J Intellect Disabil Res - 2023 - Alex - Assessing Eating and Swallowing in Adults Born With Intellectual and Motor

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Journal of Intellectual Disability Research doi: 10.1111/jir.13067

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VOLUME 67 PART 11 pp 1174–1189 NOVEMBER 2023
Brief Report
Assessing eating and swallowing in adults born with

intellectual and motor disabilities: Face and content
validity of a Swedish translation of the Dysphagia
Assessment Package
A. Alex,1 M. G. Lindh2,3 & S. Palmcrantz1,4
1 Department of Rehabilitation Medicine, Danderyd Hospital, Stockholm, Sweden
2 Centre for Research & Development, Uppsala University/Region Gävleborg, Gävle, Sweden
3 Department of Neuroscience, Speech and Language Pathology, Uppsala University, Uppsala, Sweden
4 Department of Clinical Sciences, Danderyd Hospital, Karolinska Institutet, Stockholm, Sweden
Abstract Conclusion This study, in which the DAP-SE was

tested in a small sample size, provides the first
Purpose Adults born with intellectual disabilities
indications of the instrument’s validity with respect to
(ID) and motor disabilities (MD) have higher risk of
evaluating mealtimes, swallowing function and
dysphagia and should be assessed to decrease risk of
swallowing safety in adults born with ID and MD.
severe complications. However, standardised
The study adds to the knowledge on how to translate
assessment tools in Swedish are lacking.
and culturally adapt an assessment tool to clinically
Methods The Dysphagia Assessment Package
assess dysphagia on a complex and vulnerable patient
(DAP) was cross-culturally translated from English to
group.
Swedish (DAP-SE) and tested for content validity by
an expert group. Face validity was assessed by five Keywords Early Intervention, Intellectual
speech and language therapist (SLT) during meal Disability, Intervention Evaluation, Methodology in
observations (n = 10), and the clinical relevance was research
reported in a study-specific questionnaire.
Results The DAP-SE was culturally adapted within
the process of translation and was found to contain Background
clinically relevant aspects to assess and suggest further
interventions for adults with ID and MD. Face and Intellectual disability (ID) is a neurodevelopmental
content validity was confirmed by the expert group. disorder with limitations on intellectual ability and
adaptive functioning and varies depending on its
severity (American Psychiatric Association 2013).
Correspondence: Associate Professor Susanne Palmcrantz,
Department of Rehabilitation Medicine, Danderyd Hospital,
Motor disabilities (MD) and ID are reported to be
Entrévägen 8, SE 182 88 Stockholm, Sweden (e-mail: susanne. closely related (Jonsson et al. 2019); health and
palmcrantz@ki.se). wellbeing are poorer than among the general
© 2023 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the
Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution
and reproduction in any medium, provided the original work is properly cited.
13652788, 2023, 11, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/jir.13067 by UNIVERSIDAD CATOLICA SILVA HENRIQUEZ, Wiley Online Library on [14/02/2024]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
Journal of Intellectual Disability Research VOLUME 67 PART 11 NOVEMBER 2023
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population (Haveman et al. 2010), causing higher spasticity and epileptic seizures often prohibit the use
mortality (Arvio et al. 2016; Hosking et al. 2016; of a more invasive method (Sandin 2005; Borr
Hirvikoski et al. 2021). et al. 2007). Therefore, a meal observation may be a
Dysphagia is commonly described as ‘difficulty in more feasible assessment.
swallowing, resulting in an abnormal way of moving In search of a standardised and tested screening or
food from mouth to stomach’. Dysphagia may occur assessment tool for meal observations, which may
during the oropharyngeal or oesophageal phase of assist SLTs in evaluating signs and symptoms of
swallowing due to sensory-motor dysfunction, impaired swallowing function, no Swedish
mechanical obstructively or motility disorders (Azer standardised assessment tool was found for adults
and Kshirsagar 2021). In this study, we use a more with ID and MD.
comprehensive definition, including all behavioural, Internationally, the Dysphagia Disorder Survey
sensory and primary motor acts in preparation for the (DDS) is a recognised standardised assessment tools
swallowing, cognitive awareness of the upcoming for meal observations of patients with developmental
eating situation, visual recognition of food and disabilities. In conjunction to the DDS, the
physiologic responses such as increased salivation, Dysphagia Management Staging Scale (DMSS) is
lung function and respiratory health, oral health and used for rating severity of involvement for eating and
positioning (Logemann 1998; Benigni et al. 2011; swallowing disorder based on management needs and
Speyer et al. 2018, 2019). health-related outcomes (Sheppard et al. 2014). Both
Individuals with dysphagia risk negatively tests demand a certification, which is not an option
consequences as malnutrition, dehydration and for most SLTs in Sweden due to economic and lan-
suffocation (MacDonald et al. 1989; Rogers guage aspects. However, the Dysphagia Assessment
et al. 1994; Kennedy et al. 1997; Finestone et al. 1998; Package (DAP) by Tees, Esk and Wear Valleys NHS
Benigni et al. 2011; Benfer et al. 2015; Cheney Foundation Trust in England, was identified via pro-
et al. 2015), also affecting quality of life and social fessional networks (Appendix 1).
interaction (Ekberg et al. 2002). The DAP is used for the assessment of adult
Dysphagia is common in individuals with more patients born with multi-functional disabilities,
severe levels of ID with MD (Robertson et al. 2017, developed clinically over the last 15 years by Dr
2018; Speyer et al. 2022) as of cerebral palsy (CP) Hannah Crawford, SLT and colleagues and used in
(Speyer et al. 2019) and Rett syndrome (Mezzedimi the United Kingdom. It contains sections of respi-
et al. 2017). ratory functions/warning signs, oral hygiene, oral
There is a general agreement that severity of function, pre-mealtime observation, mealtime ob-
dysphagia is positively associated with the severity of servation, pharyngeal phase, respiration with or
gross motor impairment (Benfer et al. 2013). A study without cervical auscultation and further comments
on individuals with severe gross MD reported the as well as a thorough patient history. It is not based
prevalence of dysphagia to be 46%, increasing to 82% on a function, for example, swallowing, but on a full
among persons with the most pronounced gross MD meal to evaluate, for example, total intake of food,
(Arvedson and Brodsky 2002). It indicates the need fatigue and nonverbal cues. The complete assess-
to systematically assess this group in clinical practice, ment is summarised in an action plan. The DAP
especially as they cannot fully express their needs (due appeared to be suitable for a Swedish clinical
to communicative or/and cognitive impairments) and context.
dysphagia often remains unnoticed (Sandin 2005; van Thus, the aim of this study was to perform a
Timmeren et al. 2017, 2019). It is also supported by qualitative designed cross-cultural translation of the
Foley et al. (2008) who found interventions for DAP from English to Swedish, called the DAP-SE.
dysphagia to be associated with a decreased incidence Furthermore, to determine the content and face
of pneumonia, a treatment that should be prompted validity of the DAP-SE in a Swedish clinical context
with an assessment of dysphagia (Speyer et al. 2019). when used by SLTs in Sweden on adult persons
The importance of non-invasive examination with ID and MD and eating and swallowing
methods for persons with ID and MD unable to difficulties, the study addressed the following
perform invasive methods are identified as crucial as questions:
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1 Does the DAP-SE cover relevant aspects of eating idiomatic errors to reach a common, synthesised
and swallowing difficulties in persons born with version, adapted for Swedish healthcare, the DAP-
ID and MD when used as an assessment tool dur- SE. In this process, the original developer, Hannah
ing meal observation in a Swedish context (con- Crawford, was consulted to discuss the meaning and
tent validity)? use of wordings.
2 Is the DAP-SE considered relevant by SLTs per- The instrument was translated back to English by
forming the assessment during meal observation an independent translator and health professional (a
on persons born with ID and MD with eating medical doctor working within Swedish healthcare),
and swallowing difficulties in a Swedish context fluent in Swedish, and whose mother tongue was
(face validity)? English, and with no previous knowledge of the DAP
or DAP-SE. As in the initial translation, emphasis was
on conceptual and cultural equivalence and not on
linguistic equivalence. Discrepancies were discussed
Method
with the original developer Hannah Crawford and the
Cross-cultural translation and validation were expert group until a satisfactory version was reached.
performed based on procedures for translation of
standardised assessments tools (Beaton et al. 2000; Content validity
Sheppard et al. 2014; Palmcrantz and
The expert panel gave their views on content validity
Sommerfeld 2018). Content validity was assessed by
based on professional affiliation, current
an expert group to ensure it included all relevant
evidence-based knowledge and work experience.
aspects to be targeted by the DAP-SE and tested for
They met in both physical and digital meetings and
aspects of face validity when used by SLTs in a
assessed through discussion how DAP-SE managed
clinical context (Sousa and Rojjanasrirat 2011). The
to identify people with ID and MD and dysphagia
study protocol was approved by the Swedish Ethical
during a meal situation. Discussions were also held
Review Authority (2019-00580), and the manuscript
about how well the DAP served as a structure for
follows the COREQ checklist for reporting qualitative
assessment of this target group and whether DAP-SE
research (concerning aspects of research team and
covered relevant aspects.
reflexivity, study design and analysis and findings)
The expert panel discussed the DAP-SE for its
(Tong et al. 2007).
semantic, experiential and conceptual equivalence.
The method included the following steps.
For each item and instruction, consensus was taken,
and the DAP-SE was revised accordingly.
Forward and back translation
Face validity
Forward translation was made by a bilingual SLT
familiar with terminology of dysphagia, with Swedish To assess aspects related to face validity of the
as mother tongue and with good knowledge in DAP-SE when used by SLTs in clinical practice, a
English language and English-speaking culture. The convenience sample of another five SLTs, age (range
translator was given instructions emphasising 30–52 years), sex (women n = 5), years in profession
conceptual rather than literal translations, as well as (range 5–27 years), working in habilitation centres
the need to adapting a natural language for usability focused on adult persons born with ID, levels IV–V of
among Swedish SLTs. the Gross Motor Functional Classification
A bilingual expert panel was put together consisting (GMFCS), within the Stockholm City Council were
of three SLTs with 6–15 years of experience of clinical recruited.
assessment of dysphagia among adult persons with ID The five SLTs were asked to recruit two persons
and MD, one SLT with specialist knowledge of with ID and MD each, within their own clinic.
dysphagia and one researcher (physiotherapist) Inclusion criteria were dysphagia in combination with
experienced in psychometric testing of assessment dependence in mobility according to GMFCS IV–V.
tools. The expert panel reviewed the translation and The GMFCS assesses gross motor skills on a five-step
resolved any misunderstandings and semantic and scale. Persons assessed as level I are the most able,
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and those assessed as level V are dependent on others five statements on the relevance of the DAP-SE and
for all their mobility needs (Palisano et al. 1997). three questions. The SLTs were asked to rate the
Exclusion criteria were reduced consciousness to extent to which they agreed with the statements on an
the level of not being able to be fed by an assisting ordinal scale (do not agree at all; agree to a small extent;
person. The persons with ID and MD were given neutral; agree to some extent; agree fully) and were asked
both written and oral information about the study. to elaborate their answers in writing. The
They and their guardians were also informed that questionnaire also contained questions on the content
participation was voluntary, could be terminated at responded to with yes/no and encouragement to
any time and would not affect other care. elaborate in writing.
Altogether a total of 10 persons with ID and MD A copy of the completed and encoded DAP-SE
(Table 1) were tested, but due to a local assessment forms and the answers to the
reorganisation and, further on, the pandemic, it took questionnaire were sent to the study coordinator. The
longer than expected to recruit all participants. coordinator then contacted the five SLTs individually
Recruitment started in spring 2017 and ended in April by phone or email and conducted a short interview
2021. Written consent was given from three persons based on SLTs’ responses to the questionnaire to
with ID and MD, hand-on pen by four and guardians’ ensure that their comments were properly
consent in three cases. Staff and relatives participating understood.
in meal observations were asked for consent through
separate consent forms. No one withdrew their Results
permission or participation throughout the study.
The SLTs performed the meal observations using Content validity
the revised DAP-SE. It was carried out individually Results of the assessed content validity performed by
during a full meal, common to the person with ID and the expert panel are presented in Table 2.
MD. Completed assessment forms were kept on the
respective unit and handled as medical records. The Face validity
SLTs’ evaluations of the meal observations were
journaled, and if necessary, interventions and The five SLTs’ responses to the questionnaire
follow-ups were given by each SLT, according to covering the clinical relevance of the DAP-SE are
standard procedures. presented in Table 3.
After using the DAP-SE, the SLTs were asked to
fill in a study specific questionnaire to evaluate face Final review by expert group
validity of the DAP-SE. The questionnaire included To reach a final version of the DAP-SE, the
assessment tool was reviewed once more by the expert
Table 1 Participant characteristics of the persons with ID and MD panel including the comments from the SLT
tested by the five SLTs questionnaire. The expert panel reached consensus
and found the final version of DAP-SE to be valid in
Person Sex Age Neurological diagnosis GMFCS terms of content validity. It was concluded that all
aspects on face validity commented on by the SLTs
had been addressed in the final revision.
1 F 35 Cerebral palsy V
2 M 44 Cerebral palsy V
3 M 49 Cerebral palsy V Discussion
5 M 31 Cerebral palsy V The English DAP was translated and culturally
6 F 31 Rett Syndrome V adapted into the Swedish DAP-SE, leaving a ready-
7 M 50 Cerebral palsy IV to-use assessment tool, covering relevant aspects to
8 F 49 Cerebral palsy IV
consider during a meal observation of the group of
10 F 29 Rett Syndrome V adult persons born with ID and MD in Sweden. Ac-
cording to the European Society for Swallowing Dis-
GMFCS, Gross Motor Functional Classification. orders (ESSD), selecting the best evidence-based
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Table 2 Requested changes by the expert panel
Requested changes by the

expert panel Section Change
Clarification regarding who ‘Personal ‘Name of the person who assist the person’ and ‘that day’,
assisted the patient during the information’ were added
specific meal observation
Additional alternative answers ‘Medication’ ‘Method of administration’ was added
to clarify and to increase the ‘Summary of current ‘Amount of fluids and food per meal/daily meal plan’
usability eating and drinking’ was specified as ‘Number of meals/day’ and ‘Size of
‘Report of’ portions’ and ‘How much fluid is consumed?’
‘Food avoidance’ was specified as ‘Avoidance of
certain food’
To address the network ‘Social aspects of ‘The following questions are directed to the network
around the person and to mealtime’ added surrounding the person. Instruction: use the persons
encourage a more thorough before the section with ID and MD name when posing the following
answer ‘Summary of current questions’
eating and drinking’ ‘How does the person you assist communicate his/her
needs related to food and drink?’
‘How important is it for the person you assist, to eat and
drink?’
‘Do you think that the attitudes of the person you assist
or his/her behaviour during the situation with
food affects your relationship? If yes, in what way (e.g.
leads to stress, conflict, falling out or happiness and
togetherness)’
‘If this assessment would result in any change, e.g. in
consistency or in not being able to eat a favourable dish
or alternative nutrition such as supplement drinks, how
would you feel?’
To be in accordance with ‘Report of’ Section ‘Report of’ was changed to ‘Anamnesis’
documentation routines used ‘Oral hygiene screen’ ‘Mobility’ was divided into three parts—‘Mobility
by SLTs in Sweden and to (degree of independence), Mobility aid (active, passive
encourage the collection of type of wheelchair), Arm and hand skills related to
more thorough and specific intake of meals’
anamnesis ‘lacking’ (of teeth) and ‘caries’ were added
To encourage the collection of ‘Mealtime observations’ ‘Consistency’ was added as a reminder when describing
more thorough and specific ‘Pharyngeal stage’ ‘Main course’, ‘Dessert’ and ‘Drink’. Within the item
information during the ‘Oral-motor control’: specifics as ‘Chewing
mealtime observation pattern/spill/can form a formed bolus/bolus retention in
the lateral sulcus (right/left/both)’ were added
Within the item ‘Bolus propulsion’, ‘(how is the bite
moved backwards)’, ‘by gravity’ and ‘tongue pressure’
were added
Within the item ‘Oral transit time’ and ‘from oral
processing/chewing until initiation of swallowing
reflex, in seconds’ were added
Within the item ‘Ability to initiate swallow’, (‘none,
mild, moderate, severe delay’) were added as well as
‘Rapid, multiple swallowing motions’
‘Cough, choking, respiratory distress’ was changed to
‘Respiratory effects – colour, effort, audible breathing’
‘Pulse Ox/Oximetry’ was changed to ‘Saturation
†
meter’
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Table 2. (Continued)
Requested changes by the

expert panel Section Change
To point out that cervical ‘Respiration’ Within the section “Respiration”: “with or without
auscultation can be used cervical auscultation” was added
during the assessment
To be in accordance with Added ‘Summary of The section ‘Summary of assessment’ was added at the
documentation routines used assessment’ end of the DAP-SE
by SLTs in Sweden
To clarify further planning ‘Action plan’ The section ‘Action plan’ was replaced with
‘Recommendations, Treatment plan and Other
interventions’
†
Change made during the translation phase to be in accordance with documentation routines used by SLTs in Sweden.
Table 3 Number of SLTs’ responding to each item in the questionnaire and comments
Do not Agree
agree to a Agree to
Item at all small extent Neutral some extent Agree fully
DAP-SE captures relevant aspects of difficulties swallowing 2 3

during a mealtime observation
DAP-SE is support during assessment of a mealtime situation 5
DAP-SE is relevant in my clinical everyday practice 2 3
DAP-SE is easy to use 1 2 2
DAP-SE does not take too long to use 2 3
Question Yes No
Is something lacking in DAP-SE 3 2
Is there anything that needs to be clarified in DAP-SE 1 4
Is there any part you want to delete in DAP-SE 1 4
Additional comments in writing
Suggested additions were: ‘Signs of avoidance/protection’ added to the item ‘Food refusal’ and ‘Jaw movement’ to the section ‘Mealtime
observation, Oral phase’ as well as ‘Discreet signs of aspiration, teary eyes’ added to the section ‘Respiration’ and ‘Colour’ added to the
item ‘Coughing, choking, respiratory distress’
Identified risk for repeating the same information was noted in the section of ‘Mealtime observation, Oral phase’
Comments on layout included a request of numbering the larger blocks, but also to revise the layout to reduce page turnings
Requested additional section on current medication record
Positive comments were made about how thorough the content of the DAP-SE was
Comments were made about balancing thoroughness with person fatigue, since there was a concern about the DAP-SE being almost
too much to complete in one observation and that you would need some time to get used to the DAP-SE before it becomes fully useful
screening and assessment tool for dysphagia is an es- methods for evaluation and treatment are to be de-
sential step in the management of dysphagia. Only veloped and tested. This study adds to the knowledge
screening with sufficient diagnostic performance and on how to adapt a tool that may be used to systemat-
assessments with robust psychometric properties ically assess dysphagia among persons with ID and
should be used clinically and in research (Speyer MD in a clinical context.
et al. 2022). With the group of persons with ID and The methodology used in this study was adapted
MD, who often cannot express their own needs, from available guidelines. Guidelines for translation
clinical experience becomes essential when new processes are commonly focused on translating
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self-reported questionnaires for patients and not be identified, suffering due to severe complications
clinical assessment tools. Thus, the translators are such as malnutrition, dehydration, etc., which often
recommended to be one native speaking person with require hospitalisation might be avoided and lead to
thorough knowledge about the topic and one without more cost-effective interventions.
to secure that each item can be interpreted correctly
using a vocabulary that is familiar to the population
(Guillemin et al. 1993; Harkness et al. 2003; Conclusion
Dorer 2015). In this study, the aim was to translate
This study, in which the DAP-SE was tested in a
and culturally adapt an assessment tool to be used by
small sample size, provides the first indications of the
professionals in clinical practice. Thus, the translation
instrument’s validity with respect to evaluating
and cultural and clinical adaptation were led and
mealtimes, swallowing function and swallowing safety
conducted by a bilingual expert group including
in adults born with ID and MD. The study adds to
SLTs practising in Sweden. This methodology was
the knowledge on how to translate and culturally
chosen as English, the original language of the tool is
adapt an assessment tool. The use of DAP-SE may
the second language, among academics in Sweden. In
increase the possibility to systematically assess and
other countries, the use of two native speaking trans-
provide data that may be used to further develop
lators who perform the translations independently is
healthcare interventions for this patient group, at local
still recommended (Beaton et al. 2000). The fact that
and national level. Most importantly, suffering may
face validity was assessed by a small group of five
be identified, and interventions may be provided to
SLTs may have affected the results. It is plausible that
improve function and increase quality of life.
not all relevant clinical aspects were identified and
therefore not considered in the revision. However, all
SLTs found the content of the DAP-SE to be relevant Acknowledgements
and to be supportive in clinical practice. Thus, given
these results and the adaptations made by the expert We wish to thank the Swedish SLPs for contributing
panel in this study, we consider this first version of the with their knowledge and experiences of using the
DAP-SE to be ready to be used in clinical practice in DAP-SE.
Sweden. It should however be followed by further
evaluations among users to enable further revisions
when needed as tests of reliability. Source of funding
Considering the complexity of persons with ID and No external funding was received for the research
MD, the DAP-SE may be too extensive to follow reported in the paper.
during one meal observation. Completing the
assessment during an additional observation may be
considered. However, training for users in how to use Author contributions
the tool is required in order to develop the skills
All authors contributed to the study conception and
needed to assess all items within a reasonable time.
design. Material preparation was performed by Anna
This was commented on by the SLTs who suggested
Alex and Susanne Palmcrantz, and data collection by
seminars and meetings to discuss how patients should
Anna Alex and analysis was performed by all authors.
be assessed with DAP-SE.
The first draft of the manuscript was written by all
Few published studies focus on this specific adult
authors, and all authors commented on previous
population (Speyer et al. 2019), and information on
versions of the manuscript. All authors read and
prevalence is scarce and mostly based on paediatric
approved the final manuscript.
data (Speyer et al. 2022). Moreover, clinical data on
level of ID were sparse at the time of this study,
particularly among older adults, in this patient group
Conflict of interest
(GMFCS IV-V) in Sweden (Noten et al. 2022). Thus,
future studies on prevalence as well as assessment and The authors declare that they have no conflict of
treatment are urgently needed. If patients in need can interest.
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Ethics statement Ekberg O., Hamdy S., Woisard V., Wuttge-Hannig A. &
Ortega P. (2002) Social and psychological burden of
The study protocol was approved by the Swedish dysphagia: its impact on diagnosis and treatment.
Ethical Review Authority (2019-00580). Dysphagia 17, 139–46.
Finestone H. M., Fisher J., Greene-Finestone L. S., Teasell
R. W. & Craig I. D. (1998) Sudden death in the dysphagic
Data availability statement
stroke patient--a case of airway obstruction caused by a
The manuscript follows the COREQ checklist for food bolus: a brief report. American Journal of Physical
Medicine & Rehabilitation 77, 550–2.
reporting qualitative research (concerning aspects of
Foley N., Teasell R., Salter K., Kruger E. & Martino R.
research team and reflexivity, study design and
(2008) Dysphagia treatment post stroke: a systematic
analysis and findings). review of randomised controlled trials. Age and Ageing 37,
258–64.
Guillemin F., Bombardier C. & Beaton D. (1993) Cross-
cultural adaptation of health-related quality of life
References
measures: literature review and proposed guidelines.
American Psychiatric Association (2013) Diagnostic and Journal of Clinical Epidemiology 46, 1417–32.
Statistical Manual of Mental Disorders, fifth edn. American Harkness, J., van de Vijver, F. & Mohler, P. (2003).
Psychiatric Association, Washington, DC. Questionnaire translation.
Arvedson J. C. & Brodsky L. (2002) Pediatric Swallowing and Haveman M., Heller T., Lee L., Maaskant M., Shooshtari S.
Feeding: Assessment and Management. Singular Thomson & Strydom A. (2010) Major health risks in aging Persons
Learning. with intellectual disabilities: an overview of recent studies.
Arvio M., Salokivi T., Tiitinen A. & Haataja L. (2016) Journal of Policy and Practice in Intellectual Disabilities 7,
Mortality in individuals with intellectual disabilities in 59–69.
Finland. Brain and Behavior: A Cognitive Neuroscience Hirvikoski T., Boman M., Tideman M., Lichtenstein P. &
Perspective 6, e00431. Butwicka A. (2021) Association of intellectual disability
Azer S. A. & Kshirsagar R. K. (2021) Dysphagia. StatPearls with all-cause and cause-specific mortality in Sweden.
Publishing, Treasure Island (FL). JAMA Network Open 4, e2113014.
Beaton D. E., Bombardier C., Guillemin F. & Ferraz M. B. Hosking F. J., Carey I. M., Shah S. M., Harris T., Dewilde
(2000) Guidelines for the process of cross-cultural S., Beighton C. et al. (2016) Mortality among adults with
adaptation of self-report measures. Spine (Phila Pa 1976) intellectual disability in England: comparisons with the
25, 3186–91. general population. American Journal of Public Health 106,
1483–90.
Benfer K. A., Weir K. A., Bell K. L., Ware R. S., Davies P.
S. & Boyd R. N. (2013) Oropharyngeal dysphagia and Jonsson U., Eek M. N., Sunnerhagen K. S. & Himmelmann
gross motor skills in children with cerebral palsy. Pediatrics K. (2019) Cerebral palsy prevalence, subtypes, and
131, e1553–62. associated impairments: a population-based comparison
study of adults and children. Developmental Medicine and
Benfer K. A., Weir K. A., Bell K. L., Ware R. S., Davies P.
S. & Boyd R. N. (2015) Clinical signs suggestive of Child Neurology 61, 1162–7.
pharyngeal dysphagia in preschool children with cerebral Kennedy M., Mccombie L., Dawes P., Mcconnell K. N. &
palsy. Research in Developmental Disabilities 38, 192–201. Dunnigan M. G. (1997) Nutritional support for patients
Benigni I., Devos P., Rofidal T. & Seguy D. (2011) The CP- with intellectual disability and nutrition/dysphagia
disorders in community care. Journal of Intellectual
MST, a malnutrition screening tool for institutionalized
adult cerebral palsy patients. Clinical Nutrition 30, 769–73. Disability Research 41, 430–6.
Logemann J. A. (1998) Evaluation and Treatment of
Borr C., Hielscher-Fastabend M. & Lücking A. (2007)
Reliability and validity of cervical auscultation. Dysphagia Swallowing Disorders. Pro Ed Inc, Austin, Texas.
22, 225–34. MacDonald N. J., McConnell K. N., Stephen M. R. &
Cheney D. M., Siddiqui M. T., Litts J. K., Kuhn M. A. & Dunnigan M. G. (1989) Hypernatraemic dehydration in
Belafsky P. C. (2015) The ability of the 10-item eating patients in a large hospital for the mentally handicapped.
assessment tool (EAT-10) to predict aspiration risk in BMJ 299, 1426–9.
persons with dysphagia. The Annals of Otology, Rhinology, Mezzedimi C., Livi W., de Felice C. & Cocca S. (2017)
and Laryngology 124, 351–4. Dysphagia in Rett syndrome: a descriptive study.
Dorer B. (2015) Carrying out ‘advance translations’ to detect The Annals of Otology, Rhinology, and Laryngology 126,
comprehensibility problems in a source questionnaire of a 640–5.
cross-national survey. In: Translation and Comprehensibility Noten S., Rodby-Bousquet E., Limsakul C., Tipchatyotin
(eds K. Maksymski, S. Gutermuth & S. Hansen-Schirra), S., Visser F., Grootoonk A. et al. (2022) An international
pp. 77–112. Frank & Timme, Berlin.TransÜD 72. clinical perspective on functioning and disability in adults
1182
with cerebral palsy. Disability and Health Journal 15, user-friendly guideline. Journal of Evaluation in Clinical
101318. Practice 17, 268–74.
Palisano R., Rosenbaum P., Walter S., Russell D., Wood E. Speyer R., Cordier R., Farneti D., Nascimento W., Pilz W.,
& Galuppi B. (1997) Development and reliability of a Verin E. et al. (2022) White paper by the European Society
system to classify gross motor function in children with for swallowing disorders: screening and non-instrumental
cerebral palsy. Developmental Medicine and Child Neurology assessment for dysphagia in adults. Dysphagia 37, 333–49.
39, 214–23. Speyer R., Cordier R., Kim J. H., Cocks N., Michou E. &
Palmcrantz S. & Sommerfeld D. K. (2018) Development Wilkes-Gillan S. (2019) Prevalence of drooling,
and validation of the Swedish national stroke register swallowing, and feeding problems in cerebral palsy across
Riksstroke’s questionnaires in patients at 3 and 12 months the lifespan: a systematic review and meta-analyses.
after stroke: a qualitative study. BMJ Open 8, e018702. Developmental Medicine and Child Neurology 61, 1249–58.
Robertson J., Chadwick D., Baines S., Emerson E. & Hatton Speyer R., Cordier R., Parsons L., Denman D. & Kim J. H.
C. (2017) Prevalence of dysphagia in people with (2018) Psychometric characteristics of non-instrumental
intellectual disability: a systematic review. Intellectual and swallowing and feeding assessments in pediatrics: a
Developmental Disabilities 55, 377–91. systematic review using COSMIN. Dysphagia 33, 1–14.
Robertson J., Chadwick D., Baines S., Emerson E. & Hatton Tong A., Sainsbury P. & Craig J. (2007) Consolidated
C. (2018) People with intellectual disabilities and criteria for reporting qualitative research (COREQ): a
dysphagia. Disability and Rehabilitation 40, 1345–60. 32-item checklist for interviews and focus groups.
Rogers B., Stratton P., Msall M., Andres M., Champlain M. International Journal for Quality in Health Care 19, 349–57.
K., Koerner P. et al. (1994) Long-term morbidity and van Timmeren D. E. A., Deddens A., van Schrojenstein
management strategies of tracheal aspiration in adults with Lantman-de Valk H. M. J., van der Schans C. P., Krijnen
severe developmental disabilities. American Journal of W. P., Waninge A. et al. (2019) The convergent validity of
Mental Retardation 98, 490–8. a Dutch screening tool for dysphagia (Signaleringslijst
Sandin E. (2005) Dysfagi bland boende på sjukhem – förekomst, Verslikken) for people with severe or profound intellectual
intervention och ny bedsidebedömning. Karolinska and multiple disabilities. Journal of Applied Research in
Universitetssjukhuset, Enheten för logopedi. Intellectual Disabilities 32, 994–1001.
Sheppard J. J., Hochman R. & Baer C. (2014) The dysphagia van Timmeren E. A., Waninge A., van Schrojenstein
disorder survey: validation of an assessment for Lantman-de H. M. J., van der Putten A. A. J. & van der
swallowing and feeding function in developmental Schans C. P. (2017) Patterns of multimorbidity in people
disability. Research in Developmental Disabilities 35, 929–42. with severe or profound intellectual and motor disabilities.
Research in Developmental Disabilities 67, 28–33.
Sousa V. D. & Rojjanasrirat W. (2011) Translation,
adaptation and validation of instruments or scales for use
in cross-cultural health care research: a clear and
1183
1: Appendix SOCIAL ASPECTS OF MEALTIMES

PERSONAL INFORMATION
How does the person you care for communicate about food and
Name D.O.B. drink?
Date & Clinician Communication What does the person you care for communicate about food and
Hearing & Eyesight Smoker drink?
Client’s/carers description of problems How important is food and drink to them?
What role does food and drink play within your relationship?
How would any changes affect you (the carer) and any family?
CONSENT for dysphagia assessment (See

additional Trust MCA forms attached)
SUMMARY OF CURRENT EATING AND
DRINKING
MCA form – ‘Record of Date Comments:

Assessment of Capacity’ completed:
completed: ❒
Amount of fluids and foods per meal/daily meal plan
MCA form – ‘Record of Date Comments:
Utensils
Determination of Best completed:
Likes
Interests’ completed: ❒
Dislikes
Independence level/support needed
Tube fed?
MEDICATION (Also see supplementary sheet
attached)
Medications: Dose: Date and Preparation

reason prescribed: (e.g. tablet, liquid,
crushed, etc.):
1184
REPORT OF
Current Recent change?

Weight
Sleep pattern
(Snoring/apnoea)
Problems with saliva management
Dentition/Dentist
(Own teeth/false teeth/problems with teeth or mouth/regularity of dental visits)
Oral hygiene routine
(How often/resistant to oral care/dependent on others)
Chest status
Unusual behaviour before, during or after meals
Consistency of food eaten/drinks
Food avoidance
Breathing or chest problems during meals:
Coughing
Choking
Wheezing
Wet sounding voice
Stopping breathing
Fast/laboured breathing
Coughing up phlegm
Position while eating
Time taken to eat meals
Vomiting
Reflux
Mobility
RESPIRATORY SCREEN
Criteria Signs for concern Observations

Colour (Cyanosis) Bluish around lips
Effort Using e.g.
neck/shoulder
muscles to assist
respiration
Noisy breathing Fast, loud, noisy,
effortful breathing
1185
ORAL HYGIENE SCREEN
Criteria Signs for concern Observations
Teeth Dirty, mobile, roots exposed, not opposing, number of teeth, dentures
Gums Swollen, bleeding, red, painful
Saliva Too much, too little, odorous
Tongue Dry swollen, red, smooth, cracked, coated, persistent ulcers
Cheeks Persistent white patches, bleeding, yellow ulcerated
ORO-FACIAL FUNCTION ASSESSMENT
Appearance/symmetry Range of movement Tone
Lips
Tongue
Palate
Jaw
Cheeks
PRE-MEALTIME OBSERVATIONS
Position of head and neck, trunk and hips

Name of person assisting/supporting and position in relation to client
Environment and communication at mealtime
MEALTIME OBSERVATIONS
a. Oral Stage
Main course: Pudding: Drink:

Details: Details: Details:
Start time:
Pulse Ox: Baseline reading:
Bolus size
Lip closure
Lateral tongue movement
Oral motor control
Bolus propulsion
Oral transit time
1186
b. Pharyngeal Stage
Ability to trigger swallow

Laryngeal
elevation and retraction
Voice quality, vocalisations, breathing
Coughing, choking, respiratory distress
Reflux/nasal regurgitation
Residue in mouth
End time:
Pulse Ox:
Variation:

Comments or concerns from Pulse Oximetry:
RESPIRATION
Breath sounds clear pre swallow

No. swallows per bolus & comments
Breath sounds clear post swallow
Concerns of aspiration?
1187
ADDITIONAL NOTES/COMMENTS
ACTION PLAN
⇒
⇒
⇒.
⇒.
⇒.
⇒.
Signed: …………………………………………..…… Date: …………………….
Name: ……………………………………………………………………..………….
Designation: ……………………………………………………………………..………….
1188
GUIDANCE ON THE DEVELOPMENT OF PNEUMONIAS(Ref: Coyle, J (2010) Managing complex

dysphagia in the Community: conference presentation)
1189
RISK FACTORS FOR THE DEVELOPMENT OF CHEST INFECTIONS OR

PNEUMONIA (Ref: Langmore et al, 1998)
Accepted 2 July 2023

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Journal of Intellectual Disability Research doi: 10.1111/jir.13067

Assessing eating and swallowing in adults born with

Abstract Conclusion This study, in which the DAP-SE was

Table 2 Requested changes by the expert panel

Requested changes by the

Requested changes by the

DAP-SE captures relevant aspects of difﬁculties swallowing 2 3

1: Appendix SOCIAL ASPECTS OF MEALTIMES

CONSENT for dysphagia assessment (See

MCA form – ‘Record of Date Comments:

Medications: Dose: Date and Preparation

Current Recent change?

Criteria Signs for concern Observations

ORAL HYGIENE SCREEN

Criteria Signs for concern Observations

ORO-FACIAL FUNCTION ASSESSMENT

Appearance/symmetry Range of movement Tone

Position of head and neck, trunk and hips

Main course: Pudding: Drink:

Main course: Pudding: Drink:

Ability to trigger swallow

Main course: Pudding: Drink:

Breath sounds clear pre swallow

GUIDANCE ON THE DEVELOPMENT OF PNEUMONIAS(Ref: Coyle, J (2010) Managing complex

RISK FACTORS FOR THE DEVELOPMENT OF CHEST INFECTIONS OR

Accepted 2 July 2023

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