living well - arthritis & osteoporosis tasmaniaarthritistas.org.au/wp-content/pdfs/support group...

TA S M A N I A

Arthritis &Osteoporosis

Arthritis

A guide to setting up and maintaining a group

with ArthritisLiving well

PUTTING PEOPLE WITH ARTHRITIS AND OSTEOPOROSIS AT THE CENTRE OF WHAT WE DO

Support Groups

arthritis SUPPORT GROUPS2

Arthritis & Osteoporosis Tasmania is a not-for-profit, non-government incorporated organisation, that provides information and support free of charge of people affected by arthritis, osteoporosis and related musculoskeletal conditions throughout Tasmania. These services are made possible through the generous donations of Tasmanians and we thank them for their continued support. If you would like to know more about the information and support services provided by Arthritis & Osteoporosis Tasmania, call our Helpline 1800 011 041 (toll free).

This project is supported by the Tasmanian Community Fund.

TA S M A N I A


3arthritis SUPPORT GROUPS

CONTENTS

What is a support group? ........................................................................4• Typesofsupportgroups........................................................................................................4

• Limitationsofasupportgroup..............................................................................................5

• AboutArthritis&OsteoporosisTasmania...............................................................................5

• HowcanArthritis&OsteoporosisTasmaniasupportyourgroup?..........................................5

Starting a support group .........................................................................6• Gatherhelp..........................................................................................................................6

• Decidehowtomanagethegroup.........................................................................................6

• Decidewhowillrunthemeetings.........................................................................................6

• Planyourgroup....................................................................................................................6

Whocanjoinyourgroup?.................................................................................................6

Whencanpeoplejoin?......................................................................................................6

Whatisthepurposeofthegroup?....................................................................................6

• Planmeetings.......................................................................................................................7

• Recruitgroupmembers.........................................................................................................7

• Practicalissues......................................................................................................................7

• Thefirstmeeting...................................................................................................................8

Beforethefirstmeeting.....................................................................................................8

Duringthemeeting...........................................................................................................8

Keeping the support group going ..........................................................9• Planahead............................................................................................................................9

• Runningefficientmeetings...................................................................................................9

• Grouprules.........................................................................................................................10

• Guestspeakers...................................................................................................................10

• Memberfeedback...............................................................................................................11

• Ongoingpromotion............................................................................................................11

• Potentialpitfalls..................................................................................................................11

• Tipsforfacilitators..............................................................................................................11

What is the role of the facilitator? .......................................................12• Handlingdifficultsituations.................................................................................................12

Resources and further information ......................................................14• ArthritisHelpline.................................................................................................................14

• Websites.............................................................................................................................14



People with arthritis can:

• shareexperiencesandemotionsinasafeenvironment

• feelunderstood

• knowtheyarenotalone

• giveandreceivesupportfrompeoplefacingthesamechallenges

• exchangeadviceandpracticaltipsaboutlivingwitharthritis

• findnewwaystosolveproblems

• createfriendshipsandreducefeelingsofisolation

• learnaboutandpracticeselfmanagement.

Types of support groups

Therearemanydifferenttypesofsupportgroups,includingonesthat:

• caterforalltypesofarthritis

• focusonaparticularcondition

• areledbyhealthprofessionals

• areorganisedandrunbypeoplewitharthritis

• meetface-to-face

• providesupportviatheinternet,suchasusingFacebookoronlineforums.

WHAT IS A SUPPORT GROUP?

Support groups are a way for people with arthritis, or who have experienced arthritis in their families, to come together and provide

emotional and moral support for one another.


Limitations of a support group

Thepurposeofasupportgroupisnottoprovidecomplexmedicalinformationorrecommendationsforarthritistreatments.Memberswantingspecificinformationabouttheirconditionortreatmentoptionscanbeencouragedtocontacttheirdoctor,rheumatologist,otherhealthcareprofessionalorArthritis&OsteoporosisTasmania.

Manypeoplejoiningasupportgrouparelookingforafriendly,informalsourceofreassuranceandhope.However,ifpeopleareexperiencinggreatemotionaldistressorhaveverycomplexproblems,theymayneedmoresupportandcounsellingthatthegroupcanoffer.ContactArthritis&OsteoporosisTasmaniaformoreadviceandinformationaboutsupportservicesavailableforpeopleinneed.

About Arthritis & Osteoporosis Tasmania

Arthritis&OsteoporosisTasmaniaisanot-for-profitincorporatedorganisation,establishedin1976tomakeapositivedifferencetothelivesofpeopleaffectedbyarthritis,osteoporosisandrelatedconditions.

GovernedbyaBoardofDirectors,Arthritis&OsteoporosisTasmaniaissupportedbyrheumatologists,alliedhealthprofessionals,twofulltimeandtwoparttimestaffmembers,andalargeteamofvolunteers.

AtArthritis&OsteoporosisTasmaniaweunderstandtheseriousimpactthatarthritis,osteoporosisandrelatedconditionscanhaveandofferourserviceswithcompassionandrespectforeachperson’suniqueexperienceandsituation.

How can Arthritis & Osteoporosis Tasmania support your group?

Arthritis&OsteoporosisTasmaniacanactasaresourceforyoursupportgroupinmanyways,including:

• providingeducationsessionsaboutarthritisandosteoporosis,particularlywhenthegroupisfirststarting

• keepingthegroupup-to-datewithinformationaboutarthritis

• assistingyourgrouptofindfree/lowcostmeetingroomsandideasforguestspeakers

• helpingyoutoresolveproblemswithmembersorotherissues

• advertisingyourgroupandupcomingmeetings.

Gather help

Startinganewsupportgroupinvolvesmanytaskssothinkabouthowyoucanbestsharetheworkloadfromtheoutset.Themostsuccessful,longest-runninggroupstendtobeoneswheretheworkissharedbetweenmembers,ratherthanbeingthefullresponsibilityofjustoneperson.Trytofindthreetofourpeopletohelpgetthegroupstarted.Thesemaybepeopleyoualreadyknow,oryoumayneedtospreadthewordbypostingflyersaroundyourlocalarea,oraskingfamily,friendsandArthritis&OsteoporosisTasmaniaforsuggestionsofinterestedpeople.

Decide how to manage the group

Thinkabouthowbesttosharetheworkinvolvedinrunningthegroupandmakingdecisions.Somegroupsmayprefertobemoreinformal,withdifferentpeopletakingonvariousjobsastheycomeup.Othergroupsmightprefertodivideuprolesandresponsibilities,forexamplenominatingafacilitator.Thispersonmightactasthekeycontactpersonforthegroup,liaisewithArthritis&OsteoporosisTasmaniaandotherorganisations,andgenerallyoverseestherunningofthegroup.Thereisnorightorwrongwaytosetupasupportgroupsopickastructurethatworksbestforyourgroup.

Tasmanians


Decide who will run the meetings

Thegroupwillneedtochoosesomeonetorunthesupportgroupmeetings.Somegroupselecttohavetheirfacilitatorrunthesupportgroupmeetings,whileothergroupsmayappointadifferentperson,orpeople,tohelpsharetheload.Alternatively,somegroupsmayencourageallmemberstotakeaturninrunningthemeeting.Thispersonwillhavealargeroletoplayinsettingthetoneofthemeetingsotrytochooseagoodcommunicatorwhoisskilledathandlingdifferenttypesofpersonalitieswithinagroup.

Plan your group

Fromtheoutset,yourgroupwillneedtomakedecisionsregardingthetypeofgroupyouarecreating.Considerthefollowing:

Who can join your group?

• Peoplewithanytypeofarthritisorjustaspecifictypeofarthritis?

• Men,womenorboth?

• Cancarersorsupportpeoplejoin?

• Anyspecificage,languageorethnicgroup?

When can people join?

• Willyourgroupacceptnewmembersatanystageorisitrestrictedtoacertainnumberofpeoplewhojoinatthebeginning?

What is the purpose of the group?

• Tofosteremotionalsupportbetweenmembers(ie.groupfocusesonsharingmembers’experiences/feelingsandbuildingfriendshipsbetweenpeoplethroughsocialgettogethers)?

and/or

• Provideinformation(eg.throughguestspeakersandeducationalsessions)?

and/or

• Raisefunds(eg.fundraisingactivitiesforArthritis&OsteoporosisTasmania)?

STARTING A SUPPORT GROUP

If you or a loved one has arthritis you may be interested in starting an arthritis support group to meet other people facing the same difficulties. This can be a

very rewarding process but it does require a lot of commitment.

Here are some steps you could follow when establishing a new group:


Plan meetings

Whenschedulinggroupmeetings,considerthefollowing:

• Timeofday–areyourpotentialmemberslikelytoworksomayprefereveningmeetings,orwoulddaytimemeetingsbemoresuitable?

• Dayoftheweek–weekdaysareusuallyeasierthanweekendsforrecruitingspeakersandparticipants.

• Frequency–monthly,fortnightlyorweekly?Considerwhetheryourgroupwillcontinuetorunoverschoolholidays.

• Durationofmeeting

• Schedulingthefirstmeeting–giveyourselfenoughtime,atleastfourtosixweeks,topublicisethefirstmeetingthroughoutthecommunity.

• Venue–trytofindsomewherethat:

isfreeorlowcost

hasampleparkingoriseasilyaccessedbypublictransport

isaccessibletopeoplewithdisabilities

hastea/coffeefacilities

canbereservedforallyourmeetingsoverthenextyear

hastoiletsnearby

hascomfortablefurniturethatcanbeeasilyrearranged.

Possiblemeetingroomscanbefoundincommunityhealthcentres,communitycentres,townhalls,libraries,churchhallsandlocalclubs.

For further advice on any of the above issues talk to your accountant or Arthritis & Osteoporosis Tasmania.

Recruit group members

Thinkaboutwherepeoplearemostlikelytohearaboutyourgroup:

• Flyerspostedatcommunityhealthcentres,shoppingcentres,medicalclinics,pharmacies,localchurchesandlibraries

• Announcementsoncommunityradiostations

• Localnewspapers.

Makesureyouincludedetailsofthegroup’sname,membershipeligibility,meetingplace/date/timeandakeycontactperson.

Practical issues

Thereareseveralotherpracticalissuestoconsiderasyouarestartingout:

• Mailing addressYourgroupwillneedamailingaddressforcorrespondence.Youmaychoosetousesomeone’shomeaddressorhireapostofficebox,oraskArthritis&OsteoporosisTasmaniawhetherit’spossibletodirectyourmailtotheiraddress.

• Bank accountsIfyourgroupplansonreceivingandspendingmoney,youmayneedtosetupabankaccountinthegroup’sname.However,mostgroupsonlyrequireasmallamountoffundstofunctioneffectively,takingadvantageoffreemeetingplacesandprovidingtea/coffeeforasmalldonationfromgroupmembers.

• InsuranceContactArthritis&OsteoporosisTasmaniafordetailsonthetypeofinsurancecoverprovidedtoarthritissupportgroups.

• Business/legal issuesMostsupportgroupsdonotrequireanAustralianBusinessNumber(ABN),toregisterforGSTorregisterasadeductiblegiftrecipient.


The first meeting

Thegoalofthefirstmeetingistomakepeoplefeelwelcomesotheywillwanttocomeback.Herearesometipstohelpyourfirstmeetingrunsmoothly:

BefoRe the fiRSt meeting

• Writeanagenda(alistofitems/topicstocoverduringthemeeting).• Haveanattendancebooktorecordnames,phonenumbers,addressesand

emailaddresses.• Bringpensandnametags.• Clearlymarktheroomwherethemeetingisbeingheld–youmayevenwish

toputupsignsdirectingpeopletotheroom.• Arrangechairssoeveryoneiscomfortable,perhapsinacircletofacilitate

groupdiscussion.• Haverefreshments,tea,coffee,sugar,milk,cups,spoonsandnapkinsreadily

available.

DuRing the meeting

• Ensureyouhavesomeonetowarmlygreetpeopleatthedoor.• Askthemtofillouttheirdetailsintheattendancebookandgivethemaname

tag(ensurefacilitatorsandcommitteemembersarealsowearingnametags).• Afterabriefwelcome,includetimeforadiscussionofthepurposeofthe

groupandintroduceafewgroundrules,includingconfidentiality.• Allowtimeforeveryonetobrieflyintroducethemselvestothegroupand

answeraquestionsuchas‘whatisonethingyou’dliketoseecomeoutofthisgroup?’or‘whatissomethingpositiveyoudidthisweek?’

• Finishontime–allowtimeforsocialisingoraninformalchatattheendofthemeetingifpossible.

• Confirmtimeanddateofthenextmeeting(youmayevenliketohavethedetailsprintedonaflyerforpeopletotakewiththemasreminder).

The goal of the

first meeting is

to make people

feel welcome so

they will want to

come back.


Plan ahead

Goodorganisationandplanningisthekeytomaintainingasupportgroup.Planmeetingsseveralmonthsaheadoftime,ratherthanjustworkingonamonth-to-monthbasis.Thiswillgivethegroupenoughtimetobookspeakersandorganiseotheractivitiesorresources,suchasflyers/notices.Whereverpossible,includethemembersofthegroupinplanningandorganisingmeetings,activitiesandothertasks.Thiswillhelpfosterthesensethatthegroupisrunbythegroup,forthegroup.

Running efficient meetings

Heresometipsforthesmoothrunningofameeting:

• Considerplanninganagendabeforethemeeting.Handacopyoftheagendatoattendeesastheyarrivesotheyknowwhattoexpectfromthemeeting.

• Startontime.• Welcomeeveryonetothemeeting,particularly

newmembers.• Letpeopleknowit’sfinetogetupregularlyand

stretch.Possiblyincludeashortstretchbreakinthemeetingiftimepermits.

• Welcometheguestspeaker,ifrelevant.• Outlinetheagendaandwhatwillbecovered

duringthemeeting.• Thanktheguestspeakerfortheirpresentation.• Finishontime.Remindpeopleofthedateand

timeofthenextmeeting.• Ifpossible,encouragepeopletostaybehindfor

refreshmentsandachat.

Group rules

Thegroupmayconsiderdevelopingagreements,orrules,formemberstofollow.Thiscanhelpcreateapositivegroupenvironment,andminimiseconflictduringmeetings.Thesegroundrulescanbegiventomembersastheyjoin,andreinforcedtothegroupattimesthroughouttheyear.

Someexamplesofgroupagreementsinclude:

• Minimisedistractions–turnofforsilenceelectronicdevices.

• Berespectfulofothersandtheirideas.Donottalkoverorinterruptothers.Besurethepersonspeakinghasfinishedbeforecommenting.

• Acceptmembersjustastheyareandavoidmakingjudgements.

• Givefullattentiontothepersonspeakingandavoidhavingsideconversations.

• Maintainconfidentiality–whateverissaidinthegroupstaysinthegroup.

• Encourageparticipation.Supportgroupsaremostbeneficialwhenallparticipantshavetheopportunitytoshareanddiscussissues.Noticesilentpeopleinthegroupandencouragethemtocontribute.Bemindfulofthelimitedtimeandtrytoensureeachpersonhasenoughtimetospeakiftheywish.

• Focusonthepositive.Allowmemberstoexpressnegativeorangryfeelingsbuttrytofocusonrecentsuccessesandnewopportunities.

• Thesupportgroupisnottobeusedasaforumtopromoteparticularproductsortreatments.Appreciatethatwhatworksforonepersonmaynotworkforanother,andacceptthatpeoplemayhaveverydifferentperspectivesandapproachestothemanagementoftheirarthritis.

KEEPING THE SUPPORT GROUP GOING


Guest speakers

Dependingonthegroup,guestspeakersmaybeusefulinclusions.Guestspeakerscancomefromawidevarietyofbackgroundsanddonotnecessarilyneedtobelimitedtoarthritisspecialists.Speakerscouldrangefromhealthprofessionals(eg.physiotherapist,podiatrist)tolocalidentitiesorothercommunityorganisations/groups.Don’tforgettoaskyourmembersforideasofguestspeakers.

Whencontactingpotentialspeakers,trytohavethefollowinginformationavailable:

• timeallocatedfortheirpresentation,includingtimeforquestions

• whattimetheyneedtoarrive,andwhetheryouwouldlikethemtostayfortheremainderofthemeeting

• thegeneralcharacteristicsofyourgroup–gender,age,numberofattendees

• thekindsoftopicsyourmemberswouldlikethemtocoverduringtheirpresentation

• equipmentavailable–forexamplewhiteboardandpens,laptopanddataprojector.

Itisagoodideatocallthespeakeraweekortwobeforethemeetingtoconfirmtheirattendance.

Guest speakers

can come from

a wide variety

of backgrounds

and do not

necessarily need

to be limited

to arthritis

specialists.


Member feedback

Itisimportanttotalktoyourmembersaboutwhetherthegroupiscontinuingtomeettheirneeds,orwhetherthegroupshouldchangeanythinginthewayitruns.Youcouldinformallyaskpeopleface-to-face,orputtogetherashortsurveyeveryyeartoaskformembers’input.

Ongoing promotion

Continuingtopromotethegroupthroughoutthecommunityisimportantforattractingnewmembers.Askmembersforideastheymayhave,aswellas:

• leavingflyersatthelocalhospital,communityhealthcentre,medicalclinics,pharmacies,localchurches,communitycentres,librariesandotherpublicnoticeboards.

• contactingthelocalpaperaboutgettingashortfeatureorarticleaboutthegroupinthepaper.Youmayhaveamemberofthegroupwhoiswillingtobeinterviewedandwouldmakeaninterestingandinspiringstoryforotherstoread.

• contactinglocalcommunityradiostationsaboutincludinginformationaboutmeetingsincommunityannouncements.

• includingthegroup’sdetailsinlocalgovernmentdirectorieslistingcommunitygroupsandevents.

Continuing

to promote

the group

throughout the

community is

important for

attracting new

members.

Potential pitfalls

LoW attenDance

Lookforthesourceoftheproblem,bytalkingtoafewmembersorsurveyingthegroup.Potentialcausesinclude:

• Unpopularspeaker/topic

• Timeoftheyear,forexampleschoolholidays,winter,weather.

• Timingofthemeetings

• Meetinglocation,forexampledifficultywithparkingorusingpublictransport.

• Peoplenolongerneedthesupportgroup.

Thegroupmaychoosetocontinueonwithsmallernumbers,makeafewchangesandtryhardertorecruitnewpeople,orfoldthegroup.

LeaDeR BuRnout

• Considerhavingtwofacilitatorstosupporteachother.

• Ensuremembersareinvolvedinrunningthesupportgroup.Sharethetasksaswidelyasyoucan,identifypotentialleadersandhaveregularopportunitiesforachangeofleadership.Groupsthathaveasmanymembersaspossibleinvolvedintherunning,planningandorganisationofthegrouptendtobemoresuccessful.


Handling difficult situations

Allgroupswillhavetimeswhenproblemsariseduringmeetingsandafacilitatorneedstohavesometoolstodealwiththesecommonlyexperiencedissues.TrysomeofthetipslistedbeloworcontactArthritis&OsteoporosisTasmaniaforfurtheradviceorintervention:

PROBLEM SOLUTIONS

a person is not involving themselves in discussions

• Breakintosmallergroupsorpairsduringdiscussion

• Haveacomments/suggestionsboxformemberstosharetheirideasinwriting

• Haveadiscretechatwiththeparticipant,eitherbeforeorafterameeting,tofindoutwhethertheyarehappywiththeirparticipationoriftheywouldliketocontributemore.

a person is dominating the discussion or being disruptive

• Holdthemeetinginacircleandmovearoundthegroup,givingeachpersonaturntotalk.

• Dividethegroupintopairstoshareideas.

• Activelyinvolveothersduringthediscussion.

• Atimelimitcanbeimposedonspeakersifnecessary.

• Gobacktothegroupagreementifnecessarytoremindeveryoneofacceptablegroupbehaviour.

• Talktothepersoninprivate.Acknowledgetheirvaluablecontributionbutgentlyremindthemthateveryoneinthegroupneedstohaveachancetocontribute.Encouragethemtowaituntilothershavespokenbeforeputtingtheirviewsforward

What is the role of the facilitator?

Facilitatorsplayanessentialroleincreatingasuccessfulgroup.Agoodfacilitatorcan:

• createasafe,friendlyandwelcomingenvironmenttoencouragediscussionandsharingemotions

• stimulatebalanceddiscussionbyrespectingtheviewsofothersandencouragingeveryonetoparticipate

• beanactivelistenerandallowpeopletotelltheirstorywithoutgivingadviceorcounselling

• keepthediscussionfocusedandensurethemeetingrunstotime

• maintainconfidentiality

• followuponquestionsfrommeetings.Youdon’tneedtoalwayshavetheanswerbutitisusefultoknowwhoyoucanrefertoorwheretogoformoreinformation.

• besincere,genuineandgood-humoured.

TIPS FOR FACILITATORS


group negativity • Refocusthediscussionontopositiveaspects–tryaskingforrecentachievementsorsuccesses.

• Allowpeopletosharetheirdifficultiesbutthenencouragethegrouptosharesolutionsfortheproblem.

members of the group spreading misinformation or

promoting particular products or treatments

• Acknowledgetheirexperiencebutreinforcetothegroupthatmanytreatmentsorproductsonthemarket,particularlycomplementarytherapies,arenotwellproven(bothintermsofeffectivenessaswellasrisks/sideeffects).

• Haveadiscussiontoreinforcethatwhatworksforonepersonmaynotnecessarilyworkforanother.

• Discretelytalktothepersonabouthowtotalkpositivelyabouttheirexperienceswithaparticulartreatment,withouttryingtoforceotherstotryit.

Personality clash with a member of the group

• Ifyouhaveaco-facilitator,askthemtohelpyoudealwiththeperson.

• Havesomeonetodebriefwithafterthemeeting–perhapsafellowgroupmemberormaybeafriendorfamilymembernotinvolvedinthegroup.Bemindfulofconfidentiality.

Disagreements between members

• Talktothepeopleinvolvedandtrytoencouragepeopletoseebothsidesofthestory.

• Ifpossible,arrangeatimeforthememberstomeetanddiscusstheirconcernswitheachother.Ifyoufeelyouneedadditionalsupport,contactArthritis&OsteoporosisTasmaniaforadvice.

catering for members with disabilities

• Rearrangefurnituretomakeroomforequipmentsuchaswheelchairs,electricscootersorwalkingframes.

• Askthepersonwhathelptheyneedduringthemeeting,suchasopeningthedoortogotothebathroom,orcarryingtheircupofteabacktotheirseat.

catering for non-english speaking members

• Suggestthatafamilymember,friendortranslatoraccompanythemtothemeeting.Theycanquietlyexplainwhatishappeningandtranslateanyoftheircommentsbacktothegroup.

• EncouragethemtocontactArthritis&OsteoporosisTasmaniaforthevariousinformationsheetsavailableinlanguagesotherthanEnglish.


Arthritis Helpline

TheArthritisHelpline1800011041providesinformation,educationandsupportforpeoplewitharthritis.Staffedbytrainedvolunteersthisserviceprovidesinformationandsupportinrelationtoarthritis,osteoporosisandrelatedmusculoskeletalconditions.TheArthritisHelplinecanalsoprovidearangeofeducationalresourcesaboutthevarioustypesofarthritisandtreatmentstrategies,includinghealthylifestyleandself-managementoptions.

Websites

• Arthritis&OsteoporosisTasmania www.arthritistas.org.au

• ArthritisAustralia www.arthritisaustralia.com.au

• MyJointPain www.myjointpain.org.au

• SelfHelpQueensland www.selfhelpqld.org.au

RESOURCES AND FURTHER INFORMATION


19AMainRoadMoonahTAS7009Tel:0362284824Fax:0362283486Email:[email protected]

arthritis helplinefreecall: 1800 011 041

TA S M A N I A


DecLaRation of PRivacy

The Arthritis Foundation acknowledges and respects the privacy of individuals. This information is being collected for the purposes of processing your application or enquiry, keeping you informed of upcoming events, information and support programs, and assisting us in providing our services and programs. The intended recipient of the information is the Arthritis Foundation. The provision of the information is voluntary, but if not provided, we may be unable to process your application or enquiry. You have a right of access to, and alteration of, personal information concerning yourself in accordance with the Act. Please direct any enquiries you may have to our Privacy Officer.

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