Public Engagement and Involvement with Research Case Study

Name: Dr Pauline Ashfield-Watt

Job Role: Research Fellow

Division: Division of Population Health

The Research: Pauline is interested in using digital and arts-based approaches to improving health. She has two roles within the Division of Population Medicine. She is a Study Manager of HealthWise Wales – a confidential online survey of adults living in Wales which will be used to improve future health. She also undertakes research to improve the identification and treatment of familial hypercholesterolaemia (FH), inherited high cholesterol. Across her research Pauline is interested in improving people’s awareness, understanding and engagement with health as part of their daily routine.

The Engagement:The key ‘publics’: Familial Hypercholesterolaemia (FH) support services based in the UK, third sector organisations such as HEART UK and the British Heart Foundation, patient organisations such as the All Wales FH Family Forum, children, young people and their families and FH Health service professionals.

The types of engagement: Informing and educating newly diagnosed patients of FH and their families.

The Involvement:The key ‘publics’: Children and young people diagnosed with FH.

The types of involvement: Pauline wanted to use a method of facilitating children and young people (CYP) to discuss their experiences of FH that was fun and interesting to children and that could subsequently be shared with other children, their families and health professionals. Short form videos are popular and can be made and viewed on a range of devices which are accessible to children. Video-making is a collaborative and fun activity which has been shown to improve engagement and literacy in the classroom. This project tested the feasibility of using video making workshops as the means of engaging children and empowering them to have their say about what it is like to live with FH. A sketchnoting method was used for making the video because it is novel, fun to do, visually appealing and it facilitates anonymity in cases where the video maker does not want to be identified.

This project was undertaken to explore whether making sketchnote videos could be used to engage children and young people with FH. The project involved workshops which were dynamic in that they had the aim of making a video, but were structured to respond to the needs that the children identified. Prior to the first workshop Pauline asked children to think about what information would help someone who had just found out they have FH. Some of the issues raised by the children and young people showed misunderstandings about the condition and these issues were revisited at a subsequent workshop and incorporated into the narrative of the videos.

The Motivation: Pauline wanted to provide information about living with FH from a child’s perspective to inform newly diagnosed young people and their families about FH and for training health professionals.

“It was important to me that genuine, authentic information and experiences were portrayed. I chose a method that I hoped would be fun and useful for the children involved and would also yield a video that appeals to and informs others about FH.”

The Professional Development:Pauline’s original vision was that the young people would take the lead on video content and story line because she wanted their authentic story to come through with as little influence from her and the videographer as possible. In practice, this was difficult to achieve because the children needed clear instructions in order to make a video within a 2-3 hour timeframe. The video also needed to be of sufficient quality to be shared with other CYP with FH.

Involving CYP with FH in this way really helped Pauline to learn what they understood and misunderstood about FH. “The workshop format enabled me to address these issues and incorporate them into the sessions. This did however mean that the workshops took longer than anticipated.”

The Learning:This project was really useful in trying out the sketchnote video method – important lessons were learnt about how to structure the workshop, manage expectations, what is achievable in the timeframe and what was important to the CYP. It generated lots of ideas for future workshops and reassured Pauline that the method really has potential for use in other engagement/involvement research contexts.

Another important learning from this experience is to take the time to truly know and understand your target audience.

“CYP have busy social lives and it was therefore difficult to schedule workshops when enough children could attend. The CYP also needed more help with creating the storyline and narrative. To some, writing the script felt onerous and perhaps too much like schoolwork. More use of the children’s own words from the brainstorming session may have helped with this.”

Finally, Pauline managed this whole process single handed, acting as facilitator of the workshop in addition to everything else: “ It was certainly challenging to keep several balls in the air at once: working with children to encourage them to discuss issues, noting issues to return to and thinking about how to tackle those issues, teaching the sketchnoting method, helping the CYP develop ideas, storyline, illustrations and narrative and to deliver these on film. The videographer was really helpful with all of this and played a key role in making it work.”

“In hindsight, it might have been useful to me to have had additional support to assist with the workshop.”

Pauline’s top tips:“Don’t underestimate how much time engagement and co-production takes and how much work you will have to put in to enable other people to have their say. That said, the benefits are really worth the effort.”

Chat to Pauline further about her experiences :

ashfield-wattp1@cardiff.ac.uk

02920 743864

Enw: Dr Pauline Ashfield-Watt

Swydd: Research Fellow

Isadran: Isadran Iechyd y Boblogaeth

Yr Ymchwil: Mae gan Pauline ddiddordeb mewn defnyddio dulliau digidol a’r celfyddydau i wella iechyd. Mae ganddi ddwy rôl yn Isadran Meddygaeth y Boblogaeth, sef Rheolwr Astudio HealthWise Cymru - arolwg cyfrinachol ar y we o oedolion sy’n byw yng Nghymru (defnyddir i wella iechyd yn y dyfodol) - a chynnal ymchwil i wella ffyrdd o adnabod a thrin hypercolesterolaemia cynhenid (FH), colesterol uchel a etifeddwyd. O ran ei hymchwil, mae gan Pauline ddiddordeb mewn gwella ymwybyddiaeth a dealltwriaeth pobl o iechyd, a’r modd maen nhw’n ymwneud ag e yn rhan o’u trefn feunyddiol.

Yr Ymgysylltu:Y cynulleidfaoedd allweddol: Gwasanaethau cynorthwyo’r rhai sy’n byw gyda hypercolesterolaemia cynhenid yn y deyrnas hon; mudiadau’r trydydd sector megis HEART UK a Sefydliad y Galon Prydain; mudiadau i gleifion megis Fforwm Teuluoedd FH Cymru; plant, pobl ifanc a’u teuluoedd; proffesiynolion materion FH y GIG.

Y math o ymgysylltu: Hysbysu ac addysgu cleifion mae’r cyflwr newydd gael ei ganfod ynddyn nhw, ynghyd â’u teuluoedd.

Yr ymwneud:Y cynulleidfaoedd allweddol: Plant a phobl ifanc mae’r cyflwr wedi’i ganfod ynddyn nhw.

Dyma’r math o ymwneud: Roedd Pauline am helpu plant a phobl ifanc i drafod eu profiad o’r cyflwr trwy ddull diddanol a diddorol y byddai modd ei ddefnyddio ymhlith plant eraill, eu teuluoedd a phroffesiynolion iechyd. Mae fideos byrion yn boblogaidd ac mae modd eu llunio a’u gwylio trwy amryw ddyfeisiau sy’n addas i blant. Mae llunio fideo yn weithgaredd cydweithredol a diddorol ac mae tystiolaeth wedi dangos y bydd yn gwella ymgysylltu a llythrennedd yn yr ystafell ddosbarth. Profodd y prosiect hwn ddichonoldeb defnyddio gweithdai llunio fideos i ymgysylltu â phlant a’u galluogi i ddweud eu dweud am eu profiad o fyw gyda hypercolesterolaemia cynhenid. Defnyddiwyd sketchnoting i lunio fideos achos ei fod yn ddull arloesol a diddorol sy’n apelio at y llygad ac yn galluogi’r sawl sy’n llunio’r fideo i fod yn anhysbys os nad yw am ddatgelu ei enw.

Cynhaliwyd y prosiect hwn i astudio a fyddai modd llunio fideos trwy sketchnote i ymgysylltu â phlant a phobl ifanc ac arnynt hypercolesterolaemia. Roedd yn y prosiect weithdai lle y byddai angen i blant lunio fideos, ond roedd y gweithdai wedi’u trefnu yn ôl anghenion roedd y plant eu hunain wedi’u nodi. Cyn y gweithdy cyntaf, gofynnodd Pauline i’r plant feddwl am wybodaeth fyddai’n helpu rhywun oedd newydd ddysgu bod hypercolesterolaemia arno. Dangosodd rhai o’r materion a gododd y plant a’r bobl ifanc fod camddealltwriaeth ynglŷn â’r cyflwr. Trafodwyd y materion hynny mewn gweithdy dilynol a’u cynnwys yn naratif y fideos.

Astudiaethauam ymgysylltu â’r cyhoedd ynghylch ymchwil

Y Cymhelliant: Roedd Pauline am gynnig gwybodaeth am fyw gyda’r cyflwr o safbwynt plentyn i hysbysu pobl ifanc roedd newydd ei ganfod ynddyn nhw ynghyd â’u teuluoedd a phroffesiynolion iechyd.

“Roedd yn bwysig cyfleu gwybodaeth a phrofiadau dilys. Dewisais ddull roeddwn i’n gobeithio y byddai’n un diddanol a defnyddiol i’r plant o dan sylw - fel y gallen ni lunio fideo fyddai’n apelio at bobl ac yn eu hysbysu am hypercolesterolaemia.”

Y Datblygu Proffesiynol:Delfryd gwreiddiol Pauline oedd mai’r bobl ifanc fyddai’n llywio cynnwys a llinell stori’r fideo achos ei bod am i’w hanes dilys ddod trwodd heb angen iddi hi na’r fideograffydd ddylanwadu’n fawr arno. Roedd yn anodd gwneud hynny, fodd bynnag, am fod angen rhoi cyfarwyddiadau eglur i’r plant er mwyn llunio fideo cyn pen 2-3 awr. Rhaid i fideo fod yn ddigon da i’w lledaenu ymhlith plant a phobl ifanc eraill ac arnynt y cyflwr, hefyd.

Mae cynnwys plant a phobl ifanc sy’n byw gyda’r cyflwr wedi bod o gymorth mawr i Pauline wrth ddysgu faint maen nhw’n ei ddeall ac yn ei gamddeall amdano. “Mae trefn y gweithdy wedi fy ngalluogi i fynd i’r afael â’r materion hynny a’u cynnwys yn y sesiynau. O ganlyniad, fodd bynnag, roedd angen mwy o amser na’r disgwyl i orffen y fideos.”

Y Dysgu:Roedd y prosiect hwn yn ddefnyddiol iawn ynglŷn â phrofi dull llunio fideos sketchnote – dysgwyd gwersi o ran trefnu gweithdy, rheoli disgwyliadau, pennu’r hyn sy’n ymarferol yn yr amserlen a nodi’r hyn sy’n bwysig i’r plant a’r bobl ifanc. Deilliodd ohono sawl syniad ar gyfer gweithdai’r dyfodol. Tawelodd feddwl Pauline y byddai modd defnyddio’r dull mewn cyd-destunau ymchwil ac ymgysylltu eraill, hefyd.

Gwers bwysig arall ddaeth o’r prosiect oedd bod angen peth amser i ddod i adnabod y gynulleidfa rydych chi’n anelu ati.

“Mae bywydau cymdeithasol plant a phobl ifanc yn brysur ac, felly, roedd yn anodd trefnu gweithdai y gallai digon ddod iddynt. Roedd angen rhagor o gymorth ar y plant a’r bobl ifanc i greu stori a naratif, hefyd. Roedd ysgrifennu sgript yn feichus i rai - yn rhy debyg i waith ysgol, efallai. Pe baen ni wedi defnyddio mwy o eiriau’r plant ar ôl sesiynau hel syniadau, gallasai fod yn well.”

Yn olaf, llwyddodd Pauline i reoli’r holl broses ar ei phen ei hun, gan weithredu’n hwylusydd y gweithdy yn ogystal â phopeth arall: “Roedd yn anodd cyflawni sawl gorchwyl yr un pryd: gweithio gyda’r plant a’u hannog i drafod materion, nodi materion i’w trafod eto a’r ffordd orau o wneud hynny, dysgu sut i ddefnyddio dull sketchnoting, helpu plant a phobl ifanc i fireinio syniadau, llinell stori, lluniau a’r naratif a chyfleu hynny i gyd trwy gyfrwng ffilm. Roedd y fideograffydd o gymorth mawr drwy gydol y broses, gan gyflawni rôl allweddol yn y gwaith.”

“O edrych yn ôl, efallai y byddai rhagor o gymorth i lywio’r gweithdy wedi bod yn ddefnyddiol.”

Gair i gall:“Rhaid sylweddoli faint o amser y bydd ei angen ar gyfer yr ymgysylltu a’r cydgynhyrchu, a faint o waith y bydd rhaid ei gyflawni i alluogi pobl eraill i ddweud eu dweud. Wedi dweud hynny, mae’n werth yr ymdrech.”

Mae croeso ichi gysylltu â Pauline am ei gwaith:

ashfield-wattp1@cardiff.ac.uk

02920 743864