RETRACTED ARTICLE: Tools for measuring individual self-care capability: a scoping review

Abstract

Background

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.

Objective

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.

Design

Scoping review with content assessment.

Methods

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.

Results

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.

Conclusions

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.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12889-023-16194-6.

Background

The 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.

Methods

Reporting of this scoping review was guided by the PRISMA extension for scoping reviews [23]; (Supplementary File 1).

Inclusion and exclusion criteria

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.

Search strategy

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.

Study selection

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.

Data extraction

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.

Content assessment

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.

Results

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).

Fig. 1.

PRISMA flowchart

Table 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.

Table 1.

Salient characteristics of self-care assessment tools

#	Tool	Year	Origin	Brief Description	Stage	Target	Items	Time	Completed by	Scoring System
1	PULSES [37]	1957	USA	Predicts rehabilitation potential, evaluates patient progress & assists in program planning. Components: P = physical condition; U = upper limb functions; L = lower limb functions; S = sensory components (speech, vision, hearing); E = excretory functions; S = mental & emotional status	Rehabilitation	Specific – Chronic illness or disability	6	1.5 min (est.)	Staff, self-reported	System: Ordinal (Normal-Mild-Moderate-Severe) which are given a point score of 1–4. Total Score: 6–24 points; Higher score indicates lower levels of self-care ability
2	Barthel Index (BI) [38]	1958	USA	Measures functional independence in personal care & mobility. Developed to monitor performance in long-term hospital patients before/after treatment & to indicate the amount of nursing care needed. Completed by a health professional from medical records or from direct observation. Largely replaced by the Modified Barthel Index	Rehabilitation	Specific – In-patients & post-discharge	10	2–10 min	Staff	System: MCQ with ordinal points. Total Score: 0–100 points; Higher score indicates higher level of self-care ability
3	Rapid Disability Rating Scale [39]	1967	USA	Developed as a research tool to summarize the functional capacity & mental status of elderly long-stay patients. Assesses: ADLs, sensory abilities, mental capacities, dietary changes, continence, medications & confinement to bed	Rehabilitation	Specific- Chronic illness & disability	16	3.2 min (est.)	Staff	System: Ordinal – 4-point Likert scale (1–4). Total Score: 18–72 points; Higher score indicates greater disability
4	Physical & Mental Impairment of Function Evaluation (PAMIE) [40]	1972	USA	Clinical rating scale of physical, psychological, & social disability in chronically ill, institutionalized elderly patients. Scores ten factors: 1. Self-care, 2. Belligerence, irritability, 3. Mental confusion, 4. Anxiety, depression, 5. Bedfast, moribund, 6. Behavioural deterioration, 7. Paranoia, suspicion, 8. Sensory & motor function, 9. Withdrawn, apathetic, 10. Ambulation	Rehabilitation	Specific—Chronic illness, elderly	77	10–15 min	Staff	System: Mixed – Combination of Y/N questions, ordinal questions. Total Score: 85 points; Higher score indicates lower levels of self-care ability
5	Kenny Self-Care Evaluation (KSCE) [41]	1973	USA	A clinical rating scale that records functional performance to estimate a patient’s ability to live independently at home or in a protected environment. Intended for use in setting treatment goals & evaluating progress. Limited to physical activities, however the revised version covers 7 aspects of mobility & self-care: moving in bed, transfers, locomotion, dressing, personal hygiene, bowel & bladder &feeding	Management	General	85	25 min	Staff	System: Ordinal – Observed tasks are rated on a 3-point scale (1. “Totally independent” 2. “Requiring assistance or supervision” 3. Or “Totally dependent.” Tasks summed up to give an Activity Score, which are summed up to give a total Categorical Score. Total Score: Categorical score of 0- 4; Higher score indicates higher levels of self-care ability
6	McMaster Health Index Questionnaire (MHIQ) [42]	1976	CAN	Assesses physical, emotional, & social function. Intended for use in health services evaluation & in clinical research involving outpatients & those living in the community. Includes disability/handicap, life events & the balance between physical, emotional & social coverage	Prevention	General	59	20 min	Self-reported, staff	System: Ordinal – Each question is scored from 0 (extremely poor function) to 8 (extremely good function). Total Score: 0–44 points. Higher score indicates higher level of self-care ability
7	Social Functioning Schedule (SFS) Semi structured interview [25]	1979	UK	Assesses normal social functioning in patients using semi-structured interview design. Compares social functioning with personal expectations. Includes 12 dimensions: Employment, household chores, contribution to household, money self-care, marital relationship, care of children, patient-child relationships, patient-parent & household relationships, social contacts, hobbies & spare time activities. Covers a patient’s problems in social interaction, role performance & satisfaction. Later developed into the Social Functioning Questionnaire (SFQ) in 1989 [43]	Prevention	General population & patients with psychiatric disorders	121	10–20 min	Staff	System: Visual Analogue Scale – Runs from ‘none’ to ‘severe difficulties. Total points: TBC. Higher score indicates absence of identifiable problems in the 12 tested sections
8	Exercise of Self-Care Agency scale (ESCA) [44]	1979	USA	Composed of 4 subscales that measure a person’s ability or power to exercise self-care: 1/ an active versus passive response to situations 2/ individual motivation, 3/ knowledge base of the individual 4/ the person’s sense of worth. Responses are summed to obtain a total agency score	Prevention	General	43	4.3 min (est.)	Self-reported	System: Ordinal – 5-point Likert-type. Total points: 0–128 points; Higher score indicates higher level of self-care agency
9	Denyes Self- Care Practice Instrument (DSCPI-90) [45]	1980	USA	Measures self-care practice or the practice of self-care activities performed by the respondents in meeting their universal self-care requisites. It includes their valuing of health, healthy eating, decision-making capacity, ego strength & feelings. Initial version developed & tested in 1980 with adolescents, several modifications made to the instrument in 1988 & 1990 which make up the current version: DSCPI-90 presented here. Can be used with adolescent & adults	Health promotion & health management	General	17–22	5–10 min	Self-reported	System: Mixed – Respondents are asked to rate questions from 0 (‘none of the time’) to 100 (‘all of the time’). Total Score: 1–100; Higher score indicates higher self-care practice
10	Denyes Self-Care Agency Instrument (DSCAI-90) [46]	1980	USA	Measures self-care agency or the ability of the respondent to meet their universal self-care requisites. It includes ego strength, valuing of health, health knowledge & decision-making capacity, energy, feelings, attention to health	Prevention	General	34	15–20 min	Self-reported	System: Mixed – Respondents are asked to rate questions from 0 (‘nothing’) to 100 (‘everything’). Total points: Algorithm used to obtain a total score + 6 scale scores; Higher score indicates higher self-care abilities
11	Modified Barthel Index (MBI) [47]	1981	USA	Extension of the Barthel Index to cover 15 topics. Measure of physical disability widely used to assess activities of daily living in stroke patients or those with other disabling conditions. Translated into over 30 languages	Rehabilitation	Specific – Patients with disabling conditions	25	10–15 min	Staff or an individual familiar with the patient	System: Ordinal– 4-point scale system. Total Scores: 0–100 points; Higher value indicates higher level of self-care ability
12	Functional Status Rating System (FSRS) [48]	1981	USA	Estimates the assistance required by rehabilitation patients in their daily lives. Covers independence in ADL, ability to communicate, & social adjustment. Includes the following functional states: Self-care, Mobility, Communication, & Psychosocial adjustment Cognitive function	Rehabilitation	General	30	15–20 min	Staff	System: Ordinal – Each question is scored from 1–4 with 0.5 intervals (1: unable, 1.5 maximum assistance, 2: moderate assistance…). Total points: 30–120 points; Higher score indicates higher level of self-care ability
13	Perceived Self-Care Agency Questionnaire (PSCAQ) [49]	1981	USA	PSCAQ was not appropriate to measure the self-care agency in older people because many items were unclear & incomprehensible to them. Also deemed not appropriate for non-institutionalised patients [50]. Internal consistency assessed by Cronbach’s alpha (Cronbach’s alpha is a measure of internal consistency, that is, how closely related a set of items are as a group) rated negative as not all the factors showed values greater than 0.7	Prevention	General	53	5.3 min (est.)	Self-reported	System: Ordinal – Each question is scored from 1–5 (1: Never like me, 5: always like me). Total points: 53–265 points; Higher score indicates: Not specified as instrument could not be accessed
14	Rapid Disability Rating Scale (RDRS-2) [51]	1982	USA	A revised version of the 1967 Rapid Disability Rating Scale. Item definitions sharpened & directions expanded to indicate that ratings are based upon the patient’s performance regarding behaviour, & that prostheses normally used by the patient should be included in the assessment. Addition of 3 items & response items changed from three-point to four-point ratings to increase group discrimination & make the scale more sensitive to changes in treatment	Management	Specific – Disability	18	2 min	Staff or an individual familiar with the patient	System: Ordinal – Each question is scored from 1–4 Total Score: 18–72 points; Higher score indicates greater disability
15	Performance Assessment of Self-Care Skills (PASS) [52]	1984	USA	A performance-based, criterion-referenced, observational tool designed to assist practitioners in documenting functional status & change & assess everyday tasks necessary for living in the community. Consists of 26 core tasks; 4 functional domains: functional mobility (n = 5) personal self-care (n = 3), instrumental activities of daily living with a cognitive emphasis (n = 14) & those with a physical emphasis (n = 4). Tasks are rated on 3 distinct concepts: Independence, Safety, & Adequacy of outcome. Each concept is scored on a predefined four-point ordinal scale (0–3). Two versions: PASS-Clinic & PASS-Home	Prevention	General	26	10–20 min (est.)	Staff but also self- report (PASS-SR), proxy-report (PASS-PR), & clinical judgment (PASS-CJ)	System: Ordinal – PASS tasks are rated on three distinct concepts: Independence, Safety, & Adequacy of outcome. Each concept is scored on a predefined four-point ordinal scale (0–3). Total Score: Depends on number of tasks are tested (can be adapted to each patient). Highest grades indicate highest independence, safety & adequacy
16	Functional Independence Measure (FIM) [53]	1987	USA	Assesses physical & cognitive disability by assessing level of care required. Used to monitor patient progress & to assess outcomes of rehabilitation. Used for patients with motor impairment & has been widely adopted by rehabilitation facilities. Components: independence in self-care, sphincter control, mobility, locomotion, communication, cognition	Rehabilitation	General	18	20–30 min	Staff via interview, observation, or telephone interview	System: Ordinal – 1–7 scale. Total Score: 18–126 points; Higher score indicates higher level of self-care ability
17	Self-as-Carer Inventory (SCI) [54, 55]	1988	USA	Used to permit individuals to express their perceived capacity to care for self. The structural validity of SCI, assessed through principal component analysis (PCA), was rated negative but the internal consistency was positive	Prevention	General	40	4.0 min (est.)	Self-reported	System: Ordinal – Each Q is rated from 1 (very accurate) to 6 (very inaccurate). Total points: 40–240
18	Appraisal of Self-Care Agency Scale–version A (ASA-A) [31]	1991	NL	Two formats of the ASA scale were developed: (1) ASA-A for self-appraisal, & (2) ASA-B for assessment by caregivers. The instrument was translated into many languages, which some changes in number of items. Has been largely replaced by ASA-R	Prevention	General	24	2.4 min (est.)	Self-reported	System: Ordinal – Each question is scored from 1 (total agree) to 5 (totally agree); Total points: 24–120 points; Higher score indicates greater self-care agency
19	Short-Form Health Survey SF-36) [56]	1992	USA	Indicator of health status for use in population surveys & evaluative studies of health policy. Measures: 1. Physical functioning; 2. Role limitations due to physical health problems; 3. Bodily pain; 4. Social functioning; 5. General mental health (incl. psychological distress & well-being); 6. Role limitations due to emotional problems; 7. Vitality, energy or fatigue; 8. General health perceptions	Prevention	General	36	5–10 min	Self-reported	System: Mixed – Ordinal, Yes/No, MCQ. Total points: 0–100 points; Higher score indicates poorer health status
20	EuroQol EQ-5D Quality of Life Scale [34]	1993	INTL	Expresses health status in a single index score; intended for use in evaluative studies such as drug trials & policy research. Facilitates cross-national comparisons. Covers five dimensions of health: mobility, self-care, usual activities, pain/discomfort, anxiety/depression	Prevention	General	5	0.5 min (est.)	Self-reported or observer, proxy, telephone interview	System: Ordinal – Each question scored from 1 (none) to 3 (severe) problems. A self-rating of overall health is obtained from an analogue scale (0: worst imaginable health state to 100: best imaginable health state). Total Score: 5–15 points; Higher score indicates lower levels of self-care ability
21	Health Promoting Lifestyle Profile II (HPLP II) [57]	1966	USA	Measures behaviours in the theorised dimensions of health-promoting lifestyle: 1. Spiritual growth, 2. Interpersonal relations, 3. Nutrition, 4. Physical activity, 5. Health responsibility & 6. Stress management	Prevention	General	52	5.2 min (est.)	Self-reported	System: Ordinal – Each question is scored on an N-S–O-R scale (Never, Sometimes, Often, Routinely) & given a score of 1–4. Total Score: 1–4; Higher score indicates higher frequency of health-promoting lifestyle behaviours
22	Strategies Used by People to Promote Health (SUPPH) [58]	1996	USA	29-item self-report is a measure of self-care self-efficacy. 4 factors: coping, stress reduction, making decisions, Enjoying life. Many studies have used it with adult cancer patients but could be used for broader population	Management	General	29	2.6 min (est.)	Self-reported	System: Ordinal – Each question is scored from 1 (very little to do to) 5 (quite a lot to do). Total score: 29–145 points; Higher score indicates higher level of self-care practice
23	Self-Care Ability Scale for the Elderly (SASE) [59]	1996	SW & FIN	Assess goal care, environment care & repertoire care over 7 factors: ADLs, mastery, well-being, volition, determination, loneliness, dressing. Reflects a person’s intention to do certain things of importance for the care of capacity	Rehabilitation	Specific – Elderly	17	5.3 min (est.)	Self-reported	System: Ordinal – Each question is scored from 1 (completely disagree) to 5 (completely agree). Total points: 53–256 points; Higher score indicates higher level of self-care ability
24	Quality of Well-Being Scale (QWB) [60]	1996	USA	Summarizes current symptoms & disability in a single number that represents a judgment of the social undesirability of the problem. Intended for use as an outcome indicator & estimation of present & future need for care. Classifies level of functioning in the following dimensions: Mobility & confinement (e.g., in hospital or institution); Physical activity, ambulation, social activity, (includes work, housekeeping), & self-care	Prevention	General	71	10–20 min	Structured interview or self-reported	System: Mixed. Combination of yes/no questions & Likert-type scales. Total points: Scoring is completed using a proprietary algorithm & expressed it in terms of quality-adjusted life years (QALYs)
25	Lorensen’s Self-care Capability Scale (LSCS) [27, 28]	1998	NOR	Assesses self-care capability in the elderly on an ongoing basis either at home or in institutions. Original scale published in 1986 & revised in 1998. The current scale consists of 56 items covering 13 dimensions & organised in terms of 3 constructs in Orem’s theory (universal self-care, developmental self-care & health-deviation self-care. LSCS covers knowing capabilities, decision-making capabilities, operational capabilities & doing capabilities that enable older persons to stay at home	Prevention	General	56	5.6 min (est.)	Self-reported	System: Ordinal – each question is scored from 1–4 (1: Totally dependent on help, 4: Can manage without help) Total score: 56–224; Higher score indicates higher level of self-care ability
26	Patient Activation Measure (PAM) [61]	2004	USA	Measures levels of insight into a range of health-related behaviours & outcomes. Results classified into 4 levels based on score – Level 1: Passive/feel overwhelmed by managing their own health/may not understand their role in the care process; Level 2: May lack the knowledge & confidence to manage their health; Level 3: Appears to be taking action but may still lack the confidence/skill to support their behaviours; Level 4: Adopted many of the behaviours needed to support health but may not be able to maintain them in face of life stressors	Management	Specific – Chronic illness	22	2.2 min (est.)	Self-reported	System: Ordinal. 4-point scale of disagree, disagree, agree or strongly agree. Raw score produced by obtaining an average of all response & converted to activation score which is used to categorise patient into activation level segment (level 1–4. Total score: 100 points; Higher score indicates lower levels of self-care ability
27	PAM-13 [19]	2005	USA	A shortened 13-item version of the original 22-item PAM which was shown to have similar psychometric properties. Has largely superseded the original PAM & has been translated to several different languages & widely validated	Management	General	13	1.3 min (est.)	Self-Reported	System: Ordinal scale “Disagree strongly, Disagree, Agree, Agree Strongly, N/A”. Total score: 100; Higher score indicates better self-care
28	Self-Care of Home-Dwelling Elderly (SCHDE) [30]	2007	FIN	A five-subscale measure that assesses: types of self-care; self-care orientation, life satisfaction, self-esteem, & functional capacity	Management	Specific – Elderly	82	8.2 min (est.)	Unknown	System: Ordinal: Most questions scored from 1–5 (1: Totally disagree; 5: Totally agree), functional ability scored from 1–3 (1: I can manage without difficulties) to 3 (I cannot manage independently without difficulties); Total points: 82–410 points
29	Therapeutic Self-Care (TSC) [62]	2014	CAN	Generic measure of self-care ability in hospital in-patients. Designed to assess perceived ability to engage in self-care at home upon discharge. Assesses: 1. Taking medications as prescribed, 2. Recognizing & managing symptoms, 3. Carrying out activities of daily living, 4. Managing changes in condition	Rehabilitation	Specific – In-patients	12	1.2 min (est.)	Staff	System: Ordinal. Each question is rated from 0 (not at all) – 6 (very much so). Total points: 0–78; Higher score indicates higher level of self-care ability
30	Self-Management Screening (SeMaS) [32]	2015	NL	Facilitates personalised counselling & support for self-management in patients with chronic diseases in primary care. 27 items measuring the psychological constructs self-efficacy (n = 2), coping (n = 6) depression (n = 3), anxiety (n = 4) & locus of control (n = 2). The construct of social support includes 5 items & the perceived burden of disease is 1 item. Three other items that guide the type of support concerned computer skills, functioning in groups & willingness to perform self-monitoring	Management	Specific – Chronic diseases	27	2.7 min (est.)	Staff	System: items are scored from 0 to 4 & summed. The perceived burden of disease is scored on a visual analogue scale from 0 to 10. For coping, depression & anxiety, all responses from ‘often’ to ‘always’ are scored as 2. Item 7 is inversely scored
31	Appraisal of Self-Care Agency Scale – Revised (ASA-R) [29]	2017	SPN	A revised version of the original 24-item ASA scale & the 12-item Short Form Health Survey (SF-12) that assesses self-care capacity	Prevention	Specific – Elderly	15	15 min	Self-reported	System: Ordinal – Questions rated in a 5-point Likert scale. Total points: 15–75 points; Higher score indicates better self-care agency
32	Mindful Self-Care Scale (MSCS) [63]	2018	USA	Intended to help identify areas of strength & weakness in mindful self-care behaviour as well as assess interventions that serve to improve self-care. Assesses: physical care, supportive relationships, mindful awareness, self-compassion & purpose, mindful relaxation & supportive structure	Prevention	General	42	4.2 min (est.)	Self-reported	System: Likert scale of 1–5. Consists of 33 scale items, 6 clinical, & 3 general assessing global practices of self-care. Total points: 42–210 points; Higher score indicates higher frequency of health-promoting lifestyle behaviours
33	Self-Care of Chronic Illness Inventory (SCCII) [36]	2018	INTL	Measures self-care maintenance, management, & confidence in chronic illness patients, defined as those with a permanent or recurring condition lasting more than 3 years that significantly affects well-being & requires daily & consistent health care management. Based on the Middle Range Theory of Self-Care of Chronic Illness, with 3 separate scales measuring Self-Care Maintenance, Self-Care Monitoring, & Self-Care Management	Management	Specific – Chronic illness	30	3.0 min (est.)	Self-reported	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
34	Consumer Health Activation Index (CHAI) [64]	2018	USA	Examines knowledge, self-efficacy, motivation & beliefs, activity & locus of control. Can be used to assess health activation among adults, including those with limited health literacy	Management & prevention	General	10	1.0 min (est.)	Self-reported / Staff	System: 1–6-Likert scale (1: strongly disagree to 6 > strongly agree) Total points: 0–100 (obtained through linear regression from the initial 10–60). Higher score indicates higher activation
35	Making it CLEAR (MiC) questionnaire [26]	2021	UK	Multidimensional measure of resilience for use with older adults at the point of discharge from hospital. 34 items assess individual determinants of resilience (IdoR, 21 items) & environmental determinants of resilience (EdoR, 13 items). IDoR contains 6 factors (self-efficacy, values, interpersonal skills, life orientation, self-care ability & process skills). EDoR contains 5 factors (person–environment fit, friends, material assets, habits & family). Items address participants’ perceptions of their self-care, leisure, work, responsibilities, social environment, resources, habits, values, self-efficacy, motor skills, communication skills & process skills	Management	Specific – Elderly	34	3.4 min (est.)	Self-reported	System: Ordinal – Likert 0–3 scale (strongly agree, agree, disagree, & strongly disagree). Total points: IDoR 0–63 / EDoR 0–39. Higher scores indicate higher individual determinants of resilience
36	Self-Care Activities Screening Scale (SASS-14) [35]	2021	SPN & COL	Developed during COVID-19 lockdown but could be helpful to address future evaluations & interventions to promote healthy behaviours. Health consciousness as a key component of self-care. 14-item scale with 4 main dimensions: Health consciousness (5 items), Nutrition & Physical Activity (3 items), Sleep quality (2 items), Interpersonal & Intrapersonal coping strategies (4 items)	Prevention	General – lockdown	14	1.4 min (est.)	Self-reported	System: Ordinal – Likert 1–6 scale (never, very rarely, rarely, occasionally, very frequently, always). Total points: 0–63; Higher score indicates higher frequency of self-care activities performed by individuals
37	Self-Care Self-Efficacy (SCSE) Scale [65]	2021	USA	A 10-item scale that measures confidence in the ability to self-care. Developed as a self-report single domain scale to measure self-efficacy in self-care maintenance (action to maintain physiologic stability), selfcare monitoring (actions to track behaviour, detect & interpret changes in signs & symptoms), & self-care management (actions to recognize a change in health & address the process to reverse an illness exacerbation)	Prevention & management	General	10	1.0 min (est.)	Self-reported	System: Ordinal – 5-point Likert scale (1 = not confident, 5 = extremely confident). Total points: 10–50; Higher score indicates higher level of self-efficacy to self-care
38	Self-Care Inventory (SCI)– Patient Version [33]	2022	ITA	The SCI has 20 5-point Likert items & 3 separate scales: (1) self-care maintenance (8 items) which addresses those activities aimed at maintaining the best possible health status through health promoting practices; (2) self-care monitoring (6 items) which reflects body listening with awareness of symptoms & bodily changes; (3) self-care management (6 items) which comprises those actions aimed at controlling or managing said symptoms & changes	Prevention	General	20	2.0 min (est.)	Self-reported	System: Ordinal: 5-point Likert scale (1 = never, 5 = always). Total points: 20–100; Higher score indicates higher level of self-care

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].

Length of tool and data collection approach

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 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.

Tool scoring

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 1.

Time needed to complete data collection

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 1).

Reliability and validity

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.

Theoretical underpinning

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 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 2.

Table 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

Tool aims and administration methods

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 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 1).

Content assessment: assessing tools against the Seven Pillars of Self-Care Framework

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 3 highlights the extent that each instrument measured or covered criteria relevant to each pillar of self-care.

Table 3.

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 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 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].

Discussion

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.

Analysis of key trends in psychometric tool development

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].

Emphasis on self-care pillars

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 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.

Study implications

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.

Implications for policy and practice

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.

Strengths and limitations

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.

Conclusion

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.

Abbreviations

7PSC

The Seven Pillars of Self-Care framework

ARMS

Attuned representational model of self

ASA-A

Appraisal of Self-Care Agency Scale–version A

ASA-R

Appraisal of Self-Care Agency Scale – Revised

BI

Barthel Index

BRG

black, red, green traffic light system

CAPITAN

Self-Care CAPabiIity AssessmeNt Toolkit

CHAI

Consumer Health Activation Index

DSCPI-90

Denyes Self-Care Agency Instrument

EQ-5D

EuroQol Quality of Life

ESCA

Exercise of Self-Care Agency scale

FIM

Functional Independence Measure

FSRS

Functional Status Rating System

HPLP II

Health Promoting Lifestyle Profile II

ICOPE

Integrated Care for Older People

IRT

: Item response theory

KSCE

Kenny Self-Care Evaluation

LSCS

Lorensen’s Self-care Capability Scale

MBI

Modified Barthel Index

MHIQ

McMaster Health Index Questionnaire

MiC

Making it CLEAR questionnaire

MSCS

Mindful Self-Care Scale

NCDs

Non-communicable diseases

PAM-13

Patient Activation Measure-13

PAM

Patient Activation Measure

PAMIE

Physical & Mental Impairment of Function Evaluation

PASS

Performance Assessment of Self-Care Skills

PSCAQ

Perceived Self-Care Agency Questionnaire

PULSES

(this is an Acronym for the six functions and factors which are important in the rehabilitation of the disabled individual and can help identify the severity of the disability)

QWB

Quality of Well-Being Scale

RDRS-2

Rapid Disability Rating Scale

SASE

Self-Care Ability Scale for the Elderly

SASS-14

Self-Care Activities Screening Scale

SCCII

Self-Care of Chronic Illness Inventory

SCHDE

Self-Care of Home-Dwelling Elderly

SCI

Self-as-Carer Inventory

SCI

Self-Care Inventory

SCSE

Self-Care Self-Efficacy Scale

SDGs

Sustainable Development Goals

SeMaS

Self-Management Screening

SF-36

Short-Form Health Survey

SFS

Social Functioning Schedule

SUPPH

Strategies Used by People to Promote Health

TSC

Therapeutic Self-Care

WHO

World Health Organization

Authors’ contributions

All authors provided substantial contributions to the conception (A. El-Osta, E. Riboli Sasco &# × 0026; A. Majeed), design and interpretation and analysis (A. El-Osta, E. Riboli Sasco, M. Karki, I. Webber, A. Alaa, M. El Asmar, E. Barbanti, M. Almadi, F. Massoud, A. Alboksmaty &# × 0026; H. Idriss) of study data and approved the final version of the paper. A. El-Osta took the lead in planning the study with support from co-authors. E. Riboli Sasco, M. Karki M. El Asmar &# × 0026; A. Alaa &# × 0026; H. Idriss carried out the data analysis with support from co-authors. A. El-Osta is the guarantor.

Funding

No funding was received.

Availability of data and materials

The protocol and data extraction tables can be made available upon request.

Declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.