Talking to children about their rig

Talking to children about their rights in research
With the reconceptualization of childhood comes the acknowledgement of children’s decisionmaking ability. Indeed, at the core of ethical research with children is the question of children’s capacity to make informed decisions about their lives (Bessell, 2006) and to understand what their rights are when agreeing/consenting/assenting to participate. As in a number of contemporary social researchers (Bessell, 2006), children in the reference group stressed that participants had certain rights in the research process and that they needed to be explained clearly so that they could be understood and enacted: “Kids have gotta know what rights they’ve got. And you should make sure they get it.” This proved to be a significant task for the research team, who spent considerable time reflecting on how they could do so most appropriately. With limited descriptions of tools and processes found in the literature, the team spent time with the children talking about how they might ensure that discussions about rights might be meaningful and not merely a token gesture. Throughout the project we constantly reflected on our experiences and modified our approaches on a number of occasions. As part of their recruitment package, each child in the project was given a rights page that named the children’s 12 rights in research (including the rights to privacy and confidentiality, to nonmaleficence, and to beneficence; Figure 3). The page had a picture that described each right and a commitment from the team in relation to the research process (i.e., “We will not hurt or tease you, and we will stand up for you if others do” and “If you want to stop working [talking] with us you can at any time. We won’t hold it against you”). Workers and parents were
encouraged to discuss the rights page with the child before the interview or group workshop and to inform them of the team’s commitment to ensuring that they were upheld. At their interview we then revisited the issue of rights and ensured that the child understood their meanings. For example, the second right states, “You have the right to participate in a way you like.” When explaining this right, the researcher read the statement out and asked the child was he or she thought this meant. If the child understood the meaning, the researcher would acknowledge this—“Yes, that’s right” —and follow up by linking it with the explanatory statement: It says here “It’s up to you if you get involved in the research or not and how you want to be involved.” So if we’re talking about your family, for example, I might ask you if you’d like to a drawing or tell or a story or just chat and you can choose one of these or come up with another idea instead. We then checked to make sure that the child understood the explanation and asked, “Do you think that’s a good idea?” or a similar question. We then reminded the children of the choices that they had for each activity and allowed them to feel as though they had some control over their involvement.
Some of the rights were more difficult to explain than others. For example, the right to confidentiality proved challenging. We needed kids to understand that the information they provided was going to be used to shape a report for government and others to read but that individual children would not be identified. At the same time, we had to ensure that children understood that if we were worried about the child’s safety or if the child disclosed information that would require further action, we would be obliged to break their confidence and inform their parents or an appropriate agency for further action. The statement of the right and its explanation were changed on a number of occasions to reflect how children understood the right and the intention of the right. Further workshopping might still be required to better encapsulate the complexity of the issue. The children were invited to keep the rights page, which also included contact details for staff at the university who could answer any questions they might have or to receive complaints. Children reported that they appreciated knowing about their rights (although a few thought that “it was a bit boring”). One young boy demonstrated that he had been empowered by the process by taking the rights page home, sticking it to his bed and telling his mother that children had the
right to “have a say on stuff that’s got to do with them.” Incidentally, his mother phoned the research team and asked them to explain to her child that this right did not allow him to choose to not have a bath.
The Children’s Reference Group stressed that it was important for children to know their rights in research but felt that going through the rights page before each activity was boring and unhelpful. Instead, they suggested that we develop a game where some of the rights were included among other “fake” or “wrong” statements and where children had to decide which were real and which were not. In response to this advice, we developed a series of statements which were printed on to laminated cards, each of which was related somehow to the rights that were included on the rights page. Children were given the cards and were asked to place them under the headings of “completely right,” “completely wrong,” and “kinda right and kinda wrong.” When the children had placed the cards underneath the three headings, they were asked questions about why they chose to put them there, and then for those in the “completely wrong” and “kinda right and kinda wrong” were asked to rewrite them to make them more accurate.

This activity was included in a group exercise and proved to be one of the more engaging tools we used. Children were very keen to explore the issues related to the rights and gave insightful explanations as to why they believed the statements were accurate or not. Each group spent time meticulously wording the new statements to ensure that they could not be misinterpreted and so that they conveyed the sentiments behind the right accurately. For example, the statement “Kids should always be asked about stuff to do with their lives” was changed because some of the children thought that this should not be the case “all of the time” and that they “shouldn’t have to talk about the things that you can’t remember.” As such, they changed it to “Kids should always be asked about stuff to do with their lives, but other kids have the right to say no if they don’t want to talk about it.”

Consent, assent and the importance of choice
The issues of consent and assent are contentious within the literature on children’s research. Some writers have argued that consent can be given by parents on behalf of children (with or without their assent) (see, e.g., Mahon, Glendinning, Clark, & Craig, 1996), whereas others argue that children and young people should be approached directly because, ultimately, it is their right to choose whether they participate.
In this study we recognized that most parents play an important part in the lives of their children and invited those who were living with their children to support their children’s participation by giving their consent. However, we also provided children the opportunity to choose whether they participated and how they participated in this research. We informed them that their parents had agreed for them to be interviewed but that because it was their stories and their ideas that we would be exploring, they could decide whether they would talk with us. We also informed them that they had a number of choices that they could revisit through the interview process: whether the interview be taped, whether they did art or storytelling activities, whether their artwork could be taken and used in the report, and whether there were things that they did not want to discuss or have discussed in the report. Each child completed two copies of a consent form that asked them to tick a box if they understood their rights in the project and were
happy to participate. Some children did not tick all boxes (i.e., one chose not to give his art-work to the research team), which highlighted the fact that children did consider their options and took advantage of their choices. This was reiterated in children’s feedback regarding interviews: If people didn’t want to do something and you were mean and said that they had to do it, that would be mean, so it was good that you weren’t mean. [The researcher] asked me to draw my house and I didn’t want to (because it is hard
to draw it because of the shape) so I didn’t do that—we just talked about it. That was good. I didn’t have to do anything I didn’t want [to].

Hasil (Bahasa Indonesia) 1:

Berbicara dengan anak-anak tentang hak-hak mereka dalam penelitianWith the reconceptualization of childhood comes the acknowledgement of children’s decisionmaking ability. Indeed, at the core of ethical research with children is the question of children’s capacity to make informed decisions about their lives (Bessell, 2006) and to understand what their rights are when agreeing/consenting/assenting to participate. As in a number of contemporary social researchers (Bessell, 2006), children in the reference group stressed that participants had certain rights in the research process and that they needed to be explained clearly so that they could be understood and enacted: “Kids have gotta know what rights they’ve got. And you should make sure they get it.” This proved to be a significant task for the research team, who spent considerable time reflecting on how they could do so most appropriately. With limited descriptions of tools and processes found in the literature, the team spent time with the children talking about how they might ensure that discussions about rights might be meaningful and not merely a token gesture. Throughout the project we constantly reflected on our experiences and modified our approaches on a number of occasions. As part of their recruitment package, each child in the project was given a rights page that named the children’s 12 rights in research (including the rights to privacy and confidentiality, to nonmaleficence, and to beneficence; Figure 3). The page had a picture that described each right and a commitment from the team in relation to the research process (i.e., “We will not hurt or tease you, and we will stand up for you if others do” and “If you want to stop working [talking] with us you can at any time. We won’t hold it against you”). Workers and parents wereencouraged to discuss the rights page with the child before the interview or group workshop and to inform them of the team’s commitment to ensuring that they were upheld. At their interview we then revisited the issue of rights and ensured that the child understood their meanings. For example, the second right states, “You have the right to participate in a way you like.” When explaining this right, the researcher read the statement out and asked the child was he or she thought this meant. If the child understood the meaning, the researcher would acknowledge this—“Yes, that’s right” —and follow up by linking it with the explanatory statement: It says here “It’s up to you if you get involved in the research or not and how you want to be involved.” So if we’re talking about your family, for example, I might ask you if you’d like to a drawing or tell or a story or just chat and you can choose one of these or come up with another idea instead. We then checked to make sure that the child understood the explanation and asked, “Do you think that’s a good idea?” or a similar question. We then reminded the children of the choices that they had for each activity and allowed them to feel as though they had some control over their involvement.Some of the rights were more difficult to explain than others. For example, the right to confidentiality proved challenging. We needed kids to understand that the information they provided was going to be used to shape a report for government and others to read but that individual children would not be identified. At the same time, we had to ensure that children understood that if we were worried about the child’s safety or if the child disclosed information that would require further action, we would be obliged to break their confidence and inform their parents or an appropriate agency for further action. The statement of the right and its explanation were changed on a number of occasions to reflect how children understood the right and the intention of the right. Further workshopping might still be required to better encapsulate the complexity of the issue. The children were invited to keep the rights page, which also included contact details for staff at the university who could answer any questions they might have or to receive complaints. Children reported that they appreciated knowing about their rights (although a few thought that “it was a bit boring”). One young boy demonstrated that he had been empowered by the process by taking the rights page home, sticking it to his bed and telling his mother that children had theright to “have a say on stuff that’s got to do with them.” Incidentally, his mother phoned the research team and asked them to explain to her child that this right did not allow him to choose to not have a bath.The Children’s Reference Group stressed that it was important for children to know their rights in research but felt that going through the rights page before each activity was boring and unhelpful. Instead, they suggested that we develop a game where some of the rights were included among other “fake” or “wrong” statements and where children had to decide which were real and which were not. In response to this advice, we developed a series of statements which were printed on to laminated cards, each of which was related somehow to the rights that were included on the rights page. Children were given the cards and were asked to place them under the headings of “completely right,” “completely wrong,” and “kinda right and kinda wrong.” When the children had placed the cards underneath the three headings, they were asked questions about why they chose to put them there, and then for those in the “completely wrong” and “kinda right and kinda wrong” were asked to rewrite them to make them more accurate.This activity was included in a group exercise and proved to be one of the more engaging tools we used. Children were very keen to explore the issues related to the rights and gave insightful explanations as to why they believed the statements were accurate or not. Each group spent time meticulously wording the new statements to ensure that they could not be misinterpreted and so that they conveyed the sentiments behind the right accurately. For example, the statement “Kids should always be asked about stuff to do with their lives” was changed because some of the children thought that this should not be the case “all of the time” and that they “shouldn’t have to talk about the things that you can’t remember.” As such, they changed it to “Kids should always be asked about stuff to do with their lives, but other kids have the right to say no if they don’t want to talk about it.”Consent, assent and the importance of choiceThe issues of consent and assent are contentious within the literature on children’s research. Some writers have argued that consent can be given by parents on behalf of children (with or without their assent) (see, e.g., Mahon, Glendinning, Clark, & Craig, 1996), whereas others argue that children and young people should be approached directly because, ultimately, it is their right to choose whether they participate.In this study we recognized that most parents play an important part in the lives of their children and invited those who were living with their children to support their children’s participation by giving their consent. However, we also provided children the opportunity to choose whether they participated and how they participated in this research. We informed them that their parents had agreed for them to be interviewed but that because it was their stories and their ideas that we would be exploring, they could decide whether they would talk with us. We also informed them that they had a number of choices that they could revisit through the interview process: whether the interview be taped, whether they did art or storytelling activities, whether their artwork could be taken and used in the report, and whether there were things that they did not want to discuss or have discussed in the report. Each child completed two copies of a consent form that asked them to tick a box if they understood their rights in the project and werehappy to participate. Some children did not tick all boxes (i.e., one chose not to give his art-work to the research team), which highlighted the fact that children did consider their options and took advantage of their choices. This was reiterated in children’s feedback regarding interviews: If people didn’t want to do something and you were mean and said that they had to do it, that would be mean, so it was good that you weren’t mean. [The researcher] asked me to draw my house and I didn’t want to (because it is hard
to draw it because of the shape) so I didn’t do that—we just talked about it. That was good. I didn’t have to do anything I didn’t want [to].

Hasil (Bahasa Indonesia) 2:

Berbicara dengan anak-anak tentang hak-hak mereka dalam penelitian
Dengan konseptualisasi dari masa kanak-kanak datang pengakuan kemampuan pengambilan keputusan anak-anak. Memang, inti dari penelitian etika dengan anak-anak adalah pertanyaan tentang kemampuan anak-anak untuk membuat keputusan tentang kehidupan mereka (Bessell, 2006) dan untuk memahami apa hak mereka ketika menyetujui / menyetujui / MENYETUJUI untuk berpartisipasi. Seperti di sejumlah peneliti sosial kontemporer (Bessell, 2006), anak-anak dalam kelompok referensi menekankan bahwa peserta memiliki hak-hak tertentu dalam proses penelitian dan bahwa mereka perlu dijelaskan secara jelas sehingga mereka dapat dipahami dan diberlakukan: "Anak-anak memiliki Harus tahu apa hak mereka punya. Dan Anda harus memastikan mereka mendapatkannya. "Hal ini terbukti menjadi tugas penting bagi tim peneliti, yang menghabiskan banyak waktu merenungkan bagaimana mereka bisa melakukannya paling tepat. Dengan deskripsi terbatas alat dan proses yang ditemukan dalam literatur, tim menghabiskan waktu dengan anak-anak berbicara tentang bagaimana mereka dapat memastikan bahwa diskusi tentang hak mungkin berarti dan bukan hanya sikap token. Seluruh proyek kami terus tercermin pada pengalaman kami dan dimodifikasi pendekatan kami pada sejumlah kesempatan. Sebagai bagian dari paket perekrutan mereka, setiap anak dalam proyek diberi halaman hak yang bernama 12 hak anak dalam penelitian (termasuk hak privasi dan kerahasiaan, untuk nonmaleficence, dan untuk kebaikan; Gambar 3). Halaman memiliki gambar yang menggambarkan setiap hak dan komitmen dari tim dalam kaitannya dengan proses penelitian (yaitu, "Kami tidak akan menyakiti atau menggoda Anda, dan kami akan berdiri untuk Anda jika orang lain melakukan" dan "Jika Anda ingin berhenti bekerja [berbicara] dengan kami Anda dapat setiap saat. Kami tidak akan tahan terhadap Anda "). Pekerja dan orang tua
didorong untuk mendiskusikan halaman hak dengan anak sebelum wawancara atau kelompok lokakarya dan untuk memberitahu mereka tentang komitmen tim untuk memastikan bahwa mereka ditegakkan. Pada wawancara mereka kita kemudian ditinjau kembali masalah hak dan memastikan bahwa anak memahami maknanya. Sebagai contoh, negara-negara yang benar kedua, "Anda memiliki hak untuk berpartisipasi dalam cara yang Anda suka." Ketika menjelaskan hak ini, peneliti membaca pernyataan keluar dan bertanya anak itu ia pikir ini berarti. Jika anak memahami makna, peneliti akan mengakui ini- "Ya, itu benar" -dan menindaklanjuti dengan menghubungkannya dengan pernyataan penjelasan: Di sini dikatakan "Terserah Anda jika Anda terlibat dalam penelitian atau tidak dan bagaimana Anda ingin terlibat. "Jadi, jika kita berbicara tentang keluarga Anda, misalnya, saya mungkin akan meminta Anda jika Anda ingin gambar atau memberitahu atau cerita atau hanya chatting dan Anda dapat memilih salah satu dari ini atau datang dengan gagasan lain sebagai gantinya. Kami kemudian diperiksa untuk memastikan bahwa anak mengerti penjelasan dan bertanya, "Apakah Anda pikir itu ide yang baik?" Atau pertanyaan serupa. Kami kemudian mengingatkan anak-anak pilihan yang mereka miliki untuk setiap kegiatan dan memungkinkan mereka untuk merasa seolah-olah mereka memiliki kontrol atas keterlibatan mereka.
Beberapa dari hak-hak yang lebih sulit untuk menjelaskan daripada yang lain. Misalnya, hak untuk kerahasiaan terbukti menantang. Kami membutuhkan anak-anak untuk memahami bahwa informasi yang mereka berikan akan digunakan untuk membentuk laporan untuk pemerintah dan orang lain untuk membaca tetapi bahwa anak-anak individu tidak akan diidentifikasi. Pada saat yang sama, kita harus memastikan bahwa anak-anak mengerti bahwa jika kita khawatir tentang keselamatan anak atau jika anak diungkapkan informasi yang akan memerlukan tindakan lebih lanjut, kita akan diwajibkan untuk istirahat kepercayaan diri mereka dan menginformasikan orang tua mereka atau agen yang tepat untuk tindakan lebih lanjut. Pernyataan hak dan penjelasannya berubah pada sejumlah kesempatan untuk merefleksikan bagaimana anak-anak memahami hak dan niat kanan. Workshopping lanjut mungkin masih diperlukan untuk lebih merangkum kompleksitas masalah. Anak-anak diundang untuk menjaga halaman hak, yang juga termasuk rincian kontak untuk staf di universitas yang bisa menjawab pertanyaan mereka mungkin memiliki atau menerima keluhan. Anak-anak melaporkan bahwa mereka dihargai mengetahui tentang hak-hak mereka (meskipun beberapa berpikir bahwa "itu agak membosankan"). Salah satu anak laki-laki menunjukkan bahwa ia telah diberdayakan oleh proses dengan mengambil halaman hak rumah, menempel ke tempat tidurnya dan memberitahu ibunya bahwa anak-anak memiliki
hak untuk "memiliki suara pada hal-hal yang harus dilakukan dengan mereka." Kebetulan, ibunya menelepon tim penelitian dan meminta mereka untuk menjelaskan kepada anaknya bahwa hak ini tidak memungkinkan dia untuk memilih untuk tidak memiliki mandi.
Anak Reference Group menekankan bahwa penting bagi anak-anak untuk mengetahui hak-hak mereka dalam penelitian tetapi merasa bahwa akan melalui halaman hak sebelum setiap aktivitas membosankan dan tidak membantu. Sebaliknya, mereka menyarankan bahwa kita mengembangkan permainan di mana beberapa hak yang termasuk di antara "palsu" atau "salah" pernyataan lainnya dan di mana anak-anak harus memutuskan yang nyata dan yang tidak. Dalam menanggapi saran ini, kami mengembangkan serangkaian pernyataan yang dicetak pada kartu laminasi, yang masing-masing terkait entah bagaimana dengan hak-hak yang disertakan pada halaman hak. Anak-anak diberi kartu dan diminta untuk menempatkan mereka di bawah judul "sepenuhnya benar," "benar-benar salah," dan "agak benar dan agak salah." Ketika anak-anak telah menempatkan kartu di bawah tiga judul, mereka pertanyaan yang diajukan tentang mengapa mereka memilih untuk menempatkan mereka di sana, dan kemudian bagi mereka di "sepenuhnya salah" dan "agak benar dan agak salah" diminta untuk menulis ulang mereka untuk membuat mereka lebih akurat. Kegiatan ini termasuk dalam latihan kelompok dan terbukti salah satu alat yang lebih menarik kita gunakan. Anak-anak sangat tertarik untuk mengeksplorasi isu-isu yang berkaitan dengan hak-hak dan memberi penjelasan mendalam mengapa mereka percaya laporan yang akurat atau tidak. Setiap kelompok menghabiskan waktu cermat kata-kata laporan baru untuk memastikan bahwa mereka tidak bisa disalahartikan dan sehingga mereka menyampaikan sentimen belakang kanan akurat. Sebagai contoh, pernyataan "Anak harus selalu bertanya tentang hal-hal yang harus dilakukan dengan kehidupan mereka" telah berubah karena beberapa anak berpikir bahwa ini tidak boleh terjadi "sepanjang waktu" dan bahwa mereka "tidak harus berbicara tentang hal-hal yang Anda tidak ingat. "Dengan demikian, mereka berubah ke" Anak harus selalu bertanya tentang hal-hal yang harus dilakukan dengan kehidupan mereka, tetapi anak-anak lain memiliki hak untuk mengatakan tidak jika mereka tidak ingin berbicara tentang itu. "Consent, persetujuan dan pentingnya pilihan Isu persetujuan dan persetujuan yang diperdebatkan dalam literatur penelitian anak-anak. Beberapa penulis berpendapat bahwa persetujuan dapat diberikan oleh orang tua atas nama anak-anak (dengan atau tanpa persetujuan mereka) (lihat, misalnya, Mahon, Glendinning, Clark, & Craig, 1996), sedangkan yang lain berpendapat bahwa anak-anak dan orang muda harus didekati langsung karena, pada akhirnya, itu adalah hak mereka untuk memilih apakah mereka berpartisipasi. Dalam penelitian ini kami mengakui bahwa sebagian besar orang tua memainkan bagian penting dalam kehidupan anak-anak mereka dan mengundang mereka yang hidup dengan anak-anak mereka untuk mendukung partisipasi anak-anak mereka dengan memberikan mereka persetujuan. Namun, kami juga memberikan kesempatan pada anak untuk memilih apakah mereka berpartisipasi dan bagaimana mereka berpartisipasi dalam penelitian ini. Kami memberitahu mereka bahwa orang tua mereka telah sepakat untuk mereka untuk diwawancarai tapi itu karena itu cerita mereka dan ide-ide mereka bahwa kita akan mengeksplorasi, mereka bisa memutuskan apakah mereka akan berbicara dengan kami. Kami juga memberitahu mereka bahwa mereka memiliki sejumlah pilihan yang mereka bisa kembali melalui proses wawancara: apakah wawancara direkam, apakah mereka melakukan kegiatan seni atau mendongeng, apakah karya seni mereka bisa diambil dan digunakan dalam laporan, dan apakah ada hal-hal yang mereka tidak ingin membahas atau telah dibahas dalam laporan. Setiap anak menyelesaikan dua salinan dari formulir persetujuan yang meminta mereka untuk mencentang kotak jika mereka mengerti hak-hak mereka dalam proyek dan bahagia untuk berpartisipasi. Beberapa anak tidak mencentang semua kotak (yaitu, satu memilih untuk tidak memberikan nya karya seni untuk tim peneliti), yang menyoroti fakta bahwa anak-anak melakukan mempertimbangkan pilihan mereka dan mengambil keuntungan dari pilihan mereka. Hal ini ditegaskan kembali dalam umpan balik mengenai wawancara anak-anak: Jika orang tidak ingin melakukan sesuatu dan Anda berarti dan mengatakan bahwa mereka harus melakukannya, itu akan menjadi berarti, jadi itu baik bahwa Anda tidak berarti. [Peneliti] meminta saya untuk menggambar rumah saya dan saya tidak ingin (karena sulit untuk menarik karena bentuk) jadi saya tidak melakukan itu-kita hanya berbicara tentang hal itu. Itu bagus. Saya tidak perlu melakukan apa pun saya tidak ingin [untuk].