Ethical approval

The research protocol was approved by the Hospital ethics committee of Ghent University (B670201836558). Written and verbal informed consents were obtained from the literate (via mails) and non-literate (patients) experts respectively.

Study design

A focus group (FG) discussion of experts followed by an internet based 3-round modified Delphi-study.

Procedure

First, a FG discussion was carried out to generate the preliminary materials that were used during the Delphi rounds [30–32], following a similar procedure as described by Orhan et al. [21]. Next, a 3-round modified Delphi-study was designed to gather inputs, corrections, and consensus of experts using a series of online questionnaires [21, 32, 33].

Focus group

The preliminary PNE teaching and HE materials were developed through FG discussions. Three to 4 experts are enough for a FG meetings when participants have specialized knowledge and/or experiences to discuss [34, 35], even though using 4 to 6 experts is becoming increasingly popular because smaller groups are easier to recruit, host and are more comfortable for participants [36]. Therefore, 4 experts were included in this FG discussion (these experts were different from those in the ‘Delphi expert panel’). Since there is no limit to the number of meetings in FG, as it can vary from 1 to several meetings based on the researchers’ need and saturation [37], this FG had 3 meetings and each meeting lasted for up to 1 hour [38].

Experts in FG meetings are individuals that generally have superior knowledge about the topic, but there is no clear definition for such expertise [39]. Therefore, all the 4 experts were physiotherapists who have experience in the PNE concept (with a minimum of 1 peer-reviewed publication in PNE). In addition, 1 of the experts was a native Hausa language speaker. The first author (NBM) moderated the meetings and recorded all discussions. The content of the existing PNE teaching and HE materials [5, 21] was discussed during the FG meetings. The main message of ‘Explain Pain’ [5] was preserved. This content comprises the importance of pain, differences between acute and chronic pain, how pain originates in the nervous system, what makes pain to persist for long time, and the sensitivity of the nervous system [5]. For the purpose of explaining this, contents, pictures, drawings, metaphors, and stories were also discussed in relation to Hausa culture.

The FG resulted in the preliminary PNE teaching and HE materials to use in the first round of the Delphi-study. The following major adaptations to the existing materials [21] were performed: (i) the development of HE materials in form of an oral interview between an expert and a journalist, so that Hausa speaking patients can listen to the interview, since majority of them cannot read [28]; (ii) modification of the pictures in the TM with drawings that depict African/Hausa people; (ii) due to cultural and religious peculiarities, separate PNE TM for male and female patients were developed [21]; (iv) metaphors, examples and stories that were thought to be inappropriate for Hausa speaking patients were changed or modified to fit Hausa contexts.

The teaching and HE materials were produced in 2 languages; a Hausa version for Hausa speaking experts and an English version for experts that do not speak Hausa. Firstly, all the materials were developed in the English language and then translated into Hausa language by the first author who is fluent in English and a native Hausa speaker. The translated materials, together with the English materials, were sent to 2 Hausa language experts for corrections [21]. This translation procedure was used after each round of the Delphi-rounds. All drawings in the materials were performed by a professional artist based on the feedback of the experts.

Throughout the manuscript, TM refer to the PowerPoint slides developed for teaching patients about pain, whereas the HE material applies to the written script of the prospective oral interview that patients will listen to at home to supplement what they have learned from the TM.

Round 1

Two weeks before the start of the first-round, the participants were sent e-mails containing the PNE TM (male and female) for them to study. After these 2-weeks, the questionnaires that consists of both open and closed-ended questions in English language regarding the submitted material were sent. The open-ended questions provided the experts with freedom to give any relevant feedback, while the closed-ended questions limited their responses to only PNE contexts, since many of the participants were not PNE experts.

Experts who had limited computer literacy were guided on how to fill in the online questionnaires by one of the researchers (JM), who has experience in online surveys. The experts and patients were asked to complete and submit the questionnaires within 2 weeks. To increase the adherence rate of the experts, a reminder via e-mail with an additional 2-week grace period was sent to those that were unable to complete the questionnaires within the initial 2 weeks.

The questionnaire for round 1 consisted of 7-items on demographics and a total of 42 (31 closed-ended and 11 open-ended) PNE materials-related questions that were adapted and modified from a previous study [21].

The questions were divided into 9 sections (“x”) which consisted of ‘acute pain’, ‘pain biology’, ‘pain modulation’, ‘pain matrix’, ‘chronic pain’, ‘beliefs, thoughts and behaviors’, ‘central sensitization’, ‘implications’, and ‘general questions’. In each of the above mentioned sections (except the ‘general questions’), the following 4 multiple choice questions were asked using a 5-point Likert scale, (strongly agree–agree—don’t know–disagree—strongly disagree) [42]:

1. Do you think that these slides/pages provide relevant information about “x” (each section bears its name)?
2. Do you think that the stories used to describe the”x” are feasible for the Hausa population?
3. Do you think that visual information (pictures) for”x” in the TM is feasible for Hausa-patients?
4. Do you think the message is clear and patients will understand?

At the end of each section, an open-ended question was asked:

1. If you have any suggestion(s) regarding the description of”x”, please write them in the box below.

Three final and open-ended general questions were asked:

1. What do you think about the order and the concept? Is it understandable, logical?
2. General remarks?
3. Further suggestions?

The consensus level was predefined at ≥75% [43], which is the minimum consensus required for a decision to be made on a particular content. When 75% or more of the experts choose to ‘agree’ or ‘strongly agree’, then such content was retained. If 75% or more of the experts choose to ‘disagree’ or ‘strongly disagree’, such content was rejected. These contents were subsequently modified based on the experts’ suggestions and resubmitted in the next round. In the first round, only the 2 TM (male and female) were sent to experts in order to minimize participation fatigue and drop-outs due to bulkiness of the materials.

Round 2

In this round, the modified TM together with the HE material were sent to all Delphi-experts that participated in round 1. In case of consensus regarding the inappropriateness of an item in the TM in round 1, such items were either modified or removed from both teaching and HE materials prior to sending them for round 2. Two different online questionnaires were sent to the experts during this round: one for the HE materials and another for the modified TM. Two weeks were given (plus two weeks grace) to the experts to complete and submit the questionnaires.

The questions for the HE materials were similar to that of the TM in round 1. Except for ‘pain modulation’ and ‘central sensitization’ sections that were not included (since these 2 sections were not included in the HE material), instead, an ‘introduction’ section was included. The HE material questionnaire contained a total of 35 (25 closed-ended and 10 open-ended) questions. The questionnaire for the revised TM comprised a total of 31 (23 closed-ended and 8 open-ended) questions about changes/modifications done in the following sections ‘acute pain’, ‘pain biology’, ‘pain modulation’ and ‘beliefs, thoughts and behaviors’, because experts suggested for that.

Additionally, closed-ended questions were asked concerning the male and female TM after the update:

1. Do you think the updated material provides more relevant ‘a = information, b = pictures, c = stories and metaphors’ for educating Hausa-patients about pain than the round 1 material?
2. Do you think the message in the updated material is clear and patients will understand?

All the questions above were graded using the same 5-point Likert scale as in round 1 and the consensus level was maintained at ≥75%.

Three general open-ended questions concerning the updated material were added: Is there anything;

1. You would like us to add to this TM?
2. Specific that you would like us to modify or simplify again in this TM?
3. You will further suggest?

Round 3

After qualitatively analyzing the responses of the experts from Round 2, questions were asked to finalize the development of the materials. Six closed-ended and 2 open-ended questions were asked to finalize this round. The questions had the usual 5-point Likert scale as in the previous rounds. The questions and responses are presented in the Results section (Table 5). This round was completed within 2 weeks.

Round 1

Table 2 shows the responses of the experts to the closed-ended questions during round 1. For all the content of the materials, the experts reached a consensus of ≥75%, and as such, they were retained. However, the experts made suggestions for changes through the open-ended questions. The experts’ responses to the open-ended questions of round 1 are presented in Table 3. Since the materials were developed for Hausa speaking patients, suggestions from experts that were not familiar with the Hausa culture, especially those that contradicted suggestions of experts familiar with Hausa culture about the feasibility/cultural context of content were not used in the modification of the materials. Most of the suggestions and changes that were made were related to drawings (change or modification to fit the Hausa culture) and the simplification of information, e.g. giving an explanation of what a spinal cord is and giving some additional content like maladaptive beliefs.

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Table 2. Results of the Delphi round 1 (teaching materials for males and females) (n = 19).

https://doi.org/10.1371/journal.pone.0253757.t002

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Table 3. Experts’ responses to open-ended questions for the Delphi round 1 (for male and female teaching materials) (n = 19).

https://doi.org/10.1371/journal.pone.0253757.t003

Round 2

Table 4 presents the responses of the experts to closed-ended questions during round 2. During this round, the revised TM (male and female) and the HE material were reviewed by the experts. The experts reached a consensus of ≥75% for the entire content, with some parts reaching complete consensus (100%). Therefore, additional changes in content were only done in response to the open-ended questions. Table 4 also presents the responses to the open-ended questions of experts in round 2, but suggestions requiring the use of video/animations were not considered because of resource limitations, and low technological advancements among the end-users.

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Table 4. Results and responses of the Delphi round 2 for the home education material and the reviewed teaching materials (n = 18).

https://doi.org/10.1371/journal.pone.0253757.t004

Round 3

The results of the closed and open-ended questions in the final round are presented in Table 5. Consensus was attained in all the closed-ended question items except one (see Table 5).

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Table 5. Results of the Delphi round 3 (final round) closed-ended and open-ended questions for the reviewed home education material and teaching materials (n = 18).

https://doi.org/10.1371/journal.pone.0253757.t005

The aim of the study was to develop culturally-sensitive PNE materials for Hausa speakingpatients with CSP. Preliminary teaching and HE materials were developed through a FG discussion and subsequently the final materials were developed through a 3-round Delphi-study. The TM were adapted and modified from Orhan et al. [21], who conducted a similar study among Turkish-immigrants in Belgium, whose culture is considered to be the closest to a Hausa culture among all the culturally adapted PNE materials. In this study, an audio interview was developed as HE material, given the low literacy level in that region [28]. This is supported by a previous study [11] that recommended repetitions of PNE, in different forms (verbal or other) as it helps patients to understand the theory of neurophysiology.

The PNE materials developed in this study is the first culturally-sensitive materials for an African language/culture. To our knowledge, this is also the first study that has tried to provide HE materials that can be used by the non-literates. This as necessary because the previous PNE materials were developed for populations that, as reports by UNESCO shows, have higher literacy levels than the general Hausa population [28]. Therefore, this development is in-line with the recommendations for improving access to pain management for all [12]. Although data on Hausa people being frequent listeners of audio talks is lacking, and a previous study has reported that about 89% of Nigerians to own an audio listening set [45]. This may assist the listening of the HE interview among Hausa patients.

Similarly, the development of the separate male and female TM has taken care of the importance attached to gender variations among Hausa people due to religion and culture. Varied gender treatment and differences exist in Hausa context, e.g. preventing girls from attending school; withdrawing girl-children from school; using girls for street hawking; and unequal treatment of children by the parent [46]. Moreover, a previous review has reported variation of pain perception, emotion and understanding between males and females among different cultures [47], as such, a uniform material for both males and females may not be appropriate. Also both teaching and HE materials bear names, examples, metaphors, and drawings/pictures that are available and familiar for Hausa speaking patients, which is in conformity with the concept of cultural sensitivity [22].

During round 1, the experts reached the minimum consensus level in almost all the closed-ended questions related to the TM. This may be a consequence of the adapted materials being modified [21] in relation to the religious inclination of most Hausa people, and to some extent their culture. The experts’ responses to the open-ended questions during this round suggested the need for changes of some pictures and drawings to fit the culture and also simplification of some specific language terminologies used, which are very vital for the development of any culture sensitive tool [22].

The experts’ consensus level increased in round 2, with 100% of experts agreeing on most of the content of the materials. This could indicate that the materials in round 2 were better accepted by the experts compared to the prior materials. Obviously, this trend is aimed for in tool development using experts’ opinions [48, 49]. During round 2, there were some suggestions regarding the use of videos and animations, but such additions were not included as they may not be appropriate for Hausa speaking patients due to low technological advancement, low literacy levels, and high poverty rates among the target population [28, 50].

During the final round, the experts reached consensus on all the contents of the teaching and the HE materials and there were no suggestions that warranted an additional round. The researchers considered the TM ready for application and the HE material was then recorded in form of an oral interview by the first author with a professional Hausa journalist.

Practice implication

The present Delphi-study may provide a direction for further research in which the effects of culturally-sensitive PNE materials can be piloted among Hausa speaking patients with CSP.

Limitations

During the focus group discussion, only physiotherapists with PNE knowledge were involved in the development of the initial PNE materials that were subsequently used during the Delphi rounds. The lack of other professionals involved in pain management might have affected the overall presentation of the PNE, however, we ensured preservation of the original PNE concept.

Another potential limitation of this study is our inability to follow a standard translation procedure for the materials developed, this is because the content of the materials was changed after each of the Delphi rounds based on experts’ suggestions, and we lack resources and personnel to conduct standard translation procedures after each Delphi round. However, language experts with a minimum of PhD degrees in linguistics (Hausa language) were involved in the translation and they have been duly acknowledged.

Additionally, there was variation in the language of the experts. Therefore, the experts that did not speak Hausa language had to study the English version of the document. Also, the experts recruited were predominantly Nigerians, and this is because Hausa people are predominantly found in Nigeria. Additionally, some of the patients recruited were not computer literate and not fluent in English language. Consequently, a research-assistant who was told not to influence their choices had to guide them on how to respond to the questionnaire.