Background & aims: Fluid thickeners are an important and commonly-used strategy to manage swallowing

difficulties however there are no reports of the perceptions and experiences of parents of children

using thickeners.

Methods: Semi-structured interviews of 14 parents having a child using fluid thickeners due to swallowing

difficulties.

Results: Parents reported improvements in quality of life and health through the use of thickeners. They

also reported persistent difficulties in the use of thickeners.

Conclusions: Results showed unanimous goodwill and positive attitudes towards thickeners and their

observed benefits, tempered by common difficulties with thickeners (variability and unpredictability).

There remains scope for improvements of commercial thickeners and in information conveyed to users

Hanson, B

Jebson, EM

Smith, CH

UCL Discovery

lable at ScienceDirectClinical Nutrition 33 (2014) 171e174Contents lists avaiClinical Nutritionjournal homepage: ht tp: / /www.elsevier .com/locate/c lnuShort communicationThickened ﬂuids: Investigation of users’ experiences and perceptionsqChristina H. Smith a,*, Emma M. Jebson b, Ben Hanson ca Psychology and Language Sciences, University College London, London WC1N 1PF, UKbAdult Speech and Language Therapy, Northwick Park Hospital, Watford Road, Middlesex HA1 3UJ, UKcMechanical Engineering, University College London, London WC1E 7JE, UKa r t i c l e i n f oArticle history:Received 1 July 2013Accepted 17 October 2013Keywords:HealthQuality of lifeModiﬁed dietsFluid thickenersChildrenq This is an open-access article distributed undeCommons Attribution License, which permits unresreproduction in any medium, provided the original au* Corresponding author. Psychology and LanguageLondon, Chandler House, 2 Wakeﬁeld Street, London7679 4233; fax: þ44 20 7679 4238.E-mail address: christina.smith@ucl.ac.uk (C.H. Sm0261-5614/$ e see front matter  2013 The Authors.http://dx.doi.org/10.1016/j.clnu.2013.10.012s u m m a r yBackground & aims: Fluid thickeners are an important and commonly-used strategy to manage swal-lowing difﬁculties however there are no reports of the perceptions and experiences of parents of childrenusing thickeners.Methods: Semi-structured interviews of 14 parents having a child using ﬂuid thickeners due to swal-lowing difﬁculties.Results: Parents reported improvements in quality of life and health through the use of thickeners. Theyalso reported persistent difﬁculties in the use of thickeners.Conclusions: Results showed unanimous goodwill and positive attitudes towards thickeners and theirobserved beneﬁts, tempered by common difﬁculties with thickeners (variability and unpredictability).There remains scope for improvements of commercial thickeners and in information conveyed to users. 2013 The Authors. Published by Elsevier Ltd and European Society for Clinical Nutrition andMetabolism. All rights reserved.1. IntroductionChildren experience difﬁculties swallowing as a result ofneurological and structural disorders. Being unable to safelyswallow sufﬁcient food and ﬂuid impacts on both health andquality of life1 and may necessitate enteral feeding.2 Health effectsinclude malnutrition, dehydration and chest infections fromaspiration (food or ﬂuid entering the lungs) which can be fatal ifunidentiﬁed or untreated. Quality of life effects include restrictionof diet choice, social exclusion during mealtimes, and coughingand choking.The most prevalent intervention to facilitate safe swallowing istexture modiﬁcation, including thickening of ﬂuids.3,4 This is animportant aspect of care for parents whose children requirethickeners, however no studies have yet documented their viewsand experiences.r the terms of the Creativetricted use, distribution, andthor and source are credited.Sciences, University CollegeWC1N 1PF, UK. Tel.: þ44 20ith).Published by Elsevier Ltd and Eur2. MethodsThis cross-sectional exploratory study used semi-structuredinterviews (Table 1) to obtain the opinions of 14 parents5 whoregularly use thickeners to prepare drinks for their children.The parents self-selected to participate from information sheetsdistributed through schools and non-governmental organisations.6One parent was interviewed per child. The interviews were face-to-face, approximately 1 h, and arranged at the parents’ conveniencewithin their homes or workplace.Interviews were recorded and transcriptions were validated bythe parents, then analysed using thematic coding and constantcomparison.5,7 Half of the interviews were validated by an inde-pendent researcher. No changes were made to the transcriptionsfollowing parental review, and the codes were not changedfollowing independent validation.The study protocol and consent procedurewere approved by thelocal institutional Research Ethics Committee.3. ResultsThe children were aged 2e12 with chronic medical conditionsand had been using thickeners for over 10months (Table 2). A rangeof thickeners were used (Table 3) and two children received acombination of oral and enteral nutrition (Table 2). One child wasopean Society for Clinical Nutrition and Metabolism. All rights reserved.Table 1Questions guiding discussion in semi-structured interview.Background information regarding your child:1. Age2. Medical diagnosis/diagnoses (if any)3. Brief history of swallowing difﬁculties e when did your child ﬁrst starthaving problems with his/her swallowing?4. Symptoms of swallowing difﬁculties5. Current nutrition and hydration (i.e. orally, or via a tube or PEG)? If enteralnutrition, any oral intake?Thickener:1. Thickener used2. Age when began to use drinks thickeners?3. Were you given any instructions to help you prepare drinks with thickener?4. Did anyone demonstrate how to prepare a drink with thickener?5. Were you told to use different amounts of thickener for different drinks(e.g. hot/cold drinks) or at different times (e.g. if your child is unwell)?6. How conﬁdent did you feel when you ﬁrst started using thickeners7. How conﬁdent do you feel now when using thickenersUse of thickener:1. Do you experience difﬁculties when using thickener?2. Do you feel that using thickener helps your child?Table 3Fluid thickener.Name of commercialthickenerManufacturer ofthickenerWebsiteThixo-D Sutherland Health Care www.sutherlandhealth.comNutilis Nutricia Nutilis, Danone www.danone.comThick & Easy Thick and Easy,Fresenius-Kabiwww.fresenius-kabi.comRESOURCEThickenUpNestlé Health Care www.nestle.comCarobel Cow & Gate www.cowandgate.co.ukVita-quick Vitaﬂo www.vitaﬂo.co.ukC.H. Smith et al. / Clinical Nutrition 33 (2014) 171e174172prescribed thickeners for oral-stage difﬁculties; three for pharyn-geal difﬁculties and ten for combined oral-pharyngeal difﬁculties.Aspiration on normal ﬂuids had been identiﬁed for ten childrenprior to commencing thickeners. Of the fourteen children, threewere recommended thickeners to manage both swallowing andreﬂux-related symptoms.Three themes emerged from the interview coding and aresummarised below (number in parenthesis after quotation refers tothe parent, detailed on Table 2, who made the comment):1. Challenges at the early stage of using thickenersDuring the early stage of using thickeners, parents struggledwith both the emotional and practical aspects. Seven parentsreported being given no information on how to mix thickeners toobtain the optimum consistency beyond the generic informationon the container of thickener. In contrast three parents weregiven demonstrations on mixing thickeners by their Speech andLanguage Therapist and all reported that this was helpful. Par-ents reported going into school and providing ‘demonstrations’Table 2Biographical information.ParentnumberChild’s agein yearsChild’sgenderMedical diagnoses N1 10 Boy Cerebral palsy, seizures, GORD Fu2 5 Boy Lissencephaly Fu3 3 Girl No medical diagnosis Fu4 11 Girl Cerebral palsy, hydrocephalus, seizures, visual &hearing impairmentPE5 4 Boy Cerebral Palsy, chronic lung disease Fu(p6 4 Girl Alagille syndrome H7 2 Boy Down’s syndrome, congenital heart disease Fu8 12 Girl Down’s syndrome Fu9 6 Girl Congenital cytomegalovirus, globaldevelopmental delayFu10 3 Girl Down’s syndrome, congenital heart disease,GORD, hearing impairmentFu11 7 Boy Down’s syndrome Fu12 5 Girl Down’s syndrome Fu(p13 6 Boy Down’s syndrome, GORD, visual and hearingimpairments, severe learning disabilityFu14 3 Boy Down’s syndrome, Hirschsprung’s disease, GORD Futo staff to ensure drinks were prepared appropriately for theirchild.It made me extremely depressed. (3)I don’t like the thickeners.. I wasn’t happy to use them. (5)We had no information on how or why [thickeners] worked. (4)I felt that this was very poorly handled in terms of the emotionalimpact it can have on a parent. (2)Five families began using thickeners when their child was usinga bottle; two of these families experienced unanticipated difﬁ-culties ﬁnding appropriate teats to manage the increased thicknessof ﬂuid. One mother explained,It didn’t occur to me that I’d need wider holes in the teats I wasusing. This meant that for two days my daughter was really frus-trated.. (3)This mother resorted to widening the holes in teats using aneedle. Some families made difﬁcult decisions balancing what theyperceived as risk and quality of lifeMy son can’t make choices about anything that he does, every-thing’s done to him, but he can make choices about his food e hecan close his mouth and refuse to open it.. There really is nowhereelse in his world where he illustrates preferences as much as hedoes when feeding. We thought that unless the risks are veryobvious, we can’t deny him this area of life (2)utritional intake Age ﬁrst usedthickenerThickener used Approx number ofyears thickener usedll oral diet 6 months Thixo-D 9ll oral diet 3 years Thick & Easy 2ll oral diet 9 months Carobel 2G with oral for pleasure 7 years ThickenUp 4ll oral dietreviously PEG)2 years Thick & Easy 2alf oral and half PEG 18 months Thick & Easy 3ll oral diet 15 months Nutilis <1 (10 months)ll oral diet 6 years Thick & Easy 6ll oral diet 4 years Vitaquick 2ll oral diet 2 years ThickenUp 1ll oral diet 12 months Thick & Easy 6ll oral dietreviously PEG)‘Baby’ Carobel 4ll oral diet 2 years ThickenUp 4ll oral diet 2 years 1 1C.H. Smith et al. / Clinical Nutrition 33 (2014) 171e174 1732. Persistent difﬁculties with thickenersThree persistent difﬁculties were commonly reported by par-ents. The ﬁrst (12 parents) was lumpiness and poor mixing of thepowder in the drinks; parents used spoons, whisks, sieves, andwarmed drinks in efforts to reduce lumps.Rather than adding a bit of extra powder if it comes out too thin, youmight as well just start again, because it never comes out the rightconsistency. On the other extreme, if it’s too thick and you put a bit ofwater in it, that’s a bit more successful, that seems to work. (1)If you whisk it quick with a fork and add the thickener slowly, itworks well. (11)There’s always a couple of lumps in there [juice] that you can’t stirout. (7)The second difﬁculty reported (8 parents) was obtaining thecorrect thickness with a variety of different ﬂuids..works differently for differentﬂuids.a lot of it is trial and error. Thenutritional supplement shehas is likeamilkydrink; if youuse the sameamount of thickener. it goes like concrete: really, really hard. (9).with milk that after it is thickened it does go thinner again overtime, whereas with juice it stays. (11)Even juice I have to slightly warm to get it to dissolve then use aspoon to bash all the lumps out. I have also tried different milk-shakes which go horrible; they have watery bits and chunks in it, itlooks vile. (3)The third difﬁculty reported (9 parents) was change over time,although one parent reported overcoming this by storing drinks inthe fridge. (12).starts to separate over time. (6)[problems] The thickening when left to stand. (10)Two parents reported difﬁculties with thickening medicationsand six reported problems when saliva entered the container.We did have questions about the Movicol, as it doesn’t thicken; noone told me this, and it’s a big problem. (12)Saliva: this is a big problem. When saliva gets in it sits on the top ofthe drink and ruins the thickness, you just need to start again. (1)Four parents reported a perception of altered taste withthickenerMy son doesn’t like drinks other than water but the thickener reallychanges the taste in water. In Ribena you can get away with itmore, but it tastes horrible in water. (5)I know it doesn’t really taste, but the thickness feels like a taste. (3)3. Positive effects of the thickenersDespite the difﬁculties in preparing drinks and attaining conﬁ-dence that the correct thickness was obtained, there was consensusthat thickeners helped their children’s healthSince we started using [thickener], my goodness, we’ve had muchless chest infections. (8).when he wasn’t drinking he was suffering with constipation butit was such a challenge to get him to drink. Now he enjoys drinkingand that’s very important. (7)They [thickeners] have been a lifesaver for us. (12)He wasn’t drinking before, he had permanent pneumonia. There’sbeen an 80% decrease in his respiration issues and he’s drinking is100% better. (14)I’m just so grateful that we have access to these things. (13)Parents also report an improvement in quality of life through theuse of thickenersShe came on immediately.feeding was not just a necessity for herto survive from that point; it was something nice for her, somethingpleasurable. She loves her milk now. (3)Using the thickener means we can balance my daughter’s feedswith the family’s diet. (6)He used to have problems sleeping because he’d be thirsty atnight.Our daily routine is better, sleep is better, he’s less distressedand has fewer respiratory problems. (14)4. DiscussionThe parents in this study unanimously identiﬁed value in ﬂuidthickeners in improving both their child’s quality of life byenhancing enjoyment of drinking, and in improved healththrough, for example, an increase in the amount of ﬂuid drunk,and a reduction in the incidence of chest infections. There wasconsiderable goodwill towards thickeners because of perceivedbeneﬁts.However, the parents reported difﬁculties and frustrationsresulting from the variable behaviour of the thickeners withdifferent base ﬂuids; this was compounded by a reported lack ofinformation and support. This issue could be tackled by providingdetailed written information about how and why thickeners areused, and a practical tutorial session might assist in parentsadjusting to using thickeners. More-detailed information couldthen be provided online or via helpline: how thickeners performwith different drinks, at different temperatures, over time, and theeffect of saliva.8 The use of thickeners within this cohort is a long-term endeavour and further information regarding thickeners isrequired on an on-going basis. Alongside this, further improve-ments are required from the products themselves. Since peoplewho use and consume thickeners are often disempowered, wewould encourage further research and development to incorporateusers’ views with the aim of improving quality of life for users andfamilies.Limitations: The population group is hard-to-reach and thusonly self-selecting participants were included. Nonetheless, theresponses covered a range of opinions and experiences. Whilesmall, the study size is appropriate for the methods used.9Sources of fundingNo study sponsors.Statement of authorshipCS conceived the study and design, contributed to the analysisand wrote the manuscript. EJ assisted with the conception anddesign, completed the data collection and analysis, and helped draftthe manuscript. BH assisted with the conception and design, andhelped draft the manuscript. All authors read and approved theﬁnal manuscript.C.H. Smith et al. / Clinical Nutrition 33 (2014) 171e174174Conﬂict of interest statementBH has received funding for separate research projects and pre-sentations fromFresenius-Kabi Ltd and theNestle Nutrition Institute.AcknowledgementsThanks to Janet Wood for guidance on the thematic analysis andcoding and to Annabel Dixon-Dewfall for completing the codingreliability.References1. Royal College of Physicians. Oral feeding difﬁculties and dilemmas. London: RoyalCollege of Physicians; 2010.2. Lochs H, Allison SP, Meier R, Pirlich M, Kondrup J, Schneider St, et al. Intro-duction to the ESPEN guidelines on enteral nutrition: terminology, deﬁnitionsand general topics 2006;25:180e6.3. Garcia JM, Chambers E, Molander M. Thickened liquids: practice patterns ofspeech-language pathologists. Am J Speech Lang Pathol 2005;14:4e13.4. Logemann JA, Gensler G, Robbins J, Lindblad AS, Brandt D, Hind JA, et al.A randomized study of three interventions for aspiration of thin liquids in pa-tients with dementia or Parkinson’s disease. J Speech Lang Hear Res 2008;51:173e83.5. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol2006;3:77e101.6. Marshall M. Sampling for qualitative research. Fam Pract 1996;13:522e5.7. Sandelowski M. Whatever happened to qualitative description? Res Nurs Health2000;23:334e40.8. Hanson B, O’Leary M, Smith CH. The effect of saliva on the viscosity of thickeneddrinks. Dysphagia 2012;27:10e9.9. Dworkin SL. Sample size policy for qualitative studies using in-depth interviews.Arch Sex Behavi 2012;41:1319e20.

Thickened fluids: Investigation of users' experiences and perceptions.

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Thickened fluids: Investigation of users' experiences and perceptions.

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