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Christopher S.J. Tran, BSc, Faculty of Medicine, University of Toronto

Joyce Nyhof-Young, MSc, PhD, Cancer Survivorship Program, Princess Margaret Hospital and Department of Radiation

Oncology, University of Toronto

Gayathri Embuldeniya, MA, CPhil, PhD, Division of Rheumatology, Department of Medicine, Sunnybrook Health Sciences Centre

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Phedias Diamandis, PhD, Faculty of Medicine, University of Toronto

Lopamudra Das, BSc, Faculty of Medicine, University of Toronto

Romy Cho, BHSc, Faculty of Medicine, University of Toronto

Mary J. Bell, MD, MSc, FRCPC, Division of Rheumatology, Department of Medicine, Sunnybrook Health Sciences Centre and

Division of Rheumatology, Department of Medicine, Faculty of Medicine, University of Toronto

Abstract

This study aims to identify the informational,

emo-tional, and appraisal support needs of individuals

with inflammatory arthritis (IA) from the

perspec-tives of patients, family and friends, and health care

providers (HCPs). Desirable characteristics of a

peer-to-peer mentoring program as an adjunct to clinical

care for people with early IA (EIA) were also

ascer-tained. Semi-structured interviews were performed

with a purposive sample of patients with IA (n= 15),

family members and friends (n= 6), and HCPs (n=

9) involved in the care of IA. Interview data were

analyzed using NVivo 8. Descriptive themes were

identified through constant comparative analysis.

Individuals with IA prefer a variety of information

sources, and informational needs evolve over time.

Family and friends suggested that an emotional

sup-port network was valuable to help cope with and

learn about IA. The idea of peer-to-peer

mentor-ing as a form of support was well received, as peers

were perceived to be able to provide informational,

appraisal and emotional support. Although HCPs

cautioned that peers should acknowledge the limits

of their knowledge, they too suggested that peers

could help reinforce informational support

provid-ed by HCPs. Disease stage and personal qualities

were important considerations for a peer support

program. Peer support was a well-received approach

for helping individuals with EIA cope with concerns

brought by their new diagnosis and to meet their

in-formation and support needs. These results suggest

that peer mentoring, if context-driven and sensitive

to individual needs, could be valuable in helping

individuals with EIA to manage their condition.

De-velopment of an EIA-specific peer support

interven-tion is underway.

Corresponding Author: Mary J Bell, MD, MSc, FRCPC Division of Rheumatology

Department of Medicine, University of Toronto Sunnybrook Health Sciences Centre

2075 Bayview Avenue Toronto, Ontario M4N 3M5 Email: [email protected]

Introduction

I

nflammatory arthritis (IA) is a leading cause of functional

disability and chronic pain, and the burden of illness is

pro-jected to increase.

_{The disease course and symptoms are}

often unpredictable, making management difficult.

_Primary

care providers are underprepared to take on the management

of a chronic condition, and the number of musculoskeletal

specialists in Canada is decreasing.

_{Unfortunately, delays to}

rheumatologic care are common, as individuals with IA and

their health care providers (HCPs) both fail to recognize early

disease,

_{leading to poor health outcomes.}

While interprofessional health care is important,

educat-ing IA patients with the knowledge and skills to help them to

manage their condition can improve patient health outcomes

and reduce healthcare burden, such as visits to emergency

de-partments.

_{In fact, patient education in self-management has}

been identified as an arthritis best-practice and a key clinical

practice guideline.

Peer support models have been successfully implemented

for improved management of various health issues.

_A

peer is defined as a person who shares common

characteris-tics with an individual, such that the peer is able to relate to

and empathize with that person on a level that is not possible

by a non-peer.

_{Peer support encompasses emotional,}

ap-praisal and informational support provided by an individual

(or group) having personal experience of a specific behaviour

or stressor and characteristics similar to the population being

supported.

_{Emotional support includes expressions of caring,}

empathy, and reassurance. Appraisal support involves

affirma-tion of one’s feelings and behaviours, encouraging persistence

for resolving problems, and reassurance that frustrations can

be handled. Informational support involves providing advice,

suggestions and facts relevant to an individual’s particular

chal-lenges. All three types of support are based on experiential

knowledge rather than formal training.

_{Peers have the}

po-tential to influence health outcomes of other patients by

ad-dressing feelings of isolation, promoting positive outlook and

motivation, and providing information about behaviours that

encourage health and well-being.

While peer support has helped individuals with various

chronic diseases to manage their conditions,

_{it is not well}

researched in the IA population. Peer support is particularly

relevant to members of the early IA (EIA) population who

of-ten express frustration due to work impairment and persisof-tent

pain.

_{In particular, early emphasis on social support may}

de-crease long-term functional disability in patients with EIA.

_As

such, peer support can play a vital role as an adjunct to clinical

care for IA by improving self-efficacy, self-management, social

support, health-related quality of life, coping-efficacy,

adher-ence to pharmacological therapy, and by decreasing anxiety

and disease activity among EIA patients.

This paper reports the results of an exploration of the needs

of individuals with IA, their friends and families, and HCPs to

assess patients’ educational and support needs and determine

the acceptability of a peer support intervention in the EIA

pop-ulation. This is the first phase of the development of a peer

support intervention for individuals with EIA.

Participants and Method

Recruitment

Individuals with IA receiving outpatient care from the

Divi-sion of Rheumatology at Sunnybrook Health Science Centre

(SHSC), Toronto, Canada, and their family and friends were

invited to participate by information letter distributed

dur-ing clinical hours and through The Arthritis Society. Family

and friends were also recruited by recommendation from

in-dividuals with IA. HCPs known to the principal investigator

(MB) were approached though personal contact, email or

telephone. A purposive sampling strategy ensured diversity in

disease duration and social demographics. Ethics approval was

received from SHSC Research Ethics Board.

Patient Disease Management

1. Tell me about the things you do to care for or manage your arthritis.

2. Tell me about the time when you received your diagnosis. What was your reaction?

Patient Decision-Making

8IFOZPVIBWFBRVFTUJPOBCPVUIPXUPDBSFGPSZPVSBSUISJUJTPSZPVIBWFBEFDJTJPOUPNBLFXIFSFEPZPVHPPSXIBUEPZPVEPUPmOEUIFBOTXFS or make the decision? What information sources do you use?

8IBUBSFZPVSQSFGFSSFENFUIPETGPSMFBSOJOH 8IBUBSFZPVSQSFGFSSFENFUIPETGPSHFUUJOHBOTXFSTUPZPVSRVFTUJPOTPSNBLJOHEFDJTJPOT (e.g., reading, information sessions, one-on-one vs. group; with health professional, with peers)

5. Some decisions we make are relatively minor and can be made quickly with very little thought (e.g., “Will I have cereal or toast for breakfast?”). Other decisions are much more difficult to make, such as whether or not to take medications or go to a physical therapist to help care for our arthritis. When you have a difficult decision to make what do you do? What are the steps you would take?

)PXFGGFDUJWFBSFUIFTFTUSBUFHJFTGPSNBOBHJOHZPVSBSUISJUJT 7. What would make it easier for you to make these difficult decisions?

Informational Needs

8. Thinking back to the time when you were diagnosed with arthritis, what kind of information did you need or would you have like to have received? What did you want to know about?

"TUJNFXFOUPOIPXEJEZPVSJOGPSNBUJPOOFFETDIBOHF

Emotional Needs

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Appraisal Needs

11. How important is it to get feedback on these decisions?

Opinions on Peer Support

12. One strategy that can be used to help people make decisions is peer support. A peer is a person who shares common characteristics (e.g., age, sex, disease status) with the individual or group of interest. The ‘peer’ is able to relate to, and empathize with the person on a level that a non-peer would not be able to.

a. What is your opinion of this approach as a way to help you make decisions to help you manage your disease? How would you feel about having a peer as a decision coach to help you make decisions related to managing your condition?

b. What do you think the role of this peer could be? c. What are important qualities of a peer?

d. Would you prefer one-on-one or in a group setting? e. How often would you prefer to meet?

Other Comments

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Inclusion Criteria

Patient participants required a formal diagnosis of IA.

‘Fam-ily members’ were first-degree relatives, partners, and friends

of an individual with IA; friends were included if they played a

substantial care-giving role. HCPs were physicians, nurses,

oc-cupational therapists, physiotherapists, and social workers for

individuals diagnosed with IA. All participants were 18 years or

older and able to understand and converse in English.

Interviews

Audiotaped interviews lasting 30 to 60 minutes, were

con-ducted face with patients and family, and either

face-to-face or by telephone with HCPs. Family were interviewed

sepa-rately from the patient with IA. A semi-structured interview

guide (Figure 1) was developed based on a literature review

of patient education in arthritis, previous studies of peer

sup-port needs in arthritis patients, and research team experiences.

Patients, family members, and friends were asked about their

own support needs and learning preferences. HCPs were asked

to assess their patients’ support needs. All participants were

asked about peer support suitability as a management strategy.

Interviews with patients, family and friends took place at a

private room at SHSC. HCPs were interviewed at various

clini-cal locations in Toronto. Interviewers wrote field notes

describ-ing each session (e.g., nonverbal communication and their

impressions about the interview) in order to inform future

in-terviews and data analysis.

Analysis

Interviews were transcribed verbatim, uploaded into NVivo

8

_{and coded immediately after each interview to inform the}

conduct and content of later interviews. The interview guide

was iteratively reviewed and updated accordingly. Content was

coded into descriptive categories using a constant comparative

method

_{and then grouped into descriptive themes}

repre-senting the content of all interviews. Analyst triangulation was

used to establish themes, combining the experience and

per-spectives of a cultural anthropology (GE) and medicine (CT,

LD, RC, PD). Categories and themes from coded transcripts

of the interviews were analysed and refined, until consensus

was reached about the emergent themes in the perceptions,

attitudes and experiences of participants.

Results

Interview participants consisted of individuals with IA

(n=15), their family members and friend (n=6) and HCPs

(n=9). A detailed breakdown of their characteristics is in

Ta-ble 1. Four prominent themes emerged across all interviews:

initial reactions upon hearing the diagnosis of IA, challenges

of living with IA, sources of support to address challenges

(in-formational, emotional, appraisal support), and thoughts on a

peer support intervention as an adjunct to EIA management.

Table 1. Participant Characteristics

Patients with IA (n = 15)

Family/Friend (n = 6)

Health Care Providers (HCPs, n = 9)

Age (years) n % Age (years) n % Type n %

1 17 Nurse 1 11

8 1 17 Occupational Therapist 1 11 Physiotherapist 1 7 Social Worker 1 11 Rheumatologist

Sex Sex Sex

Female 87 Female 2 Female 8 Male 2 Male Male 1 11 Diagnosis* Setting

RA 11 Community

PsA 2 Hospital 5

AS 1 7 Location**

PR 1 7 Urban 8

Duration Rural 2

<NPOUIT 7 Experience NPOUITUP

Initial Reactions to Diagnosis

Patients’ reactions to receiving a diagnosis ranged from

re-lief and acceptance to shock, fear, disbere-lief, and denial. Several

patients were “glad” to learn their diagnosis, as they had had

unexplained symptoms for some time: “I was glad to get a

diag-nosis, to know what was going on and happy to know that there

was medication available” (Patient 108). HCPs also

acknowl-edged that patients may initially experience relief upon

hear-ing their diagnosis: “They are relieved to at least know what

they’ve got…” (HCP 406) Many other participants,

particular-ly HCPs, reported a sense of shock and denial at diagnosis on

the part of patients with IA: “I think sometimes people will start

the medications and then they’ll quickly discontinue them

be-cause they’re scared of them and they want the arthritis to just

go away. They just want to pretend that that isn’t really what’s

happening for them.” (HCP 403)

Challenges

All participants reported a host of challenges, including

delayed diagnosis, disease characteristics such as individuality,

unpredictability and invisibility, and the lifestyle changes the

condition brought in its wake.

Delayed Diagnosis

The importance of an early diagnosis for IA management

was endorsed by more than half of all participants. Participants

thought an earlier diagnosis could have helped with treatment

decisions, improved coping and condition management, and

reduced frustration:

“I guess people couldn’t answer the questions because they

didn’t know exactly what was happening until you run your

tests… But that period [of waiting before being diagnosed]

for the patient is excruciating, because you feel totally

help-less. You feel frustrated.” (Husband 303) More than one-third

of patients felt that their doctors made insufficient time for

them and that appointments were difficult to get. Initial

con-sults with a rheumatologist required wait times up to of three

months, often leading to lengthy periods before final

diagno-sis:

“I sort of dealt with it on my own for about six weeks... Then

I went to my family doc, and then we went through the process

of blood work with him. Then the referral, and then it took

six weeks to get into a doctor, a rheumatologist. So it really did

take probably three months before I was able to see a

rheuma-tologist.” (Patient 201)

Disease Individuality and Unpredictability

Several participants commented that IA can be quite

di-verse in presentation and treatment response, compounding

potential delays: “For a long time I really didn’t know what was

wrong, and I was getting different information. My clinical

pic-ture is really sort of not a classic rheumatoid arthritis picpic-ture.”

(Patient 201) A patient can also be symptom-free for long

pe-riods before sudden pain comes on without warning: “There

have been times where weeks and weeks and weeks, maybe

months have gone by, and then she could have a flare-up”

(Husband 304). HCPs acknowledged that treatment response

can be similarly unpredictable: “It varies from person to person

… you think [a patient] is going to respond one way, but they

do not.” (HCP 407)

Lifestyle Changes

Daily living, work, independence, finances, pregnancy and

personal relationships were all affected by IA. For example, a

lack of access to transportation results in increased reliance on

others for travel to appointments. In response, many patients

incorporated lifestyle changes to manage their condition, such

as an improved diet or doing more or different exercises: “I

am changing the way I’m eating … like I’m eating more salads,

watching my coffee intake and taking more honey, green tea,

and things like that.” (Patient 102)

Pacing and relying on others were suggested as useful

strate-gies to adjust to the demands of living with IA: “They really

need to learn that concept of pacing. If you’re going to exert

yourself to the limit, a good chance is you’re going to be flat

out for a while in a flare” (HCP 403); “You just plan differently

than what you planned before. Today, instead of doing the

whole house, you do one room at a time…” (Patient 203)

These lifestyle changes often led to a subtle change in

iden-tity for individuals with IA, as they learned to relate to

them-selves and others in new ways,

“Now I know that I need professional help, and I’m more

courageous to ask for help. Like I would just ask my son, can

you take me to emergency or can you take me to the doctor?

Or I ask my husband, can you take me to the doctor? I don’t

feel well. So it changed the person that I was.” (Patient 200)

Needs

Post-diagnosis informational, emotional, and appraisal

sup-port were frequently cited as key needs across all three

inter-view groups. For example, many patients and family members

wanted a range of information about potential causes and

out-comes of IA to aid in decision-making and ultimately coping

with the condition. Health care providers were key resources

in this information-gathering process:

“They’ll [patients] ask me, “Why did I get this disease?” We’ll

try to address [the causes] in a very layman’s way. We talk about

why this happened and things that they can control, meaning

if it’s being overweight or whatever it may be, and things that

they can’t control. We talk about what are conservative options

for treatment, what are some of the pharmacotherapy options

for treatment. And, then in my context, for surgical options for

treatment and the patients are always given a choice.” (HCP

401)

may impact on my daily living in the future.” (Patient 201)

Pa-tients and HCPs also noted a change in information needs over

time, in keeping with the course of the disease. One patient

explained, “I feel a lot better, so my immediate needs around

pain management are gone. I think my needs now are more

around prevention and how to prevent a relapse, how to stay

healthy so that I can continue to work for a long time and have

a healthy life.” (Patient 201)

Another noted, “As the disease changes, the questions

change too … as the disease becomes more serious, they ask

whether they can still work or whether they can still do certain

activities. If the disease gets better, they say, ‘Oh, should I now

resume activities, or can I now pursue a different career?’ ”

(HCP 408)

Emotional Support

Emotional support was also considered a key requirement

following diagnosis, especially by family and friends: “My

hus-band has helped me… He’s quite a pillar of support right now

because he sees what’s happening.” (Patient 100)

“I think we all have to recognise that an inflammatory

condi-tion is not just going on in their joints. It’s going on in their

minds. It’s going on in their relationships… There’s a huge

amount of emotional turmoil in people with a diagnosis of a

chronic inflammatory condition, and I just think they need

on-going psychosocial support and recognition.” (HCP 402)

At least three patients acknowledged that their emotional

needs were not being met. They felt unable to discuss their

condition with those closest to them in fear of worrying them

unnecessarily or due to perceived lack of empathy and interest:

“I don’t get any [emotional support] from anybody because

I don’t discuss it…. Nobody wants to hear about it.” (Patient

107); “I really downplay it at work … They’re not very

empa-thetic with people who have something wrong with them.”

(Pa-tient 202)

Appraisal Support

While not many participants explicitly alluded to appraisal

support, it was evident that HCPs, family members and friends

were sources of this type of support: “It is important…my son is

a doctor and my friend. My daughter, my husband, we’re all in

it together.” (Patient 101)

Peer Support

The concept of peer support was well-received by patients,

family and friends: “I think a peer can be really helpful in terms

of working through all of those emotions and the questions…”

(Patient 201). In contrast, HCPs had a more diverse range of

views on peer support. On the positive side, at least half of

HCPs viewed peer support as a complementary source of

infor-mation to what they already provided their patients:

“I think peers … would be very helpful when they talk about

coping mechanisms. So if people are having functional

limita-tions, or they are having difficulty with their activities of daily

living, then having other people to talk to about how they

man-aged that…I think that’s very good.” (HCP 405)

Only limited factual informational support provision was

recommended by HCPs, due to concerns about information

accuracy. Many HCPs mentioned that peers should take on a

role that is “within boundaries”, that is explicitly based on

ex-periential knowledge: “Certainly they could be compassionate

in listening … but I don’t think in a medical environment you

want to be fostering information that the medical environment

knows…is not helpful to the patient. So I think there have to

be some boundaries in that.” (HCP 406)

Other HCPs concerns included potential for burnout of

peer mentors and a sometimes negative atmosphere within

peer support groups: “One of the things that is sometimes

poorly controlled in a support group, is that it really becomes

a complaint circle, and everybody goes out of there feeling

depleted instead of encouraged.” (HCP 402) Despite

limita-tions, HCPs acknowledged the potentially positive impact of

well-trained peers on individuals with IA. Participants across all

groups approved the idea of a peer support intervention: “Peer

support is extremely important… And, you know, very often

people who are hesitant will believe someone else with the

dis-ease before they’ll believe one of the professionals.” (HCP 404)

Role of the Peer

Roles relating to the provision of informational, emotional,

and appraisal support are discussed below:

Informational Support: About one-third of participants

identified experiential information provision as a key peer

mentor role. Desirable information included experiences

deal-ing with challenges, treatment decisions, and strategies

regard-ing lifestyle changes. As one patient explained: “Someone who

has been there for a long time can talk about what they used

to do, how much the new stuff is helping them, everything that

has been successful for them, what hasn’t been successful.”

(Pa-tient 104)

Emotional Support: The provision of emotional support by

a peer included building self-esteem and alleviating fear and

anxiety associated with a diagnosis of IA. Some participants

also saw an opportunity for friendships and mentoring

rela-tionships to develop within the peer-to-peer relationship: “You

can discuss what’s going to happen, what may happen or what

has happened and give that person hope or encouragement.

And I think it alleviates some of the fear that they may

experi-ence …” (Friend 300)

Appraisal Support: At least two participants viewed appraisal

support as a component of emotional support: “Just

confirma-tion that you are making a good decision.” (Patient 104)

Desirable Peer Characteristics: These included compassion,

empathy and being knowledgeable, experienced, supportive,

understanding, and sensitive to participants’ need for privacy.

An effective peer provides direct support, is a good listener,

and “has some knowledge… somebody who would be able

to empathize with the situation….They would have to have a

broad knowledge of what’s out there.” (Patient 103)

Discussion and Conclusions

Interven-tions that address coping and maintaining function can help

improve patients’ health outcomes and reduce reliance on

emergency departments.

Participants identified a number of challenges associated

with diagnosis, such as delayed diagnosis, diversity of disease

presentation, disease unpredictability and invisibility, and

nec-essary lifestyle changes. Factors that may contribute to these

experiences include shortages and geographic variation in

availability of specialists,

_{as well as deficiencies in primary care}

management of arthritis (i.e., inappropriate referral, general

practitioners’ lack of confidence in doing musculoskeletal

ex-amination).

All three groups interviewed identified a need for

infor-mational, emotional, and appraisal support post-diagnosis.

Support interventions addressing a range of outcomes (e.g.,

health status, self-efficacy, health care use, health behaviours,

perceptions of good heath, bonding with others) are described

in the literature.

_{In our study, HCPs were frequently cited}

as a good source of informational support, but many

partici-pants felt that HCPs did not or could not fully meet their

infor-mational support needs. While all participants saw family and

friends as a source of necessary emotional support after a

diag-nosis of IA, several patients noted that their emotional needs

were not being met by their existing social network. While

ap-praisal support was sought from HCPs, and family and friends,

the degree to which such needs are met is unclear, as appraisal

support was not often explicitly articulated by participants.

This may be because some participants viewed emotional and

appraisal support as synonymous.

Given a stated inability of HCPs to fully address the support

needs of individuals with IA within the HCP-patient

relation-ship, all three groups of study participants thought a peer

sup-port program would be a potentially appropriate and desirable

way to bridge the gap between patients’ needs and existing

sup-port. Peer support models have also been suggested in the

lit-erature as a potentially low-cost, flexible means to supplement

formal healthcare supports provide benefits for both recipients

and peer support providers.

_{All groups viewed peer mentors}

as a potential way to provide timely informational support

through shared experiences, as well as emotional and appraisal

support, for example by providing feedback on decisions.

Pa-tients and their friends and families were enthusiastic about

the prospect of support from a peer who could empathize

with individual experiences. HCPs also saw value in the use of

peer mentors to provide the emotional and appraisal support,

but were cautious, emphasizing the need for role boundaries.

The subtle disjuncture between HCPs’ attitudes to peer

sup-port compared to those of patients and families points to the

need to design initiatives that are respectful of HCPs’ concerns,

while meeting and advocating for patient needs and not

re-producing the paradigm of medical dominance. For example,

despite potential to empower patients, the Expert Patients

Pro-gramme in the United Kingdom has been criticized for

per-petuating the traditional medical support model and failing to

reach those in most need.

Our data indicate that the needs of individuals with IA are

not being met by existing social and healthcare relationships

and their self-management may suffer as a result. Doull

et al

.

argue that a peer with a similar chronic disease is uniquely able

to empathize with an individual’s health situation. A peer

men-tor may, therefore, be seen as a means to bridge support gaps

and enable IA patients to better manage their condition. Based

on our findings, and given the successful use of peer support

models to address other health issues,

_{peer support is}

pro-posed as an appropriate method to address unmet needs of

individuals with IA.

Participants identified desirable peer mentor characteristics

such as empathy, knowledge and understanding and noted

that peer support must be context-driven and tailored to meet

individual needs and life circumstances. Attributes such as

class, gender, and ethnicity must be considered when matching

peers to patients. Research on peer support and chronic

dis-ease suggests compatibility and perceptions of similarity (i.e.,

same age range, stage of life, life circumstances between peers)

are important.

_{Sharing the same disease experience may}

not be enough to establish common ground between peers.

Other studies suggest benefits accrue that do not appear to be

dependent on participant similarity or shared diagnosis

_and

that variations (e.g. disease, level of knowledge) in a program

may be a strength.

_{Nonetheless, our study suggests a peer}

sup-port program sensitive to diverse needs may be an effective

ad-junct to clinical care and may help persons with EIA to better

manage their condition.

Limitations include the single-centre structure and the

fact that research took place within the context of a universal

health care system, such that experiences may be specific to

these settings. Also, this needs assessment focused solely on IA,

and findings may not be applicable to other chronic disease

populations. While results may not be generalizable to the

larger IA population or other chronic disease populations, this

study provides added value to existing research on peer

sup-port in chronic disease by addressing a relatively unexplored

topic of peer support in individuals with EIA. These findings

are informing the development of a new peer support

inter-vention tailored to the EIA population. We are optimistic that

early peer support will reduce the burden that IA places on

the healthcare system by assisting individuals with EIA to better

manage their condition.

Acknowledgements

We the authors would like to thank the research team:

Jo-anna Sale, Joan Sargeant, Peter Tugwell, Sydney Brooks, Susan

Ross, Ruth Tonon, Dawn Richards, Jennifer Boyle, Kerry

Knick-le, Nicky Britten, Sharron Sandhu, Emma Bell, Laure Perrier,

Fiona Webster, Mary Cox-Dublanski. We would also like to

ac-knowledge the important role of the research participants.

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