Understanding the Views of Children with Profound and Multiple Learning Difficulties for Person-Centred Planning
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| Title: | Understanding the Views of Children with Profound and Multiple Learning Difficulties for Person-Centred Planning |
|---|---|
| Language: | English |
| Authors: | Farmer, Kate E. (ORCID |
| Source: | British Journal of Learning Disabilities. 2023 51(4):499-508. |
| Availability: | Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us |
| Peer Reviewed: | Y |
| Page Count: | 10 |
| Publication Date: | 2023 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Childrens Attitudes, Participative Decision Making, Severe Intellectual Disability, Multiple Disabilities, Adults, Role, Students with Disabilities, Special Schools, Student Attitudes, School Personnel, Parents, Student Centered Learning, Planning, Self Determination, Interpersonal Communication |
| DOI: | 10.1111/bld.12525 |
| ISSN: | 1354-4187 1468-3156 |
| Abstract: | Background: All children have the right to express their views about matters affecting them and participate in decision-making for their future irrespective of their intellectual ability. This study explores the adult role in understanding the views of children with profound and multiple learning difficulties who are not using a formal communication system and require adults to speak on their behalf. Methods: The study employs a qualitative multiple case study design involving three children with profound and multiple learning difficulties attending one special school. Social constructivist grounded theory approaches inform data gathering and analysis. Eight interviews are conducted with parents and professionals to explore how they understand the children's views and how this understanding informs person-centred planning, combined with observations of the children in school and observations of their person-centred planning meetings. Findings: Adult participants consider the children in the study to have agency and ability to affect the world around them. They believe the children can express their likes, dislikes and what they want but they think the children would have difficulty communicating their views about their health, medical needs and disability. They describe a range of observable actions made by a child to which they give meaning when interpreting the child's views. The actions a person takes as a child's communication partner can enable the child to develop and communicate their views. A process of observation and comparison allows adults to explore different interpretations of a child's views. Perspectives offered by professionals from different fields enable a child's views to be understood in different ways. Conclusions: Adults develop their understanding of the children's views over time in relational and social contexts. Different interpretations of a child's communication are considered when adults collaborate, leading to socially constructed understandings of a child's views. Adults infer the meaning of a child's views about what is important to them for the future from their understanding of the child's views in the present, which informs person-centred planning. |
| Abstractor: | As Provided |
| Entry Date: | 2023 |
| Accession Number: | EJ1398567 |
| Database: | ERIC |
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| FullText | Links: – Type: pdflink Url: https://content.ebscohost.com/cds/retrieve?content=AQICAHj0k_4E0hTGH8RJwT4gCJyBsGNe_WN95AvKlDbXJGqwxwEC4dSgmGHddcIitJbzI7xLAAAA4zCB4AYJKoZIhvcNAQcGoIHSMIHPAgEAMIHJBgkqhkiG9w0BBwEwHgYJYIZIAWUDBAEuMBEEDPgJIbzpXH7nO4PHyAIBEICBm3aPGxafqKUdX2u-85UaRjWUry2OPXuyiU5cADJUlEZ_DbaPUaV9r7Y_xHXudQN2SIpdVk04oR5bLAK9wxy8o_BfffbaZb-yGTmh3ymfld_uL_oWkOzvxfth8XWs90UzrQ7fWr1UzwZxGp389CTmjvEyAKv1KDOlF9RL06Y5zz5_CPYwJimHW4Jc8HgKdVdWO7ny46q_2VL65yEr Text: Availability: 1 Value: <anid>AN0173368793;f0401dec.23;2023Nov03.05:40;v2.2.500</anid> <title id="AN0173368793-1">Understanding the views of children with profound and multiple learning difficulties for person‐centred planning </title> <p>Background: All children have the right to express their views about matters affecting them and participate in decision‐making for their future irrespective of their intellectual ability. This study explores the adult role in understanding the views of children with profound and multiple learning difficulties who are not using a formal communication system and require adults to speak on their behalf. Methods: The study employs a qualitative multiple case study design involving three children with profound and multiple learning difficulties attending one special school. Social constructivist grounded theory approaches inform data gathering and analysis. Eight interviews are conducted with parents and professionals to explore how they understand the children's views and how this understanding informs person‐centred planning, combined with observations of the children in school and observations of their person‐centred planning meetings. Findings: Adult participants consider the children in the study to have agency and ability to affect the world around them. They believe the children can express their likes, dislikes and what they want but they think the children would have difficulty communicating their views about their health, medical needs and disability. They describe a range of observable actions made by a child to which they give meaning when interpreting the child's views. The actions a person takes as a child's communication partner can enable the child to develop and communicate their views. A process of observation and comparison allows adults to explore different interpretations of a child's views. Perspectives offered by professionals from different fields enable a child's views to be understood in different ways. Conclusions: Adults develop their understanding of the children's views over time in relational and social contexts. Different interpretations of a child's communication are considered when adults collaborate, leading to socially constructed understandings of a child's views. Adults infer the meaning of a child's views about what is important to them for the future from their understanding of the child's views in the present, which informs person‐centred planning.</p> <p>Accessible summary: All children have the right to take part in decision‐making for their future. This includes children with profound and multiple learning difficulties who do not use speech, pictures or signs to communicate and need adults to speak on their behalf.This paper describes eight interviews with parents and people who work with children with profound and multiple learning difficulties to ask how they find out about the children's views. We observed the children in school to check what the adults told us. We also observed a person‐centred planning meeting for each child to see how the adults talk to each other about the child's views and make decisions in a group.The adults told us that watching the children's responses carefully over time in different situations helps them to find out about the children's likes, dislikes and what they want. The adults find it helpful to talk to each other about different possibilities for what the children might be telling them. This helps them to think about what the children might want to do in the future.</p> <p>Keywords: children's views; communication; person‐centred; profound and multiple learning difficulties; special educational needs</p> <hd id="AN0173368793-2">INTRODUCTION</hd> <p>All children have the right to express their views about matters affecting them (United Nations, [<reflink idref="bib21" id="ref1">21</reflink>]) and participate in decision‐making for their future (Children and Families Act 2014) irrespective of their intellectual ability. The Salamanca Statement and Framework for Action ([<reflink idref="bib20" id="ref2">20</reflink>]) referred specifically to the right of people with a disability to express their wishes for their education. The Special Educational Needs and Disabilities (SEND) Code of Practice (DfE &amp; DoH, [<reflink idref="bib7" id="ref3">7</reflink>]) recommends a person‐centred approach is taken to explore the views of children with special educational needs and disabilities and facilitate their participation in decision‐making. The Department of Health published advice in 2010 on the use of person‐centred planning (PCP) to plan transition from school to employment for young people with disabilities (DoH, [<reflink idref="bib8" id="ref4">8</reflink>]). The use of PCP more broadly in schools for children and young people with SEND of all ages is a relatively new practice.</p> <p>Person‐centred planning is not a prescriptive technique, but a term used to describe a range of approaches with shared characteristics (Ratti et al., [<reflink idref="bib16" id="ref5">16</reflink>]). Commonality among descriptions of PCP lies within the consideration given to the person's views, how these views inform planning for their future, and the involvement in the planning process of significant others in the person's life. White and Rae ([<reflink idref="bib25" id="ref6">25</reflink>]) propose that PCP should be adapted to meet individual needs. The Department of Health's PCP guidance (DoH, [<reflink idref="bib8" id="ref7">8</reflink>]) recommends schools consider a child's communication needs if they are unable to use spoken words. Children with profound and multiple learning difficulties have the most complex learning and communication needs, often using alternative forms of communication to speech and being dependent upon others to interpret their communicative intent (Bellamy et al., [<reflink idref="bib1" id="ref8">1</reflink>]). This raises the question of how PCP should be adapted to ensure these children can fulfil their right to express their views.</p> <p>The first author's interest in the research topic arose from her professional practice experience as an educational psychologist working with a special school for children with learning difficulties aged 2–19 years where this study takes place. The school uses a person‐centred approach reflecting the description given in the SEND Code of Practice (DfE &amp; DoH, [<reflink idref="bib7" id="ref9">7</reflink>]). The children participating in the study are described by professionals as having profound and multiple learning difficulties and are not yet using a formal communication system such as speech, sign, symbols or other augmentative communication aids.</p> <hd id="AN0173368793-3">The conceptual meaning of a 'view'</hd> <p>Ware ([<reflink idref="bib23" id="ref10">23</reflink>]) and Harding ([<reflink idref="bib11" id="ref11">11</reflink>]) question whether the concept of a having a 'view' can be attributed to people with profound and multiple learning difficulties. They conceptualise a viewpoint as different to a reaction or emotional response, with the former requiring the cognitive skills of memory, comparison, reasoning and hypothetical thinking that people with profound and multiple learning difficulties may not possess. A perceived lack of cognitive ability can become a barrier to eliciting a child's views (Sharma, [<reflink idref="bib17" id="ref12">17</reflink>]). Suggestions in the literature that children with profound and multiple learning difficulties may not have the capacity to form a 'view' could deter professionals from attempting to engage with these children and explore what might be possible (Harding, [<reflink idref="bib11" id="ref13">11</reflink>]).</p> <p>Ware ([<reflink idref="bib23" id="ref14">23</reflink>]) proposes that expressing a preference through a reaction is a significant first stage towards a person being able to make decisions for themselves. Wright ([<reflink idref="bib27" id="ref15">27</reflink>]) takes the position that all children are authorities on their lived experiences when exploring the extent to which three children described as having multiple and complex needs can express their satisfaction or dissatisfaction with their school activities. Bellamy et al. ([<reflink idref="bib1" id="ref16">1</reflink>]) found that families and professionals favour enabling definitions of profound and multiple learning difficulties that focus upon identifying the circumstances a person needs to engage in activities and their community. The current study takes a strengths‐based approach by considering the circumstances that enable a child's views to be explored and how engaging adults in thinking about a child's views can benefit the child.</p> <hd id="AN0173368793-4">Exploring the views of children with profound and multiple learning difficulties</hd> <p>There is limited research exploring approaches to gathering the views of children with profound and multiple learning difficulties (Greathead et al., [<reflink idref="bib10" id="ref17">10</reflink>]; Harding, [<reflink idref="bib11" id="ref18">11</reflink>]). Studies that have taken place highlight the need to consider adult–child communicative relationships when adults are required to infer meaning and interpret the communicative intent of a child who cannot speak for themselves. Adults who are familiar with a child may have the highest degree of emotional involvement affecting how the child's communication and views are interpreted (Ware, [<reflink idref="bib23" id="ref19">23</reflink>]) with potential for bias (Sharma, [<reflink idref="bib17" id="ref20">17</reflink>]; Wright, [<reflink idref="bib27" id="ref21">27</reflink>]). Adult behaviour may shape children's responses when exploring their views using interactional approaches (Porter, [<reflink idref="bib15" id="ref22">15</reflink>]). Greathead et al. ([<reflink idref="bib10" id="ref23">10</reflink>]) consider communication as a two‐way interaction, observing how a child's communicative acts <emph>and</emph> an adult's behaviours may affect how children with learning difficulties communicate their views about school activities. They acknowledge a limitation of their study being that the adults' experience of supporting a child's communication is not explored, which the current research aims to address.</p> <p>Taylor ([<reflink idref="bib18" id="ref24">18</reflink>]) suggests that approaches to exploring a child's views that require an adult to speak on a child's behalf should be seen as reflecting the adult's opinions unless the view is triangulated with other sources, for example, school records. Pearlman and Michaels ([<reflink idref="bib14" id="ref25">14</reflink>]) found significant differences between parents' and professionals' interpretations of a child's communication when exploring approaches to eliciting the views of children and young people with profound and multiple learning difficulties for their Education, Health, and Care Plan (EHCP). They caution that interpretations should not be made from a single observation of a child, as this may reflect the child's response in the moment and not represent a reliable view over time. Harding ([<reflink idref="bib11" id="ref26">11</reflink>]) proposes a process of observation, collaboration between those close to a child, and triangulation of information to ascertain, as far as possible, a reliable and valid view of how the child might think or feel in a given situation. The current study adopts this approach.</p> <hd id="AN0173368793-5">Research aims</hd> <p>This study focuses on the adult role in understanding the views of children with profound and multiple learning difficulties who are not using a formal communication system and require adults to speak on their behalf. The research explores how adults construct meaning when seeking to understand a child's views and how engaging adults in thinking about a child's views can facilitate the child's participation in decision‐making for their future. Two research questions are addressed:</p> <p></p> <ulist> <item> 1. How do parents and professionals describe their experience of understanding the views of children with profound and multiple learning difficulties?</item> <p></p> <item> 2. How can parents' and professionals' understanding of the views of a child with profound and multiple learning difficulties inform person‐centred planning?</item> </ulist> <hd id="AN0173368793-6">METHODOLOGY</hd> <p>This study considers exploring the views of children with profound and multiple learning difficulties as a social process. Language, communication and social interaction provide the context within which PCP takes place and a child's views are understood. The study is underpinned by a social constructionist epistemology based upon the assumption that versions of reality are constructed by people through their use of language (Willig, [<reflink idref="bib26" id="ref27">26</reflink>]) and that knowledge and meaning is created collectively in social groups (Charmaz, [<reflink idref="bib5" id="ref28">5</reflink>]). Each group member holds a subjective viewpoint that has been influenced by their individual experiences, leading to multiple realities influencing the creation of shared meanings by the group. This study aims to explore the individual subjective viewpoints that contribute to understanding the views of a child with profound and multiple learning difficulties within a PCP process.</p> <p>Grounded theory (GT) is a qualitative method that explores the meanings participants give to their experiences and the wider context within which those experiences are located (Corbin &amp; Strauss, [<reflink idref="bib6" id="ref29">6</reflink>]). The current study uses Charmaz ([<reflink idref="bib5" id="ref30">5</reflink>]) and Thornberg's ([<reflink idref="bib19" id="ref31">19</reflink>]) versions of GT which emphasise researcher reflexivity. Thornberg's 'data sensitising principles' guide practitioner‐researchers to take a critical view of their pre‐existing knowledge and beliefs about theories and literature relevant to their research acquired through their professional practice. This approach is highly relevant to the current study given the first author's professional role.</p> <p>Ethical approval for the study was granted by the University College London (UCL) Research Ethics Committee. It is accepted that information about the study cannot be presented in a way that would enhance the understanding of the children due to their severe intellectual impairment. Written information about the study was provided for the person legally responsible for the child who gave written consent for the child to participate in the study (BPS, [<reflink idref="bib3" id="ref32">3</reflink>]). The principle of monitoring assent was applied (BPS, [<reflink idref="bib3" id="ref33">3</reflink>]) by asking the adult participants to describe how each child would usually communicate that they do not want to do something or that they want an activity to stop. The observation phase of data gathering ceased if a child showed behaviours suggesting they wished to withdraw from an activity.</p> <hd id="AN0173368793-7">Participants</hd> <p>Three case studies were undertaken, each comprising one child, their mother, and two professionals, for example a teacher and a play worker. A purposive sampling approach was used to identify potential participants through discussion with school staff. Children with profound and multiple learning difficulties who are not using a formal communication system were selected from the early years and UK primary school age phases of 3–11 years, as existing research has focussed mostly upon children of UK secondary school age (e.g., Greathead et al., [<reflink idref="bib10" id="ref34">10</reflink>]; Wright, [<reflink idref="bib27" id="ref35">27</reflink>]). Children were then selected from this sample whose parents were considered likely to feel comfortable thinking and talking about their child's future and who had not worked with the first author previously in her professional role. This resulted in the selection of two children aged 11 and one child aged 4. Professionals were then selected who knew each child well and who were available and willing to participate. One parent was unable to take part in the interview stage of data gathering due to unforeseen circumstances.</p> <hd id="AN0173368793-8">Researcher reflexivity</hd> <p>Writing memos from the earliest stage of the study enabled Thornberg's ([<reflink idref="bib19" id="ref36">19</reflink>]) data‐sensitising principles to be translated into practice. The first author wrote memos to capture her pre‐existing knowledge and beliefs about the research topic before data gathering, with the aim of enhancing theoretical sensitivity for noticing concepts during data analysis while remaining open to discovering new possibilities. Memos were written, refined and expanded to document the first author's developing thoughts about the meaning of codes during analysis and how pre‐existing concepts and themes proposed by other researchers could be elaborated upon or challenged as a result of new ideas discovered within the data. A research diary was written to record the authors' thoughts about methodological and ethical issues encountered during the research.</p> <hd id="AN0173368793-9">Data gathering</hd> <p></p> <hd id="AN0173368793-10">Phase 1</hd> <p>A face‐to‐face semistructured interview was conducted individually with adult participants using a flexible interview schedule to explore their understanding of the child's views and their experience of making sense of the child's perspective and involving the child in decision‐making for their future. Interviews lasted 30 to 60 minutes and were audio‐recorded and transcribed by the first author.</p> <hd id="AN0173368793-11">Phase 2</hd> <p>Observations of the children in school took place to check the validity of the information gathered during interviews about the adults' understanding of the children's views and how they communicate. Analysis of interview data identified activities to observe that adults described as eliciting a response from the child and indicating a possible preference. Observations were non‐participatory and lasted 30–70 min depending upon the activity and the child's engagement and assent. A series of three observations of the children aged 11 were planned as some activities occurred on different days, for example, music and cooking. One longer observation of the child aged 4 took place as activities were similar each nursery session. Handwritten fieldnotes were used to record observations of the nature of the activity and how the child responded to the activity and to the people around them.</p> <hd id="AN0173368793-12">Phase 3</hd> <p>A PCP meeting took place for each child. Each meeting was attended by between five and seven adults. All parents attended their child's meeting; however, not all professionals who had participated in phase 1 of data gathering could attend due to unforeseen circumstances. Additional adults took part in the meetings, for example, an occupational therapist and a social worker, as meetings were not undertaken exclusively for the research. The primary purpose for each meeting was to review the child's EHCP.</p> <p>At the start of each meeting, a focus group discussion was facilitated by the first author for 20 minutes to seek participant feedback on the analysis of data from phases 1 and 2. Participants were provided with a written summary of the themes arising from the analysis and were asked to discuss which themes they thought were most important to understanding a child's views and any themes with which they disagreed. Handwritten fieldnotes were made of the themes discussed.</p> <p>After the focus group discussion, the headteacher facilitated the PCP meeting. One week before the meeting, the first author helped teachers to select video clips, photographs, and captions to create a presentation to illustrate the information gathered about the adults' understanding of the child's views during interviews and observations. Presentations were watched at the start of the PCP meeting and the discussion that followed was observed by the first author. Handwritten fieldnotes were made with attention paid to how the adults discussed the child's reactions, emotions, likes, dislikes and preferences and how this informed their decision‐making.</p> <hd id="AN0173368793-13">Analysis</hd> <p>Data gathering and analysis took place simultaneously using a constant comparison process (see Charmaz, [<reflink idref="bib5" id="ref37">5</reflink>]). This enabled new concepts and ideas revealed at the start of the study to be explored during subsequent data‐gathering activities. Initial coding of interview transcripts was undertaken whereby text segments containing an event, action, thought or feeling described by a participant were assigned a word or phrase to represent their meaning. Fieldnote segments from observations and PCP meetings were assigned to codes if the events and ideas they described shared a similar meaning. A coding sample was peer reviewed to check inter‐rater agreement.</p> <p>Focused coding began after the first three interviews. Initial codes were arranged into groups sharing a similar concept or theme. Focused codes were adjusted and developed as new initial codes were discovered and included within the analysis. Inconsistencies and exceptions within the data were actively sought and 'negative case examples' were identified in the form of codes that present an opposing idea and offer challenge to the analysis. Focus group discussions in phase 3 of data gathering revealed no themes from the analysis with which participants disagreed. Themes that sparked discussion and appeared more significant to participants will be highlighted in the findings section. Theoretical coding took place after focused coding, drawing upon the authors' knowledge of psychological concepts and theories to explain relationships between the focused codes. A fuller discussion of the theoretical perspectives informing this stage of the analysis can be found in the first author's thesis (Farmer, [<reflink idref="bib9" id="ref38">9</reflink>]).</p> <hd id="AN0173368793-14">FINDINGS</hd> <p>The findings are presented in relation to six themes arising from the focused codes relating to how a child communicates their views and how these views are understood by adults to inform decision‐making.</p> <hd id="AN0173368793-15">Communication of views</hd> <p></p> <hd id="AN0173368793-16">Communication partners</hd> <p>Participants describe a range of observable actions made by a child to which they give meaning to interpret the child's views. Listening to the child's vocalisations and observing the child's movements is referred to most often as well as noticing the child's eye gaze and facial expression and observing the child's interaction with people, objects, events and stimuli in their environment. Participants talk of noticing 'every little response' from a child that may not be attended to typically.</p> <p>We've got one young lady who uses her little finger like that [demonstrates] to say 'yes' and it wasn't until her dad mentioned it a few years ago that everyone was like 'oh wow' ... and now you know to look for that.</p> <p>Participants' responses highlight the importance of the actions a person takes as a child's communication partner to create stimuli and events that enable the child to develop and communicate their views. A broad range of experiences is provided to afford the child opportunities to explore what their preferences might be so that they can make informed decisions having experienced the options available. Children's preferences are seen to change in the moment and over time once they have experienced an activity.</p> <hd id="AN0173368793-17">Children's agency</hd> <p>All participants were certain about the children's ability to express their likes, dislikes and what they want. The children are seen as having agency and ability to affect the world around them. Participants suggest that the children can communicate a range of emotions including happiness, anger, frustration, excitement, fear and boredom.</p> <p>She's the kinda person that if she doesn't like something you will know ... she's not one just to go along with things for the sake of it ... if she's upset, there's a distinct sound and if she's happy there's a different sound ... I don't think she's capable of hiding her emotions.</p> <p>A child's mood is considered to affect their engagement with the world around them and how their views are interpreted. A difference was noted in one child's engagement in activities between the first and second observations. The classroom staff explained that he had been trampolining immediately before the second observation. They considered his lack of engagement to indicate his want to withdraw from activities due to feeling tired after trampolining rather than construing his actions as a communication of his views about his current activity.</p> <p>Participants' use of language conveys optimism and positivity when talking about the children's ability and potential. They suggest that, as well as seeing the children as having agency and autonomy, they consider them to be efficacious and believe development and change are possible.</p> <p>She knows a lot of things, so we just have to not assume ... we try and integrate her into whatever we're doing as much as possible, even though she's not talking, she still gets it.</p> <p>Some participants suggest that using sensory cues and repeating activities over time can help a child to anticipant and remember, which informs their decision‐making.</p> <p>She has like a snack ... every day ... and she obviously knows them, she hears the bag rustling, she looks, so I think ... that sort of thing she remembers and that's probably very repetitive because she has it every day.</p> <hd id="AN0173368793-18">Children's health and wellbeing</hd> <p>Participants thought the children would have difficulty communicating their views about their health, medical needs and disability. This theme from the analysis sparked discussion during focus groups and appeared important to participants.</p> <p>It's hard ... when he's unwell, so unless he's got a temperature or he's sneezing its quite difficult, sometimes if he goes quiet it might be because a seizure's coming ... but all the time you're trying to second guess ... it's quite hard to work out how far he can see ... I think the vision really is the thing that is a question mark because you can't really measure it.</p> <p>Some participants talk about making decisions on behalf of a child to keep the child healthy and safe, suggesting the children may have less agency in this aspect of their life. Adults talked during one meeting about the importance of ongoing physiotherapy sessions for a child who is prone to weight gain due to his medical condition, even though they think physiotherapy is something he does not enjoy. Participants suggest a child can be afforded agency by communicating their views of using equipment intended to help them overcome a barrier presented by their disability, for example, a physiotherapist spoke during one meeting about observing a child's response to different walkers to explore her views about which one assists her best.</p> <hd id="AN0173368793-19">Interpretation of views by adults</hd> <p></p> <hd id="AN0173368793-20">Adults' agency</hd> <p>Adult participants view themselves as having agency and ability to take actions to help them to understand what a child's communication might mean, such as observing the child, observing their own interactions with the child, and creating experiences and opportunities for the child to develop and express their views. Their responses suggest that they openly acknowledge their uncertainty when interpreting a child's views and are willing to question their judgement.</p> <p>I think it was difficult initially, we didn't have any experience of having a special needs child ... but as time's gone on ... I think it's gotten easier ... I think we've learnt by experience to kind of just observe and see what it is that she just [wants].</p> <p>A negative case example was discovered in data reflecting participants' thoughts about the barriers to a child developing <emph>and</emph> communicating their views when they are feeling less efficacious as a child's communication partner. Participants talk about how a child's medical needs or disability may affect access to activities, limiting the breadth of their experiences and their opportunities to develop their views about the world around them. One professional reflected upon a child's need for physical comfort and safety being met first and foremost otherwise their communication could be indicative of an unmet need rather than being an expression of their views.</p> <p>If they're not happy, in that they're not safe, they're not healthy, their views are going to be skewed ... you're not going to try and ask a child their views about the future while they're crying or while they're in pain, so it's kind of meeting those physical, emotional needs first.</p> <hd id="AN0173368793-21">Making meaning in social contexts</hd> <p>Participants describe using their own words to reflect aloud for other people and for the child what they think the child is trying to communicate. A sense of empathy and an appreciation of a child's lived experience is conveyed in the extract below in which one professional draws upon her own emotional responses to make sense of what a child is communicating about his experience of having seizures.</p> <p>He's still young and it must be scary to not necessarily know what's happening, but the feeling of not feeling right must be quite scary and I &lt;think he would think&gt; 'I'd like it if my mum was here'.</p> <p>Organisational ethos and culture are referred to by participants when talking about how an organisation can foster supportive and collaborative relationships within which the meaning of a child's communication and views can be explored.</p> <p>I think that it is always difficult when a child doesn't speak to communicate with them and a lot of support workers struggle ... I can imagine that would be quite sad for the support worker ... I think that's probably one of the biggest positives that [our organisation] is quite fluid with communication, we try and make sure everybody feels involved.</p> <p>Alternative interpretations of children's views were discussed during PCP meetings. Participants compared their observations of how a child might respond differently to different activities and in different environments as well as noticing when a child responds differently to the same activity or environment but at different times. Different responses made by one child when changing his clothes were compared by adults during his PCP meeting. They wondered whether he resists changing his clothes because he dislikes the physical sensation. However, drawing comparisons to changing his clothes for swimming led to an alternative interpretation whereby his responses were considered as a communication of his views about the activity happening next rather than reflecting his views about changing his clothes.</p> <p>Perspectives offered by professionals from different fields were found to enable a child's communication and views to be understood in different ways. An occupational therapist, for example, explained during one meeting how adults' observations of a child putting her hands in her mouth may reflect her sensory need for mouthing rather than being a communication of her disinterest in an activity, as first thought by parents and school staff. One parent reported that engaging in an online community helped her to understand her child by having conversations with other parents of children with the same medical condition. Participants also talked about how a child's relationships with other children are different to their relationships with adults, with one participant suggesting that siblings may be able to offer a valuable perspective upon the interpretation of a child's views.</p> <p>One professional questioned whether her experience of adults discussing what a child enjoys or finds challenging is an authentic representation of the child's views.</p> <p>A lot of it is adults' interpretation or what adults want for that child, what they want for their future, what they want for them to be happy and healthy and safe ... there's difficulty in accurately finding out exactly what the child wants ... things they enjoy, things they find more challenging.</p> <p>This finding challenged the analysis. When seeking participant feedback on the analysis, 'the meaning of a view' was presented as a theme to invite further consideration by participants. The discussion that took place did not focus specifically upon the conceptual meaning of a 'view' but explored the conceptual meaning of 'future' in relation to a child's views. Participants suggest that gathering a child's views should not be undertaken as a one‐off activity and they describe 'building a picture over time'.</p> <p>The longer you've known the children the easier it is, obviously when they first start and you're seeing how they develop ... it's quite difficult to work out ... say with Edward, we've known him for a long time now, it's quite easy to kind of work [him] out.</p> <hd id="AN0173368793-22">Planning and decision‐making</hd> <p>Participants talked about planning for a child's future being day‐by‐day. Different reasons for this construction of future are given by professionals and parents. Professionals spoke positively about shorter term planning creating opportunity for a child to change their mind about what they want to do, affording the child agency and autonomy. Parents' responses reflect uncertainty as to whether a child will be able to express a view about what they want to do in the future, although they still consider the child's views when making decisions on their behalf.</p> <p>I can't envisage how he would be able to decide, like once he finishes [school] at 19 ... it will be choices that I will have to make for him, but just knowing him, knowing his likes and dislikes ... what we tend to do with him is everything that he likes, I wouldn't send him somewhere [he doesn't like].</p> <p>All PCP meetings provide examples of how adults' understanding of a child's views affects decision‐making for the child. Adults discussed as a group the observations they had made of the child and what they subsequently consider to be important to the child, which informed their thinking about what the child might want to do in the future. This approach enabled adults to view the child as autonomous and afford the child agency in decision‐making about matters affecting them.</p> <p>During Rebecca's meeting, participants talked about how she is increasingly 'letting go' when walking. This had been observed by different people in different contexts and was interpreted by participants as an aspiration expressed by Rebecca to walk independently. This resulted in a plan being made to increase opportunities for her to practise her physical skills. Participants also spoke about how Rebecca's friendships with peers seem more important to her now than her relationships with adults. This had been observed at home by parents noticing her showing greater interest in family friend's children. Classroom staff had also observed Rebecca paying attention to her classmates first when arriving at school before greeting adults. A discussion followed about this being age appropriate and plans were made for ways in which Rebecca can have more opportunities to spend time independently and safely with peers, as would be expected for a child entering their pre‐teen years. A similar discussion took place during Edward's meeting in which his parent spoke about noticing his enjoyment of social media and music videos with his cousins.</p> <p>During Edward's meeting, participants shared their observations of Edward enjoying movement, such as a trip to a theme park, which was interpreted by participants as a preference expressed by Edward for physical activities. A discussion followed about increasing his access to physical equipment so that he can do more of what he enjoys during his leisure time. Participants also discussed Edward's reactions at mealtimes, particularly to food that he does not want to eat. They considered choosing food as important to and for Edward, which generated further discussion about using his interest in exploring tactile objects to trial a bespoke communication system for making food choices. Mealtimes were also a focus for discussion during Amelia's meeting, with participants sharing their observations of her actions at mealtimes which they interpreted as her wanting greater independence. Amelia's enjoyment of social activities with peers was discussed too, which led to a plan being made for her to eat in a group with her peers to make mealtimes a social event rather than an activity undertaken with an adult.</p> <hd id="AN0173368793-23">DISCUSSION</hd> <p>The findings are discussed in relation to the research questions. Ways in which the findings elaborate upon ideas from the literature are highlighted and practice implications are considered.</p> <hd id="AN0173368793-24">Research question 1</hd> <p></p> <hd id="AN0173368793-25">The conceptual meaning of a 'view'</hd> <p>Adults participating in this study express certainty about the children's ability to communicate their likes, dislikes, wants and feelings during their everyday activities. The children are seen by adults as having agency and autonomy and are considered able to affect the world around them. Adults believe a child's emotional state should not necessarily be construed as the child's view of an activity, suggesting a distinction can be made between a child's emotional response and viewpoint, as Harding ([<reflink idref="bib11" id="ref39">11</reflink>]) recommends.</p> <p>Adults suggest that repeating activities over time and using sensory cues may improve a child's ability to anticipate and remember. This shifts consideration of cognitive ability as a barrier to eliciting a child's views (Sharma, [<reflink idref="bib17" id="ref40">17</reflink>]) towards actions adults can take to support a child's development of skills associated with having a view, akin to Vygotsky's ([<reflink idref="bib22" id="ref41">22</reflink>]) social constructivist theories of learning which associate children's functioning with adult actions. Kaniel and Feuerstein ([<reflink idref="bib13" id="ref42">13</reflink>]) propose a <emph>Mediated Learning Experience (MLE)</emph> model of learning for children with learning difficulties that considers cognitive skills as modifiable within a relational context between adult and child. This position is supported by adults' perceptions of the children in the study as efficacious and their belief that development and change is possible despite the children's significant learning difficulties. The findings suggest the importance of adults creating opportunities for children to develop the communication and cognitive skills associated with forming and expressing a view, for example, anticipating and remembering, and regularly experiencing the effect they can have on the world around them when their views are acted upon by adults.</p> <hd id="AN0173368793-26">Relational and social contexts</hd> <p>Relationships are a prominent theme within the literature in terms of the adult‐child communicative relationship (see Greathead et al., [<reflink idref="bib10" id="ref43">10</reflink>]; Porter, [<reflink idref="bib15" id="ref44">15</reflink>]) and the collaborative relationship between the adults supporting the child (see Harding, [<reflink idref="bib11" id="ref45">11</reflink>]). Participants in this study describe an adult–child communicative relationship in which they attend to and give meaning to a range of observable actions to interpret a child's views. Greathead et al. ([<reflink idref="bib10" id="ref46">10</reflink>]) propose that adults may modify activities to increase opportunities for a child to communicate. The current study elaborates upon this position by highlighting the importance of adults offering a broad range of experiences, attempting to minimise barriers to a child accessing opportunities to develop their views, and allowing time for a child to explore different options so that they can develop an informed view.</p> <p>The current study expands upon the idea that organisational ethos and culture can affect a child's expression of views (see Porter, [<reflink idref="bib15" id="ref47">15</reflink>]; Ware, [<reflink idref="bib23" id="ref48">23</reflink>]; Wright, [<reflink idref="bib27" id="ref49">27</reflink>]). While the literature focusses upon the value an organisation places upon seeking a child's views, participants describe how organisational contexts can foster collaborative relationships between adults that enable them to develop their knowledge and understanding of a child's views through their interactions with others. Participants openly acknowledge their uncertainty when inferring the meaning of a child's views and are willing to question their judgement and consider alternative interpretations. The findings suggest that organisations should prioritise developing the adults' skills as the children's communication partners, for example, through professional development activities and reflective practice approaches that empower adults to question their judgement and revise their thinking about a child's views by considering new information.</p> <p>The findings demonstrate the value of drawing upon perspectives from different professional fields to enable a child's communication to be understood in different ways. Children's relationships with their siblings and friends also featured during all PCP meetings and focus group discussions. Brewster ([<reflink idref="bib2" id="ref50">2</reflink>]) considered the role of peers in creating communication systems that ensure children with learning difficulties have opportunity to express their views about matters considered relevant by their peer group. The findings of the current study support further investigation of the role siblings and peers could play in exploring the views of children with profound and multiple learning difficulties.</p> <hd id="AN0173368793-27">Research question 2</hd> <p></p> <hd id="AN0173368793-28">The conceptual meaning of 'future'</hd> <p>A social constructionist perspective recognises use of language and co‐construction of shared meanings as important. While discussion within the literature focusses upon the conceptual meaning of a 'view', participants in this study consider the meaning of 'future' when planning for children with profound and multiple learning difficulties. A difference between an adult's conceptualisation of future and how a child with profound and multiple learning difficulties is thought to experience time in the present is suggested by participants. This shifts consideration of whether a child can have a 'view' towards adults thinking about the timeframe associated with the view expressed. Observations of PCP meetings suggest that adults' understanding of a child's views in the present can inform decision‐making for the child's future, as they infer the meaning of a child's views about what is important to them for the future from their understanding of the child's views about their immediate activities and experiences. This approach still requires adults to speak on a child's behalf. Where potential exists for an adult's wishes and feelings to influence their representation of a child's views, an advocate should be identified to challenge the interpretation on behalf of the child (Ingram, [<reflink idref="bib12" id="ref51">12</reflink>]; Ware, [<reflink idref="bib24" id="ref52">24</reflink>]).</p> <hd id="AN0173368793-29">Developing children's views over time</hd> <p>There is agreement within the literature that approaches to exploring the views of children with profound and multiple learning difficulties should draw upon multiple sources of information to increase the validity of the views obtained (Harding, [<reflink idref="bib11" id="ref53">11</reflink>]; Porter, [<reflink idref="bib15" id="ref54">15</reflink>]; Taylor, [<reflink idref="bib18" id="ref55">18</reflink>]; Ware, [<reflink idref="bib23" id="ref56">23</reflink>]). The potential for a child's views to be biased by an adult's wishes and feelings may be reduced when triangulation of the information gathered takes place. The findings of the current study expand upon this idea by also considering the timeframe for gathering information, suggesting there should be triangulation of different sources of information and comparison of how a child responds to an activity at different times.</p> <p>The findings suggest that gathering a child's views should not be a one‐off activity undertaken for the purpose of a PCP meeting for two reasons. First, a child's response to an activity on one occasion could reflect their mood or an unmet need at a given time, such as hunger or tiredness, rather than reflecting their view of the activity. Second, a child with profound and multiple learning difficulties requires opportunity and time to explore different options available to them so that they can develop an informed view. Harding ([<reflink idref="bib11" id="ref57">11</reflink>]) states that a child with profound and multiple learning difficulties is unlikely to be able to undertake the hypothetical thinking required when options for the future are presented to them. Affording the child opportunity to experience these options enables the adults to observe the child's responses carefully to inform their decision‐making for the child's future. Furthermore, the findings suggest that exploring the views of a child with profound and multiple learning difficulties over time affords the child agency and autonomy to change their mind and revise their view once they have new experiences and greater exposure to an activity.</p> <p>Participants in this study reported difficulty in understanding a child's views about their health, medical needs and how they experience their disability, with decision‐making seen as adult‐led when the primary aim is to keep a child healthy and safe. Ware advocates for 'honesty about the limits of what we are (and are not) able to do' (2004, p. 178) when exploring the views of children with profound and multiple learning difficulties, suggesting the importance of adults being transparent and providing a clear rationale when making decisions on behalf of a child. The findings of the current study highlight health and medical needs as an area for future research with respect to how children with profound and multiple learning difficulties can express their views and experience agency in this aspect of their life.</p> <hd id="AN0173368793-30">Limitations and future research</hd> <p>The sample size of parents was small and comprised mothers, although one father took part in phase 3. Demographic data such as parents' age, education and socioeconomic status were not gathered for reasons of anonymity. Future research could explore parents' roles in understanding the views of a child with profound and multiple learning difficulties using a larger sample size, engaging with all adults with parental responsibility, and exploring the relationship between parental self‐efficacy and the child's agency.</p> <p>A social constructionist perspective leads to consideration of how social desirability may affect participant feedback on data analysis in a focus group. An individual may deny their own viewpoint to conform with the majority view and maintain group membership (Brown, [<reflink idref="bib4" id="ref58">4</reflink>]). Greater autonomy could have been given to participants by seeking their feedback individually. Future research is also recommended to focus specifically upon the social processes underpinning how shared meanings of a child's views are created in a group, for example, by employing audio‐recording and transcription methods for gathering rich data.</p> <hd id="AN0173368793-31">CONCLUSIONS</hd> <p>Understanding the views of children with profound and multiple learning difficulties takes place over time in relational and social contexts. Different interpretations of a child's communication and views are discovered when adults collaborate. While discussion within the literature focusses upon the conceptual meaning of 'a view', participants in this study consider the meaning of 'future' when planning for children with profound and multiple learning difficulties. Adults infer the meaning of a child's views about what is important to them for the future from their understanding of the child's views about their immediate contexts. This approach shows regard for the views a child has been able to express in the present and ensures adults are informed by a child's views, as far as possible, when making decisions.</p> <hd id="AN0173368793-32">CONFLICT OF INTEREST STATEMENT</hd> <p>The authors declare no conflict of interest.</p> <hd id="AN0173368793-33">DATA AVAILABILITY STATEMENT</hd> <p>Research data are not shared.</p> <ref id="AN0173368793-34"> <title> Footnotes </title> <blist> <bibl id="bib1" idref="ref8" type="bt">1</bibl> <bibtext> Pseudonyms are used to protect participant identity.</bibtext> </blist> </ref> <ref id="AN0173368793-35"> <title> REFERENCES </title> <blist> <bibtext> Bellamy, G., Croot, L., Bush, A., Berry, H., &amp; Smith, A. (2010). A study to define: Profound and multiple learning disabilities (PMLD). Journal of Intellectual Disabilities, 14 (3), 221 – 235.</bibtext> </blist> <blist> <bibl id="bib2" idref="ref50" type="bt">2</bibl> <bibtext> Brewster, S. J. (2004). Putting words into their mouths? Interviewing people with learning disabilities and little/no speech. British Journal of Learning Disabilities, 32 (4), 166 – 169.</bibtext> </blist> <blist> <bibl id="bib3" idref="ref32" type="bt">3</bibl> <bibtext> British Psychological Society (BPS). (2014). Code of human research ethics. BPS.</bibtext> </blist> <blist> <bibl id="bib4" idref="ref58" type="bt">4</bibl> <bibtext> Brown, R. (1988). Group processes. Blackwell Publishers Ltd.</bibtext> </blist> <blist> <bibl id="bib5" idref="ref28" type="bt">5</bibl> <bibtext> Charmaz, K. (2014). Constructing grounded theory (2nd ed.). Sage.</bibtext> </blist> <blist> <bibl id="bib6" idref="ref29" type="bt">6</bibl> <bibtext> Corbin, J., &amp; Strauss, A. L. (2008). Basics of qualitative research (3rd ed.). Sage.</bibtext> </blist> <blist> <bibl id="bib7" idref="ref3" type="bt">7</bibl> <bibtext> Department for Education and Department of Health (DfE &amp; DoH). (2015). The special educational needs and disability code of practice. DfE &amp; DoH.</bibtext> </blist> <blist> <bibl id="bib8" idref="ref4" type="bt">8</bibl> <bibtext> Department of Health. (2010). Person‐centred planning: Advice for using person‐centred thinking, planning, and reviews in school and transition. DoH.</bibtext> </blist> <blist> <bibl id="bib9" idref="ref38" type="bt">9</bibl> <bibtext> Farmer, K. E. (2022). Understanding the views of children with complex learning and communication needs for person‐centred planning [Unpublished doctoral thesis]. University College London.</bibtext> </blist> <blist> <bibtext> Greathead, S., Yates, R., Hill, V., Kenny, L., Croydon, A., &amp; Pellicano, E. (2016). Supporting children with severe‐to‐profound learning difficulties and complex communication needs to make their views known. Topics in Language Disorders, 36 (3), 217 – 244.</bibtext> </blist> <blist> <bibtext> Harding, E. (2009). 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Education, 3–13, 37 (4), 349 – 360.</bibtext> </blist> <blist> <bibtext> Ratti, V., Hassiotis, A., Crabtree, J., Deb, S., Gallagher, P., &amp; Unwin, G. (2016). The effectiveness of person‐centred planning for people with intellectual disabilities: A systematic review. Research in Developmental Disabilities, 57, 63 – 84.</bibtext> </blist> <blist> <bibtext> Sharma, P. (2021). Barriers faced when eliciting the voice of children and young people with special educational needs and disabilities for their education, health and care plans and annual reviews. British Journal of Special Education, 48 (4), 455 – 476.</bibtext> </blist> <blist> <bibtext> Taylor, K. (2007). The participation of children with multi‐sensory impairment in person‐centred planning. British Journal of Special Education, 34 (4), 204 – 211.</bibtext> </blist> <blist> <bibtext> Thornberg, R. (2012). Informed grounded theory. Scandinavian Journal of Educational Research, 56 (3), 243 – 259.</bibtext> </blist> <blist> <bibtext> UNESCO. (1994). The Salamanca statement and framework for action on special needs education.</bibtext> </blist> <blist> <bibtext> United Nations. (1989). Convention on the rights of the child. United Nations General Assembly.</bibtext> </blist> <blist> <bibtext> Vygotsky, L. S. (1978). Mind in society: The development of higher psychological processes. Harvard University Press.</bibtext> </blist> <blist> <bibtext> Ware, J. (2004). Ascertaining the views of people with profound and multiple learning disabilities. British Journal of Learning Disabilities, 32, 175 – 179.</bibtext> </blist> <blist> <bibtext> Ware, J. (2019). Autonomy, rights, and children with special educational needs: The distinctiveness of Wales. International Journal of Inclusive Education, 23 (5), 507 – 518.</bibtext> </blist> <blist> <bibtext> White, J., &amp; Rae, T. (2016). Person‐centred reviews and transition: An exploration of the views of students and their parents/carers. Educational Psychology in Practice, 32 (1), 38 – 53.</bibtext> </blist> <blist> <bibtext> Willig, C. (2008). Introducing qualitative research in psychology. Open University Press.</bibtext> </blist> <blist> <bibtext> Wright, K. (2008). Researching the views of pupils with multiple and complex needs. Is it worth doing and whose interests are served by it? Support for Learning, 23 (1), 32 – 40.</bibtext> </blist> </ref> <aug> <p>By Kate E. Farmer and Phil Stringer</p> <p>Reported by Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib21" firstref="ref1"></nolink> <nolink nlid="nl2" bibid="bib20" firstref="ref2"></nolink> <nolink nlid="nl3" bibid="bib16" firstref="ref5"></nolink> <nolink nlid="nl4" bibid="bib25" firstref="ref6"></nolink> <nolink nlid="nl5" bibid="bib23" firstref="ref10"></nolink> <nolink nlid="nl6" bibid="bib11" firstref="ref11"></nolink> <nolink nlid="nl7" bibid="bib17" firstref="ref12"></nolink> <nolink nlid="nl8" bibid="bib27" firstref="ref15"></nolink> <nolink nlid="nl9" bibid="bib10" firstref="ref17"></nolink> <nolink nlid="nl10" bibid="bib15" firstref="ref22"></nolink> <nolink nlid="nl11" bibid="bib18" firstref="ref24"></nolink> <nolink nlid="nl12" bibid="bib14" firstref="ref25"></nolink> <nolink nlid="nl13" bibid="bib26" firstref="ref27"></nolink> <nolink nlid="nl14" bibid="bib19" firstref="ref31"></nolink> <nolink nlid="nl15" bibid="bib22" firstref="ref41"></nolink> <nolink nlid="nl16" bibid="bib13" firstref="ref42"></nolink> <nolink nlid="nl17" bibid="bib12" firstref="ref51"></nolink> <nolink nlid="nl18" bibid="bib24" firstref="ref52"></nolink> |
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| Items | – Name: Title Label: Title Group: Ti Data: Understanding the Views of Children with Profound and Multiple Learning Difficulties for Person-Centred Planning – Name: Language Label: Language Group: Lang Data: English – Name: Author Label: Authors Group: Au Data: <searchLink fieldCode="AR" term="%22Farmer%2C+Kate+E%2E%22">Farmer, Kate E.</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0002-6428-4343">0000-0002-6428-4343</externalLink>)<br /><searchLink fieldCode="AR" term="%22Stringer%2C+Phil%22">Stringer, Phil</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0002-3491-3508">0000-0002-3491-3508</externalLink>) – Name: TitleSource Label: Source Group: Src Data: <searchLink fieldCode="SO" term="%22British+Journal+of+Learning+Disabilities%22"><i>British Journal of Learning Disabilities</i></searchLink>. 2023 51(4):499-508. – Name: Avail Label: Availability Group: Avail Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us – Name: PeerReviewed Label: Peer Reviewed Group: SrcInfo Data: Y – Name: Pages Label: Page Count Group: Src Data: 10 – Name: DatePubCY Label: Publication Date Group: Date Data: 2023 – Name: TypeDocument Label: Document Type Group: TypDoc Data: Journal Articles<br />Reports - Research – Name: Subject Label: Descriptors Group: Su Data: <searchLink fieldCode="DE" term="%22Childrens+Attitudes%22">Childrens Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Participative+Decision+Making%22">Participative Decision Making</searchLink><br /><searchLink fieldCode="DE" term="%22Severe+Intellectual+Disability%22">Severe Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Multiple+Disabilities%22">Multiple Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Role%22">Role</searchLink><br /><searchLink fieldCode="DE" term="%22Students+with+Disabilities%22">Students with Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Special+Schools%22">Special Schools</searchLink><br /><searchLink fieldCode="DE" term="%22Student+Attitudes%22">Student Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22School+Personnel%22">School Personnel</searchLink><br /><searchLink fieldCode="DE" term="%22Parents%22">Parents</searchLink><br /><searchLink fieldCode="DE" term="%22Student+Centered+Learning%22">Student Centered Learning</searchLink><br /><searchLink fieldCode="DE" term="%22Planning%22">Planning</searchLink><br /><searchLink fieldCode="DE" term="%22Self+Determination%22">Self Determination</searchLink><br /><searchLink fieldCode="DE" term="%22Interpersonal+Communication%22">Interpersonal Communication</searchLink> – Name: DOI Label: DOI Group: ID Data: 10.1111/bld.12525 – Name: ISSN Label: ISSN Group: ISSN Data: 1354-4187<br />1468-3156 – Name: Abstract Label: Abstract Group: Ab Data: Background: All children have the right to express their views about matters affecting them and participate in decision-making for their future irrespective of their intellectual ability. This study explores the adult role in understanding the views of children with profound and multiple learning difficulties who are not using a formal communication system and require adults to speak on their behalf. Methods: The study employs a qualitative multiple case study design involving three children with profound and multiple learning difficulties attending one special school. Social constructivist grounded theory approaches inform data gathering and analysis. Eight interviews are conducted with parents and professionals to explore how they understand the children's views and how this understanding informs person-centred planning, combined with observations of the children in school and observations of their person-centred planning meetings. Findings: Adult participants consider the children in the study to have agency and ability to affect the world around them. They believe the children can express their likes, dislikes and what they want but they think the children would have difficulty communicating their views about their health, medical needs and disability. They describe a range of observable actions made by a child to which they give meaning when interpreting the child's views. The actions a person takes as a child's communication partner can enable the child to develop and communicate their views. A process of observation and comparison allows adults to explore different interpretations of a child's views. Perspectives offered by professionals from different fields enable a child's views to be understood in different ways. Conclusions: Adults develop their understanding of the children's views over time in relational and social contexts. Different interpretations of a child's communication are considered when adults collaborate, leading to socially constructed understandings of a child's views. Adults infer the meaning of a child's views about what is important to them for the future from their understanding of the child's views in the present, which informs person-centred planning. – Name: AbstractInfo Label: Abstractor Group: Ab Data: As Provided – Name: DateEntry Label: Entry Date Group: Date Data: 2023 – Name: AN Label: Accession Number Group: ID Data: EJ1398567 |
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| RecordInfo | BibRecord: BibEntity: Identifiers: – Type: doi Value: 10.1111/bld.12525 Languages: – Text: English PhysicalDescription: Pagination: PageCount: 10 StartPage: 499 Subjects: – SubjectFull: Childrens Attitudes Type: general – SubjectFull: Participative Decision Making Type: general – SubjectFull: Severe Intellectual Disability Type: general – SubjectFull: Multiple Disabilities Type: general – SubjectFull: Adults Type: general – SubjectFull: Role Type: general – SubjectFull: Students with Disabilities Type: general – SubjectFull: Special Schools Type: general – SubjectFull: Student Attitudes Type: general – SubjectFull: School Personnel Type: general – SubjectFull: Parents Type: general – SubjectFull: Student Centered Learning Type: general – SubjectFull: Planning Type: general – SubjectFull: Self Determination Type: general – SubjectFull: Interpersonal Communication Type: general Titles: – TitleFull: Understanding the Views of Children with Profound and Multiple Learning Difficulties for Person-Centred Planning Type: main BibRelationships: HasContributorRelationships: – PersonEntity: Name: NameFull: Farmer, Kate E. – PersonEntity: Name: NameFull: Stringer, Phil IsPartOfRelationships: – BibEntity: Dates: – D: 01 M: 01 Type: published Y: 2023 Identifiers: – Type: issn-print Value: 1354-4187 – Type: issn-electronic Value: 1468-3156 Numbering: – Type: volume Value: 51 – Type: issue Value: 4 Titles: – TitleFull: British Journal of Learning Disabilities Type: main |
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