Cross-cultural adaptation “encompasses a process which looks at both language (translation) and cultural adaptation issues in the process of preparing a questionnaire for use in another setting” (39). We adhered to long-established guidelines (40) in combination with six categories of equivalence (29) which were adapted and described by Stevelink and von Brakel (41) specifically for participation assessments (p. 1257) (see Table 1).

Germany, Austria, and Switzerland are independent national entities with state-supported health care and federally organized educational systems. All three countries support families with small children and provide financial support, early counseling support (such as midwifery and early educators), and early medical treatment. While early childcare possibilities are not obligatory, children in all three countries attend kindergarten before entering school. As the Salamanca Declaration (42) recommended, all three countries aim to include children with special needs in mainstream schools. However, due to the different national political systems, there are essential differences in regulations influencing early childcare of families, preschool, and health services. Maternity leave after childbirth varies between 8 weeks (G) and two years (AU). After caring for small children for 3 years, parents in Germany are legally entitled to an equivalent type of job, which means that German parents often stay longer with with their young children at home. Preschool or kindergarten is not compulsory before four years of age (Switzerland) and 6 years of age (Germany). The models of state-run and private preschool institutions vary greatly, reflected by models, names, and how they are financed. Linguistic examples are “nurseries”, “kindergartens”, “pre-schools”, “play groups”, “forest groups”, or “foster families”. While medical treatment is financed in Austria and Germany through the health insurance of caregivers, children in Switzerland have their own health insurance, and caregivers must pay 10% of all ambulatory costs. Thus, to summarize, a cultural adaption of the YC-PEM into German is needed to integrate a second cultural adaption into three similar but also different national contexts.

During different stages of this research, a variety of persons participated. (1) The research team (BK, FE, CS, RA, TM, and BD) consisted of professionals with experiences in childhood practice and research from the three German-speaking countries. (2) The expert committee reflected a multi-perspective view on the life of young children in the three countries. It consisted of parents of young children, occupational therapists, early pedagogical educators, health care methodologists, and early childhood researchers. (3) The developers represented by the YC-PEM team of CanChild were consulted and informed regularly after signing a translation agreement. (4) A professional linguist and a native-speaking teacher oversaw the translations and spellings. (5) Twelve caregivers of children with and without disabilities participated in qualitative think-aloud interviews. Criteria for inclusion were: (a) caring for a child between 0 and 5 years of age, (b) living in Germany, Austria, or Switzerland in the last five years, and (c) being able to read and speak German. As reported in similar work (31, 33, 34), convenience sampling was used to recruit caregivers. This was combined with a purposeful sampling technique to reach diversity. Sampling was conducted in two rounds (see Figure 1). All participants consented verbally and in written form to their own participation and on behalf of their children. Table 2 describes the characteristics of the sample. Ethical approval was obtained in all countries from regional ethical committees: the Ärztekammer Westfalen-Lippe und WWU Münster (Germany: 2020, February 14; Vg-Nr. 51451510), Kantonale Ethikkommision Zürich (Switzerland: 2020, February 6; BASEC-Nr. REQ-2020-00114), and Ethikkommision der Medizinischen Universität Graz (Austria: 2020, June 10; EK-Nr: 32-243 ex 19/20).

The analysis aimed to examine the translation and cultural adaptation of the YC-PEM to reach the six equivalences described by Stevelink and van Brakel (41). The research team precisely documented all adaptations during the five stages, including when the need for adaptations emerged and on what evidence they were grounded.

We estimated the number of items adapted for an item and semantic equivalence by applying a summative content analysis (48). Additionally, the researchers investigated how caregivers, experts, and developers from CanChild reasoned for these adaptations.

The research team judged operational equivalence by analyzing the comments of caregivers on the adaptations concerning format, instructions, and mode of administration.

Next, for conceptual equivalence, the researcher used the concepts elaborated during the adaptation of the PEM-CY (G) (43) and integrated them into the YC-PEM translation. To verify this procedure, prompting questions were incorporated into the think-aloud interviews with caregivers, such as “How do you understand the word “involvement” (German: Engagement)?” The parts of the interviews relating to the assessment were transcribed. When the parents described their children's participation, the researchers summarized the content based on the decisions of two people. Next, the researchers analyzed all scripts using a direct content analysis (48). The direct content analysis allowed qualitative deepening questions such as “How were the caregivers’ conceptualizations of participation assessed?” “Were any theoretical arguments presented to question or reject conceptual equivalence?” and “How was the appropriateness of the instrument judged for use in the study population?” (41) The research did not analyze measurement equivalence, and we also refrained from additional testing. Finally, to estimate the overall cultural equivalences, the research team discussed the summarized results presented as a consensus version in the following results. Qualitative data were analyzed in German and translated into English at the very last step of analysis. This approach prevents out-of-context interpretation (49).

Two hundred and twenty-five adaptations were made to cross-cultural translate and adapt the YC-PEM (G) from YC-PEM. During translations and the synthesis process in combination with research and expert teams, 56% of the adaptions, mostly changing of words, were made. Analysis of the interviews resulted in more frequent adaptions in instructions, visualization, and structure (see Table 3). The distribution over the three parts of the YC-PEM was almost even. Table 4 lists the adaptations and coherent equivalences in a timeline throughout the five stages of the research process.

Out of 188 adaptations, most differences emerged in “activities” (n = 108). They comprised 17 umbrella terms, such as “recreational activities and trips,” which we changed to “unstructured activities and trips.” For German speakers, structured activities can also be recreational. To adhere to the following examples, such as playgrounds and parks, beaches, hiking, bikes, and scooters, “unstructured” was better. The remaining adaptations to reach item equivalence comprised 91 changed activities. While some are unknown in German-speaking countries (e.g., “parents night out” and “participating in fundraising”), others were, according to parental feedback, not used with babies and toddlers (e.g., “soccer,” “T-ball,” “gymnastics,” “dance,” and “martial arts”). Replaced items reflect activities of young children in German-speaking countries (e.g., “showering,” “cutting, chopping and mixing,” “baby sport,” “zoo,” “farm,” “forest,” and “bicycle with child seat or trailer”). The researcher also discussed activities such as “sledding,” “climbing,” or “playing at the beach,” which were equally typical in all three German-speaking countries. Lastly, the word “thing,” often used in the original YC-PEM in phrases such as “things at home,” were negatively commented on by caregivers. “We do not only modify “things”, we change our behavior, our feedback, our planning to help our child to participate more actively” (Ann, Germany, 1.round). Caregivers felt “aspects” are a better word to ask for all kinds of strategies they use to support their children. Lastly, for item equivalence, the research team refrained from the proposed wording that reflect the language of one single German-speaking country. Examples are “Kindermädchen”, (we used “Babysitter”) or “Tierpark” (we used “Zoo”).

During the process, 50 words were adapted, added, or removed to ensure a semantic equivalence for German as understood in Austria, Germany, and Switzerland.

Specifically, many semantic adaptations were needed in the three sections of the environment. One example is the factors asking about the physical, cognitive, and social demands of typical activities (items. 3–5). Caregivers struggled to transfer the abstract terms of physical demands (strength, endurance, and coordination) to concrete activities. Therefore, the research team added examples of activities associated with these demands in all sections. For example, referring to physical demands at home, “e.g., strength when crawling and climbing, endurance when running, and skill when doing handicrafts,” were added. Cognitive demands of daycare/preschool are another example: these were explained with “e.g., paying attention in a circle, learning numbers, and problem-solving when building and putting things together.” In the community environment, the social demands were explained with: “e.g., saying hello to neighbors and asking for buns in the bakery.” These adaptations were shown to be applicable to the caregivers, as less feedback was given regarding these environmental factors in the second round of interviews.

Next, participants expressed enormous difficulties with the answer option “no impact” within the response items of all environment sections. A mother reflected: “I am perplexed. Does it mean a supportive environment exists and, therefore, the environment has no impact? Or does it mean you don’t realize any impact of the environment? We deliberately chose a child-friendly living area, so it is normal for us to live in a child-adapted environment. So, what to choose: no impact or huge impact?” (Sofia, Switzerland, 1. round). To clarify, we changed this answer option to “Are currently not issues for us.”

Lastly, umbrella terms helped to structure the YC-PEM. However, it was even astonishing that caregivers did not recognize existing umbrella terms in the first round. One participant said: “These are a lot of interesting activities, but can they not group it into 4–5 they put together? It is exhausting to see so many papers and imagine you are going to fill them all out” [sic] (Julia, Austria, 1.round). Analyzing similar statements, the researchers explained the confusion in how languages express umbrella terms. In German, they never repeat subterms. So instead of using “arts, craft, stories, and music”, we chose “creatives” for the German version as “art” in German is quasi-exclusively used for adults. On the other hand, the English umbrella term “social gathering” in the community sections needed to be translated with “social gatherings in public spaces” to be understood by German-speaking caregivers.

Caregivers strongly commented on operational adaptations during both interviews. Specifically, reading the instructions without graphical support (first interview) was hard for many participants. For example, one caregiver stated: “I think this is, really, much too much. I feel like in an exam, trying to sort my thought out but always being confronted with new aspects…..even the spacing is too narrow, it is hard to stay even in one line” [sic] (Christine, Germany, 1. Round). Others just skipped the introduction commenting on reading it later when they understood the questionnaire better. Most caregivers asked for a graphical representation, “similar to when you fill out the tax claim” (Kim, Austria, 1. Round) as one explained. Caregivers felt overwhelmed by the instructions and often misunderstood them. As participants often missed the four-month time frame to answer, it was mentioned in YC-PEM (G) on each page. Eighty-two percent of all operational adaptations were made in the instructions. The one-page introduction in YC-PEM was divided into two pages in YC-PEM (G); part 1 was for the three participation settings and part 2 was for the adherent environment sections.

Furthermore, the instructions in the 2nd round were changed. While the verbal instructions were simplified, the supplemented graphics indicated the process of filling out the YC-PEM (G): we observed that caregivers often oriented themselves vertically, while with the graphics, a correct horizontal procedure becomes obvious. The researchers presented different graphical versions in the second interview so that caregivers could indicate the most convenient one. Additionally, to give orientation for the three settings of YC-PEM (G)—home—daycare/preschool—community, the colors used in the YC-PEM were used more prominently in YC-PEM (G). During the last round of interviews, participants refrained from commenting negatively on the operational modes of the assessment. Figure 2 shows a visual example of the participation instruction in YC-PEM (G), while Figure 3 shows the instruction for the environment section. Both examples are excerpts from the English back translations to inform the developers.

Lastly, for caregivers who did not use any daycare facilities for their children, starting to answer the daycare/preschool section of YC-PEM was irritating. Consequently, in YC-PEM (G), a prominently placed question asks caregivers whether their children had attended any daycare facilities during the last 4 months. If not, YC-PEM (G) instructs to skip this second section.

The fact that we could build on the main concepts of the cultural adaptation of PEM-CY into German reduced adjustments to conceptual equivalence significantly. However, some conceptual issues still need consideration.

Firstly, we heard in the interviews with caregivers that participation frequency is a concept that is not always important to caregivers of young children. “Sleep and rest, mealtime, and daycare are activities all young children participate in each day. So, I don't understand why frequency is important. I think the quality is much more important; how does she eat? Does she eat the healthy stuff we offer?” (Naomie, Switzerland, 1. Round). The research team could not address this problem as it seems to touch the very core of the assessment. However, by filling in additional space after each activity in YC-PEM (G) for comments, parents could at least explain their thoughts and judgments.

Secondly, “involvement” is a concept that caregivers of young children give parents a lot to think about. Consequently, it was not easy to fill in. As there is no single word to translate «involvement» in German, we used engagement (G: Engagement) and explained it as being active, supportive, and interactive. Two caregivers of small children under the age of one expressed how they observe this engagement when their children are curious and take an interest in something, even when they cannot yet be active or supportive. The second round of interviews tested “interest and curiosity”, and parents reacted overly positively to this explanation. However, after the final backtranslation, there was an intensive conversation with the developer team from CanChild about the understanding of “involvement.” While caregivers from this present sample rated strongly whether their young children showed interest and curiosity, parents of the original sample of the developers (20) rated strongly how actively children contributed to an activity. In an exchange with the developers, we discussed whether this was due to different cultural imprints, convictions, and socialization goals, such as an individualistic vs. a collectivistic view. Probably, parents from Western European cultural areas differ from North American or South Asian parents; thus, their reflection of their belief systems is specific to their context. This aspect should be considered in future research and cultural adaptation of the measurement. At the end of this iterative discussion, the research team decided to keep “interest” in the explanation of “involvement” in the YC-PEM (G). A caregiver of a young autistic boy explained how she thinks it is important to keep various observations in “involvement”: “My non-verbal boy can interact with me about a toy train, or he can support me in putting the toy locomotive on the tracks. I think both present a form of engagement, and I value that both are included here” (Sarah, Switzerland, 1. round). The importance of including various aspects in “involvement” is also reflected in the comment of another mother: “When it comes to shopping, she can’t get actively engaged because there she is in the stroller, she would clean everything out” [Sic] (Mary, Austria, 2.round).

Thirdly, caregivers often asked themselves during think-aloud interviews how independently their children performed activities. Some wondered how their young children should prepare meals or participate in their own meetings. So, we needed to express that independence was not a concept asked for in YC-PEM (G).

Fourthly, YC-PEM asked caregivers to name strategies and when they wished for changes in participation frequency and involvement. The research and expert teams deliberately wanted to strengthen this part by asking caregivers about strategy even when they did not wish for any changes. Participants overly accepted this; hence, one mother of a healthy young girl said: “There is no need for parental strategies. She's curious; that's enough.” (Naomie, Switzerland, 1.round).

Fifthly, caregivers found it less suitable and sometimes even impossible that in the environments section, global environments (such as the physical layout in the community) are judged commonly: “I think it's less meaningful that way because you can't relate it to a specific situation”, (Jane, Germany, 2. round) while another caregiver explained: “Yes, in the grandparents’ house she can move more freely, she can go into the garden, while in in the hotel in Italy, she can't go to the beach because there is a street in between” [sic] (Julia, Austria, 1. round). By inserting the words “aspects of the environment”, YC-PEM (G) tries to help parents to take a step back and evaluate aspects of the environment from a broader stance.

Lastly, one caregiver criticized the fact that children cared for partly by grandparents are not mentioned. However, as we have included the foster care situation and several words and conditions for external daycare, we have decided to refrain from inserting “grandparents” as a particular daycare situation.

As no adaptions in psychometric properties were performed for YC-PEM (G), we have no data to assure measurement equivalence.

When cultural equivalence is seen as a combination of the previously mentioned six equivalences, the authors are convinced that this study succeeded to a large extent. The overall feedback from participants to the questionnaire was constructive and positive. A mother of a child without disability stated: “It has only now become clear to me how privileged we would live. We have an optimal environment, and I am totally happy how my child can participate in it.” [sic] (Sofia, Switzerland, 1. round). Parents of children with a disability often needed more time to reflect on their children's participation and how they could summarize the different environmental conditions. A mother of a boy with autism spectrum disorder reflected: “I have been asked for pages how my child handles a ball. I found this one very useful. It also opened my eyes to what is really important for me with my child.” (Sarah, Switzerland, 1 round).