RADHS Rehabilitation Advances in Developing Health Systems 3005-9437 AOSIS RADHS-2-21 10.4102/radhs.v2i1.21 Original Research Cross-cultural adaptation of the Concept of Pain Inventory for South African children https://orcid.org/0009-0000-1374-9588 Odendaal Talita 1 https://orcid.org/0000-0001-7426-4840 Diener Ina 1 https://orcid.org/0000-0002-0942-7030 Maart Rentia A. 1 https://orcid.org/0000-0002-3061-7226 Ernstzen Dawn V. 1 Division of Physiotherapy, Department of Health and Rehabilitation Sciences, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa Corresponding author: Rentia Maart, 14572044@sun.ac.za 28052025 2025 2 1 21 07102024 20032025 © 2025. The Authors 2025 Licensee: AOSIS. This work is licensed under the Creative Commons Attribution 4.0 International (CC BY 4.0) license. Background

Childhood pain can affect a child’s functioning and participation. The 14-item Concept of Pain Inventory (COPI) in English, assesses a child’s understanding of pain. The COPI has not been adapted or translated for use in South Africa (SA).

 Aim

This study aimed to cross-culturally adapt and translate the COPI into isiXhosa and Afrikaans for 12-year-old children.

 Setting

The study was conducted in Gqeberha, Eastern Cape province of SA.

 Methods

A descriptive study was conducted, using a modified cross-cultural adaptation process comprising two survey rounds, translation and evaluation of the translated COPI and pilot testing. Conceptual, item and semantic equivalence and the possibility of eliciting a negative emotional response were evaluated. A multidisciplinary panel of healthcare providers and educators participated, along with three children from the target population.

 Results

The panel reached consensus on 10 of the original COPI items. Four items were modified and subsequently approved. The adapted and translated COPI versions were confirmed to be semantically equivalent and the pilot participants found it easy to understand.

 Conclusion

The COPI was cross-culturally adapted and translated into Afrikaans and isiXhosa for use in the Eastern Cape of SA, ensuring equivalence between the original and adapted versions. Further research is needed to understand how culture influences the concept of pain in the South African context.

 Contribution

The adapted and translated version of the COPI has broadened its potential use in SA and was found to be easy to read and understand by a sample of 12-year-old children without eliciting a negative emotional response.

 concept of pain children cross-cultural adaptation South Africa translate Concept of Pain Inventory Funding information This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. Introduction

Pain is a common experience in childhood but may affect the functioning and participation of a child. A child may experience acute pain as part of everyday bumps and scrapes during play or during procedures such as immunisations. However, chronic pain in childhood, such as musculoskeletal pain, headache or abdominal pain (Liao et al. 2022) is also common. Globally, the prevalence of chronic pain in children and adolescents is 20.8% (95% confidence interval [CI]: 19.2–22.4) (Chambers et al. 2024), which is congruent with the findings from a systematic review that the prevalence of paediatric chronic pain in low- and middle-income countries is 20% (Liao et al. 2022). The impact of pain on a child’s life can be significant, affecting school performance and attendance, participation in sports and recreational and social activities. Acute and chronic pain can cause distress for the child, and chronic pain can lead to pain-related anxiety and depression, impact sleep, mood and emotional well-being (Friedrichsdorf et al. 2016; Liao et al. 2022). Adequate management of childhood pain is therefore important, to manage pain-related distress and to mitigate the consequences of long-term pain.

Children with chronic pain are at risk of having chronic pain in adulthood (Bacardit Pintó et al. 2021; Hassett et al. 2013). Additionally, childhood pain memories can influence subsequent pain experiences (Brown, Rojas & Gouda 2017). A child’s ability to cope with pain is influenced by their knowledge and beliefs about pain. The importance of childhood pain management is emphasised in the Lancet Commission on Children’s Pain, which called for transformative action in paediatric pain (Eccleston et al. 2021), with the goals of making pain matter, to make pain understood, to make pain visible and to make pain better.

Pain education is part of the best practice in childhood pain management (World Health Organization [WHO] 2020). Pain is understood to be a biopsychosocial phenomenon that is influenced by biological factors (e.g., nociception, genetics), psychological factors (e.g., cognitions, beliefs) and socio-contextual factors (e.g., family, culture) (Reis et al. 2022). Understanding these factors that influence pain can decrease pain-related anxiety, positively influence movement patterns and optimise pain coping mechanisms thereby improving functional outcomes (Harrison et al. 2019; Ickmans et al. 2022; Louw et al. 2020). Education about pain is therefore instrumental to inform one’s concept of pain and to limit the transition from acute to chronic pain, by decreasing the threat value of pain and optimising the ability to cope with pain (Ickmans et al. 2022).

A person’s concept of pain comprises what pain is, the purpose of pain and the biological processes underlying pain (Pate et al. 2019). Children’s concept of pain and coping strategies for pain are influenced by social learning, culture, and parental, cognitive, affective and behavioural responses to pain (Ickmans et al. 2022). In addition, children’s understanding of pain is influenced by their stage of growth and development, psychological age, cognitive development and education (Cohen et al. 2013). Knowledge and experience of pain also influence the concept of pain, for example, children with chronic pain were more aware of the emotional impact of pain compared to their counterparts without pain (Pate et al. 2018). Groenewald, Murray and Palermo (2020) found that adverse childhood events impact the pain experience and that these children are at increased risk of developing chronic pain. Adverse childhood experiences may comprise experiences of serious injury, parent divorce, witnessing violence, physical abuse, sexual abuse or emotional abuse or neglect. Questioning about pain may elicit memories and emotional responses to these adverse childhood experiences if participants are asked about pain. In assessing a child’s concept of pain, one must consider the possibility of eliciting a negative emotional response, which must be managed appropriately. The concept of pain therefore develops with age and can be influenced by overt or covert learning about pain.

Outcome measures to assess children’s concept of pain have been developed. The purpose of such outcome measures is to assess if a child’s understanding of pain is aligned with contemporary pain science, to subsequently tailor pain education interventions, to monitor changes in understanding pain and to assess the efficacy of pain education interventions. Examples of outcome measures that assess children’s pain conceptual knowledge include the Concept of Pain Inventory (COPI) (Pate et al. 2018), the Conceptualisation of Pain Questionnaire (COPAQ) (Salvat et al. 2021) and the Neurophysiology of Pain Questionnaire (rNPQ) (Louw et al. 2018). Before implementing the outcome measures, however, they must be suitable for the intended context to ensure that their constructs are appropriately measured in the target group (Gjersing, Caplehorn & Clausen 2010). Existing outcome measures may have to be cross-culturally adapted and validated to assess the concept of pain accurately if the instrument was developed in a context different from the intended context of use. The aim of the cross-cultural adaptation (CCA) of an instrument is to achieve equivalence between the original and adapted questionnaire (Epstein et al. 2015). Cross-cultural adaptation therefore refers to the assessment of whether measures or statements that were originally developed in one culture can be applied, understood and considered equivalent in another culture (Gjersing et al. 2010). Diversity in culture and language are interrelated and can shape a child’s concept of pain and influence a child’s responses to the outcome measure items (Epstein et al. 2015). The CCA of outcome measures for the concept of pain is necessary to ensure its efficacy and acceptability in the intended context.

To assess the concept of pain held by SA children, a suitable assessment tool was required, as no appropriate instrument has yet been developed in the SA context. SA is a richly diverse country with 12 official languages and a diversity of cultures, ethnicities, socioeconomic factors and religions (Parliament of the Republic of South Africa 2023). The COPI was deemed suitable to assess a child’s concept of pain as it probes a child’s beliefs and knowledge about pain, by assessing the child’s conceptual knowledge of what pain is, what function pain has and the biological processes underpinning pain. The COPI was chosen, as, at the time of the study proposal approval, the COPAQ was yet to be published. Additionally, the rNPQ focuses on knowledge about pain as opposed to the concept of pain (Louw et al. 2018). This study was phase one of a larger study that aimed to determine the concept of pain held by 12-year-old school-attending children in Gqeberha in the Eastern Cape province of SA. This study aimed to cross-culturally adapt and translate the COPI into languages spoken in Gqeberha, isiXhosa and Afrikaans, for it was developed for English-speaking children in Australia.

 Research methods and design Study design

A descriptive study was conducted, using a modified CCA process in five steps (Gjersing et al. 2010). The five steps comprised (1) an initial evaluation and adaptation of the COPI, (2) endorsement of the adapted COPI, (3) translation of the COPI, (4) evaluation and adaptation of the translated version of the COPI and (5) pilot testing of the adapted COPI versions. A CCA framework (Herdman, Fox-Rushby & Badia 1997) was integrated into the process to assess the conceptual, item and semantic equivalence of the adapted COPI to the original COPI. Conceptual equivalence refers to how the concepts investigated are conceptualised in the new context and culture, while item equivalence explores whether the items being assessed are equally relevant and acceptable from one context to the next and semantic equivalence refers to language and whether a word has similar meanings across contexts (Herdman et al. 1997).

 Study setting

The main study, using the COPI, was to be conducted in Gqeberha, in the Eastern Cape province of South Africa (SA) (Odendaal et al. 2025). Therefore, the CCA process followed in this study focused on the conceptual and item equivalence for SA in general, while cultural and semantic equivalence focused on children in the target setting of the main study (Gqeberha). In 2021, the Nelson Mandela Bay Municipality, which includes Gqeberha and the nearby towns of Kariega and Despatch, was reported to have a population of 1 190 496 inhabitants (Statistics South Africa 2023). The dominant spoken languages in the region are isiXhosa (54%), Afrikaans (29%) and English (14%) (Nelson Mandela Bay Municipality 2024). In 2018, 7.3% (8 183.67) of school children in Gqeberha, were in Grade 6, which is the expected grade for 12-year-old children in SA (School Hive: South African Schools 2024). The estimated class size per class per school in Gqeberha was 30.65 children (Department of Basic Education 2018).

 The Concept of Pain Inventory

Permission to adapt the COPI was obtained from the developers (Pate et al. 2020). The COPI is a brief, 14-item instrument to assess a child’s concept of pain. Pate et al. (2020) developed the COPI for English-speaking children in Australia, aged 8-to-12 years, using three steps as outlined next:

item generation (an international panel of experts identified item domains to assess a child’s concept of pain) (Pate et al. 2018)

item content validity, readability and understanding (item evaluation by experts and by children, as well as pilot interviews with children) (Pate et al. 2020)

testing of the COPI psychometric properties (children completed an online COPI) (Pate et al. 2020).

The questionnaire is scored on a 5-point Likert scale (0 = strongly disagree; 1 = disagree; 2 = unsure; 3 = agree; 4 = strongly agree). The COPI scored out of 56, with higher scores reflecting greater alignment of the child’s concept of pain with contemporary pain science (Pate et al. 2020). The COPI displayed adequate psychometric properties with acceptable internal consistency (α = 0.775) and moderate test-retest reliability (intraclass correlation coefficient = 0.55; 95% CI: 0.37–0.68) in children (Pate et al. 2020). The Turkish version of the COPI was found to have acceptable internal consistency (α = 0.78) and an intraclass correlation coefficient of 0.93 (Apaydin Cirik et al. 2022).

 Sampling Multidisciplinary panel sampling and recruitment

A multidisciplinary panel of healthcare providers and primary school educators were purposefully selected (Etikan, Musa & Alkassim 2016) and invited to participate in steps 1, 2 and 4 of the CCA process. Multidisciplinary involvement was important to include diverse perspectives regarding factors involved in children’s conceptualisation of pain and the diverse considerations of the CCA process. The inclusion criteria comprised:

Healthcare providers involved in providing care for children in pain, pain management and pain research (e.g., medical doctors, nurses, physiotherapists, occupational therapists).

Social workers and psychologists with experience in providing care to primary school children (e.g., a school-appointed social worker).

Primary school educators with experience in teaching primary school children.

The participants had to be proficient in English.

A selection of participants also had to be proficient in isiXhosa and/or Afrikaans.

The potential participants were identified through the professional network of the research team. Potential healthcare provider participants were also identified through their participation in courses, congresses and authoring peer-reviewed articles on children and pain. The primary investigator (PI) contacted potential participants via email and explained the purpose and process of the study, an invitation to participate and information on what would be required if they agreed to participate. Fifteen professionals were invited and twelve agreed to participate, which is deemed suitable participants for the consensus methodology (Waggoner, Carline & Durning 2016).

 Pretesting pilot study sampling process and recruitment

Three participants from the target population, that is, 12-year-old children attending a primary school in the intended setting, were conveniently recruited (Etikan et al. 2016). This age range was selected as it marks neurobiological changes in the transition to early adolescence (12 years to 18 years), which may affect responsiveness and processing abilities, as well as beliefs and perceptions (Cohen Kadosh et al. 2013; Ebrahimpour et al. 2019; Lau et al. 2018). The inclusion criteria comprised:

boys and girls, 12 years of age at the time of data collection

whose home language was English, Afrikaans or isiXhosa

who attended schools in Gqeberha

who have assented and whose parents have consented to participation.

Children who had been patients of the PI at any stage were not considered for the pretesting step.

Because of coronavirus disease 2019 (COVID-19) precautionary measures at the time, on-site visits to schools were not permitted. The researcher contacted parents in her network with 12-year-old children who would be eligible to participate in the study. The PI explained the research project to the parents telephonically. A suitable time was arranged to provide study information and consent and assent forms in isiXhosa, Afrikaans or English to the parents. The printed documents were quarantined for 72 h in a sealed box before the PI distributed the documents to selected children’s parents. Contact details for the researcher and Stellenbosch University, Health Research Ethics Committee (SU HREC) were provided on the consent form for any study-related questions. The PI explained voluntary participation and the study’s purpose to the parents and children and that the study entails completing a questionnaire asking participants if they agree or disagree with statements regarding pain to learn what children know about pain. The PI explained that it was not a test, and they could ask if they did not understand a question.

 Study procedures

The cross-cultural adaptation was completed in five steps as outlined.

Step 1: Evaluation and initial adaptation of the English Concept of Pain Inventory

The first step was to establish the conceptual, item and semantic equivalence of the COPI in the SA context. A Delphi survey was used to investigate consensus about the equivalence and adaptation of the COPI items (Jünger et al. 2017). The multidisciplinary panel that was recruited evaluated whether the original COPI items were relevant and acceptable in the SA context for children reading and understanding isiXhosa, Afrikaans or English, the official languages in Gqeberha (Herdman et al. 1997). Participants were also tasked to evaluate whether any of the COPI items may trigger a negative emotional response in children that may require them to receive counselling. For example, the interpretation of an item could elicit a memory of pain from abuse, and subsequently cause a negative emotional response (Ebrahimpour et al. 2019; Groenewald et al. 2020; Lau et al. 2018). Participants were informed that the survey would be adjusted based on data analysis.

An electronic questionnaire, via SUNSurvey (Stellenbosch University surveys) was used. A link to the survey was emailed to the panel, together with information about the study, survey instructions and a sample question. The survey requested electronic informed consent upon entering the electronic survey. The survey comprised a section on demographic information and a section to evaluate each COPI item and provide feedback.

Demographic information form: The demographic e-survey was developed to gather information that would provide an overview of the panel’s characteristics, comprising age, gender, participants’ profession, language proficiency, years of experience in their profession and whether they worked with children with pain.

Evaluation and adaption of the Concept of Pain Inventory items (Delphi round one): The survey provided each COPI item and asked specific questions about each item. The panel was tasked to evaluate each COPI item, to indicate their agreement with the question (yes/no), and they could provide comments or alternative wording for each COPI item.

To ascertain item and conceptual equivalence to children in the South African context who communicated in isiXhosa, Afrikaans or English, the panel was asked:

Do you think the item is suitable for a 12-year-old child in South Africa?

Do you think this item is relevant to a 12-year-old’s concept of pain?

Do you think this item is easy to read?

Do you think this item is easy to understand?

The panel was also requested to evaluate each item for the possibility of eliciting a negative emotional response:

Do you think this item may elicit a negative emotional response in children in the South African context?

For each of the above questions, the panel could provide comments or alternative suggestions. The panel had 3 weeks to complete the survey. The research team discussed these suggestions and incorporated them into the final adapted COPI items, which would be reviewed in the second Delphi round.

 Step 2: Endorsement of the adapted Concept of Pain Inventory

Step 2 comprised a second round of the Delphi survey, intending to endorse the adaptations that were made to the COPI from the feedback received in the first Delphi round. A link to the survey was emailed to the panel. In the email, the participants were thanked for completing round one of the Delphi. An overview of the findings of the first survey was presented, explaining how the COPI was adopted. The panel was then invited to indicate if they agreed with the adapted COPI. The participants could motivate their choice on the survey.

 Step 3: Translation of the English Concept of Pain Inventory into Afrikaans and isiXhosa

The adapted English COPI was translated into Afrikaans and isiXhosa by professional translators at the Stellenbosch University Language Centre.

 Step 4: Evaluation and adaptation of the English, Afrikaans and isiXhosa versions of the Concept of Pain Inventory

A random selection of three panel members who indicated that they are proficient in English and isiXhosa, and English and Afrikaans were invited to evaluate the translated COPI versions for item and semantic equivalence. The PI emailed the participants an invitation to participate and included the English COPI and the translated Afrikaans or isiXhosa COPI. To ascertain semantic equivalence in the Gqeberha context, the panel members were asked to consider:

If the meaning of each item in English and Afrikaans or isiXhosa is similar.

To indicate their acceptance or rejection of the translated COPI in different languages.

The participants could respond via email to provide their input regarding their views on the similarity of content and whether they accepted the translated COPI versions.

 Step 5: Pretesting pilot study with potential end-users

The purpose of the pretesting pilot study was to ascertain the readability, usability and understandability of the pre-final adapted COPI in Afrikaans, English and isiXhosa. The pilot study was conducted with three children in the target setting as potential end users of the COPI. Three volunteer participants were recruited and they all agreed to participate. The participants completed a paper version of COPI and the PI was available telephonically if required to explain any concepts. Thereafter, on the same day, the PI contacted the participants telephonically after school, via the telephone number of the parents who provided consent. The PI explored what they thought about the COPI items and both the meaning of the items and the possible responses with the following interview questions:

Did you understand what the questions on the form are about?

Were the instructions for completing the form clear?

Was it easy to answer the questions?

How long did it take to complete the questionnaire?

How did you feel after completing the questionnaire (e.g., emotional response, such as feeling sad, tense, angry or traumatised)?

The researcher documented the pilot participant responses. Subsequently, minor changes were made to finalise the adapted COPI and its translated versions.

 Data management

The results from the two surveys were downloaded from SUNSurvey into an Excel spreadsheet for further analysis. There was no missing data for the quantitative data in step 1. The data from the interviews conducted during the pretesting was summarised narratively by the PI into a Word document for analysis.

Data analysis

The demographic data were analysed and reported descriptively. The two surveys contained both quantitative and qualitative data. Descriptive statistics were used to summarise the quantitative data. For the questions that required a yes/no response, the percentage of yes responses was calculated. The research team set a priori cut-off for (non)consensus as a percentage of agreement at 75% (Jünger et al. 2017). The comments on each of the COPI items remained linked to the individual item and were considered by the research team to adapt that COPI item. Qualitative data from the pilot study was analysed narratively by the PI to provide an answer to the specific questions. For quality assurance, all data were reviewed, discussed and verified by the research team in four meetings.

 Ethical considerations

Ethical clearance to conduct this study was obtained from the SU HREC (No. S20/10/276), which included ministerial consent for non-therapeutic health research with minors. The Department of Education of the Eastern Cape provided permission to conduct the study. Electronic informed consent was obtained from the panel at the start of each survey. Written informed assent and consent were obtained from the children who participated in the pilot study and their parents.

 Results Demographic data

Eleven (92% response rate) of the 12 members invited to participate accepted and completed the first survey. The demographic details of the participants are presented in Table 1. No response was received from the 12th person invited. Almost three-quarters (72%) of the panel members had more than 10 years of experience in their field of expertise. Only one panel member did not work directly with children. All panel members who worked with children confirmed to work with children with pain as well. One panel member was fluent in all three languages (isiXhosa, Afrikaans and English), two in isiXhosa and English and six in Afrikaans and English.

Demographic data of the multidisciplinary panel.

Number Profession Language proficiency Years of experience in the profession Working with children with pain Working with children without pain
1 Physiotherapist Eng > 10 yes No
2 Physiotherapist Eng, isiXhosa < 5 no No
3 Teacher Eng, Afr, isiXhosa < 5 yes yes
4 Teacher Eng, Afr > 10 yes yes
5 Teacher Eng, Afr > 10 yes yes
6 Psychologist Eng, Afr > 10 yes yes
7 Physiotherapist Eng > 10 yes yes
8 Nurse Eng, isiXhosa < 10 yes yes
9 Occupational Therapist Eng, Afr > 10 yes yes
10 Social worker Eng, Afr > 10 yes no
11 Teacher Eng, Afr > 10 yes yes

Afr, Afrikaans; Eng, English.

 Analysis of step 1

The panel members agreed in round 1 of the survey that 10 COPI items were acceptable and relevant to assess the concept of pain in the intended context. Four items did not reach consensus in round 1. Table 2 depicts the scores of the four questions on the conceptual, item and semantic equivalence for each COPI item to reflect whether consensus was reached or not. The panel made several suggestions to adapt the COPI items as indicated in Table 2. Table 2 also contains the consensus and feedback on the possibility of each item eliciting a negative emotional response (question E). The calculated consensus only reflects the consensus on questions A to D as question E was not part of establishing equivalence, but rather determining the possibility of the COPI items eliciting a negative emotional response.

Comments and alternative suggestions and adapted Concept of Pain Inventory items.

Consensus questions Yes No Yes % No % Alternative suggestions and comments from the panel Adapted items
1. Feeling stressed can make you feel more pain Feeling stressed, worried and upset can make you feel more pain.
 A) Easy to read 11 0 100.0 0.0 -
 B) Easy to understand 8 3 72.7 27.3 B) No (PT)B) Most learners deal with pain – all of us are different and handle situations differently. There is no right or wrong. I think we need to get equipped to deal with situations and make an informed discussion. (T)B) I am not sure if a 12-year-old really knows what stress is. Maybe rather use worry. (OT)
 C) Suitable for 12-year-old children 10 1 90.9 9.1 C) Feeling sad/angry/worried can make you feel more pain. (P)
 D) Relevant to 12-year-old concept 11 0 100.0 0.0 -
TOTAL: 44 40 4 90.9 9.1 -
 E) Negative emotional response 2 9 18.2 81.8 E) Knowledge is power. (T)E) Maybe do the questionnaire over a few days with the same child to ensure honesty and different responses. The child might have a bad day. (T)
2. Feeling sad can make you feel more pain Feeling sad or down can make you feel more pain.
 A) Easy to read 11 0 100.0 0.0 -
 B) Easy to understand 11 0 100.0 0.0 -
 C) Suitable for 12-year-old children 11 0 100.0 0.0 -
 D) Relevant to 12-year-old concept 11 0 100.0 0.0 -
TOTAL: 44 44 0 100.0 0.0 -
 E) Negative emotional response 4 7 36.4 63.6 E) This may make the individuals perceive that it is their sadness (which may have a valid underlying reason) that needs to be corrected. (PT)E) It may provoke negative emotion, but that’s good because you need to get to the root of the pain so you can determine what it is that hurts. (T) (translated)E) Sadness make(s) you tender. (T)E) I think you must also ask, ‘What made you sad? Why are you in pain?’ (T)
3. Being distracted can make you feel less pain Keep as is.
 A) Easy to read 11 0 100.0 0.0 -
 B) Easy to understand 10 1 90.9 9.1 B) I’m not sure that the word distracted will be universally understood. Could we change the language to something like ‘keeping busy doing things we like can make you feel less pain’? (P)
 C) Suitable for 12 years old 10 1 90.9 9.1 C) The language of ‘distracted’ is complex for adults. See the above suggestion. (P)
 D) Relevant to 12-year-old concept 10 1 90.9 9.1 D) Distracted might be a term they might not understand … so, I will suggest that someone explains what ‘distract’ means because sometimes we as adults are distracted not even knowing it. (T)
TOTAL: 44 41 3 93.2 6.8 -
 E) Negative emotional response 0 11 0.0 100.0 -
4. Doing something you enjoy can make you feel less pain Keep as is.
 A) Easy to read 11 0 100.0 0.0 -
 B) Easy to understand 11 0 100.0 0.0 -
 C) Suitable for 12 years old 11 0 100.0 0.0 -
 D) Relevant to 12-year-old concept 11 0 100.0 0.0 -
 E) Negative emotional response 1 10 9.1 90.9 E) The child may realise that there are not many activities they enjoy … which is also a good thing … it can be a point of self-reflection to find things that the child finds interesting and enjoyable. (T) (translated)
TOTAL: 44 11 0 100.0 0.0 -
5. Pain is a warning that the body needs to be protected Pain is a warning message that the body needs to be protected.
 A) Easy to read 11 0 100.0 0.0 -
 B) Easy to understand 6 5 54.5 45.5 B) I’m not sure that this is pitched appropriately. Protected is quite an abstract concept, ‘Pain is a warning that there is something wrong with the body’. Unless the aim of this question is to establish whether they understand the concept of threat in the broader sense of the word. (PT)B) Pain is a warning sign that the body needs to be protected. (PT)B) No (N)B) Some children would experience headaches or stomach-aches on a day-to-day basis without realising it. WHY? (T)B) Pain is a warning that the body (or person) might be in danger. (PT)B) What kind of pain? Where is the pain in your body? Is it physical pain like your arm or pain in your heart? Pain in your arms is a warning that the body needs to be protected. (T)
 C) Suitable for 12 years old 8 3 72.7 27.3 C) I would suggest to rather ask ‘so you feel pain, and how often?’ (T)C) See the above comment. I am not clear on what this question is evaluating – an understanding of pain being generated as a concept of threat (which is true) or the concept of pain as a measure of tissue damage (which is false). (P)C) No (N)
 D) Relevant to 12-year-old concept 10 1 90.9 9.1 D) I don’t think that the current statement is neuro-scientifically accurate and could cause confusion in the child. The current statement suggests that the child ‘needs’ to protect the body because he or she has pain. Well, that’s how I read it. (PT)
TOTAL: 44 35 9 79.5 20.5 -
 E) Negative emotional response 1 10 9.1 90.9 E) Different kinds of pain will give different answers. There are different kinds of pain, for example, your heart can be sore because someone said something ugly to you. (T)
6. Feeling pain for a long time can make the brain more sensitive to warning messages Keep as is.
 A) Easy to read 11 0 100.0 0.0 -
 B) Easy to understand 10 1 90.9 9.1 B) No (T)
 C) Suitable for 12 years old 10 1 90.9 9.1 C) No (T)
 D) Relevant to 12-year-old concept 10 1 90.9 9.1 D) No (T)
b 41 3 93.2 6.8 -
 E) Negative emotional response 1 10 9.1 90.9 E) If the child realises that he constantly feels pain, and does not deal with it, it is a good thing to motivate the child to work on the things that are causing the pain. (T) (translated)
7. You can feel a lot of pain even when an injury is small Keep as is.
 A) Easy to read 11 0 100.0 0.0 -
 B) Easy to understand 11 0 100.0 0.0 -
 C) Suitable for 12 years old 11 0 100.0 0.0 -
 D) Relevant to 12-year-old concept 11 0 100.0 0.0 -
TOTAL: 44 44 0 100.0 0.0 -
E) Negative emotional response 0 11 0.0 100.0 -
8. Learning about pain can help you to feel less pain Learning and understanding about pain can help you to feel less pain.
 A) Easy to read 11 0 100.0 0.0 -
 B) Easy to understand 10 1 90.9 9.1 B) Learning about pain can make you understand pain better which will help you to feel less pain and to handle it better. (P)
 C) Suitable for 12 years old 10 1 90.9 9.1 C) Understanding more about the pain can help you feel less pain. (P)
 D) Relevant to 12-year-old concept 11 0 100.0 0.0 -
TOTAL: 44 42 2 95.5 4.5 -
 E) Negative emotional response 0 11 0.0 100.0 -
9. You can have an injury and feel no pain Keep as is.
 A) Easy to read 11 0 100.0 0.0 -
 B) Easy to understand 9 2 81.8 18.2 B) I think children understand that with any injury there is pain. If you are injured, you are bound to be in pain. (T)B) I don’t think they understand that someone can’t experience pain that is painful for him or her. (T)
 C) Suitable for 12 years old 11 0 100.0 0.0 -
 D) Relevant to 12-year-old concept 10 1 90.9 9.1 D) Referring to my answer above, they need to understand that every person experiences pain on a different level. (T)
 E) You can have an injury and feel no pain 0 11 0.0 100.0 -
TOTAL: 44 41 3 93.2 6.8 -
10. The brain can make the pain better or worse The brain (what we think) can make pain better or worse.
 A) Easy to read 11 0 100.0 0.0 -
 B) Easy to understand 8 3 72.7 27.3 B) No (T)B) The brain (what we think) can make pain better or worse. (OT)B) How we think about pain, can make us feel pain worse or more. (PT)
 C) Suitable for 12 years old 11 0 100.0 0.0 -
 D) Relevant to 12-year-old concept 11 0 100.0 0.0 -
TOTAL: 44 41 3 93.2 6.8 -
 E) Negative emotional response 1 10 9.1 90.9 E) This may give the impression that ‘brain’ is synonymous with ‘making it up’. An alternative could be ‘How the brain interprets the feeling of pain in your body can make your experience of the pain worse or better’. (PT)
11. You can feel a little bit of pain even when an injury is big Keep as is.
 A) Easy to read 10 1 90.9 9.1 A) Sometimes big injuries only cause small pain. (PT)
 B) Easy to understand 10 1 90.9 9.1 B) See above. (PT)
 C) Suitable for 12 years old 11 0 100.0 0.0 -
 D) Relevant to 12-year-old concept 11 0 100.0 0.0 -
TOTAL: 44 42 2 95.5 4.5 -
 E) Negative emotional response 0 11 0.0 100.0 -
12. You can feel pain even after an injury heals - You can feel pain even after an injury has healed. (Past tense).
 A) Easy to read 11 0 100.0 0.0 -
 B) Easy to understand 11 0 100.0 0.0 -
 C) Suitable for 12 years old 11 0 100.0 0.0 -
 D) Relevant to 12-year-old concept 11 0 100.0 0.0 -
TOTAL: 44 44 0 100.0 0.0 -
 E) Negative emotional response 2 9 18.2 81.8 E) It is part of the healing process, and it is not bad. (T)E) You will be afraid to do things because you know the pain. (T)
13. Pain usually feels better if you move your body a little bit more each day Keep as is.
 A) Easy to read 11 0 100.0 0.0 -
 B) Easy to understand 10 1 90.9 9.1 B) They might not understand that it is part of the healing process. (T)
 C) Suitable for 12 years old 11 0 100.0 0.0
 D) Relevant to 12-year-old concept 10 1 90.9 9.1 D) I would be worried about the kids with chronic pain as a result of boom-bust behaviours. The A types who push their bodies in sport and ignore their pain. They might think to themselves: ‘But I move my body every day and the pain just gets worse’. I am not sure how to include this into the concept of pain.Perhaps ‘Moving my body a little bit each day, despite having pain, is … not harmful to my body’. Or … ‘is good for (the tissues in) my body’. (OT)
TOTAL: 44 42 2 95.5 4.5 -
 E) Negative emotional response 0 11 0.0 100.0 -
14. The brain processes a lot of information before you feel pain The brain processes and works through a lot of information before you feel pain.
 A) Easy to read 11 0 100.0 0.0 -
 B) Easy to understand 10 1 90.9 9.1 B) Not sure – The brain receives and sends out a lot of information before you feel the pain. (OT)
 C) Suitable for 12 years old 11 0 100.0 0.0 -
 D) Relevant to 12-year-old concept 11 0 100.0 0.0 -
TOTAL: 44 43 1 97.7 2.3 -
 E) Negative emotional response 0 11 0.0 100 -

PT, physiotherapist; T, teacher; OT, occupational therapist; P, psychologist.

The responses in Table 2 indicate that only one COPI item had the potential to elicit a negative emotional response. Item 2 did not achieve consensus (Figure 1) and its wording was subsequently adapted based on the feedback provided by the panel members.

Risk for eliciting negative emotional response (highest % indicates no risk).

 Analysis of step 2

Nine out of the 11 participants from round 1, completed the second survey round (82%). No response was received from two potential participants, and no reason for non-response was offered. Seven out of the nine panel members (78%) responded by accepting the adapted 14-item COPI, meeting the predetermined consensus criterion. One panel member did not accept the adapted COPI. The reason for non-acceptance could not be traced based on the comment of the panel member, illustrated in Table 3. Another panel member did not accept item 13 and provided an alternative suggestion. The research team considered the suggestion, but the item was not adopted, because of it being similar in meaning to the original item.

Comments and alternative suggestions provided during round two of the survey.

COPI item Comment/alternative suggestion Reason for suggestion Adapted COPI
No item indicated ‘My sense is that the same “label” needs to be given at all times. Changing it at various times might be confusing for the child. I believe that a child of 12 can understand pain.’ (Social worker) No alternative suggestion Specific items for change could not be identified.
COPI item 13. Pain usually feels better if you move your body a little bit more each day ‘Moving my body a little bit each day, despite having pain, is … not harmful to my body’. Or … ‘is good for [the tissues in] my body’. (Occupational therapist) - The item was not adopted.

COPI, Concept of Pain Inventory.

 Analysis of step 4

The three panel members agreed that the translated Afrikaans and isiXhosa COPI versions had similar meanings to the adapted English COPI, and they accepted the translated COPIs (Table 4). No changes were suggested.

Results of semantic equivalence after translation.

Version Panel member 1 Panel member 2 Panel member 3
isiXhosa Accept - Accept
Afrikaans - Accept Accept
Analysis of step 5

Two boys and one girl, 12 years of age at the time of data collection; who could read and understand English, Afrikaans or isiXhosa; who attended schools in Gqeberha, and who have assented and whose parents have consented were eligible to participate. The three participants in the pretesting pilot study completed the COPI as follows: one child who indicated his or her home languages as isiXhosa and English completed the isiXhosa COPI, one child who indicated his or her home languages as Afrikaans and English completed the Afrikaans COPI and one child who indicated his or her home language in English completed the English COPI.

The results from the interviews of the three children who completed the isiXhosa, Afrikaans and English, respectively, are summarised as follows:

All three children found the instructions to complete the COPI clear and adequate.

All three children found the questions easy to read and complete without help.

It took approximately 10 min to read and complete the COPI.

No participant reported any negative emotional response to any item used in the COPI.

All three children understood that the items were about pain. Their responses to the question, ‘What do the items mean?’ comprised: “All these questions are about one thing - pain” (Participant 1); ‘It’s about what makes pain good or bad’ (Participant 2) and ‘Knowing how and when you feel pain’ (Participant 3).

 Discussion

This study aimed to cross-culturally adapt the COPI for 12-year-old children in Gqeberha in SA and to translate the COPI into Afrikaans and isiXhosa. A key outcome of the study is the translation of the COPI, broadening its potential use in SA. The panel reached a consensus that the COPI items were easy to read and understand, and suitable for 12-year-old children. However, three items did not reach consensus for readability and appropriateness during round 1, while another item was identified as at risk of eliciting a negative emotional response in the target group. The panel also suggested semantics (linguistic) changes to four other items despite them achieving consensus during round 1. Therefore, 57% (n = 8) of the items were adapted. After the translation of the COPI into Afrikaans and isiXhosa, semantic equivalence compared to the English COPI was confirmed and the three children who participated in the pilot study confirmed that the adapted English, Afrikaans and isiXhosa versions of the COPI were easy to read and understand without eliciting a negative emotional response.

This study is the first to consider the possibility that COPI items may elicit a negative emotional response in participants. Ebrahimpour et al. (2019) established that the sources of a painful experience in a child could be external (e.g., cuts and injections), internal (e.g., medical conditions or disease) and emotional (fear, worry or anxiety). We argued that the latter emotional factors may be triggered if a COPI item elicits memories of adverse childhood experiences. It would be important to identify COPI items that could potentially elicit a negative emotional response. Concept of Pain Inventory item 2 was identified as a potential risk item. The panel members identified different possible sources of sadness (congruent with the notion of internal or external sources of pain). The panel members suggested that if item 2 elicits a negative emotional response, the item should be further explored with the child, to identify the source of sadness. In addition, an alternative word for sadness (as feeling ‘down’) was added to enhance the understanding of the item. Although the pretesting participants also did not report any negative emotional response, we acknowledge that conducting the interviews immediately after completing the COPI (as opposed to our delayed interview timing), may have yielded a different response. For example, responses may not accurately reflect participants’ emotional state immediately after completing the COPI. We recommend that when using the COPI, the occurrence of adverse emotional responses should be monitored and that the necessary referral and support be made available to the child.

A lack of item equivalence was the main reason for COPI items 1, 5 and 10 not reaching consensus in the first survey round, indicating the need to clarify its meaning for 12-year-old children. The panel suggested using alternative words (which an also enhance semantic equivalence) and additional explanatory words, to enhance the meaning of these and other COPI items. For example, the panel suggested alternative words for ‘stress’ in item 1, ‘sad’ in item 2 and ‘distracted’ in item 3. We propose the panel to consider the stage of development and the level of vocabulary mastery in the target audience when making these suggestions. Communicating with children at an age-appropriate level is important, to ensure an understanding of the information (Bell & Condren 2016). The panel furthermore suggested adjustments in item 10 to communicate functional principles as opposed to abstract principles more clearly. In this regard, the panel clarified that processes that take place in the brain influence pain experience (verb), as opposed to the brain as an anatomical object (noun). The addition of explanatory English words meant that the Afrikaans and isiXhosa versions of the COPI would also contain these explanatory words. Accounting for clarifying words in translated questionnaires is important because different language versions of the questionnaires may influence the interpretation of items and outcomes of the questionnaire (Gjersing et al. 2010). Translation of the COPI with additional explanatory words was important to ensure item and semantic equivalence.

The panel did not specify any potential conceptual inequivalence that would indicate different conceptual meanings across different cultures. Language and culture are interrelated and might influence a child’s response to questionnaire items (Epstein et al. 2015). We noticed indications of possible conceptual influences for COPI item 5. The panel found this item complex, and the meaning of this item was not clear to them. The panel thought that item 5 does not sufficiently address the different dimensions of pain for it to be easy to understand. We propose the above may be an indication of how pain is interpreted differently in different cultures and contexts. It would be important for future users and the developers of the COPI to consider the underlying complexity of item 5 because it is the only item in the COPI that explores the purpose of pain. The meaning and purpose of pain may be differently interpreted in different cultures. Nortjé and Albertyn (2015) explored the purpose and meaning of pain in different cultural groups in SA and confirmed that it is culturally bound. For example, in the Nguni culture and Sotho culture, pain has been linked to communication with ancestors or spirits and serves as a form of punishment. Additionally, the expectations regarding the expression of pain were reported to be influenced by gender, and children were often taught to show resilience in enduring pain without complaining (Nortjé & Albertyn 2015). While the COPI investigates if a child’s concept is aligned with contemporary pain science, there remains a need to broaden our understanding of how children comprehend pain, the influence of context and factors that influence the ability to cope with pain (Ebrahimpour et al. 2019). Because such questions about pain beliefs are not included in the COPI, clinicians and pain educators are encouraged to explore cultural beliefs about pain with children and their caregivers. We acknowledge that it would have been beneficial to explore item 5 further to understand how the item could have been optimally adjusted for the intended context. We recommend that further COPI cross-cultural endeavours should include a panel meeting to discuss salient issues and that specific questions relating to culture need to be added to explore the conceptual congruence of COPI items in different contexts.

The panel’s comments on the various COPI items indicated that they identified the need to further explore COPI items with the children, based on children’s responses to COPI items. After completing the COPI, children should be allowed to discuss their answers. The COPI was thus viewed as a vehicle to identify discussion points with children. This is important because a child’s interpretation and concept of pain should inform child-specific pain education for effective treatment, pain coping skills and pain prevention in children (Koechlin, Locher & Prchal 2020). Healthcare providers’ and teachers’ beliefs about pain can influence children’s perspectives on pain (Koechlin et al. 2020). Velásquez et al. (2022), Fechner et al. (2023) suggest that pain education for healthcare professionals may improve effective pain management in SA such as applying a biopsychosocial pain management training module that addresses the recognition of pain and anxiety. It would therefore be beneficial that they are equipped with the necessary knowledge and skills to understand and address children’s pain within their scope of practice (Fechner et al. 2023; Koechlin et al. 2020; WHO 2020). We acknowledge that we did not enquire whether the participating panel had completed any pain science education, which could have influenced their responses to the questions about COPI items. The knowledge about participants’ training in pain science education could have enhanced our interpretation of their comments.

Strengths

The study contributed to the body of knowledge by adapting and translating the COPI into two additional SA languages. The COPI was translated by professional translators and was verified by healthcare practitioners working with children, contributing to the rigour of the process. The translated and adapted COPI is now available for further investigation regarding its suitability for the SA context. Additionally, it may be considered in clinical practice to assess the concept of pain of a child in other geographical areas in children speaking isiXhosa, English or Afrikaans. The exploration of the conceptual, item and semantic equivalence of the COPI, highlighted items and words that would need further exploration in research and may need specific attention when using the adapted COPI. The panel indicated that they value the COPI items to identify and further discuss potential conceptual knowledge gaps about pain. The utility of the preliminary COPI was subsequently tested and used to assess the concept of pain in a group of 12-year-old school-attending children in Gqeberha, SA (Odendaal et al. 2025).

 Limitations

The study has several limitations, from which several lessons can be learnt to enhance further cross-cultural adaptation efforts of the COPI in the SA context. One of the major shortcomings of the study is that it did not ask the participants to rate their consensus in the second round of the survey. The participants were only asked if they accepted or did not accept the 14-item adapted COPI. More specific questioning could have led to identifying further dissimilarities in conceptual or cultural meanings. Consideration also needs to be given to the internet availability for participation in an online survey and performing a distributional analysis for the quantitative data in steps 1 and 2. Furthermore, there was no opportunity for the panel to discuss the most appropriate wording for the SA version of the COPI. Although Epstein et al. (2015), contend that the steps in the CCA process are influenced by logistics, we suggest that in future, a panel discussion be a central part of the adaptation process, which would allow the panel to clarify the meaning of words in a group setting. Considering the diversity in SA in terms of culture, religion, ethnicity, socioeconomic status and language, it is important to ensure that outcome measures used in this context are adapted accordingly. Therefore, specific questions about cultural equivalence need to be added to the adaptation process. We did not conduct a back translation of the COPI, because of the inclusion of step 4 where panel members evaluated the translated COPI. However, we recommend that future endeavours should include a back translation of the COPI. Because of the diversity of the SA context, there may be a risk that nuances, cultural contexts or specific meanings may be lost or altered, potentially impacting the validity and reliability of the adapted COPI. Back translations may have identified discrepancies that could affect the interpretation of participants’ responses. We further acknowledge that a medical doctor (e.g., paediatrician) could not be recruited for participation, which could have added to the diversity of the panel. The second major shortcoming of the study is that the participants for the pilot study were conveniently selected from the PIs network. Apart from age, grade, home language and geographical region, they may not have been representative of the school context of the main study population. They may have felt coerced to participate as their parents were contacted first. The optimum would have been to recruit students from schools, as was done in the recruitment in the main study (Odendaal et al. 2025). We further acknowledge that the timing of the pilot testing interviews (not directly after the completion of the COPI) may have influenced the responses. Additionally, we did not study operational and measurement equivalences. These are important to ensure that the instructions provided and mode of use of the instrument applies to the context (operational), and do not affect the results, and to ensure that the psychometric properties of the adapted COPI are acceptable (measurement) (Herdman et al. 1997). We acknowledge that CCA and cross-cultural validation are two different processes (Epstein et al. 2015). We suggest further studies investigate the psychometric properties of the COPI to ensure that the validated instrument has the same properties and functions as the original COPI to enable the widespread use of the SA version of the COPI.

 Conclusion

The COPI was cross-culturally adapted and translated into Afrikaans and isiXhosa for use in the Eastern Cape of SA. There was consensus regarding the item and semantic equivalence between the original and adapted COPI. Further research on the conceptual (cultural), operational (mode) and measurement (psychometric) equivalences is required to adapt and validate the COPI in the South African context.

 Acknowledgements

The authors of this study gratefully acknowledge the contribution of panellists, the participating schools and children. The authors would also like to thank Prof. Quinette Louw for her guidance provided.

Competing interests

The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. The author, D.V.E., serves as an editorial board member of this journal. The peer review process for this submission was handled independently. The authors have no other competing interests to declare.

 Authors’ contributions

T.O., D.V.E., I.D. and R.A.M. contributed to the conceptualisation, formal analysis and writing and editing of the article. T.O. conducted the research. T.O., D.V.E. and R.A.M. contributed to the administration of the project, while D.V.E. and I.D. were involved in the supervision of the research project. Data validation was performed by T.O., D.V.E. and R.A.M.

 Data availability

The authors confirm that the data supporting the findings of this study are available within the article.

 Disclaimer

The views and opinions expressed in this article are those of the authors and are the product of professional research. It does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. The authors are responsible for this article’s results, findings and content.

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How to cite this article: Odendaal, T., Diener, I., Maart, R.A. & Ernstzen, D.V., 2025, ‘Cross-cultural adaptation of the Concept of Pain Inventory for South African children’, Rehabilitation Advances in Developing Health Systems 2(1), a21. https://doi.org/10.4102/radhs.v2i1.21