‘the alopeciologist’ May 2014 (c) Alopecia Areata Support Association 2014 www.alopeciavictoria.org.au

Autumn 2014

Patient and Family Centred Care

the alopeciologist

‘the alopeciologist’ May 2014 (c) Alopecia Areata Support Association 2014 www.alopeciavictoria.org.au

This May 2014 edition of the AASA news-letter, has two themes. One is the conceptof ‘patient and family centred care’ and

the other is an extension of our previous discus-sion of the important but rarely discussed com-plexities around wearing wigs. We have alsoincluded a new and interesting initiative from theUK called ‘Option Grids’.

In the August newsletter last year wefeatured the research being conducted in Scot-land by Karena Moore-Millar and her col-leagues. Karena’s focus has been on theexperience of being a wig-wearer and now someof that research has been published. Read thesummary on page 5.

One of our committee members,Monique Cormier writes of her own experience.She has become skilled at responding to differentsituations and people when talking about herwig. She writes about how she negotiates a vari-

ety of challenges. In our ‘What can I do?’ sec-tion on page 8 where we’ve got some relevanthelpful resources.

On March 13th AASA members TerriBeardwood and Pat Crotty participated in a staffdevelopment session at the Skin and CancerFoundation. The session was led by Dr CatherineCrock of the Royal Children’s Hospital. DrCrock is the Executive Director,Australian Institute for Patient and Family Cen-tred Care and is probably best known as theChair and Founder of the Hush Music Founda-tion. Dr Crock spoke about the worldwide move-ment towards engaging patients and theirfamilies along with health professionals in im-proving the medical care which patients receiveand the resulting satisfaction levels for healthcare professionals. Dr Crock and her colleagueshave been able to apply this at the Royal Child-rens’ with some quite inspiring consequences.

Terri gave an honest and thoughtfulpresentation from an alopecia patient’s perspec-tive and her comments have already resulted in anumber of changes in the way the Skin and Can-cer Foundation clinics work, such as improvingthe information that patients receive before theirfirst appointment. A summary of the session ison page 6.

And finally we have some backgroundto the notion of ‘alopeciology’ and‘alopeciologist’ (below) and a little more about‘Rosie the Riveter’ of the iconic image on thecover (page 7). Her slogan

“WE CAN DO IT!”

is, amongst other things, an encouragement topeople with alopecia to work with health profes-sionals to make services more patient and familycentred.

Mastering the art of living with alopecia = ALOPECIOLOGY

Make your own word pictures for free. Go to taxedo.com or wordle.com

The first use of the term ‘alopeciologist’ we can identify, comes from a 2012 course for doctors in Canadaconducted by Dr Jeff Donovan, a dermatologist. The course was called, “Basic Skills for the Developing Alopeciologist".What a great word! But who better to be experts in alopecia, than the people who live the experience every day. That’syou and me.

Wikipedia tells us that ‘ology’is a ‘combining word ending’, that is used to name a science or a body ofknowledge, such as theology or sociology. What better word to convey what we become experts in (and can teach othersabout), than alopeciology. Terri Beardwood’s presentation to health professionals at the Skin and Cancer Foundation issurely a great example of the practice of alopeciology!

“Alopeciology” then, can be seen as a positive statement about the mastery of an area of knowledge (livingwith alopecia) along with of a set of related skills. Some of those skills are on fine display in this issue, in MoniqueCormier’s article and in Karena Moore-Millar’s work. So, welcome to ‘the alopeciologist’! It’s all about ‘alopeciology’ -mastering the art of living with alopecia! We can do it!

What is alopeciology and what is an alopeciologist?

Alopecia Areata Support Association IncVicNo. A 0017172 Y

PO Box 89CamberwellVictoria 3124AustraliaTel: (03) 9513 8580 (Alopecia Helpline)aasavic@gmail.comwww.alopeciavictoria.org.au

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‘the alopeciologist’ May 2014 (c) Alopecia Areata Support Association 2014 www.alopeciavictoria.org.au

In 2013 the British Medical Journal said, “.......partnering with patients must beseen as far more than the latest route to healthcare efficiency. It’s about afundamental shift in the power structure in healthcare and a renewed focus on thecore mission of health systems. We need to accept that expertise in health andillness lies outside as much as inside medical circles and that working alongsidepatients, their families, local communities, civil society organisations, and expertsin other sectors is essential to improving health”.British Medical Journal 2013;346:f2614

Alopecia Areata Support Association Inc VicNo A0017172Y

PO Box 89Camberwell

Victoria 3124Australia

Tel: (03) 9513 8580aasavic@gmail.com

www.alopeciavictoria.org.au

to tell, or not to tell....

To tell, or not to tell…

I began wearing wigs about threeyears ago. I had just turned 30

and for me, the decline from a fewpatches to what has now becomealopecia universalis was a twelveyear process, so I was able to psy-chologically prepare myself for theprospect of becoming a wig wearer.I thought of it as an opportunity totry out new hair styles and coloursand decided that I would tell peoplethat I was wearing a wig. I chosethis course of action because I wasconvinced in those early days that

everyone would be able to tell thatit was a wig anyway and I thoughtit might be good to do a bit ofawareness raising about alopecia.In addition, I thought that if I wasplanning to change my hair stylefairly often, that an upfront expla-nation would prevent odd staresand awkward questions. So beganwhat I now think of as my socialexperiment with telling people thatI have alopecia.

My ‘script’ for telling people goessomething like this: I usually waituntil someone comments on myhair and then I say “actually, I wearwigs. I have an auto-immune con-dition called alopecia which causesmy hair to fall out”. I then explainthat it’s not painful or life threaten-ing, and then reassure the personI’ve told that I’m used to it, andthat they haven’t inadvertentlymade me reveal a shocking secret. Itry to be quite matter of fact aboutit. The reactions to this revelationcan vary:

The ideal…Let me begin with the ideal reac-tion to the announcement that I amwearing a wig. This occurs whenthe person I have told reacts withempathy, but not pity. They may be

surprised, but they don’t actshocked. They seem genuinely in-terested and ask intelligent ques-tions about both alopecia and thewig, and are complimentary abouthow the wig looks. These encoun-ters leave me feeling self-confidentand secure in my relationship withothers. Luckily, I would say thatabout half the people I have toldabout my wig react in this way.

The annoying…In between the ideal and the awk-ward are what I consider to be the‘annoying’ responses. Ironically,these are most often conveyed byclose friends and family who don’talways feel the need to filter theircommentary. They can range frombeing critical of my wig: “Hmmm,I think I like your other wig muchbetter” to insensitive commentssuch as “you’re so lucky to be ableto wear wigs – I can’t do anythingwith my hair”. Possibly the mostannoying (but well-meaning) arefrom people who want to help:“what causes alopecia? There mustbe a reason for it. Are you stressed?Have you tried rogaine/shampoowithout sodium laurelsulphate/scalp massage/positivethinking/changing yourdiet/acupuncture/naturalmedicine/vitamins/this cure that Iread about on the internet/ headstands to let the blood circulate to

Monique Cormier re-searches and teaches atMelbourne Law Schoolwhere she is undertakingher PhD in internationalcriminal law. Moniquehas had alopecia for 15years.

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‘the alopeciologist’ May 2014 (c) Alopecia Areata Support Association 2014 www.alopeciavictoria.org.au

your head/medication that worksfor other auto-immune condi-tions…?” You name it, we’ve allheard it.

The awkward…

And then of course, are theawkward reactions. Unfor-tunately I’ve had far more

of these than I anticipated when Istarted telling people that I wear awig. For example, when I first toldan older woman that I work closelywith, she just looked shocked andkept asking me if I was okay. It’sbeen three years now, and she stilldoesn’t like it when I mention theword ‘wig’.

For a while I was wearing acurly wig and a girl my agecommented on my hair and

asked whether it was natural. Atthat point we were in a seminarwith about six others, and so ratherthan announcing that I wear a wigin front of people that I didn’tknow very well, I just said “no, it’snot natural” because let’s face it, asynthetic wig is as unnatural as itgets! This girl then went on to sayhow she could never be botheredstyling her hair every morning andhow I must spend so much time onit. I would far prefer that she knowthat I wear a wig and that my hairtakes literally two seconds to put on

than for her to think that I spend anhour every morning styling it. Afterthe meeting, I caught up with thegirl and told her it was a wig, that Ihad alopecia. She seemed okaywith my explanation, but that wasthe last time I ever spoke to her.She completely avoided me afterthat. I don’t know whether she wasembarrassed, or thought it was anodd thing for me to tell her, or wasperhaps freaked out by my revela-tion.

In another notable encounter, Iran into an acquaintance – ayoung, brash, confident male. I

was wearing a completely differenthair style from the one he was usedto seeing, and he went on and onabout how he really liked my previ-ous hair, and kept asking why Ichanged it. I didn’t feel comfort-able explaining to him at that mo-ment about it being a wig becausehe was with someone I didn’tknow. Instead, later on, I wrote himan email to explain. I didn’t hearanything back for a week, but thenreceived a sweet, very sheepish re-sponse, in which he apologised pro-fusely for his behaviour.

No doubt such stories arecommon for those whohave experimented with

telling people about their wigs.Given my varied experiences, I am

now far more discerning about whoI tell, and usually only change myhair style around people who knowI wear wigs, or every six months atwork. Of course I would still pre-fer to be open and tell people aboutmy alopecia, but I do find myselfbeing a little more evasive in cer-tain situations.

I try to think about it from theirperspective, and I wonder howI would have reacted before my

own experience with alopecia ifsomeone told me they were wear-ing a wig. There are so many thingsthat those of us with alopecia haveto adjust to and become adept atdealing with, and telling peopleabout our condition and wigs is askill that requires judgment andstrategy. And much like the condi-tion itself, the responses remainunpredictable.

“My favourite reaction to a wig change:

One day I went from short blonde, to long and red.

A male colleague squinted at me and said “something’s

different… did you get a haircut?”

“It has been said that healthcare won’t get better until patientsplay a leading role in fixing it.

We agree and look forward to helping drive the patientrevolution on”.

British Medical Journal 2013;346:f2614

Alopecia Areata Support Association Inc VicNo A0017172Y

PO Box 89Camberwell

Victoria 3124Australia

Tel: (03) 9513 8580

aasavic@gmail.comwww.alopeciavictoria.org.au

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‘the alopeciologist’ May 2014 (c) Alopecia Areata Support Association 2014 www.alopeciavictoria.org.au

In our August newsletter lastyear, Karena Moore-Millar gaveus some great text and images

explaining her research into the‘wig-wearing’experience. The inter-national journal ‘Body Image’ hasnow published some of the researchthat Karena did for her PhD. It is animportant and interesting articlewith a delicious double meaning inthe title - “Can you pull it off? Ap-pearance modifying behaviorsadopted by wig users with alopeciain social interactions”.

A central issue of interestfor the research group was the pos-sibility that the current medical rec-ommendations to use wigs as an‘aesthetic coping mechanism’, un-derestimates the ‘work’ involved inwearing a wig in terms of managingdifferent interactions with variouspeople, and the possibility that theremay need to be some preparationfor the person in transition to wear-

ing a wig. In other words, wigs may‘fix’ one problem, but create others.

Karena and her colleaguespoint out that the wig-wearing alop-cia life is a type of ‘impressionmanagement’ that everybody doesto some extent. We dress up differ-ently for some occasions, we maybe in some roles where we need tobe authoritative and in others wherebeing authoritative would make avery bad impression. The authorsbelieve that the information fromthe study demonstrates wig-wearingcreates ‘a huge interactional andpersonal burden’ and that ‘Conceal-ing hair loss is thus not an endpoint; it is the starting point for in-dividuals in a life without hair’.This is particularly so around theperson’s preferences about whoshould know about the wig and whois an appropriate person to be ableto make comments about it and howto manage those preferences.

Probably most womenwith hair loss, when it is beyondbeing disguised by rearranging ahairstyle, will choose to wear a wigand the researchers suggest that it’snot enough to tell someone to get awig and get on with their life. Pro-viding good information about whatwomen can do next and who cansupport them in their complex read-justments and management of socialinteractions should be a basic partof good care.

When better understood,the complexities of the alopecia life,can be the basis of better qualitycare, support and headwear prod-ucts for people affected.Well done Karena!

Should wigs be treated likeother prostheses in the contextof ‘rehabilitation’?

In a small study of women withAA in Japan, wigs have beenshown to improve the quality oflife of women with alopecia.(Shigeki et al 2012) .

This study was conducted in thecontext of ‘rehabilitation’. Thisperspective helps us ask, whatsimilarities and differences arethere between for example, am-putees as they adjust to life withan articial limb.

What would a hair loss rehabili-tation program be like?

the alopeciologist

Thea Chassin is the founder of Bald Girls Do Lunch, the U.S. supportorganisation for women with alopecia. She has recently asked womenin her network, what they considered were the biggest challenges in

their daily lives. In a post in their newsletter Thea has categorised the re-sponses into 4 main categories.

Women with alopecia struggle with positivity and confidence, they worryabout what people think, they consider hair very relevent to their sexuality,and lastly ‘Wig Worry’. This last category fits very well with Karena Moore-Millar’s work, Thea also notes that whilst wigs replace what has been lostand wigs do give women more confidence in their appearance, it also addsnew stresses.

As the bulk of women will choose a head covering of some type and most ofthose will decide they want a wig to be at least part of their appearance man-agement, what are the skills that we can learn?

Monique Cormier’s article shows some of the ordinary everyday interactionswhich are affected and become part of life with alopecia such as interactionswith colleagues in the workplace and she demonstrates skills that can helpsomeone feel more in control of their alopecia, than vice versa.

You can read the complete post by Thea Chassin at:http://blog.baldgirlsdolunch.org/biggest-challenges-facing-women-with-alopecia or just search for Bald Girls Do Lunch.

What are the biggest challenges in the daily lives of women with Alopecia Areata?

Alopecia Areata Support Associa-tion Inc VicPO Box 89CamberwellVictoria 3124Address Line 4Tel: (123) 456 7890Mobile: (123) 456 7891Fax: (123) 456 7892aasavic@gmail.comwww.alopeciavictoria.org.au

‘Concealing hair loss is thus not an end point;

it is the starting point for individuals in a life without hair’.

This is one of the cover images from

our Facebook page.

Note our new web address.

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‘the alopeciologist’ May 2014 (c) Alopecia Areata Support Association 2014 www.alopeciavictoria.org.au

We thank Jane English,Manager, Clinical Servicesat the Skin&Cancer Foun-dation involving us in thissession.Pat.

Skin and Cancer FoundationProfessional Education.Pat Crotty

On Thursday evening March13th, Terri Beardwood andI attended this session to

present a patient’s perspective onalopecia. The evening was intro-duced by Chris Arnold, the Execu-tive Director of the Skin andCancer Foundation. The Founda-tion through Jane English, is plan-ning a series of 3 sessions this year.This as the first in the series and theaudience consisted of about 20 peo-ple, nursing and administrationstaff and dermatologists.

This first session wasabout “Patient and Family CentredCare” and Dr Cath Crock from theRoyal Children’s Hospital who isthe Executive Director of the Aus-tralian Institute for Patient andFamily Centred Care was the firstspeaker. She set out the valueswhich underpin this internationalmovement and why it is important.This is how she commenced thesession

“Patient centred care what is it?There are definitions around whichcan give an idea of the basic prin-ciples. Respect and dignity Information sharing Participation

Partnership and collabo ration.”

To sum this up for me PFCC isabout relationships. ........I am going to describe to you anunexpected journey for me over thepast 15 years. Its really a storyabout listening and valuing every-one’s input - patients, families andfrontline staff. Its about changingthe culture and about partnering toimprove healthcare experiences foreveryone involved”.

Much of Dr Crock’s workis with childhood cancer and overthe course of 3 years of treatment,children undergo many invasiveand painful treatments.

One very important pointmade by Dr Crock was that whenshe advocted some much neededchanges which would be less pain-ful for the children and less stress-ful for their parents, one objectionfrequently put to her was that ‘wehave done it in the same way for 20years and no-one had ever com-plained’

To quote Dr Crock,“I want to reinforce that there wasan extraordinary mismatch be-tween no one ever complaining andhow they were really feeling”.

A survey of 100 sets of parentsconfirmed the need for change.

Dr Crock’s stories showedhow important patient and familyvoices are in modifying services sothat patients, health professionalsand staff are more satisfied with thecare that is provided.

Terri told how the imper-sonal nature of her consultationcombined with the pain she experi-enced meant she was really unfit todrive home, but no one had told herthat she would need to bring some-one with her to the appointment.

The discussion was mostinteresting with 2 dermatologiststalking about the pressures on themin some workplaces which meantthey had less time with their pa-tients. Terri was able to make anumber of very positive sugges-tions as to how improvementscould be made to communicationand record keeping, some of whichhave already been implemented.

We can do it!There is one thing we can all do, ifwe are given a patient feedbackform FILL IT IN we can be honestabout both the positive and nega-tive aspects of our care! If a servicedoesn’t have patient feedbackforms, write a letter. Like Terri’sstory, your story can make a differ-ence too. We can certainly do that!

Dr Crock is alsowell known in herrole as the creator ofthe Hush MusicFoundation and theproducer the musicCDs which areplayed in many hos-pitals and healthcare settings (andhomes!). You canwatch an extendedinterview with hermade for the 7.30Report and purchasethe Foundation’sCDs through iTunesor Readings.

‘The Magic Island’,the most recent CDis a beautiful collec-tion of original mu-sic by Australianmusicians and com-posers such as PaulGrabowsky, NigelWestlake, and ElenaKats-Chernin allperformed by theTasmanian Sympho-ny Orchestra.

Heavenly!!

“.....there was an extraordinary mismatch

between no one ever complaining and

how they were really feeling”.

“....patient and family centred care is about changingthe culture and about partnering to improve health-care experiences for everyone involved”.

Terri Beardwood, Dr Cath Crock, Pat CrottyPhoto: Courtesy Skin&Cancer Foundation

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‘the alopeciologist’ May 2014 (c) Alopecia Areata Support Association 2014 www.alopeciavictoria.org.au

The Option Grid astory from AlopeciaUK Many peoplewith alopecia face whatmay be difficult deci-sions about either start-ing or in the longer term,

continuing with treat-ments. The Options Gridis an interesting exampleof how to help peoplemake those decisions. Gwennan Tho-mas works with Alo-pecia UK as a volunteer

and has recruited a teamof professionals to de-velop a one page table offrequently asked ques-tions (FAQs) which willhelp patients discusstreatment options andmake well-informed de-

cisions based on theirpreferences and personalvalues. It will set out theoptions available, theirside effects and likeli-hood of success. It willinclude psychologicalsupport as a category of

treatment in recognitionof the potentially lifechanging impact of alo-pecia.Another example wherepatient views can lead tobetter decisions.We can do this too!More information on page 8

THE PATIENT’S PERSPECTIVE

Our cover‘We Can Do It!’

Rosie the Riveter

Wikipedia tellsus that Rosiethe Riveter is

a cultural icon of theU.S. who became asymbol of women’s ca-pabilities. She was acreation of the artist J.Howard Miller and rep-resented the Americanwomen who becamefactory workers duringthe Second World Warwhen production needsin areas like munitionsand armaments werevery high but thenumber of workers haddwindled with so manymen in the armed forces.These social circum-stances were also appli-cable to Australia, NewZealand, Canada and theUK.

The poster was designedto keep up morale in theUS.

You can get a nostalgiafix by listening to the

Rosie the Riveter songfrom 1942 on You Tubeand see some historicfilm of US womenworkers of the timehttp://goo.gl/lv33qP

And the legacy lives onthrough a Foundation inRichmond, California.The Foundation runs“Rosie's Girls” a nation-al youth program foryoung women, designedto build self-esteem,leadership and physicalconfidence through anexploration of tradesand non-traditional ac-tivities. Their slogan is,you guessed it!

“We can do it ....today”

‘the alopeciologist’ May 2014 (c) Alopecia Areata Support Association 2014 www.alopeciavictoria.org.au

A group of real Rosies: Factory workers of the time sharing a lunch breakSource:http://goo.gl/ipsgxB

Lastly but certainly not least, go to You Tube for your guideto 1940s femininity, hair, nails and clothes.1940s Fashion - How to Dress and Makeuphttp://www.youtube.com/watch?v=ibLQnWKsz-w

“It doesn’t matter just what hairstyle you use, as long as it looks right on you just besure your hair do suits you and is neatly in place.....

These grooming habits form the basis of a good appearance” Voice over from “ 1940s Fashion - How to Dress and Makeup” on You Tube.

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Sources for this edition

Chassin, Thea In Your Words: The Biggest Chal-lenges Facing Women With Alopecia, Bald GirlsDo Lunch Newsletter URL: http://goo.gl/Nbhcuuaccessed April 16th, 2014

Option Grids (USA) and Decision Aids (UK)http://www.optiongrid.org/http://www.patient.co.uk/decision-aids

Shigeki INUI,1 Takenobu INOUE,2 Satoshi ITAMI,Psychosocial impact of wigs or hairpieces on perceivedquality of life level in female patients with alopeciaareata (letter to the editor) The Journal of Dermatology2012; 40: 1–2

The Hush Music Foundationhttp://www.hush.org.au/

The Australian Institute for Patient and FamilyCentred Care http://www.aipfcc.org.au

Wiggins, S. Karena Moore-Millar and AvrilThomson . “Can you pull it off? Appearancemodifying behaviors adopted by wig users withalopecia in social interactions” Body Image(2014),http://dx.doi.org/10.1016/j.bodyim.2014.01.004

1940s Hair Styles on You Tube

1940s Fashion - How to Dress and Make-uphttp://www.youtube.com/watch?v=ibLQnWKsz-w

1940's Fashion - Women's War Hairstyleshttp://www.youtube.com/watch?v=ro4P_Mou2bs

OK, So we know we can do it -But how? What can I do? There is an increasing amount of research recog-nising the challenges posed in coming to terms with hair-loss - but unfortunately there is virtually no research whichwould help us identify the skills related to hair loss specifi-cally that we could use and the ways we might learn them.

How do people with alopecia learn the skills theydevelop? How did you learn the strategies you use to livemore positively with alopecia?

What would you tell someone with recent hair lossthat would help them in their journey? Can you share someof your thoughts with us? Anonymously if you prefer.

We’ve added some ideas to our web page andthere are some great ideas in Monique’s article. Have alook and see how many alopeciology skills you can identi-fy!

Send us an email aasavic@gmail.comDrop us a line ‘the alopeciologist’,PO Box 89, Camberwell 3124Victoria, Australia

We hope you enjoyed the Autumn issue of‘the alopeciologist’. We’d love to hear whatyou thought of it, because we want to make itboth enjoyable and useful for you.

From our Facebook pagehttp://goo.gl/yaeGC0

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