Abstract
Background Although participation is a core concept in multiple models of disability, there is no consensus on its definition.
Objective The aim of this study was to extract participation domains based on review of theories, available outcome measures, and interviews with experts and the person with hand injuries to compare with the ICF domains of participation.
Methods A qualitative approach using a deductive content analysis was employed to extend definitions of participation from theories. Later on, inductive qualitative method using semistructured interview with five experts in different fields and 30 patients with different hand injuries was used. Coding was performed with extracted domains from the content of data, and finally, the extracted domains were compared with the ICF domains of participation.
Results Some of the extracted domains were not considered in ICF.
Conclusion Subjective participation is the main forbearance part. Role, leisure, domestic life, environment, and others are also main missing meanings. This limitation can hinder measuring disability and health.
Keywords: participation, ICF, disability, hand injuries
Introduction
Participation is a significant long-term outcome of medical, rehabilitation, and social service programs. Leading patients to normal life and promoting their participation level are the final goals of rehabilitation and social services. 1 It is proved to be a central construct in health care, rehabilitation, and, particularly, in occupational therapy, 2 and as a key rehabilitation outcome, it has been the focus of extensive efforts to become operationalized and measured. This focus results in many reviews, and much research is rooted in a new paradigm of disability. 3
While participation is a core concept in multiple models of disability, there is no consensus on its definition. Upon the sources from prior models of disability, different approaches were employed in defining it. Wood 4 and Nagi 5 defined participation as a social role and hereby distinguished performance at the societal level from other levels. For Wood, 4 participation, named handicap back then, was the fulfillment of a role quite normal for an individual. In the most recent model, International Classification of Functioning, Disability and Health (ICF) of the World Health Organization (WHO), 6 participation focuses on the person's involvement in society (i.e., social functioning), and it would be more likely to be performed with others. 7
Some authors believe that participation is characterized by specific chapters of ICF, including Assisting others (d660), Particular interpersonal relationships (d730–d779), Education (d810–d839), Work and employment (d840–d859), Economic life (d860–d879), Community life (d910), Recreational and leisure (d920), Religion and spirituality (d930), and Political life and citizenship (d950). 8 9 However, a detailed model of the construct of participation has not been articulated. 10
Significant variations in definition of the construct resulted in instruments purporting to measure the same construct and yield significantly different findings, making it difficult to compare populations or research results. Therefore, it is crucial to know the definition and main domains of participation. One of the most common definitions of participation, used worldwide, is the ICF definition “involvement in a life situation.” 11 However, the ICF definition of participation has been criticized due to its lack of conceptual clarity and for providing little specificity about what type of involvement or life situation is meant. 12 Consequently, there is a knowledge gap regarding the clarification of the definition of this concept for clinical purposes. There is still debate about its construct. The main questions that still should be answered include What are the major aspects of participation that should be measured? Is the ICF a useful framework for instrument construction? What alternatives to the ICF should be considered?
The main question of this study was whether the domains considered by ICF are comprehensive enough to conceptualize participation.
Methods
To answer the main question about the conceptualization of participation and explore its domains, three steps were followed.
In the first step, directed or deductive approach to content analysis was used. This step was done by systematic search of the theories and definitions of participation and also questionnaire that claimed that measure participation (general questionnaire and hand-specified outcome measure). Open coding method was used for this step. 13
In the second step, inductive qualitative method was used by interview with five experts in different fields holding experience with measuring participation (two hand surgeons, two hand therapists, and one social worker) with at least 10 years of experience in working with hand-injured patients, and 35 patients (24 men and 11 women) with mean age of 44 years who had hand injuries were included. Purposeful samplings were used for interviews. Sampling continued until saturation.
All individuals gave research authorization to participate in this study. The medical ethics committee of the university approved the study protocol. Lastly, the interviews were taped and transcribed.
Coding
A content analysis using constant comparison was performed for transcribed interviews. To identify key domains as initial coding categories, the transcripts were read and all of the sentences holding the concept of participation were highlighted. The next step in the analysis was to code all highlighted passages (meaning unit) based on the experience of participants or concepts, coming from disciplines and theories. Explored codes were grouped together upon their homogeneity. Through this process, different categories and subcategories were identified. 14 Coding was done based on manifest content analysis. 15
Any text not to be categorized into the initial coding scheme was assigned a new code 16 (creating categories). Then, each category was named using content-characteristic words, and hereby subcategories with similar events and incidents were grouped together as categories and they were grouped as main ones named domains. 17
Strategies used to assess trustworthiness included member check, peer check, and expert check, and prolonged engagement was used for each step. The authors read the papers independently and discussed them frequently with experts during the analysis of the categories and meaning units, until consensus was reached.
Finally, in the third steps, the extracted domains were compared with the ICF domains of participation by focus group and were afterward regarded as main domains of participation.
Results
Extracted Domains Based on Deductive Content Analysis
Literature Review
Thirty articles were reviewed in this phase. Out of them, 10 were related to disability models. The remaining articles were mostly about definitions of participation or defining its domains or offering ways of differentiating it from activity. After content analysis of the extracted definitions, four main domains were labeled and appeared in Table 1 . The first and the most mentioned was “environment and societal interaction.” Based on ICF definition, participation is a person's involvement in society (i.e., social functioning) and performing with others. 11 Many disability models also emphasize social interaction as the main domain of participation in their definitions. These descriptions are varied with fitting person into environment, 18 occupational, or recreational activities occurring in community settings, 19 and active involvement in intrinsic activities. 20
Table 1. Extracted domains of participation from theories.
| Domain | Meaning unit | Code | Definition |
|---|---|---|---|
| Environment and social interaction | Socializing Active involvement in activities |
Social | Need mobility in the community and socializing with more people active involvement in activities that are intrinsically social and either occur outside of the home or are part of a nondomestic role 8 44 45 46 47 |
| Work outside of the household | Domestic life | Engagement in vocational, social (outside of the household), and other community roles | |
| Person-environment fit | Environment | Dynamic interaction between individuals and their environments over the lifespan Person-environment fit 5 8 46 48 |
|
| Context | Doing tasks and acts in context 43 49 | ||
| Nonobligatory activity | Leisure | Freely chosen activity that require control and commitment/nonobligatory activity that intrinsically motivated and engaged during discretionary time 50 | |
| Others | Cannot be done alone | Other person | Participation cannot be done alone and need interpersonal relation Interaction with other people 50 12 51 |
| Roles | Social and familiar roles | Role | Ability to performs social and familiar roles; includes one's role as a worker, a friend, a neighbor, or a community member Fulfilling roles outside of the household 4 5 46 |
| Subjective participation | Satisfaction of doing | Satisfaction | Satisfaction of doing roles Insider perspective of participation 52 |
| Quality of life | Give meanings to life 26 | ||
| Individual's internal experience and autonomy | Subjective perception | Perception of involvement or sense of belonging and satisfaction with engagement in community activities; addresses the individual's internal experience and autonomy 22 | |
| Engagement | 53 |
Role fulfillment, domestic life, environment, context, and leisure were considered as subdomains of social interaction. Because societal role is frequently mentioned in most models and definitions, seemingly this factor must be the most important one that can accentuate the meaning of participation. As performing roles were highlighted in many definitions, it became a separate domain. The third domain was the presence of others in doing an act. It means that participation cannot be done alone and requires interaction with others.
The last domain, not considered in disability models including the ICF, was subjective participation with the subdomains of satisfaction, quality of life, perception of involvement (or sense of belonging), and engagement in community activities, which addresses an individual's internal experience and autonomy ( Table 1 ).
Participation Outcome Measures
In this step, 20 general outcome measures ( Appendix 1 ), developed to evaluate participation, and hand-specified outcome measures, which had the items that measure participation, were identified. The items of all above questionnaire were linked to ICF based on linking rules ( Appendixes 2 and 3 ). After content analysis of the general participation outcome measures, 17 meanings were extracted ( Table 2 ).
Appendix 1. Domains of participation in general questionnaires.
| Instrument | Abbreviations | Domains | Population |
|---|---|---|---|
| Craig Handicap Scale and Reporting Technique | CHART 27 | Physical independence, mobility, occupation, social integration, economic self-sufficiency | General population |
| Perceived Handicap Questionnaire | PHQ 28 | Physical independence, mobility, independency, economic self-sufficiency, occupation | Spinal cord injury |
| London Handicap Scale | LHS 29 | Physical independence, mobility, independency, economic self-sufficiency, orientation, occupation | Several groups of patients with chronic diseases |
| Reintegration to Normal Living index | RNL index 30 | Indoor community, distance, self-care, daily activity, recreational and social activity, general coping skills relationships | Varied diagnoses |
| Impact on Participation and Autonomy | IPA 31 | Social relation, autonomy of self-care, family role, mobility and leisure Mobility, family role, self-care finance, leisure, social relation, help and support, work, and education |
Five diagnostic groups from outpatient clinics of two rehabilitation centers |
| Nottingham Health Profile | NHP 32 | Life areas | Patient's perceived emotional, social, and physical health problems |
| Community Integration Questionnaire | CIQ 33 | Community integration: relationships with others, independence in one's own living situation and meaningful activities | Brain injury |
| Activity Enumeration Index | AEI 34 | OA, RA | |
| Lubben Social Network Scale | Lubben scale 35 | ||
| WHO Disability Assessment Schedule II | WHODAS II 36 | Understanding and communication, getting around, self-care, getting along with people, life activities, work or education, participation in society | General population |
| World Health Organization Quality of Life | WHOQOL 37 | Physical health, psychological health, social relationship, environment | Level of satisfaction in carrying out these activities or in participating |
| SF36 | SF36 38 | Role functioning physical, role functioning emotional | General population |
| ICF Measure of Participation and Activities | IMPACT 9 | Knowledge, general tasks, communication, mobility, self-care Domestic life, interpersonal, major life areas, community life |
General population |
| LIFE-H | LIFE-H 42 | Nutrition/responsibility/fitness/interpersonal relationships/personal care/community life/communication/education/housing/employment/mobility/recreation | Older adult |
| Utrecht Scale for Evaluation of Rehabilitation-Participation | USER-P 39 | Frequency, experienced restrictions, and satisfaction in time the respondent spends on paid work, unpaid work, study, and housekeeping in a typical week, frequency of leisure and social activity measuring the frequency of performing activities in the past 4 weeks such as visiting family or friends/satisfaction with participation is determined by asking the respondent to indicate the satisfaction with 9 aspects of life, such as contacts with family members | Objective and subjective participation |
| Participation Measure for Post-Acute Care | PM-PAC 40 | Mobility; role functioning; community, social, and civic life; domestic life/self-care; economic life; interpersonal relationships; communication; work; and education | Postacute care |
| The Participation Scale | P-scale 41 | People affected by leprosy or disability | |
| Rating of Perceived Participation | ROPP 42 | Patient's satisfaction and desired, mobility; role functioning; community, social, and civic life; domestic life/self-care; economic life; interpersonal relationships; communication; work; and education | Neurologic rehabilitation |
| Participation Objective Participation Subjective | POPS 19 | Frequency or hours of nonhousehold activities; wants to perform more, the same, or less of the activity, and the importance of the activity to well-being; for an objective component (PO), and a subjective component (PS) that reflects importance-weighted satisfaction with activity level | Traumatic brain injury (TBI) |
| Keele Assessment of Participation | KAP 43 | Individual's perception of their actual involvement in life situations, expectations, aspirations, and needs, as well as contextual factors | General population |
Appendix 2. Participation items of general questionnaires.
| Items | Questionnaires | Domains | Codes | Domains |
|---|---|---|---|---|
| Problems due to barriers or hindrances in the world around | WHODAS II | Moving around | d455 | |
| Time spent on health condition or its consequences | WHODAS II | Looking after one's health | d570 | |
| Taking care of household responsibilities | WHODAS II | Doing housework | d640 | |
| Doing most important household tasks well | WHODAS II | Doing housework | d640 | |
| Getting all the household work done that needed to do | WHODAS II | Doing housework | d640 | |
| Getting household work done as quickly as needed | WHODAS II | Doing housework | d640 | |
| Dealing with people who do not know | WHODAS II | Interpersonal interactions and relationships | d7 | |
| Maintaining a friendship | WHODAS II | Interpersonal interactions and relationships | d7 | |
| Problems in joining in community activities (e.g., festivities, religious or other activities) in the same way as anyone else can | WHODAS II | Interpersonal interactions and relationships | d7 | |
| Problem in living with dignity because of the attitudes and actions of others | WHODAS II | Interpersonal interactions and relationships | d7 | |
| Emotionally affecting by health condition? | WHODAS II | Interpersonal interactions and relationships | d7 | |
| Problem in family because of health problems? | WHODAS II | Interpersonal interactions and relationships | d7 | |
| Day-to-day work/school | WHODAS II | Work and employment | d840–d859 | |
| Doing most important work/school tasks well | WHODAS II | Work and employment | d840–d859 | |
| Getting all the work done that are need to do | WHODAS II | Work and employment | d840–d859 | |
| Getting works done as quickly as needed | WHODAS II | Work and employment | d840–d859 | |
| Drain on the financial resources because of health problem | WHODAS II | Work and employment | d840–d859 | |
| Unable to carry out usual activities or work because of any health condition | WHODAS II | Work and employment | d840–d859 | |
| Problem in doing things for relaxation or pleasure | WHODAS II | Recreation and leisure | d920 | |
| Traveling outside home | CIQ a | Moving around | d455 | |
| Shopping household needs | CIQ | Caring for household objects | d650 | |
| Care of children in home | CIQ | Assisting others | d660 | |
| Visiting friends or relatives | CIQ | Interpersonal interactions and relationships | d7 | |
| Getting around in house where wanted | IPA b | Moving around | d455 | |
| Getting heavy tasks done around the house (e.g., cleaning), | IPA | Moving around | d455 | |
| Minor repairs and maintenance work done in house and garden | IPA | Caring for household objects | d650 | |
| Chances of visiting relatives and friends when wanted to | IPA | Interpersonal interactions and relationships | d7 | |
| Chances of seeing people as often as wanted | IPA | Interpersonal interactions and relationships | d7 | |
| Quality of relationships with people who are closed | IPA | Interpersonal interactions and relationships | d7 | |
| Chances of fulfilling role at home as like | IPA | Work and employment | d840–d859 | |
| Chances of getting or keeping a paid or voluntary job that like to do | IPA | Work and employment | d840–d859 | |
| Chances of using leisure time the way wanted to | IPA | Recreation and leisure | d920 | |
| Difficulty communicating with other people | LIFE-H | Moving around | d455 | |
| Spending in recreational activities such as sports, exercise, playing cards, or going to movies | LIFE-H | Recreation and leisure | d920 | |
| Go out to public places | Late-Life FDI | Interpersonal interactions and relationships | d7 | |
| Visit friends and family | Late-Life FDI | Interpersonal interactions and relationships | d7 | |
| Keep in touch with others | Late-Life FDI | Interpersonal interactions and relationships | d7 | |
| Take care of own health | Late-Life FDI | |||
| Provide meals | Late-Life FDI | − | ||
| Assist others | Late-Life FDI | Assisting others | d660 | |
| Take care of household finances | Late-Life FDI | Economic life | d860–d879 | |
| Invite people for meal or entertainment | Late-Life FDI | Interpersonal interactions and relationships | d7 | |
| Take care of local errands | Late-Life FDI | |||
| Take care of inside of home | Late-Life FDI | Caring for household objects | d650 | |
| Take part in social activities | Late-Life FDI | Interpersonal interactions and relationships | d7 | |
| Travel out of town for overnight stay | Late-Life FDI | Moving around | d455 | |
| Work at volunteer job | Late-Life FDI | Work and employment | d840–d859 | |
| 1. Purposeful sensory experiences | IMPACT-S | Learning and applying knowledge | ||
| 2. Basic learning | IMPACT-S | Learning and applying knowledge | ||
| 3. Applying knowledge | IMPACT-S | Learning and applying knowledge | ||
| 4. Task execution in quiet circumstances | IMPACT-S | General tasks and demands | ||
| 5. Task execution in stressful circumstances | IMPACT-S | General tasks and demands | ||
| 6. Communicating, receiving | IMPACT-S | Communication | ||
| 7. Communicating, producing | IMPACT-S | Communication | ||
| 8. Use of communication devices and techniques | IMPACT-S | Communication | ||
| 9. Changing and maintaining body position | IMPACT-S | Mobility | ||
| Carrying, moving and handling objects | IMPACT-S | Mobility | ||
| 10. Lifting and carrying objects | IMPACT-S | Mobility | ||
| 11. Moving objects using lower extremities | IMPACT-S | Mobility | ||
| 12. Fine hand use | IMPACT-S | Mobility | ||
| 13. Gross movements of hand and arm | IMPACT-S | Mobility | ||
| 14. Walking and moving | IMPACT-S | Mobility | ||
| 15. Moving around using transportation | IMPACT-S | |||
| 16. Washing and dressing | IMPACT-S | Self-care | ||
| 17. Caring for body parts and toileting | IMPACT-S | Self-care | ||
| 18. Eating, drinking, maintaining good health | IMPACT-S | Self-care | ||
| 19. Acquisition of necessities | IMPACT-S | Domestic life | ||
| 20. Household tasks Caring for household objects and assisting others | IMPACT-S | Caring for household objects | d650 | |
| 21. Caring for household objects | IMPACT-S | Caring for household objects | d650 | |
| 22. Assisting others | IMPACT-S | Assisting others | d660 | |
| 23. General interpersonal interactions Particular interpersonal relationships | IMPACT-S | Interpersonal interactions and relationships | d7 | |
| 24. Formal relationships | IMPACT-S | Interpersonal interactions and relationships | d7 | |
| 25. Informal and family relationships | IMPACT-S | Interpersonal interactions and relationships | d7 | |
| 26. Intimate relationships | IMPACT-S | Interpersonal interactions and relationships | d7 | |
| 27. Education, work, and employment economic life | IMPACT-S | Economic life | d860–d879 | |
| 28. Basic economic transactions | IMPACT-S | Economic life | d860–d879 | |
| 29. Managing long-term financial situation | IMPACT-S | Economic life | d860–d879 | |
| 30. Community life | IMPACT-S | |||
| 31. Recreational and leisure | IMPACT-S | Recreation and leisure | d920 |
Abbreviations: Late-Life DFI, late-life function and disability instrument; FDI, IMPACT-S, Measure of Participation and ACTivities questionnaire-S; LIFE-H, assessment of life habits; WHODAS II, World Health Organization disability assessment schedule II.
Community Integration Questionnaire.
Impact on participation and autonomy.
Appendix 3. Participation items in hand questionnaires.
| Item | Test | Component | Codes |
|---|---|---|---|
| Using usual technique for your work | DASH | Work and employment | d859 |
| Doing usual work in spite of arm, shoulder or hand pain | DASH | Work and employment | d859 |
| Doing work as well as every one would like | DASH | Work and employment | d859 |
| Spending usual amount of time in doing work | DASH | Work and employment | d859 |
| Limitation in work or other regular daily activities as a result of arm, shoulder, or hand problem | DASH | – | d850/d |
| arm, shoulder, or hand problem interfered with your normal social activities with family, friends, neighbors, or groups | DASH | Recreation and leisure | d9205 |
| Manage transportation needs (getting from one place to another) | DASH | – | d489 |
| Recreational activities in which you move your arm freely (e.g., playing Frisbee, badminton, etc.) | DASH | Recreation and leisure | d9201 |
| Recreational activities in which take some force or impact through arm, shoulder or hand (e.g., golf, hammering, tennis, etc.) | DASH | Recreation and leisure | d920 |
| Recreational activities, which require little effort (e.g., card playing, knitting, etc.) | DASH | Recreation and leisure | d920 |
| Unable to do work because of problems in hand(s) and/or wrist(s) | MHQ | Work and employment | d839/d859 |
| Shorten workday because of problems with hand(s) | MHQ | Work and employment | d839/d859 |
| Take it easy at work because of problems with hand(s) or wrist(s) | MHQ | Work and employment | d839/d859 |
| Less accomplish in work because of problems with hand(s) or wrist(s) | MHQ | Work and employment | d839/d859 |
| Take longer to do the tasks in work because of problems with hand(s) or wrist(s) | MHQ | Work and employment | d839/d859 |
| the pain in hand(s) and/or wrists(s) interfere with your daily activities (e.g., eating or bathing) | MHQ | – | d |
| The appearance (look) of hand that interfered with normal social activities. | MHQ | – | d9 |
| No question | MAM-16 | – | – |
| No question | POS-Hand/Arm | – | – |
| Perform normal leisure activities without difficulty | HAT | Recreation and leisure | d920 |
Abbreviations: DASH, Disabilities of the arm, shoulder and hand score; HAT, hand assessment tool; MAM-16, manual ability measure; MHQ, Michigan hand outcomes questionnaire; POS-Hand/Arm, patient's outcome of surgery hand/arm.
Table 2. Extracted domains of participation from measures.
| Domains | Meaning units | Codes | Scale |
|---|---|---|---|
| Emotional/psychological | Psychological health | Expectations, aspirations, and needs. Do you feel confident to try to learn new things (Participation scale)? | WHODAS II, 36 WHOQOL, 37 KAP, participation scale |
| Interpersonal interactions and relationships | Difficulty communicating with other people, visiting friend and relative, maintaining a relationship | Social integration, community integration, relation with others (IPA), participation in society, community life, use of communication devices and techniques (IMPACT-S) Formal relationships (IMPACT-S) Get-togethers with family and friends (CIQ) |
LIFE-H, 54 IPA, 31 CIQ, 33 WHODAS II, 36 ROPP, WHOQOL, PM-PAC, CHART, 27 IMPACT 9 |
| Independence and autonomy | Doing works alone | Physical independence, independence in one's own living situation and meaningful activities (CHART) | CHART, 27 PHQ, 28 LHS, 29 CIQ 33 |
| Role | Role functioning | Physical role functioning | IPA, 31 ROPP, PM-PAC, IMPACs, SF36 38 |
| Physical | Problems due to physical impairment | Pain Appearance |
LHS 29 |
| Adaptation | Getting along with problems | Coping skills, getting along, special equipment (PARTS-M) | WHODAS II, 36 RNL-index, 30 PARTS-M |
| Satisfaction | Satisfaction with activity level | How satisfied are you with your participation (PARTS-M) | POPS, ROPP, USER-P 39 |
| Environment, context | WHODAS II, 40 WHOQOL | ||
| Recreation and leisure | Recreational | Recreational activity, movies, sports, restaurants (CIQ), leisure (IPA), religious festivals (participation scale) | CIQ, MHQ, DASH, HAT, IPA, 31 LIFE-H, IPA, WHODAS II, 36 RNL-index, 30 participation scale |
| Looking after one's health | Caring of others in home such as child and also self-care | Who usually cares for the children in your home? (CIQ), do you help other people (e.g., neighbors, friends or relatives)? (participation scale) | CIQ, WHODAS II 36 late-life IMPAC, RNL-index, 30 CIQ, 33 participation scale |
| Domestic life | Doing housework and daily activity Activity of daily living, transport |
Indoor occupation, life area, domestic life, housing (LIFE-H), household tasks (IMPACT-S), caring for household objects (IMPACT-S), indoor community (CIQ) Grocery shopping, laundry, housekeeping, or infrequent medical needs (CHART-1) |
CIQ, WHODAS II, 36 IMPACs, DASH, RNL-index, 30 NHP, 32 LIFE-H |
| Compensatory behavior | Change in speed and ability in doing | Do you work as hard as your peers do (participation scale) | WHODAS II, 36 participation scale |
| Learning and applying knowledge | Basic learning Applying knowledge (IMPACT-S) |
||
| Task execution and its need | Task execution in quiet circumstances Task execution in stressful circumstances (IMPACT-S) |
||
| Communication | Use of communication devices and techniques (IMPACT-S) | ||
| Mobility | Lifting and carrying objects Moving around |
Carrying, moving and handling objects moving around using transportation (IMPACT-S) | WHODAS II, 36 IPA, LIFE-H |
| Self-care | Doing self-care activity | Self-care (IPA), washing and dressing (IMPACT-S) Personal care activities such as eating, bathing, dressing, toileting, and mobility? (CHART-1), personal care (LIFE-H) |
CHART, 27 IPA, LIFE-H |
| Major life areas | Economic self-sufficiency Education Work |
Education, work and employment Work activity, employment Economic life (CHART-1), looks after your personal finances (CIQ) Paid or voluntary work (IPA) |
CIQ, MHQ, IPA, 31 WHODAS II, 36 PM-PAC, CHART, 27 PHQ, 28 LHS, 29 ROPP |
Abbreviations: CHART, Craig handicap assessment and reporting technique; CIQ, community integration questionnaire; DASH, disabilities of the Arm, Shoulder and Hand score; IMPACT, Measure of Participation and ACTivities questionnaire; IPA, impact on participation and autonomy; KAP, Keele Assessment of Participation; LHS, London handicap scale; LIFE-H, assessment of life habits; MHP, Michigan hand outcomes questionnaire; PHQ, perceived handicap questionnaire; PM-PAC, participation measure for post-acute care; POPS, participation objective participation subjective; ROPP, rating of perceived participation; RNL, reintegration to normal living; USER-P, Utrecht scale for evaluation of rehabilitation-participation; WHODAS II, World Health Organization disability assessment schedule II; WHOQOL, World Health Organization quality of life assessment.
Interpersonal interactions and relationships, work and employment, and assisting others were the only components of ICF covered by the identified instruments.
Caring for household objects, moving around, looking after one's health, and doing housework were considered as subdomains of domestic life. In addition, some of the measures had some items, which could not be linked to ICF components, and hence the authors considered them as extra domains (recreation and leisure).
Emotional, appearance, independence and autonomy, role, adaptation, satisfaction, and physical and compensatory behavior, which are subdomains of subjective participation, were not considered in ICF.
Extracted Domains Based on Inductive Content Analysis
Interviews
Nine domains were extracted from the interviews. Except interpersonal relationship, none of the other extracted meanings could be linked with ICF. Emotional, adaptation, satisfaction, and compensatory behavior were considered as subdomains of subjective participation. Role was the only meaning that was considered as an independent domain ( Table 3 ).
Table 3. Extracted domains of participation based on interview with experts and patients.
| Domains | Meaning units | Codes | Definitions |
|---|---|---|---|
| Emotional/psychological | Subjective participation | Depression, pain, loneliness, fear of re impaired, satisfaction, maladaptation, bad appearance, try to keep independency, need to be care, depression, fear of loneliness, fear of re injuring, need to be independence | Patients cannot participate in social activities due to the abnormal appearance of their limb (E2) |
| Interpersonal relationship | Relation with family, friend, colleague, and social interaction | Other expectations, sympathizing, rejection by others, supports of others | They mostly are not accepted by family and friends (E1) |
| Environment | Physical, cultural | Workplace, home, school | Doing their jobs is the most part of participation in social (E3) |
| Role | Having different role in life | Being child, parents, student… | As a father, I cannot afford my family needs (P5) |
| Adaptation | Getting along with impairment and its limitation | Doing works or tasks in unusual manner, patience, diminishing speed and dexterity, usage, compensatory movement, help from other hand, assistive technology, coping | Mostly adapt with their disability level (E4) |
| Compensatory behavior | Doing compensatory behavior, | Change in speed and ability in doing | They participate any how, but with different shapes (E5) |
| Appearance | How the limb looks like | Hidden the impaired limb | I do not take part in parties due to shape of my hands (P5) |
| Behavioral | Doing in an unusual manner, self stem, compensatory movement | ||
| Physical | Pain | ||
| Satisfaction |
After considering all extracted domains and their overlapping and comparing with ICF, finally 14 domains were considered as the main domains of participation in hand-injured patients; five of them were not considered in ICF (10–14):
Assisting others (d660)
Interpersonal relationship and communications (d730–d779)
Education (d810–d839)
Work and employment (d840–d859)
Economic life (d860–d879)
Religious and spirituality (d930)
Political and citizenship (d950)
Leisure and recreational (d920)
Community life (d910)
Role
Others
Domestic life: Self-care, looking after one's health
Subjective participation: Emotional/psychological, engagement, appearance, adaptation, compensatory behavior physical, independence and autonomy, personal reaction, satisfaction, and engagement.
Environment: Social, cultural temporal
Discussion
The findings from reviewing the literatures brought the authors to the conclusion that a big part of participation has been ignored: perceived participation and engagement of a person in participation and also his/her satisfaction from participation. Perhaps, there is a need to reevaluate this construct. Some authors are argued that participation could not be measured as a unidimensional construct: performance- and social-based participation. 21
By reviewing outcome measures, the authors again extracted some aspects of inner participation, such as compensatory behavior, autonomy, and physical conditions that can be all considered as satisfaction in participation.
The most significant finding from interviews was that the meaning of participation revealed something more than just different than their impairment levels. The most important parts of participation were their satisfaction from how they performed their activities in a dynamic process.
Use of compensatory movement and change in speed and dexterity and adaption were the domains, which were mostly addressed by patients “in spite of less dexterity, I can participate in social roles” or “I can do my job with use of my intact limb” that were categorized as personal causation. It seems this domain and subdomains are mostly barriers and facilitators of participation.
Furthermore, patients emphasized the importance of autonomy in the experience of participation. Autonomy covers aspects such as choice, control, independence, and self-determination. This empirical finding is in line with Cardol and colleagues 22 who stress the concept of autonomy as crucial to the proper operationalization of participation and Perenboom and Chorus's 23 definition of participation as the involvement in life situations that also includes the concept of autonomy.
In this study, the authors also concluded that there are some domains of participation based on ICF, which are not included in any of questionnaires (economic life, political life and citizenship, religion and spirituality). Besides, some domains were extracted from theories and questionnaires that are not considered in ICF (such as, autonomy, personal causation, emotional status, and adaptation). By considering the critics about ICF, 23 24 25 26 these results were not incredible.
The authors identified some extra domains, which could not be linked to chapters of participation in ICF, such as others (participation cannot be done alone), role, autonomy satisfaction, and perceived or subjective participation.
Perhaps, the authors can consider some extra dimensions for participation construct: subjective participation (engagement and satisfaction).
To understand the key participation-related domains for appraising the available outcome measures, this information can be used in conjunction with the findings from linking studies to determine whether a given measure has appropriate content coverage in the domain of participation.
As it seems, there are some important aspects of participation, which are not yet considered. There is an increasing need to develop a comprehensive questionnaire to evaluate participation accurately.
Study Limitations
The authors acknowledge that this review of measures, although very comprehensive, may not have included each and every aspect that assesses participation. The selected group of patients causing this can partly limit the generalization of results.
Conclusion
It is critical to know that disability is an umbrella term, which includes activity limitation and also participation restriction. Activity limitation is directly related to impairment level (a patient with median nerve palsy has difficulty in apposition), but participation is fully under control of personal and environmental factors. Two persons with the same impairment level do not necessarily have the same participation level (the injuries in median nerve can hinder the role of being a mother and caring in a woman). Therefore, as all surgical procedures are aimed to manipulate impairments and mostly they cannot improve all the impairments and the patients should live with some sequels, it is important to evaluate their participation level truly to improve their engagement in society. Developing a specified participation measure for the patients with hand and upper extremity disorders is necessary.
Acknowledgment
The authors are thankful to Dr. Gale Whiteneck, PhD, FACRM, Craig Hospital Research Department, Englewood, Colorado, United States, for his kind guidance in all parts of the study.
Conflict of Interest None.
Note
The ethics committee of the University of Social Welfare and Rehabilitation Sciences, Tehran, Iran, approved this work.
References
- 1.Chau J P, Thompson D R, Twinn S, Chang A M, Woo J. Determinants of participation restriction among community dwelling stroke survivors: a path analysis. BMC Neurol. 2009;9(01):49. doi: 10.1186/1471-2377-9-49. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.Kielhofner G. Lippincott Williams & Wilkins; 2002. A Model of Human Occupation: Theory and Application. [Google Scholar]
- 3.Crewe N, Klein S D, Norsegian J. iUniverse; 2001. Independent Living for Physically Disabled People. [Google Scholar]
- 4.Wood P H. Applications of the International Classification of Diseases. World Health Stat Q. 1990;43(04):263–268. [PubMed] [Google Scholar]
- 5.Nagi S Z. Washington, DC: National Academy Press; 1991. Disability concepts revisited: implications for prevention. Disability in America: Toward a National Agenda for Prevention; pp. 309–327. [Google Scholar]
- 6.Heinemann A W, Linacre J M, Wright B D, Hamilton B B, Granger C. Relationships between impairment and physical disability as measured by the functional independence measure. Arch Phys Med Rehabil. 1993;74(06):566–573. doi: 10.1016/0003-9993(93)90153-2. [DOI] [PubMed] [Google Scholar]
- 7.Farzad M, Layeghi F, Asgari A, Hosseini S A, Rassafiani M. Evaluation of Non Diseased Specified Outcome Measures in Hand Injuries to Assess Activity and Participation Based on ICF Content. J Hand Microsurg. 2014;6(01):27–34. doi: 10.1007/s12593-013-0109-z. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Whiteneck G, ed.A Conceptual and Practical Solution for Differentiating Activity and Participation in the ICFPaper presented at the 14th Annual North American Collaborating Center Conference on ICF “Evaluating Social Participation: Applications of ICF & ICF-CY”; August 26–27, 2008; Quebec, Canada
- 9.Post M W, de Witte L P, Reichrath E, Verdonschot M M, Wijlhuizen G J, Perenboom R J. Development and validation of IMPACT-S, an ICF-based questionnaire to measure activities and participation. J Rehabil Med. 2008;40(08):620–627. doi: 10.2340/16501977-0223. [DOI] [PubMed] [Google Scholar]
- 10.Chang F-H, Coster W J. Conceptualizing the construct of participation in adults with disabilities. Arch Phys Med Rehabil. 2014;95(09):1791–1798. doi: 10.1016/j.apmr.2014.05.008. [DOI] [PubMed] [Google Scholar]
- 11.ICF W.International Classification of Functioning, Disability and Health Geneva, Switzerland: World Health Organization; 20013–25. [Google Scholar]
- 12.Whiteneck G, Dijkers M P.Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors Arch Phys Med Rehabil 200990(11, Suppl):S22–S35. [DOI] [PubMed] [Google Scholar]
- 13.Bauer M, Gaskell G.Classical content analysis: a reviewIn: Qualitative Researching with Text, Image and Sound.Sage Publishing; 2000131–151. [Google Scholar]
- 14.Graneheim U H, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24(02):105–112. doi: 10.1016/j.nedt.2003.10.001. [DOI] [PubMed] [Google Scholar]
- 15.Neuendorf K A. Thousand Oaks, CA: Sage Publishing; 2002. The Content Analysis Guidebook. [Google Scholar]
- 16.Zhang Y, Wildemuth B M.Qualitative analysis of contentIn: Applications of Social Research Methods to Questions in Information and Library Science.Westport, CT: Libraries Unlimited; 2009308–319. [Google Scholar]
- 17.Dey I. Oxon, UK: Routledge; 2003. Qualitative Data Analysis: A User Friendly Guide for Social Scientists. [Google Scholar]
- 18.Grinker R R. New York, NY: Basic Books; 1956. Toward a Unified Theory of Human Behavior; p. 375. [Google Scholar]
- 19.Brown M, Dijkers M P, Gordon W A, Ashman T, Charatz H, Cheng Z. Participation objective, participation subjective: a measure of participation combining outsider and insider perspectives. J Head Trauma Rehabil. 2004;19(06):459–481. doi: 10.1097/00001199-200411000-00004. [DOI] [PubMed] [Google Scholar]
- 20.Coster W, Law M, Bedell G, Khetani M, Cousins M, Teplicky R. Development of the participation and environment measure for children and youth: conceptual basis. Disabil Rehabil. 2012;34(03):238–246. doi: 10.3109/09638288.2011.603017. [DOI] [PubMed] [Google Scholar]
- 21.Fallahpour M, Jonsson H, Joghataei M T, Kottorp A. Impact on Participation and Autonomy (IPA): PSYChometric evaluation of the Persian version to use for persons with stroke. Scand J Occup Ther. 2011;18(01):59–71. doi: 10.3109/11038121003628353. [DOI] [PubMed] [Google Scholar]
- 22.Cardol M, De Jong B A, Ward C D. On autonomy and participation in rehabilitation. Disabil Rehabil. 2002;24(18):970–974. doi: 10.1080/09638280210151996. [DOI] [PubMed] [Google Scholar]
- 23.Perenboom R J, Chorus A M.Measuring participation according to the International Classification of Functioning, Disability and Health (ICF) Disabil Rehabil 200325(11–12):577–587. [DOI] [PubMed] [Google Scholar]
- 24.Jette A M, Haley S M, Kooyoomjian J T. Are the ICF activity and participation dimensions distinct? J Rehabil Med. 2003;35(03):145–149. doi: 10.1080/16501970310010501. [DOI] [PubMed] [Google Scholar]
- 25.Heinemann A W, Tulsky D, Dijkers Met al. Issues in participation measurement in research and clinical applications Arch Phys Med Rehabil 201091(9, Suppl):S72–S76. [DOI] [PubMed] [Google Scholar]
- 26.Levasseur M, Desrosiers J, St-Cyr Tribble D. Do quality of life, participation and environment of older adults differ according to level of activity? Health Qual Life Outcomes. 2008;6(01):30. doi: 10.1186/1477-7525-6-30. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 27.Hall K M, Dijkers M, Whiteneck G, Brooks C, Stuart Krause J. The Craig handicap assessment and reporting technique (CHART): metric properties and scoring. Top Spinal Cord Inj Rehabil. 1998;4(01):16–30. [Google Scholar]
- 28.Tate D, Forchheimer M, Maynard F, Dijkers M. Predicting depression and psychological distress in persons with spinal cord injury based on indicators of handicap. Am J Phys Med Rehabil. 1994;73(03):175–183. doi: 10.1097/00002060-199406000-00006. [DOI] [PubMed] [Google Scholar]
- 29.Harwood R H, Rogers A, Dickinson E, Ebrahim S. Measuring handicap: the London Handicap Scale, a new outcome measure for chronic disease. Qual Health Care. 1994;3(01):11–16. doi: 10.1136/qshc.3.1.11. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 30.Wood-Dauphinee S, Williams J I. Reintegration to normal living as a proxy to quality of life. J Chronic Dis. 1987;40(06):491–502. doi: 10.1016/0021-9681(87)90005-1. [DOI] [PubMed] [Google Scholar]
- 31.Cardol M, de Haan R J, van den Bos G A, de Jong B A, de Groot I J. The development of a handicap assessment questionnaire: the Impact on Participation and Autonomy (IPA) Clin Rehabil. 1999;13(05):411–419. doi: 10.1191/026921599668601325. [DOI] [PubMed] [Google Scholar]
- 32.Hunt S M, McKenna S P, McEwen J, Williams J, Papp E.The Nottingham Health Profile: subjective health status and medical consultations Soc Sci Med A 198115(3 Pt 1):221–229. [DOI] [PubMed] [Google Scholar]
- 33.Willer B, Rosenthal M, Kreutzer J S, Gordon W A, Rempel R. Assessment of community integration following rehabilitation for traumatic brain injury. J Head Trauma Rehabil. 1993;8(02):75–87. [Google Scholar]
- 34.Yelin E, Lubeck D, Holman H, Epstein W. The impact of rheumatoid arthritis and osteoarthritis: the activities of patients with rheumatoid arthritis and osteoarthritis compared to controls. J Rheumatol. 1987;14(04):710–717. [PubMed] [Google Scholar]
- 35.Lubben J E. Assessing social networks among elderly populations. Fam Community Health. 1988;11(03):42–52. [Google Scholar]
- 36.Vázquez-Barquero J L, Vázquez Bourgón E, Herrera Castanedo S et al. [Spanish version of the new World Health Organization Disability Assessment Schedule II (WHO-DAS-II): initial phase of development and pilot study. Cantabria disability work group] Actas Esp Psiquiatr. 2000;28(02):77–87. [PubMed] [Google Scholar]
- 37.Power M, Kuyken W, Orley J et al. The World Health Organization Quality of Life Assessment (WHOQOL)—Development and general psychometric properties. Soc Sci Med. 1998;46:569–1585. doi: 10.1016/s0277-9536(98)00009-4. [DOI] [PubMed] [Google Scholar]
- 38.Aaronson N K, Muller M, Cohen P D et al. Translation, validation, and norming of the Dutch language version of the SF-36 Health Survey in community and chronic disease populations. J Clin Epidemiol. 1998;51(11):1055–1068. doi: 10.1016/s0895-4356(98)00097-3. [DOI] [PubMed] [Google Scholar]
- 39.Post M W, van der Zee C H, Hennink J, Schafrat C G, Visser-Meily J M, van Berlekom S B. Validity of the utrecht scale for evaluation of rehabilitation-participation. Disabil Rehabil. 2012;34(06):478–485. doi: 10.3109/09638288.2011.608148. [DOI] [PubMed] [Google Scholar]
- 40.Gandek B, Sinclair S J, Jette A M, Ware J E., Jr Development and initial psychometric evaluation of the participation measure for post-acute care (PM-PAC) Am J Phys Med Rehabil. 2007;86(01):57–71. doi: 10.1097/01.phm.0000233200.43822.21. [DOI] [PubMed] [Google Scholar]
- 41.van Brakel W H, Anderson A M, Mutatkar R K et al. The Participation Scale: measuring a key concept in public health. Disabil Rehabil. 2006;28(04):193–203. doi: 10.1080/09638280500192785. [DOI] [PubMed] [Google Scholar]
- 42.Sandström M, Lundin-Olsson L. Development and evaluation of a new questionnaire for rating perceived participation. Clin Rehabil. 2007;21(09):833–845. doi: 10.1177/0269215507077278. [DOI] [PubMed] [Google Scholar]
- 43.Wilkie R, Peat G, Thomas E, Hooper H, Croft P R. The Keele Assessment of Participation: a new instrument to measure participation restriction in population studies. Combined qualitative and quantitative examination of its psychometric properties. Qual Life Res. 2005;14(08):1889–1899. doi: 10.1007/s11136-005-4325-2. [DOI] [PubMed] [Google Scholar]
- 44.Nagi S Z. An epidemiology of disability among adults in the United States. Milbank Mem Fund Q Health Soc. 1976;54(04):439–467. [PubMed] [Google Scholar]
- 45.Badley E M. Enhancing the conceptual clarity of the activity and participation components of the International Classification of Functioning, Disability, and Health. Soc Sci Med. 2008;66(11):2335–2345. doi: 10.1016/j.socscimed.2008.01.026. [DOI] [PubMed] [Google Scholar]
- 46.Parsons T.Definitions of health and illness in the light of American values and social structure New York, NY: Free Press; reprinted in Social Structure and Personality. London, UK: Routledge and Kegan Paul;1958165–87. [Google Scholar]
- 47.Cardol M, Brandsma J W, de Groot I J, van den Bos G A, de Haan R J, de Jong B A. Handicap questionnaires: what do they assess? Disabil Rehabil. 1999;21(03):97–105. doi: 10.1080/096382899297819. [DOI] [PubMed] [Google Scholar]
- 48.Dijkers M P.Issues in the conceptualization and measurement of participation: an overview Arch Phys Med Rehabil 201091(9, Suppl):S5–S16. [DOI] [PubMed] [Google Scholar]
- 49.Wilkie R, Peat G, Thomas E, Croft P. Factors associated with participation restriction in community-dwelling adults aged 50 years and over. Qual Life Res. 2007;16(07):1147–1156. doi: 10.1007/s11136-007-9221-5. [DOI] [PubMed] [Google Scholar]
- 50.Noonan V K, Kopec J A, Noreau L et al. Comparing the content of participation instruments using the international classification of functioning, disability and health. Health Qual Life Outcomes. 2009;7(01):93. doi: 10.1186/1477-7525-7-93. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 51.Eyssen I C, Steultjens M P, Dekker J, Terwee C B. A systematic review of instruments assessing participation: challenges in defining participation. Arch Phys Med Rehabil. 2011;92(06):983–997. doi: 10.1016/j.apmr.2011.01.006. [DOI] [PubMed] [Google Scholar]
- 52.Levasseur M, Desrosiers J, Whiteneck G. Accomplishment level and satisfaction with social participation of older adults: association with quality of life and best correlates. Qual Life Res. 2010;19(05):665–675. doi: 10.1007/s11136-010-9633-5. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 53.Kielhofner G. Baltimore, MD: Lippincott Williams & Wilkins; 2008. The Environment and Human Occupation. A Model of Human Occupation: Theory and Application. 4th ed; pp. 85–97. [Google Scholar]
- 54.Noreau L, Desrosiers J, Robichaud L, Fougeyrollas P, Rochette A, Viscogliosi C. Measuring social participation: reliability of the LIFE-H in older adults with disabilities. Disabil Rehabil. 2004;26(06):346–352. doi: 10.1080/09638280410001658649. [DOI] [PubMed] [Google Scholar]