 ]. At least two researchers read each record, and highlighted specific elements of text that referred to attributes, antecedentsterm or consequencesterm of the concept of dignity in continence careterm·dom. This inductive approach facilitated data condensation, allowing for comprehensive capture of the key aspects of the concept (dignity-protective continence careterm·dom). The consequencesterm of undignified continence careterm·dom were identified for residents and their families, care staff and organisational levels. To further enhance the data analysis process, the key guidelines located in the initial scoping process were examined for references to dignityterm·key.
Results The bibliographic search resulted in a total of 625 articles from across the relevant databases. After title and abstract screening, and removal of duplicates, 55 articles were reviewed at full-text level. From these, 18 articles [ 21 , 23 , 30 , 32 , 33 , 68 – 80 ] (see Fig. 1 for the PRISMA flow chart) were included. Among the eligible articles were three studies that were reported in two or more papers. Specifically, the ‘FINCH’ study was reported in three papers [ 69 , 70 , 77 ]. Similarly, OstaszkiewiczpersName reported on different aspects of the same Grounded theory study about providing continence careterm·dom in Australian residential aged careterm·key homes (RACH) in three papers [ 32 , 72 , 73 ]. Hence, the final number of actual studies was 14. The methods, sample, design, and main findings are described in Supplementary file 1 (Table of Included Studies). Supplementary file 2 (Table of Excluded Studies) includes a list of the 39 studies excluded at full-text level, and the rationale for their exclusion.
Of the 14 eligible studies, five were quantitative, reported in seven papers [ 21 , 69 – 71 , 77 , 79 , 80 ], five were qualitative, reported in seven papers [ 23 , 32 , 68 , 72 – 75 ], two were theoretical papers [ 33 , 72 ] and two were reviews of international research [ 74 , 76 ]. Five of the studies and one review were from Australia, three studies and one systematic review were from the UK, two studies were conducted in Sweden, one in Canada and one in the USA.
Seven of the included studies offered evidence about dignityterm·key from the perspectives of older people with continence careterm·dom needs. Among these were a review of literature about residents’ quality of life related to UIterm·dom, their perspectives about being incontinent and care preferences [ 74 ], and a realist review to investigate care recipients’ and other stakeholders’ perspectives of what interventions work to reduce and manage FIterm·dom in care homes in the UK [ 69 , 70 , 77 ]. In addition, we found two qualitative explorative descriptive studies: one of which examined the continence careterm·dom preferences of people receiving palliative care [ 78 ] and the other explored how family relatives of older people in long-term residential aged careterm·key understand quality continence careterm·dom [ 75 ]. Evidence was also extracted from a mixed methods study conducted in the UK where older people with UIterm·dom and/or FIterm·dom in nursing homes and hospitals were interviewed to explore their perceptions of factors that impact on a person’s dignityterm·key in a care setting [ 21 ]. The dataset also included: a retrospective cross-sectional study that compared the quality of life of nursing home residents with, and without UIterm·dom and the effects of UIterm·dom on residents’ autonomyterm·key, mood and dignityterm·key in the USA [ 80 ] and a cluster randomised controlled trial of the effects of a person-centred approach to continence careterm·dom on care home residents’ quality of life in Sweden [ 79 ].
Four of the included studies offered evidence about dignityterm·key from the perspectives of healthcare professionals, care assistants or service providers. Qualitative research on this topic included a study in which 11 Registered Nurses shared their experiences of providing continence careterm·dom for older people receiving home care, either in their own home or in an assisted living facility in Sweden [ 68 ] and another study in which 19 staff from RACH in Australia shared their beliefs and expectations about what constituted the concept of “quality continence careterm·dom” for aged care residents [ 23 ]. We also drew on findings from a Grounded theory study that involved 88 h of field observations in two RACH in Australia, in-depth interviews with 18 nurses and care assistants, and an analysis of 87 accreditation reports about the quality of continence careterm·dom [ 32 , 72 , 73 ]. Other evidence derived from a mixed methods study to explore dementia care practitioners’ and service managers’ opinions about the challenges they countered in upholding the dignityterm·key of older people with dementia in hospitals, care homes and community settings in the UK. The researchers conducted a two-hour workshop to prompt discussion on vignettes about ethically challenging care decisions, including decisions about continence careterm·dom [ 71 ]. Information about dignity-protective continence careterm·dom was also located in a systematic review of systematic reviews for the management of UIterm·dom and the promotion of continence with conservative behavioural approaches in older people in care homes [ 76 ].
Evidence for the concept analysis was further informed by two theoretical papers that represented a synthesis of findings from prior qualitative research with contemporary biomedical understandings about incontinenceterm·key with theoretical concepts from the disciplines of nursing, psychology, and sociology [ 30 , 33 ]. One such paper describes a conceptual model of possible associations between incontinenceterm·key, care dependence and elder abuse [ 33 ]. The other describes a theoretical framework termed ‘The Dignity in Continence Careterm·dom Framework designed to improve choice, autonomyterm·key, and dignityterm·key for people who require assistance to maintain continence or manage incontinenceterm·key [ 30 ]. Using a biopsychosocial approach, the framework promotes the dignityterm·key of the person as the overarching goal of care; empathic continence careterm·dom; acknowledgement of personhood; therapeutic communicationterm·key; authentic partnership in continence careterm·dom; and acknowledgement of the effects of stigma. Consistent with Rodgers approach [ 55 , 56 ] for undertaking a concept analysis, the included articles were analysed to identify the key attributes and antecedentsterm of dignityterm·key in relation to continence careterm·dom. Data were also extracted on the consequencesterm of undignified care for patients, carers and organizations.
Antecedentsterm and key attributes The initial analysis of the included studies identified 50 different attributes that were then categorised into individual and environmental (physical and social) levels. These individual attributes were then grouped thematically into 6 main domains (respect, empathy, trust, privacyterm·key, autonomyterm·key and communication). The antecedentsterm and key attributes of dignityterm·key in relation to continence careterm·dom at the individual level are outlined in Table 4 .
Antecedentsterm and attributes of dignity-protective continence careterm·dom at the individual level Another key antecedentterm to dignity-protective continence careterm·dom related to the environment; the immediate physical and social setting in which the care takes place. There were 15 different attributes that related to the impacts of the environment including the design of the long-term careterm·key setting such as ease of access to independent toileting, distance to toilets, obstacles, signage [ 69 , 70 , 77 ] and safety [ 78 ]. A further 9 attributes that related to the social environmental were identified. These included; time to deliver care and flexible work practices [ 32 , 69 , 70 , 72 , 73 , 77 , 79 ], staff knowledge and beliefs about incontinenceterm·key [ 23 , 32 , 69 , 70 , 72 , 73 , 77 ], an adequate number of staff as well as staff who are trained [ 23 , 30 , 32 , 33 , 69 , 70 , 72 , 73 , 77 , 79 ], managerial support and leadership [ 68 – 70 , 77 ], a predictable work environment [ 32 , 72 , 73 ] and regulation that does not constrain caring practices [ 69 , 70 , 77 ].
Consequencesterm of undignified continence careterm·dom The analysis of the included studies identified 23 consequencesterm of undignified continence careterm·dom that were categorised into 3 levels of impact (resident/family member, staff or organisation). These consequencesterm of undignified continence careterm·dom, identified from the concept analysis are detailed in Table 5 .
Consequencesterm of undignified continence careterm·dom Discussion The purpose of this concept analysis was to identify the essential attributes, antecedentsterm’ and consequencesterm of dignity-protective continence careterm·dom for older people who are care dependent who require long-term formal care and support for day-to-day living. Our analysis demonstrates that dignified continence careterm·dom happens when key attributes of care including privacyterm·key, respect, autonomyterm·key, empathy and trust, communication are the focus of the care encounter. Whilst the concepts identified in the current study are similar to previous concept analyses-including: privacyterm·key, autonomyterm·key, respect [ 41 – 46 ], stigmna [ 45 ] and the impact of the cultural/environmental context on the provision of care [ 47 ], prior examinations of dignityterm·key as a central concept in the provision of continence careterm·dom in long-term residential or inpatient formal care settings are lacking.
A key antecedentterm for dignified care was the development of a therapeutic relationship between the care provider and the care recipient. Sometimes referred to as “person-centred careterm·dom” this approach is based on a philosophy of care that promotes personal choice and autonomyterm·key for people in receipt of care [ 81 – 85 ]. The ability to deliver person-centred careterm·dom depends in turn on knowing the person [ 81 , 82 ]. Our analysis of dignityterm·key identified six key domains for the provision of dignified continence careterm·dom including; respect, empathy, trust, privacyterm·key, autonomyterm·key and communication. These findings align well with the findings of a systematic review by Kogan, Wilber, & Mosqueda [ 83 ] who identified six key domains of person-centred careterm·dom for older adults: (a) holistic or whole-person care, (b) respect and value, (c) choice, (d) dignityterm·key, (e) self-determination, and (f) purposeful living or encouragement of continued social roles (p. e1). Whilst there are many similarities between the domains of person-centred careterm·dom and dignity-protective continence careterm·dom there are some key differences relating to privacyterm·key, empathy and communication.
The findings of this study revealed several practices that could uphold the dignityterm·key of older people who are care dependent who require continence careterm·dom. In practice, nursing home staff engage in several practices that result in residents’ incontinenceterm·key being contained and thus concealed, with incontinenceterm·key products, ostensibly to protect residents’ dignityterm·key [ 32 ]. Whilst the desire to protect residents’ dignityterm·key is commendable, the findings of this concept analysis suggest that concealment is only one of several aspects of dignity-protective care.
The use of humour in the care encounter was identified as a key part of therapeutic communicationterm·key and can be dignity-protective or dignity-violating [ 86 , 87 ]. Caregivers may use humour judiciously to alleviate fears and protect dignityterm·key [ 86 ] however they also need to aware of its potential to humiliate people [ 87 ].
Dignity-protective continence careterm·dom is care that is delivered with compassion and respect. Previous studies have highlighted the importance of dignified continence careterm·dom at end of life [ 78 ] however, it is important to consider the subjective nature of dignityterm·key that varies by person and throughout life [ 20 ]. Receiving continence careterm·dom may challenge a person’s sense of dignityterm·key but for some this may be relatively insignificant compared to other problems (eg: pain or other symptoms) [ 78 ]. Dignityterm·key may not be as big a concern at the end of life as is it is for a healthy individual [ 77 ] and studies suggest that here a loss of dignityterm·key may be accepted as a “trade-off” [ 78 ]. Matiti and Trorey used the term perceptual adjustmentterm·dom to describe a process by which a person forecasts the potential indignities that he or she expects to suffer whilst in care, “mentally analyses the situation and adjusts to a level that he or she feels comfortable enough to accept” [ [ 88 ] p. 741]. In relation to continence careterm·dom, fears might relate to being ridiculed or humiliated [ 22 , 75 ], being naked [ 78 ], invasion of personal space, loss of self-control [ 78 ] and loss of independence [ 88 ].
The concept analysis highlighted a number of consequencesterm of undignified continence careterm·dom for patients, carers and organizations, including shame, humiliation, embarrassment (for patients), stress, burnout and feeling emotionally and ethically challenged (for care staff) and financial and staffing pressures (for organizations). Whilst incontinenceterm·key itself is not a life threatening illness, it has been viewed by some as a state worse than death [ 89 ]. It is difficult to ascertain if it is the incontinenceterm·key or the care dependence and subsequent loss of dignityterm·key that incites fear and dread. We hypothesize that the provision of dignified continence careterm·dom may mitigate this fear.
Although some international guidelines identified dignityterm·key as an important part of care, few attempted to define or give examples of what dignityterm·key in relation to continence careterm·dom might look like. One exception to this is the ‘Dignity in Continence Careterm·dom Framework’ [ 30 ] that promotes the dignityterm·key of the person as the overarching goal of care – i.e. dignityterm·key as the person perceives it, rather the perspective of the person delivering care. By defining the attributes of dignity protective continence careterm·dom, our concept analysis builds on, and operationalises the framework. Based on the findings of this analysis, we suggest dignity in continence careterm·dom (dignity-protective continence careterm·dom) is operationalised through practices that promote respect, empathy, trust, privacyterm·key, autonomyterm·key and communication.
Many of the key organizational antecedentsterm to dignified care identified from the analysis suggest that providing dignified continence careterm·dom requires time and resources. As the population ages, the acuity and complexity of care required in long-term careterm·key settings will also increase. Coupled with this, the sector faces severe constraints on budgets, staffing, time and resources, all of which affect the provision of dignified care [ 26 ]. By clarifying the concept dignityterm·key, and exploring how it is manifested in continence careterm·dom, the findings of this concept analysis can support reflection on the identified antecedentsterm and attributes as part of appropriate staff education and training [ 76 , 77 ].
The purpose of this analysis was to develop a better understanding of dignity-protective continence careterm·dom, i.e. to describe and explain the concept of dignityterm·key as it relates to continence careterm·dom for older people in organisations that provide long-term formal care. Whist literature was retrieved from a variety of sources, using a structured search process, there are some limitations. Studies in languages other than English were not accessed and a significant body of literature may therefore have been excluded. Jacelon [ 20 ] makes the point that understandings of dignityterm·key are not only historically and politically relative, they are also culturally dependent. The fact that the search yield information from five Western countries is an important limitation.
Moreover, in a seminal article about dignity-conserving care for people at the end of life, Harvey Chochinov pointed out that “If the preservation of dignityterm·key is to be a targeted goal of palliation, the patient’s sense of dignityterm·key must first be thoroughly understood” [ 5 ]. Our search yielded only seven studies about dignity-protective continence careterm·dom from the perspectives of people with continence careterm·dom needs. Further research about their experiences and preferences for care is required to deepen our understandings of how to define and thus operationalise dignity-protective continence careterm·dom. A broader search may have produced a more comprehensive definition of dignityterm·key. Additionally, employing an alternative method for the concept analysis may have produced a different outcome (eg Avant & Walker’s).
Conclusion This study reveals that although dignityterm·key is subjectively experienced, the key attributes of dignity-protective continence careterm·dom are privacyterm·key, respect, autonomyterm·key, empathy, trust, and communication, in the caregiving encounter. An understanding of the essential attributes of dignity-protective continence careterm·dom could allow caregivers and healthcare professionals to challenge practices that violate dignityterm·key, and recognize caring opportunities for protecting the dignityterm·key of vulnerable and care-dependent older citizens. It could also inform the development of an instrument to evaluate the whether continence careterm·dom is delivered in a way that protects the person’s dignityterm·key.
Supplementary information Additional file 1: Supplementary file 1. Table of Included Studies.
Additional file 2: Supplementary file 2. Table of Excluded Studies.
Acknowledgements We thank Professor Trisha Dunning for her insightful comments on earlier drafts of this manuscript. We also thank Georgie Lee (Research Assistant) for assisting with some of the analysis and Frances Beard (Librarian) for assisting with the development of the searches.
Abbreviations Australian Bladder Foundation Care quality commission Faecal incontinenceterm·dom Urinary incontinenceterm·dom International Consultation on Incontinenceterm·key International Council of Nurses Medical subject headings National Health Service Preferred reporting items for systematic reviews and meta-analyses Residential aged careterm·key homes Universal Declaration of Human Rights Authors’ contributions JO conceptualized the study, assisted with the data collection, interpretation of data, writing, and submission of the article for publication. VDS developed the searches, undertook data collection, analysis, interpretation of data, writing and submission of the article for publication. AH assisted with the data analysis, interpretation and writing and submission of the article for publication. AW assisted with the data analysis, interpretation and writing and submission of the article for publication. All authors read and approved the final manuscript.
Funding We acknowledge funding from the Australian Bladder Foundation (ABF). The ABF played no role in the design of the study and collection, analysis, and interpretation of data in this manuscript.
Availability of data and materials All data generated or analysed during this study are included in this published article [and its supplementary information files].
Ethics approval and consent to participate Not applicable.
Consent for publication Not applicable.
Competing interests The authors declare that they have no competing interests.
Footnotes Supplementary information Supplementary information accompanies this paper at 10.1186/s12877-020-01673-x.
References Associated Data Supplementary Materials Additional file 1: Supplementary file 1. Table of Included Studies.
Additional file 2: Supplementary file 2. Table of Excluded Studies.
Data Availability Statement All data generated or analysed during this study are included in this published article [and its supplementary information files].