Self-Care Academic Research Unit (SCARU), Department of Primary Care & Public Health, School of Public Health, Imperial College London, Charing Cross Hospital, 323 Reynolds BuildingSt Dunstan’s Road, London, W6 8RP UK
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Austen El-Osta, Email: ku.ca.lairepmi@atso-le.a . Corresponding author. Received 2023 Feb 7; Accepted 2023 Jun 26. Copyright © The Author(s) 2023Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
The protocol and data extraction tables can be made available upon request.
Our ability to self-care can play a crucial role in the prevention, management and rehabilitation of diverse conditions, including chronic non-communicable diseases. Various tools have been developed to support the measurement of self-care capabilities of healthy individuals, those experiencing everyday self-limiting conditions, or one or more multiple long-term conditions. We sought to characterise the various non-mono-disease specific self-care measurement tools for adults as such a review was lacking.
The aim of the review was to identify and characterise the various non-mono-disease specific self-care measurement tools for adults. Secondary objectives were to characterise these tools in terms of their content, structure and psychometric properties.
Scoping review with content assessment.
The search was conducted in Embase, PubMed, PsycINFO and CINAHL databases using a variety of MeSH terms and keywords covering 1 January 1950 to 30 November 2022. Inclusion criteria included tools assessing health literacy, capability and/or performance of general health self-care practices and targeting adults. We excluded tools targeting self-care in the context of disease management only or indicated to a specific medical setting or theme. We used the Seven Pillars of Self-Care framework to inform the qualitative content assessment of each tool.
We screened 26,304 reports to identify 38 relevant tools which were described in 42 primary reference studies. Descriptive analysis highlighted a temporal shift in the overall emphasis from rehabilitation-focused to prevention-focused tools. The intended method of administration also transitioned from observe-and-interview style methods to the utilisation of self-reporting tools. Only five tools incorporated questions relevant to the seven pillars of self-care.
Various tools exist to measure individual self-care capability, but few consider assessing capability against all seven pillars of self-care. There is a need to develop a comprehensive, validated tool and easily accessible tool to measure individual self-care capability including the assessment of a wide range of self-care practices. Such a tool could be used to inform targeted health and social care interventions.
The online version contains supplementary material available at 10.1186/s12889-023-16194-6.
Keywords: Self-care, Instrument, Measurement, Proxy-measure, Scale, Assessment, ToolThe global burden of chronic non-communicable diseases (NCD) and so-called ‘lifestyle diseases’ including type II diabetes, cardiovascular disease, stroke and some types of cancers result partly from individuals' inability to self-care [1–3]. There is a growing body of literature regarding the substantial benefits of self-care interventions [4, 5] culminating in the publication of the World Health Organization (WHO) Guideline on Self-Care Interventions in 2019 [6] and 2021 [7].
The WHO working definition of self-care is “the ability of individuals, families and communities to promote health, prevent diseases and maintain health and to cope with illness and disability with or without the support of a healthcare provider” [8]. Self-care necessarily encompasses a wide range of activities related to lifestyle, hygiene, environmental factors and socioeconomic factors [9]. Self-care behaviours refer to the conscious decisions and actions people can make to improve their physical and mental health and wellbeing or to cope with an illness. Webber et al. [1, 10] developed ‘The Seven Pillars of Self-Care’ (7PSC) framework which highlights the importance of (i) knowledge and health literacy, (ii) mental wellbeing, self-awareness and agency, (iii) physical activity, (iv) healthy eating, (v) risk avoidance and mitigation, (vi) good hygiene, and (vii) the rational use of products and services. This framework could be used as a benchmark for comparing self-care practices among the general population and as a tool to support the pragmatic evaluation of self-care initiatives [1, 9–11].
In addition to the generic behaviours indicated in the 7PSC framework, there are also recommended behaviours relating to self-management of specific long-term conditions (e.g., type II diabetes, heart failure) including adherence to medical regimens [12]. Person-level health behaviour is an important determinant of health that significantly affects individual health outcomes and healthcare needs. The individual’s health behaviours play a key role in both disease prevention as well as in the management of chronic conditions [13] and this is reflected by their placement on the Self-Care Continuum, which is a model that describes self-care in the context of resource utilisation [14].
As health systems worldwide struggle to remain solvent, self-care is quickly being recognised as an integral pillar to achieving health for all [15], and policymakers are responding by investing in public health initiatives aimed at promoting self-care among the general population and self-management in patients with NCDs [16]. An important step in assessing the efficacy of these interventions is concerned with measuring an individual’s ability to manage their own health and wellbeing [17]. To date, self-care measurement tools have been used with limited confidence. This is largely due to availability of a vast array of tools, a lack of clarity on the different self-care properties featured in each tool, and the often-pervasive use of the term ‘self-care’ in many contexts including aspects related to personal resilience [1, 11, 18].
Several tools have been developed to measure an individual’s capacity and capability to self‐care for specific health conditions or in distinct population groups such as the elderly. While some tools explicitly use the term “self-care” in their name or items, other tools such as the Patient Activation Measure [19], can be considered as proxy-measures of self-care in the sense that they assess self-care indirectly through other concepts including “patient activation”, “self-management” or “self-monitoring”.
There exist several recent scoping and systematic reviews that evaluated self-care measurement tools [20–22]. Two reviews focused on instruments designed to assess self‐care for condition-specific or chronic disease management, but were not designed to measure the ‘totality’ of self-care [20, 21]. A more recent review focused solely on self-reported measures of self-care, but excluded those assessments carried out by healthcare professionals [22].
To address this gap in knowledge, this scoping review aimed to systematically identify, evaluate and map the various self-care measurement tools for adults. Secondary objectives were to characterise these tools in terms of their content, structure and psychometric properties. Additionally, we aimed to provide a comprehensive evaluation of the content coverage and alignment of each tool with 7PSC framework.
Reporting of this scoping review was guided by the PRISMA extension for scoping reviews [23]; (Supplementary File 1).
We conducted a scoping review of the literature to identify, evaluate and map the various self-care measurement tools designed for adults.
Our search considered tools that assessed health literacy, capability and/or performance of general health self-care practices. Both self-reported and observatory data collection approaches were included. Tools were included if they targeted adults, and either solely measured self-care or featured self-care as a main item in the tool. Those looking at “self-management” were also included. To be included, tools had to appear in peer-reviewed articles published in English between 1 January 1950 and 30 November 2022.
Tools were excluded if they targeted self-care in the context of disease management only, or if they were indicated for a specific medical setting or theme (e.g., blood pressure monitoring) only. We also excluded tools presented only in abstracts and conference proceedings.
Following consultation with a research librarian to help establish search terms, an initial search strategy was devised and applied to MEDLINE and Embase to confirm the relevance of the results. Reference lists from several relevant studies and similar reviews were manually searched to expand the search terms and refine the search strategies. Subject headings were adapted for each database.
Searches were carried out on 1 December 2022 (searching for studies published between 1 January 1950 and 30 November 30, 2022). We searched the following four databases: Embase, PubMed, PsycINFO and CINAHL using a variety of MeSH terms and keywords including (“self-care” OR “self-management” OR “self-monitoring” OR “self-assessment”) AND (adult*) AND (“instrument*” OR “questionnaire*” OR “scale*” OR “assessment’’). The detailed search strategy for each database is presented in Supplementary File 2. No manual searching was performed, but we screened the references of all included studies.
Throughout this paper, we use the word “tool” as an umbrella term for all those that were searched, including instrument, scale, questionnaire and assessment.
The studies retrieved were first imported into Endnote X7 to help identify and remove duplicates. Included studies were then entered in Covidence, where additional duplicates were removed. Titles and abstracts were screened by two researchers. The full text of potentially eligible studies was then independently assessed by two researchers. Studies, where the primary reviewers disagreed, were reviewed independently by a third researcher; any remaining disagreement was resolved through team discussion.
Since the aim of this review was to identify tools, rather than studies, we first screened for any articles and studies that either described the tool or used the tool as part of an intervention. Once the eligible tools were identified, we searched for their “primary reference” studies, i.e., the initial publications describing their development, testing and intended use, even though they might not have been identified through our initial search. In case the tool was revised, the publications presenting the revision were also included.
Following full-text screening, data extraction was carried out by one researcher for each tool based on the identified “primary reference” using a comprehensive, standardised extraction form. Data were extracted on a variety of specifications for all identified tools including a brief description, reference study authors, year of publication, country of origin, tool aims (prevention, rehabilitation, or management), validity and reliability tests, number of items, scoring system, scale used, administration method (whether measures were self-reported and/or observer-reported) and interpretation scores. The time needed to complete the questions in the self-care measurement tool was also recorded. Unless already indicated, we calculated the average time it would take to complete the tool by assigning a 6-s interval for each item if the tool was completed by the self-carer, or 10 s if it was completed by a healthcare professional or other external person.
A qualitative content assessment was performed on each identified tool using 7PSC framework [1, 10, 24] to guide the analysis. This framework provides a comprehensive summary of the principal domains or ‘pillars’ of self-care practice related to: (i) knowledge and health literacy, (ii) mental well-being and self-awareness, (iii) physical activity, (iv) healthy eating, (v) risk avoidance, (vi) good hygiene, and (vii) the responsible use of products and services. Each tool was reviewed against 7PSC framework to determine the extent it captured information on each pillar. Qualitative content assessment examined the extent to which the questions covered specific aspects of self-care was performed on each identified tool.
An assessment of whether a tool collected data relevant to each of the seven pillars was recorded and scored using a Black, Red, Amber and Green (BRAG) traffic light system, where Black denoted that the instrument was not available to review, and no decision could be made (score = 0), Red indicated that the tool was available, but a pillar was not addressed (score = 0), Amber indicated that at least one item of the questionnaire might be associated to one of the pillars, whereas Green indicated that data was available, and a pillar was explicitly addressed (score = 1). Data were reported on a configuration matrix that also recorded the name, year, number of items and the theoretical framework underpinning each tool where available. The number of items in a cell indicated that the tool either fully or partially addressed one of the pillars of self-care. Where none of the items in a tool addressed a given pillar, the cell was coloured red. Where the item(s) in a tool addressed a pillar, the item(s) or questions(s) reference or number was included in the cell; the cell was then either highlighted in green to denote full alignment, or amber in case the question in the tool only partially addressed the pillar (denoted with *). Black denoted that the tool itself could not be found so no assessment regarding the alignment with the pillars could be made. This analysis resulted in a configuration matrix that characterised the various tools used to measure self-care in adults in non-mono-disease specific or medicalised settings.
A total of 38 tools, described in 42 primary reference studies, were identified through our search as meeting the inclusion criteria for this review (Fig. 1 ).
Table Table1 1 presents the main characteristics of the 38 included self-care measurement tools. The majority (n = 26; 68.4%) of tools originated from North America (24 from USA, two from Canada) while the remaining originated from the UK (SFS [25], MiC questionnaire [26]), Norway (LSCS [27, 28]), Spain (ASA-R [29]), Finland (SCHDE [30]), the Netherlands (ASA-A) [31] SeMaS [32]) and Italy (SCI – Patient Version [33]). Four tools, the EQ-5D [34], SASS-14 [35], SSCII [36] and the SASE [26] resulted from international collaborations.
Salient characteristics of self-care assessment tools
System: Ordinal – Each question is scored from 1–4
Total Score: 18–72 points; Higher score indicates greater disability
System: Likert 1–5 scale (1: Never to 5: Always)
Total points: 0–100 points (standardised score); Higher score indicates better self-care
Depends on version
More than half (n = 24; 63.2%) were aimed at general health and self-care assessment, whereas the remaining tools (n = 14; 36.8%) were directed at specific populations (n = 5, 13.2%) including elderly patients (PAMIE [40], SASE [59], SCHDE [30], ASA-R [29] and MiC questionnaire [26]); in-patients (n = 1; 2.6%) including the Barthel Index [38], those diagnosed with chronic illness or disabilities (n = 8, 21%) including PULSES [37], the RDRS [39], PAMIE [40], MBI [47], RDRS-2 [51], PAM [61], SeMaS [32] and SCCII [36], or with psychiatric disorders (n = 1, 2.6%) as with SFS [25].
The number of items within each tool ranged from five questions in EQ-5D [34] to 121 in SFS [25], with an average of 34.4 items per tool (Table (Table1). 1 ). The method of data collection also varied with 11 tools (28.9%) requiring a staff member or an individual familiar with the respondent to record the data, whereas 20 (52.6%) tools were suitable for self-administration. Six tools (15.8%) had versions adapted to various methods of administration. One tool (SCHDE [30]) did not specify an intended method of administration.
The scoring system of the tools also varied with most (n = 36; 94.7%) using numerical integer rating scales, whereby the sum was used to produce a final score intended to reflect an individual’s ability to self-care. The range of possible scores ranged between 0 and 410 points. The assigned value of an individual’s overall score also varied; 26 tools (68.4%) interpreted higher scores as reflecting better self-care capability and performance, whereas four (10.8%) considered higher scores as reflecting poorer practice or adherence to good health-seeking self-care behaviours. It was not possible from the literature to identify the direction of the scoring for eight tools (21.6%); Table Table1 1 .
The time needed to complete data collection was reported by only 36.8% (n = 14) of tools. For those that did not provide a clear indication of the time required for their completion (n = 24; 63.2%), we adopted a simplistic approach to modelling, where each question was assumed to require an average of 6 s to complete. The average time required to complete data collection ranged from 2 to 30 min (average = 12.8 min). Overall, the estimated time needed to complete data collection ranged from 1.5 to 20 min minutes across the 38 tools identified (Table (Table1 1 ).
Reliability and validity assessments were recorded for each tool when available. These were found in the primary reference studies which described the development, testing and adjustment processes for each tool. Thirty-six tools (94.7%) featured in published studies confirming validity and 35 (92.1%) had published studies confirming reliability.
Study authors confirmed that eight (21.1%) tools used Orem’s Theory of Self-Care as the underpinning theoretical framework, whereas 14 tools did not refer to a specific theoretical framework (Table (Table2). 2 ). The remaining 17 tools (47.4%) were based on one of the following theoretical underpinnings; Self-Care of Chronic Illness Theory (PAMIE [40], SCI – Patient Version [33]), Item Response Theory (MBI [47]), Pender’s Health Promotion Model (HPLP II [57]), Self-efficacy theory (SUPPH [58]), Pörn's theory of health and adaptedness (SASE [59]), The General Health Policy Model (LSCS [27, 28]), Consumer driven health care & Chronic Illness Care Model (PAM [44] and PAM-13 [19]), Middle-range theory of self-care in home-dwelling elderly (SCSE Scale [65]), Attuned representational model of self (MSCS) [63]), Middle Range Theory of Self-Care of Chronic Illness (SCCII) [36], the Seven Pillars of Self-Care framework (SASS-14) [35]), or were centred on activation (CHAI [64]) or resilience (MiC questionnaire [26]); Table Table2 2 .
Theoretical underpinning of self-care assessment tools
| Tool | Year | Items | Theoretical underpinning |
|---|---|---|---|
| PULSES [37] | 1957 | 6 | Unspecified |
| Barthel Index (BI) [38] | 1958 | 10 | Unspecified |
| Rapid Disability Rating Scale [39] | 1967 | 16 | Unspecified |
| Physical & Mental Impairment of Function Evaluation (PAMIE) [40] | 1972 | 77 | Self-Care of Chronic Illness Theory |
| Kenny Self-Care Evaluation (KSCE) [41] | 1973 | 85 | Unspecified |
| McMaster Health Index Questionnaire (MHIQ) [42] | 1976 | 59 | Unspecified |
| Social Functioning Schedule (SFS) Semi structured interview [25] | 1979 | 121 | Unspecified- previous work with interview formats used for content of schedule |
| Exercise of Self-Care Agency scale (ESCA) [44] | 1979 | 43 | Orem's theory of self-care |
| Denyes Self- Care Practice Instrument (DSCPI-90) [45] | 1980 | 18 | Orem's theory of self-care |
| Denyes Self-Care Agency Instrument (DSCAI-90) [46] | 1980 | 34 | Orem's theory of self-care |
| Modified Barthel Index (MBI) [47] | 1981 | 15 | Item Response Theory (IRT) |
| Functional Status Rating System (FSRS) [48] | 1981 | 30 | Unspecified- based on method developed by the Hospitalization Utilization Project of Pennsylvania (HUP) |
| Perceived Self-Care Agency Questionnaire (PSCAQ) [49] | 1981 | 53 | Orem's theory of self-care |
| Rapid Disability Rating Scale (RDRS-2) [51] | 1982 | 18 | Unspecified- Successor of RDRS-1967 |
| Performance Assessment of Self-Care Skills (PASS) [52] | 1984 | 26 | Unspecified- but combines two conceptual foundations of assessment: interactive assessment & graduated prompting |
| Functional Independence Measure (FIM) [53] | 1987 | 18 | Unspecified |
| Self-as-Carer Inventory (SCI) [54, 55] | 1988 | 40 | Orem's theory of self-care |
| Appraisal of Self-Care Agency Scale–version A (ASA-A) [31] | 1991 | 24 | Orem’s theory of self-care |
| Short-Form Health Survey (SF-36) [56] | 1992 | 36 | Unspecified |
| EuroQol EQ-5D Quality of Life Scale [34] | 1993 | 5 | Unspecified |
| Health Promoting Lifestyle Profile II (HPLP II) [57] | 1966 | 52 | Pender’s Health Promotion Model |
| Strategies Used by People to Promote Health (SUPPH) [58] | 1996 | 29 | Self-efficacy theory |
| Self-Care Ability Scale for the Elderly (SASE) [59] | 1996 | 53 | Pörn’s theory of health and adaptedness |
| Quality of Well-Being Scale (QWB) [60] | 1996 | 71 | The General Health Policy Model |
| Lorensen’s Self-care Capability Scale (LSCS) [27, 28] | 1998 | 56 | Orem's theory of self-care |
| Patient Activation Measure (PAM) [61] | 2004 | 22 | Consumer driven health care & Chronic Illness Care Model |
| Patient Activation Measure (PAM)-13 [19] | 2005 | 13 | Consumer driven health care & Chronic Illness Care Model |
| Self-Care of Home-Dwelling Elderly (SCHDE) [30] | 2007 | 82 | Middle-range theory of self-care in home-dwelling elderly |
| Therapeutic Self-Care (TSC) [62] | 2014 | 12 | Unspecified |
| Self-Management Screening (SeMaS) [32] | 2015 | 27 | Unspecified- Derived from validated questionnaires |
| Appraisal of Self-Care Agency Scale – Revised (ASA-R) [29] | 2017 | 15 | Orem's theory of self-care |
| Mindful Self-Care Scale (MSCS) [63] | 2018 | 42 | Attuned representational model of self (ARMS) |
| Self-Care of Chronic Illness Inventory (SCCII) [36] | 2018 | 10 | The Middle Range Theory of Self-Care of Chronic Illness |
| Consumer Health Activation Index (CHAI) [64] | 2018 | 10 | Centred on activation |
| Making it CLEAR (MiC) questionnaire [26] | 2021 | 34 | Centred on resilience |
| Self-Care Activities Screening Scale (SASS-14) [35] | 2021 | 14 | Seven Pillars of Self-Care framework |
| Self-Care Self-Efficacy (SCSE) Scale [65] | 2021 | 10 | Middle Range Theory of Self-care of Chronic Illness |
| Self-Care Inventory – Patient Version [33] | 2022 | 20 | Self-care of Chronic Illness Theory |
The motivation behind developing the tools varied across tools: 17 (44.7%) were focused on prevention, nine (23.7%) focused on rehabilitation, nine (23.7%) were concerned with self-management of existing conditions, two (5.2%) focused on both prevention and management, and one (2.6%) tool addressed both health management and promotion (Table (Table1). 1 ). A contextual analysis showed that this focus shifted over time from rehabilitation to prevention assessments, with the conversion occurring in the late 1980s. The method of administration of the instruments also shifted from observatory remarks reported by healthcare professionals to self-reported answers by the target population, with the transition occurring in the late 1970s to early 1980s (Table (Table1 1 ).
Excluding PSCAQ [49] and SCHDE [30], the majority (36/38, 94.7%) of the included tools could be readily accessed in order to carry the content assessment. The 36 accessible tools were analysed in respect to their alignment with 7PSC framework. The configuration matrix presented in Table Table3 3 highlights the extent that each instrument measured or covered criteria relevant to each pillar of self-care.
Appraisal of the self-care tools using the Seven Pillars of Self-Care framework
A matrix of configurations recorded the name, year, number of items and theoretical framework (if available) of each tool. The number of items in a cell indicated whether the tool fully or partially addressed one of the pillars of self-care. A black, red, amber and green (BRAG) traffic light system was used, where black denoted that the instrument was not available to review, and no decision could be made (score = 0), ed indicated that the instrument was available, but a pillar was not addressed in the tool (score = 0), amber indicated that at least one item of the questionnaire partially addressed a pillars (denoted with *), and green indicated that data was available, and the pillar was explicitly addressed in the tool item (score = 1). KEY: Pulses (L) Lower limb functions, (U) Upper limb functions], [BI (MI) Mobility indoors, (T) Transfers, (S) Stairs, (TU) Toilet use, (B) Bladder, (F) Feeding, (Ba) Bathing, (D) Dressing, (G) Grooming], [KSCE (MIB) Moving in Bed, (RAS) Rising and sitting, (SiT) Sitting transfer, (StT) Standing transfer, (TT) Toilet Transfer, (Lo) Locomotion, (UTA) Upper trunk and arms, (LTL) Lower trunk and legs, (LE) Lower extremities], [MBI (Ba) Bathing, (Tr) Transfer, (Mo) Mobility, (Dr) Dressing], [PASS (FM) Functional Mobility, (BADL)Basic activities of daily living, (IADLP) Instrumental activities of daily living-physical, (IADLC) Instrumental activities of daily living-cognitive]. + + + indicates that the tool either partially (amber) or fully (green) addressed all seven pillars of self-care [19, 25–42, 44–49, 51–65]
Overall, the number of pillars addressed in the tools ranged from 1 to 7 (average = 4.6; when considering those that partially (amber) or fully (green) addressed each pillar Table Table2). 2 ). The tools covered a wide range of self-care practices, with knowledge and health literacy, physical activity and healthy eating being the most represented pillars. The risk avoidance and mitigation pillar, and the responsible use of products and services pillar were less represented overall (Table (Table3). 3 ). In descending order, the most readily assessed pillars were: Pillar 3: physical activity (n = 33, 91.7%); Pillar 2: mental wellbeing (n = 28, 77.8%); Pillar 1: knowledge and health literacy (n = 25, 69.4%); Pillar 5: risk avoidance (n = 24, 66.7%); Pillar 6: good hygiene (n = 19, 52.8%); Pillar 7: rational use of products (n = 19, 52.8%); and, Pillar 4: healthy eating; (n = 18, 50%).
Only five (13.9%) out of the 38 tools included question that are relevant to all seven pillars of self-care: Rapid Disability Rating Scale (RDRS) [39]; Functional Status Rating System (FSRS) [48]; Appraisal of Self-Care Agency Scale–version A (ASA-A) [31]; Lorensen’s Self-care Capability Scale (LSCS) [27, 28]; Self-Care Inventory (SCI) – Patient Version [33].
To our knowledge, this is the first systematic scoping review that attempted to characterise and map the key concepts underpinning non-mono-disease-specific self-care measurement tools and the main sources and types of evidence available.
Our review showed that self-care assessment was historically geared towards chronic disease management and rehabilitation. This standpoint de-emphasised individual responsibility for health, as patients were perceived as passive recipients of healthcare. The notion that individuals should take more ownership and responsibility for their own health arose in the late 1990s due to a shift in disease patterns from acute to chronic conditions [11, 66] and coincided with the growing ‘lifestyle medicine’ movement where individuals are encouraged to take more interest as active participants in their own health and wellbeing journey [67]. This trend and the increasing focus on self-care in the context of health promotion and health maintenance continues as global health systems worldwide struggle to remain solvent [68]. Whereas most tools identified were aimed at general health and self-care assessment, some instruments were more specific and directed at specific segments of society including elderly patients, in-patients, or those diagnosed with chronic illness, disabilities or psychiatric disorders.
Our analysis of key trends over time showed that newer tools tended to utilise self-reported methods of data collection which is a significant departure from older tools that primarily utilised observer and interview-style methods of data collection. This shift towards self-reporting underscores the transition in healthcare strategies towards actively involving the general population in their own health [69], and has several benefits including empowering individuals to engage in the assessment of their self-care abilities, whilst reflecting on their personal motivation and capacity without requiring direct interaction with healthcare professionals. To avoid the pitfall of introducing bias in self-reported measures, some tools utilised mixed method approaches which incorporated the observer’s input alongside self-reporting. This provides a comprehensive understanding of self-care behaviour through the objective lens of an observer as a complement self-reported data and a person’s perception of their individual experiences [69]. In the future, mixed methods approaches to measure individual self-care capacity and capability may be encouraged, especially if the measures are used to inform self-driven healthcare solutions [70], or to inform decision making as when targeting health and social care interventions post-discharge or during rehabilitation.
We observed a lack of consensus in the literature regarding the definition of patients with complex needs, whereas the focus of the measurement tools identified also shifted from being predominantly management and rehabilitation-focused to being prevention-focused. This mirrored the general trend in service provision as it transitioned from ‘cure’-oriented to ‘care’-oriented healthcare services [71]. Prevention-focused interventions utilise an upstream approach aimed at improving individual long-term health, wellbeing and quality of life and improving population health [72] positing prevention and health promotion as key shared values among healthcare policymakers and the general population [73]. Preventive measures also have significant healthcare cost-saving potential [74, 75], and this applies especially to NCDs which require frequent hospital admissions if inadequately managed [76].
The Seven Pillars of Self-Care framework is an easily accessible framework that conveniently describes the rage of activities that individuals could practice to promote health and wellbeing. The analysis presented in Table Table3 3 revealed some interesting chronological trends since the late 1990s including an increasing emphasis on assessing ‘knowledge and health literacy’, ‘risk avoidance’, and the ‘responsible use of products and services’ pillars, reflecting the shift towards patient-centred care and improved access to online health information.
People with low health literacy are less able to manage chronic diseases, utilise prevention services, or practice healthier lifestyles [77–79]. Despite this, health literacy (Pillar 1) was one of the least addressed pillars in the tools overall. As there are already numerous validated tools to measure health literacy [80], it is reasonable that most self-care tools did not include detailed measures for this domain.
Whereas promoting and improving hygiene is one of the founding principles of modern-day public health [81–83], the fall in communicable diseases and the rise in the overall widespread uptake of hygiene practices in the last 20 th Century has shifted the focus away from hygiene in the Western self-care space [84]. Many recommended hygiene practices that once required major public health campaigns to incorporate into individual daily practices are now accepted as part of everyday life [85]. The apparently systemic exclusion of relevant measures for good hygiene practices in the tools developed over the last two decades indicates a need for a renewed interest in this cardinal aspect of self-care, and a reiteration of the importance of this pillar in pursuit of health and wellbeing. In the contemporary setting, this should extend to relatively new concepts including digital hygiene practices including limiting exposure to nocturnal blue light to tackle insomnia in the digital age [86].
Overall, the findings suggest that while some self-care measurement tools addressed key aspects of health and wellbeing, other components including risk avoidance and good hygiene require further development. The lack of a comprehensive general self-care assessment tools that address all the cardinal aspects of self-care (e.g., the seven pillars) highlights the need for more holistic approaches to self-care monitoring and evaluation. This is particularly relevant in the context of the United Nations' Sustainable Development Goal 3 which aims to ensure healthy lives and promote wellbeing for all. Assessing an individual’s self-care capability across all seven pillars throughout the life course could also support healthy ageing and the successful implementation of WHO Integrated Care for Older People (ICOPE) framework [87] which includes self-care as a core component to optimise health outcomes for older adults.
The findings of our review have implications for future research and practice in the field of self-care. Firstly, there is a need for a consensus on the definition of self-care and the development of a standard measurement tool that could be used to evaluate the totality of self-care activities in the context of community, health and social care perspectives. This will enable healthcare providers to evaluate the effectiveness of self-care promotion initiatives and identify areas for improvement. Secondly, to provide a comprehensive understanding of health-seeking self-care behaviours, mixed methods approaches should be considered when developing self-care measurement tools. This would enable researchers to better understand the relationship between self-care behaviours and health and social outcomes and identify the most effective strategies for promoting self-care among adult populations in various settings (e.g., home, workplace, community and assisted care settings). Thirdly, our review highlights the need for more standardised and validated self-care measurement tools that cover the full range of self-care practices [24] and greater more consistency in the scoring, interpretation and administration of the tools. The lack of information on the time needed to complete the tools coupled to the lack of reliability and validity assessments of some tools suggest a need for more rigorous psychometric testing. Finally, future research should focus on the development of culturally appropriate self-care measurement tools and the validation of existing tools in diverse populations, considering factors such as diversity, equality and inclusion, language and digital literacy, which would ensure that self-care measurement tools are tailored to the specific needs of populations and are appropriate for the group being served. The routine use of a validated tool that measures individual self-care capability in adults, or specific population groups, such as older adults or individuals with specific chronic conditions, across several pillars and psychosocial domains could help guide targeted health and social care interventions. This ability to measure and quantify improvements in individual self-care capability could in turn could enable policymakers to invest in evidence-based public health initiatives for patient and public benefit. If geared at the general adult population, a desirable tool would be self-reported (on paper or online), but the instrument could also be designed to allow completion using interview-style techniques although this approach could impact on scarce health and social care resources.
Capacity is a clinical concept referring to an individual’s decision-making capability [88]. Individuals with the capacity to self-care are aware of their self-care requirements are and how to meet them. Measuring a person’s self-care capacity and capability is especially relevant prior to hospitals or rehab discharges [27, 28].
Future research should explore the use of mixed methods approaches and consider cultural and socioeconomic factors in the development of self-care measurement tools. An ideal tool to measure self-care would be a comprehensive, validated and standardised instrument that covers all aspects of 7PSC framework. It would have clear and consistent scoring systems, interpretation and administration methods, and would be easy for individuals to complete. Additionally, the tool would have established psychometric properties, such as reliability and validity, and information on the time needed to complete the tool. A key research and development priority is to create and validate a modular self-care measurement tool that accounts for all seven pillars of self-care with a clear and consistent scoring system, and interpretation and administration methods.
Study authors are in part addressing this research and development priority by progressing the development of the Self-Care CAPabiIity AssessmeNt (CAPITAN) Toolkit [89]. CAPITAN is based on 7PSC and the Self-Care Matrix [1] which is a unifying framework for self-care published in 2019. The formative CAPITAN tool includes questions relevant to 7PSC, and additional items to assess aspects relevant to patient activation, digital literacy and the psychosocial domain of self-care including measures concerned with social connectedness. The inclusion of these other factors is crucial as they likely influence the capacity of individuals to self-care and engage with the community and health and social care practitioners and services to manage and improve their personal health and wellbeing journey [89]. To optimise use, all future self-care assessment tools should be designed to be more inclusive, should ideally be translated into various languages and made accessible to different populations and specific demographics or those with specific health conditions.
Our review sought to map and assess existing self-care tools. To do so we opted for a pragmatic approach to scoping and content assessment, with broad inclusion criteria and corresponding search strategies. This contrasts with the focused question of a systematic review, which is answered from a relatively narrow range of quality-assessed studies [90]. We included a wide spectrum of tools that assessed self-care behaviours in community dwelling adults, either directly or indirectly using suitable proxy-measures. One of the major strengths of our study is that it incorporated a representative sample of tools developed over the last seven decades and provided insight on the scope and chronological trends in self-care measurement by including at least one tool from each decade. Identifying these trends provides a basis for recommendations to improve these tools. Another key strength was incorporating the use of 7PSC framework to determine the domains covered by each tool. Although 7PSC framework does not address all factors affecting self-care capacity such as socio-economic factors for example, the framework could be used as a lens to compare key features of the tools.
A key limitation of our study was not using extant frameworks like the COnsensus-based Standards for the selection of health status Measurement Instruments (COSMIN) [91]. The use of COSMIN or other such tools [92, 93] to more fully characterise the 38 instruments we identified in this scoping review was not deemed necessary given the scoping nature of our review and the broad aims we sought to address. In addition, no specific guideline for conducting the scoping review was used, however authors followed the PRISMA extension for scoping review [23] to guide their reporting. Another limitation arose from our inability to access two self-care measurement instruments which restricted their inclusion in our content assessment. Further, our study excluded tools intended for children and adolescents [94, 95] and only included studies published in English, which is particularly relevant given that several tools identified in the early screening process of the review originated from non-English speaking countries and may have only been published in their respective languages. We also acknowledge that the method used to compare the tools using 7PSC framework lends itself to bias due to the subjective nature of the content assessment. However, this was in part mitigated by the authors who worked in pairs to reduce bias and listed all relevant items to facilitate external verification.
Positive health behaviours and ongoing self-care activities are important aims for health systems worldwide. This systematic scoping review highlights the need to develop a comprehensive and unifying framework that enables consistency in the design and assessment of new measurement instruments, particularly given the rising importance of self-care monitoring and evaluation. Future research should focus on developing a comprehensive self-care measurement tool that assesses individual self-care capability across all seven pillars of self-care to guide routine assessments of individual self-care capability and to inform the delivery of targeted health and social care interventions in adult populations.
