Contents: Volume II - epubs.surrey.ac.ukepubs.surrey.ac.uk/807813/4/Final thesis JH (Vol II)...

Accessing social capital and ‘goods’ online: the contingent role of the

Internet in parenting someone with Rett syndrome

by

Jo Hope

Submitted for the Degree of Doctor of Philosophy

School of Social SciencesFaculty of Arts and Human Sciences

VOLUME II: APPENDICES

Supervisors:

Dr Christine HineDr Sarah Earthy

© Jo Hope 2015

Contents: Volume IIThis thesis is presented in two volumes. The main body of the thesis is presented in Volume I. The Appendices are presented in Volume II.

Appendix 1: The Stages of Rett syndrome..................................................................................292Appendix 2: Original approval letter from University of Surrey Ethics Committee 294Appendix 3: Full survey questionnaire........................................................................................297Appendix 4: Origin of questions in each section of the survey questionnaire............352Appendix 5: Details of recruitment process..............................................................................357Appendix 6: First mailing letter to parents (Rett UK members)......................................361Appendix 7: Recruitment article for Rett UK’s newsletter..................................................363Appendix 8: Second ethics approval letter from University of Surrey Ethics Committee.................................................................................................................................................364Appendix 9: Letter with second mailing to Rett UK members..........................................365Appendix 10: Form sent with second mailing to Rett UK members...............................367Appendix 11: Additional demographic data on survey respondents.............................369Appendix 12: Record of online support space use..................................................................370Appendix 13: Covering letter for Stage 2 participation........................................................376Appendix 14: Information sheet for Stage 2..............................................................................377Appendix 15: Consent form for Stage 2.......................................................................................379Appendix 16: Information after interview.................................................................................380Appendix 17: Interview schedule...................................................................................................382Appendix 18: Details of interviewees’ use of the Internet and details about their children with Rett syndrome............................................................................................................389Appendix 19: Results of tests for mode effects in survey responses..............................391

291

Appendix 1: The Stages of Rett syndromeThe stages of Rett syndrome (based on the description given in Smeets et al., 2011).

292

Stage name When it occurs DescriptionThe Early-onset Stagnation Period (Stage I)

Between 5 and 18 months of age

Subtle developmental problems within normal milestone parameters e.g. sudden change in interaction, bottom shuffling but no crawling or standing, babbling and new words but

at a poor level.) Doctors are likely to reassure parents with concerns

The Rapid Developmental Regression Period (Stage II)

Between 1 and 4 years of age

A rapid or sudden regression with a loss of acquired abilities. It may be accompanied by a spell of meningitis and encephalitis-like symptoms with no clinical explanation.

Eye contact remains but interest in people and objects reduces and the child sometimes seems ‘absent’. Previously-acquired babbling, words and fine motor skills are lost. Children will still reach for objects but

then withdraw their hands and pull their hair or tap their head, which later develops into stereotyped hand movements. Cognitive problems become obvious.

Night-time crying, recurring infections and unexplained fever are common and sometimes assumed to explain the problems.

There may be febrile seizures and epilepsy may be suspected. Panting, spitting, hypersalivation and hyperventilation, with grimacing and twitching of the corners of the

mouth may occur. A reduced head growth is noticed in some but not all children at this stage.

The Pseudo-Stationary Stage (Stage III)

This occurs after stage II for some children, while others might move straight into stage IVB. Its duration varies greatly but it can be decades long.

An ‘awakening’ stage where children are happier and more alert, with ‘remarkably well preserved’ eye pointing to communicate needs

Children can still learn about new things, people and situations Some children have a return of some speech and/or use of the hands Mobile children may remain so, others may learn to walk; motor regression is slow Loss of purposeful hand movement with stereotyped hand movements. Breathing irregularities become more pronounced and can include vacant spells. There can be unexplained laughing at night, frequent daytime sleeping and nighttime waking, crying spells

and agitation. Epilepsy is common but will cease for many at some point Postural problems lead to curvature of the spine, which often progresses quickly, requiring treatment Feet and lower limbs may feel cold and show signs of atrophy; ankles may deform

Late Motor Deterioration (Stages IVA and IVB)

Stage IVA begins when previously mobile people become dependent on a wheelchair for mobility; Stage IVB follows Stage II for some people

Severe neurological impairment Muscle wastage is pronounced Hands and feet are distorted and tissues degenerate as in ageing Hand stereotypes become simpler There is an eventual ‘state of frozen rigidity’ Yet ‘remarkable visual contact and eye pointing behaviour’ remains even in the worst case and can be used

to aid communication.

Appendix 2: Original approval letter from University of Surrey Ethics Committee

Left intentionally blank for insertion of PDF letter to preserve page numbering. PDF letter available as a separate attachment.

293

Appendix 3: Full survey questionnaire

Left intentionally blank for insertion of PDF questionnaire to preserve page numbering. PDF questionnaire available as a separate attachment.

294

Appendix 4: Origin of questions in each section of the survey questionnaire

Section

heading

Content of section Which

respondents

were routed

to this section

Introduction:

The Internet,

Online

Support and

You

Eligibility criteria (UK-resident parents of people with Rett syndrome,

one per household)

[For paper surveys only]: link to online survey

Short description of research including assurance that participation is

helpful whether or not the respondent has ever used the Internet

Assurance of confidentiality and description of data protection procedure

Estimated time for completion (between 10-15 minutes)

Assurance that participation is voluntary but data cannot be withdrawn

after survey returned

Contact details for questions

All

respondents –

this was on the

inside cover of

the survey

booklet and on

the first page

of the online

survey.

Section A:

FOR

EVERYONE

– Sources of

support

[Online survey only] Recruitment information (i.e. where heard about

survey). This was not included in the paper survey as all these were sent

by letter to members so already known.

Rating of importance of online support and offline sources of support

[Paper survey only] Question about current use of Internet (FILTER

QUESTION) [OxIS].

[Paper survey only][For those who answered ‘no’ to current use of the

Internet question] Question about historical use of the Internet (FILTER

QUESTION) [OxIS]

All

respondents

349

Section

heading


respondents

were routed

to this section

Section B: FOR

PEOPLE WHO

CURRENTLY

USE THE

INTERNET

(1/2)

Details of Internet use: where access; how long have been using it;

self-rated ability to use it [all OxIS]

Whether have ever read a ‘shared online support messages’1 in the

following places: email group, chat room, blog, comments section of a

website, discussion board, Facebook pages or groups, Twitter. [based

on OxIS question about use of blogs, etc.]

When last read a shared online support message posted by a carer

[FILTER QUESTION] [based on OxIS question about when last used

the Internet]

[For those who have ever read a shared online support message]

Agreement with statements about reading other carers’ messages (if

make feel less alone; if has helped to solve a problem) [Social capital]

Intention to read shared online support messages again [based on OxIS

question about intention to use the Internet again] [FILTER

QUESTION]

[If don’t intend to read again] Reasons why don’t intend to read again

[includes some options from OxIS question about reasons stopped

using the Internet plus additional options based on theory or prior

research findings – e.g. ‘I find it difficult to understand the jargon or

language used in them’; ‘I don’t need any information, advice or

support at the moment’]

Question about use of specific sites and groups, agreed with parents in

pilot stage [based on OxIS question about use of blogs, etc.] including

open question to list other sites and groups

When last read one of these sites or groups [based on OxIS question

about when last used the Internet]

Ever posted a shared online support message in the following places:

email group, chat room, blog, comments section of a website,

discussion board, Facebook pages or groups, Twitter. [based on OxIS

question about use of blogs, etc.]

All people who

answered ‘yes’

to the question

‘do you

currently use

the Internet on

any device (at

home, work,

school, college

or elsewhere)?’

and all people

completing

online survey.

1 Defined in the question as “messages asking for or giving support and advice related to caring for someone else. These messages are posted on a website or in an email group so they can be seen by others using it.”

350

Section heading Content of section Which

respondents

were routed

to this section

Section B: FOR

PEOPLE WHO

CURRENTLY

USE THE

INTERNET (2/2)

When last posted such a message [based on OxIS question about

when last used the Internet]

Intention to post such a message again [based on OxIS question

about intention to use the Internet again] [FILTER QUESTION]

[If don’t intend to read again] Reasons why don’t intend to post

again [includes some options from OxIS question about reasons

stopped using the Internet plus additional options based on theory or

prior research findings – e.g. ‘I find it difficult to understand the

jargon or language used in them’; ‘I don’t need any information,

advice or support at the moment’]

Whether there are any carers only communicated with through

shared online support messages [FILTER QUESTION]

Agreement with statements about carers only communicate with online [Social

capital]

Section C: FOR

PEOPLE WHO

HAVE

STOPPED

USING THE

INTERNET

Length of time used the Internet [OxIS]

Reasons for stopping use of the Internet [OxIS]

Intention to get access to the Internet in the next year or so [OxIS]

Self-rated ability to use the Internet [OxIS]

When stopped using the Internet [OxIS]

Repetition of questions about reading and posting of shared online

support messages from Section B, prefaced with the phrase ‘WHEN

YOU USED THE INTERNET’ [based on OxIS phrasing]

All people

carrying out

paper survey

who indicated

that they did

not currently

use the

Internet but

had done so in

the past.

Section D: FOR

PEOPLE WHO

HAVE NEVER

USED THE

INTERNET

Reasons for not using the Internet [OxIS]

Agreement with statements about how feel about not using the

Internet [OxIS] with additional statement: ‘it would be easier to get

advice and support about parenting someone with Rett syndrome if I

used the Internet’

All people

carrying out

paper survey

who indicated

that they did

not currently

use the

Internet and

had never done

so in the past.

351

Section

heading


respondents

were routed

to this section

Section E:

FOR

EVERYONE

– about you

Series of demographic questions taken from OxIS, with minor

adaptation (e.g. adding a ‘civil partnership’ option to question about

relationship status): gender, age, ethnicity, whether have a health

problem or disability that limits use of computer/the Internet, type of

place live (city, village, etc.), region of UK live in, relationship status,

highest qualification held, employment status, numbers reporting to

respondent, occupation of self, occupation of main household earner if

different, numbers reporting to main household earner, household

income

Series of specific questions about children (whether daughter or son

with Rett syndrome, ages of child/ren with Rett syndrome, age of

child/ren when received formal diagnosis, whether child/ren with Rett

syndrome lives with respondent, whether other children live with

respondent, ages of other children living with respondent)

Trust question [OxIS; also used widely as a social capital proxy, e.g. by

the ONS]

Ever read any shared online support messages posted by carers in the

last three years [FILTER QUESTION]

Everyone was

routed back to

this section

For people

who have read

shared online

support

messages in

the last three

years

Invitation to participate in interview stage. Gives details of:

Information about what is involved

Freedom to change mind about participating when contacted

Request for contact details within survey so survey responses and

interview can be linked to avoid repetition

Reassurance that use of data and contact details will be confidential, that

surveys and survey and interview data anonymised after collected and

that data will be stored in accordance with the Data Protection Act

(1998)

Option to use a pseudonym or part of name, or to contact me separately

via email or phone

Contact details form (name/pseudonym; email; telephone number) and

preferred method of contact.

Everyone who

answered yes

to the question

about reading

shared online

support

messages

posted by

carers in the

last three years

352

Section

heading


respondents

were routed

to this section

Thank you Respondents thanked for participating

Contact details of researcher included for any questions or to request a

copy of the overall results

Space for additional comments, additions or clarifications

Details of how to post back including FREEPOST address if envelope

mislaid or missing

All

respondents

were routed

here and it was

on the back

page of the

paper survey

and was the

final page of

the online

survey.

353

Appendix 5: Details of recruitment process

Recruitment through online support sites and groupsWhen recruiting through online support sites, I approached all gatekeepers and

asked for permission to share information before posting. Where email contacts

were available I sent emails about my research from my University of Surrey

account. Otherwise, I messaged gatekeepers directly through the forum or site. I

created some research-specific accounts on Facebook, Twitter and Carers UK’s

online forum for this purpose. I made it clear that I was a researcher in all my

online interactions and displayed this information prominently on my profiles.

Recruitment posts were made in a range of online spaces specific to parents of

people with Rett syndrome and broader disability sites, Facebook groups, email

groups, Twitter (using the #RettSyndrome hashtag) and gaining ‘retweets’ from

Rett-specific charities) and carers’ forums. They also included key information

from the recruitment letter (Appendix 6). In these posts I offered to send paper

surveys if preferred, but no requests for paper surveys were received. The posts

varied slightly depending on the context of the online support space – for

example, Twitter, which limited the characters available to 140. To overcome the

limitations of these restricted online formats I also created a website

(http://rettonlinesupport.wordpress.com/) so I could provide links to a page

with more detailed information about my research for interested parents

(Appendix 7). This site also hosted information about my affiliation to the

University of Surrey (and authenticated this through my email address and a link

to my PhD information page on the University of Surrey website) as well as my

experience of working with carers and more information about my research. I

posted at different times of day, but concentrated on Friday evenings, as most

sites were the most active on Saturday morning, meaning my post was

prominently displayed at this time.

It is not possible to assess how many eligible parents saw my requests for

research on forums and sites. Facebook group membership varied between 200

people with a personal or professional interest in Rett syndrome in the UK and

2500 people interested in fundraising for a cure internationally, but it was not

possible to see how many people had ‘seen’ a post in a group. This was even

354

http://rettonlinesupport.wordpress.com/

harder to estimate for public Facebook Pages, which can be viewed through

search engines by people without Facebook logins. There are similar unknowns

around the use of Twitter, where the number of ‘Followers’ of a Twitter user is

not commensurate with the number of people who may see a post. In all cases,

forums and sites are likely to be viewed by people other than parents, and in the

case of the more generic carers’ groups, by carers and professionals with no

connection with Rett syndrome.

Recruitment of Rett UK members by letter

First mailing

A letter (Appendix 6), a paper version of the survey and a Freepost envelope

were sent to 675 households on a database created by Debbie Main at Rett UK,

which included “UK families who are not bereaved with offspring of all ages

[with Rett syndrome]” (D. Main, personal communication, August 1, 2012). The

letter gave details of the research and a link to an online version of the survey if

preferred. While creating a mail merge address list from this database at Rett

UK’s office I noted that there were some non-UK addresses on the list, so I

excluded these. I printed one set of address labels while in Rett UK’s office, which

I attached to the mailing envelopes and sent from the University of Surrey on 21st

November 2012. This approach has been used in previous research and was

agreed by Rett UK’s Research Committee (D. Main, personal communication,

August 1, 2012) and the University of Surrey Ethics Committee (see Appendix 2).

Second mailing

The second mailing aimed both to encourage more parents to complete a survey

and to collect information about non-response to the survey. It contained a

follow-up letter (Appendix 10), a form (Appendix 11) and a Freepost envelope

addressed to myself. The follow-up letter explained that there was a second

period of data collection and outlined the benefits of participation and the

importance of getting as many responses as possible. Those who had

participated already were thanked for their valuable contribution and those who

355

were interested in taking part directed to a shortened link for the online survey

or the ‘request a new survey’ section on the form (Appendix 11). Those who

were not parents were asked to indicate this by ticking the box in Section B on

this form. Those who were not interested in taking part in the full survey were

asked if they would consider answering one question on the form (‘reasons for

not participating’). It was emphasised that this was anonymous, that filling it out

was entirely voluntary and there would be no further mailings save any

requested surveys. Options for not returning a survey included ‘a lack of interest

in the topic due to not using online support and/or the Internet’, or ‘a lack of

time due to caring responsibilities and/or work’. There was also a free response

box for ‘other’ reasons.

Debbie Main at Rett UK created a subset of 746 records of UK-resident ‘family

members’ who were not bereaved, had indicated they were happy to receive

mailings and were on the membership system at the time of my last mailing. This

had 71 more parents on it than the first mailing list, which had been deleted from

the system. Information from ineligible survey responses suggested the first

mailing went to some parents who should have been excluded. This included a

parent who had volunteered for an interview although she had opted for ‘no

mail’ on Rett UK’s system and, most unfortunately, a bereaved parent whom it

appeared had been flagged as bereaved on the record system before the initial

mailing. It is possible therefore that when the first mailing was prepared for me

that the wrong parameters were chosen in error.

I therefore took a more active role in creating the database in order to ensure

my sampling frame was as accurate as possible. I double-checked the newly-

generated list against records of bereaved parents, deceased people with Rett

syndrome, non-UK households and ‘no mail’ preference parents; none were

found. I also removed the details of people who had contacted me during the first

mailing to confirm they were ineligible from this second list. I made a detailed

search of electronic and paper records for family relationship information about

non-specified ‘family members’ and excluded 127 people who were not parents.

The final eligible sampling frame list of 619 households included 555 confirmed

parents, including 4 foster parents, plus 64 unidentifiable ‘family members’. I

saved a separate copy of this database and created an anonymised version of it in

356

line with the Information Commissioner’s Office’s code of practice on

anonymisation of data (ICO, 2012)2. Finally I excluded 40 parents who had

volunteered to participate in my research (so were named respondents I knew

had already completed the survey), one parent who was no longer fostering a

child with Rett syndrome and one parent of a child whose diagnosis had been

changed from Rett syndrome to something else. I prepared and addressed the

mailings as before.

2 Information Commissioner’s Office. (2012). Anonymisation: managing data protection risk code of practice. Wilmslow: ICO.

357

Appendix 6: First mailing letter to parents (Rett UK members)

Dear Rett UK member(s),

I am a PhD student working with Rett UK to explore the use of online support by UK parents of people with Rett Syndrome. I am interested in the views of all parent members, whether or not you have ever used the Internet or online support. This research has received a favourable ethical opinion from the University of Surrey’s Ethics Committee and approved by Rett UK’s own research committee.

Why are you doing this research?I have worked and volunteered in educational, voluntary and statutory services for people with learning disabilities and their parents. I became interested in the potential benefits of online support but also who it does and doesn’t suit and its limitations. I aim to make recommendations about support for parents of people with Rett Syndrome.

What is involved?A survey that should take between 10-15 minutes to complete, depending on how many questions are relevant to you. You’ll be able to skip two whole sections and possibly more – please see directions in the paper version of the survey (this happens automatically online). There is an option to participate in the next stage of the research for current and recent users of online support. Please choose one person in your household to fill out the survey about their own experiences and views.

How will my information be protected?Data from the survey will be kept securely in accordance with the Data Protection Act (1998). Your identity will not be revealed to anyone else at any point. Only anonymised summaries of data will be shared as part of my PhD report and in related publications, presentations and teaching materials. You do not have to complete any questions you don’t wish to answer. However, please be aware that if you do return the survey your data cannot be withdrawn at that point.

How do I access the survey?The survey is available online here: https://www.surveymonkey.com/s/RettSyndrome and a paper version is included with this letter (with a Freepost envelope for return). It is possible to pause the online survey and return to it – details are on the first page. Please complete the survey by 21st December 2012.

If you have any further questions, please feel free to contact me using the details above. Thank you very much for taking the time to read this letter

Yours sincerely,

358

https://www.surveymonkey.com/s/RettSyndrome

Jo Belcher

359

Appendix 7: Recruitment article for Rett UK’s newsletter

Jo Belcher is a PhD student who is working with Rett UK to find out about the

usefulness (or otherwise!) of online support websites and email groups for

parents of people with Rett Syndrome (e.g. the Rett UK Facebook page and the

PMLD Forum Network email group). Jo is interested in whether online support is

something that suits some groups of parents more than others or if its usefulness

changes over time. She would like to hear from as many parents of people with

Rett Syndrome living in the UK as possible, whether or not you use online

support and even if you don’t use the Internet.

Jo is asking parents to fill out a paper or online survey that will take

between 10-20 minutes to complete (depending on your experiences of online

support). Surveys are being posted to members who are parents of people

with Rett Syndrome living in the UK.

Jo will work closely with Rett UK to make sure the findings from her work

can improve support for parents of people with Rett Syndrome.

The survey is available online here:

https://www.surveymonkey.com/s/RettSyndrome or ask Jo to send you a paper

copy with a Freepost envelope ([email protected]; 07583 641437).

360

mailto:[email protected]

https://www.surveymonkey.com/s/RettSyndrome

Appendix 8: Second ethics approval letter from University of Surrey Ethics Committee

Left intentionally blank to preserve numbering. PDF letter available as a separate attachment.

361

Appendix 9: Letter with second mailing to Rett UK members

Dear Rett UK member,

I wrote to you at the end of November last year to ask if you would complete my survey about use of the Internet and online support by parents of people with Rett syndrome. I am interested in all parents’ views, including people who don’t use the Internet or online support at all. Responses so far show a wide range of experiences and views about the Internet and online support. I think my findings will help Rett UK to understand if, when and how online support is useful to parents. However, it is only by hearing from nearly everyone I have written to that I can be sure the results truly represent parent members of Rett UK. I have therefore extended the deadline for the survey to 30th April 2013. If you are not interested in taking part or are not a parent, please consider completing one question on the enclosed form instead (see details below) as this will make an important contribution to helping me understand the results.

If someone in your household has already filled out a survey, I would like to say thank you. Each response is extremely valuable. Very little is understood about the benefits and limitations of Internet use and online support for parents of people with Rett syndrome and each response will help to change that.

If you still have the survey and wish to complete it, please return your completed survey in the enclosed Freepost envelope.

If you would like to take part but don’t have a survey, it is available here online: http://ow.ly/gvnko If you would prefer a new paper survey, please complete Section A on the enclosed form and return it to me with your address in the enclosed Freepost envelope. I will shred my copy of your address as soon as I have posted your survey.

If you are not a parent of someone with Rett syndrome, please consider letting me know by ticking the box in Section B and returning it to me in the enclosed Freepost envelope. Family members who are not parents are enormously important to Rett UK. However this study is about parents' use of the internet and online spaces and returning the form will help me understand how much the results reflect parent members. Return is entirely voluntary.

If you are not interested in taking part in the survey, please consider answering one question (in Section C on the form - on the back). This is about your reasons for not wanting to take part. This will help me understand if there is a difference between people who took part and people who didn’t. I can then estimate how much results might reflect the views of all parent members of Rett UK. There is no way of tracing who has sent this form so it is completely anonymous. This is of course voluntary, so although I hope you will return it, this is entirely up to you.

362

http://ow.ly/gvnko

I won’t be contacting you again directly unless you’ve requested another survey or volunteered to take part in the next phase of my research. However, I will be writing pieces for Rett UK’s newsletter to share the overall findings from different stages of my research and sources of online support that parents have found useful.

Thank you for your time in reading this letter and I wish you the very best.

Yours sincerely,

Jo Belcher

P.S. If you have any questions or comments, please feel free to contact me by post (please use the enclosed envelope or Freepost address as above), by email ([email protected]) or by telephone (07583 641437).

363


Appendix 10: Form sent with second mailing to Rett UK members

Survey follow-up form

Every response is important and will help me to understand how much the results of my research reflect parent members of Rett UK. Please return using the Freepost envelope enclosed with this mailing or the address on the reverse of this form.

If you…

…are interested in taking part but need a new survey, please complete Section A

…are not a parent of someone with Rett syndrome, please complete Section B

…are not interested in doing the survey, please complete Section C (overleaf)

A. Please send me a new survey and Freepost envelope.I have enclosed the envelope from your letter

OR

My address is:

364

B. I am not a parent of someone with Rett syndrome

C. I don’t wish to take part in the survey because…

(Please tick ALL reasons that apply to you)

…I am not interested in the research topic because I don’t use online support

…I am not interested in the research topic because I don’t use the Internet

…I don’t have time to fill out this survey because of my caring responsibilities

…as a working parent I don’t have time to fill out this survey

Other reasons (please write these in the box below)

Thank you very much for completing this form. Your response is really valuable and I appreciate you taking the time to reply. Please return this form in the Freepost envelope that came with this letter.

If you did not receive an envelope or have mislaid it, please return this form to the address below. You do not need to use a stamp. Thank you.

Jo BelcherSociology Department (K5) FREEPOST GI197University of SurreyGuildford

365

Surrey GU2 5XH

366

Appendix 11: Additional demographic data on survey respondents

n %

Highest level of qualification

No qualifications 17 9.0%

Basic and secondary education 58 30.9%

Further education 24 12.8%

Higher education 82 43.6%

Not given 7 3.7%

Household income

Under £30,000 per year 67 35.3%

£30,000 to under £40,000 per year 30 15.8%

£40,000 to under £50,000 per year 15 7.9%

£50,000 to under £60,000 per year 14 7.4%

£60,000 to under £70,000 per year 8 4.2%

£70,000 to under £80,000 per year 11 5.8%

£80,000 or over per year 14 7.4%

Not given 31 16.3%

Years since child’s diagnosis received

0-4 years ago 33 17.4%

5-9 years ago 37 19.5%

10-14 years ago 38 20.0%

15-19 years ago 28 14.7%

20-24 years ago 25 13.2%

25-29 years ago 18 9.5%

30-34 years ago 4 2.1%

Not given 7 3.7%

Residential status of child with Rett syndrome

Lives with all the time 138 72.6%

Lives with part of the time 20 10.5%

Lives elsewhere 28 14.7%

Not given 4 2.1%

367

Appendix 12: Record of online support space useRecord of Online Support Space Use

When should I fill this out?

When you read or post a message related to caring for someone with Rett syndrome that can be read by all other people using a group or site.

Examples of places you might read and post these messages are: Email groups (e.g. PMLD Network Forum) Facebook groups (e.g. Rett Syndrome Group for UK families) Facebook pages (e.g. Rett UK page) Discussion or message boards (e.g. Mencap Families’ Forum) Twitter – e.g. under hashtags like #rettsyndrome or tweets to other carers Chat rooms Blogs and websites

Filling out this recordPlease follow the directions after each question so that you’re only asked relevant questions. If you run out of space, either keep typing (the box will expand) or attach another page.If you forget your unique identification word, email me on [email protected] or call me on 07583 641437.An online version is also available here: http://ow.ly/heiA5

Returning the record by post

Please contact me if you need more Freepost envelopes.

368

http://ow.ly/heiA5


1. What is your unique identification word? (only fill this out if you are posting this back)

2. What was the date when you read or posted this message? (Please enter in box)

3. Was it an email sent out to members of an email group (e.g. an email sent by the PMLD Network Forum)? (Please place an ‘x’ in the box next to your answer)

No

Yes - Skip to Question 12

4. Do other people have to log in to read messages on this site or group? (Please place an ‘x’ in the box next to your answer. If unsure, choose ‘Yes’)

NoYes

- Skip to Question 12

5. Did you post any messages yourself? (Please place an ‘x’ in the box next to your answer)

No - Skip to Question 9Yes

6. Did you use your own name? (Please place an ‘x’ in the box next to your answer).

No - Please continue to Question 7Yes

- Skip to Question 9

369

7. Are you happy to tell me the username you used? (Please place an ‘x’ in the box next to your answer)


8. What username did you use? (Please write in the box below)

9. Please provide a link/links to the page(s) of the site or group you visited (please enter in the box below)

That’s all the information I need. Thank you for filling out this record – your help is invaluable. Please either post this back to me using one of your Freepost envelopes or attach it to an email to [email protected]

370


10.What was the name of the site or group you visited (e.g. Rett UK Parents Group on Facebook). (Please write in the box below)

11.Please copy and paste [or write] your comment(s) into the space below


371


12. What is the name of the site or group where you read or posted the message (e.g. Rett UK Parents Group on Facebook)? If it was an email sent from an email group, what is the name of the email group (e.g. PMLD Network Forum)?(Please write in the box below)

13.Did you write any comments (if on a website or group) or send any emails (if using an email group)? (Please place an ‘x’ in the box next to your answer).


14.Please copy and paste [or write] your comment(s) into the space below


372


15. Please write a summary of the topic(s) of discussion you read in the box below

**PLEASE DO NOT COPY AND PASTE COMMENTS FROM OTHER PEOPLE**(Please enter in the box below)


373


Appendix 13: Covering letter for Stage 2 participation

[Date]

Dear [XXXX],

Thank you for your interest in my PhD research and for talking to me about it today.

As promised, I've enclosed an information sheet and consent form. Please read through the information sheet as this has a bit more detail in it about this next stage. If you are happy to take part in this next stage, please sign the consent form and return it to me in the Freepost envelope enclosed (you won’t need a stamp). Once I receive your signed consent form I'll be in contact again to set the interview up.

If you have any questions don't hesitate to contact me on [email protected] or on 07583 641437.

Thanks and all the best,

Jo Belcher

374


Appendix 14: Information sheet for Stage 2

Online support for parents of people with Rett syndrome – Stage Two

Thank you for your interest in taking part in the second part of my research.

What is this part of the research about?My research is about the use of online support by UK-resident parents of people with Rett syndrome. The aim of this stage is to explore experiences of sites and email groups where parents of people with Rett syndrome can access online support from other carers. The results from this research will be used to make recommendations about the provision of support for parents of people with Rett syndrome.

What is involved?An interview. The aim of the interview is to explore your experiences of having used different kinds of sites or email groups. No sites or users of sites will be named in my research. I am just interested in how people have experienced and used a range of online places where support can be found, how these spaces work and how they differ. The interview will be recorded on a Dictaphone so that I have a clear record of our conversation and can concentrate fully on the interview.

How long will it take?The interview should take about one-and-a-half to two hours.

Where and when will the interview take place?I will arrange with you a suitable time, place and way to have the interview. If it is not possible to meet for a face-to-face interview we can carry out the interview using Skype, telephone or (if none of the previous ways are feasible) email.

What if I change my mind?You can withdraw from participating in Stage Two without consequences and without needing to explain why. If you withdraw during the interview, any interview data collected to that point will be shredded or deleted.

How will my information be protected?The recording of the interview and the transcript made from it will be stored securely in accordance with the Data Protection Act (1998). Your identity will not be revealed at any point. Only anonymised summaries or excerpts of interview data will be shared as part of my PhD report and in related publications, presentations and teaching materials.

If you have any questions, please contact me on [email protected] or 07583 641437.

375


This research has received a favourable ethical opinion from the University of Surrey’s Ethics Committee and Rett UK’s ethics board.

If you are interested in taking part, please sign and post back the consent form that came with this information sheet.

I will send a reminder email (or text) to people I’ve not heard back from, but will assume that anyone who doesn’t respond at that stage is not interested in taking part.

Thank you for taking the time to read this information.

376

Appendix 15: Consent form for Stage 2

By signing this form, I confirm that:

I have read the Information Sheet about this stage of the research (‘Online support for parents of people with Rett syndrome – Stage Two’) and understand what it involves.

All my questions about the project have been answered to my satisfaction. I freely consent to take part in the study, which involves filling out a record of

online support space use, as agreed with the researcher, and being interviewed on the topics outlined in the Information Sheet.

I agree for the interview to be audio recorded. I understand that I am free to withdraw from the project at any time without

needing to explain why.

The researcher confirms that:

Your personal data will be held securely and processed in the strictest confidence in accordance with the Data Protection Act (1998).

Your responses will be made anonymous in the reporting of the results of this project.

The researcher will meet any reasonable expenses incurred in travelling to an agreed place for the interview.

Name of participant:________________________________________________________

Signed:________________________________________________________

Date:________________________________________________________

Name of researcher: Jo Belcher

Signed:_______________________________________________________

Date:_______________________________________________________

377

Appendix 16: Information after interview

Further information and support

Thank you for taking part and I hope you had an enjoyable experience.

If you have any further questions about the project and/or would like a summary of the results, please feel free to call me on 07583 641437 or

email me at [email protected]

I also have a website where I post information about my research http://rettonlinesupport.wordpress.com

I will be adding links to all the online support sites I have heard about in my

interviews here soon.

If you have any concerns, feel free to contact my supervisor, Dr Christine

Hine, on 01483 686986 or email her at [email protected]

If anything we’ve discussed has brought up difficult memories or feelings, there are sources of support available, some of which are listed

below and overleaf.

Carers UK

www.carersuk.org

0808 808 7777

Forum: http://www.carersuk.org/get-support/online-support

International Rett Syndrome Foundation (IRSF) – American organisation

www.rettsyndrome.org

Email group: http://www.rettsyndrome.org/content/view/218/495/

378

http://www.rettsyndrome.org/content/view/218/495/

http://www.carersuk.org/get-support/online-support

http://www.carersuk.org/


http://rettonlinesupport.wordpress.com/


Mencap

www.mencap.org.uk

0808 808 1111

Mencap Northern Ireland: [email protected];

Mencap Cymru: [email protected];

Mencap (England): [email protected]

Forum: http://www.mencap.org.uk/forum

Mumsnet (special needs threads)

http://www.mumsnet.com/Talk/special_needs

PMLD Network Forum (email group)

http://www.pmldnetwork.org/about_us/join.htm

Rett Syndrome Parents Yahoo Group

http://health.groups.yahoo.com/group/RettSyndromeParents/

Rett UK

www.rettuk.org

01582 798911

[email protected]

Twitter: @RettUK

Facebook group: http://www.facebook.com/RettUK

Samaritans

http://www.samaritans.org/

08457 90 90 90

[email protected]

Special Kids in the UK Forum

http://www.specialkidsintheuk.org/forum/forum.php

379

http://www.specialkidsintheuk.org/forum/forum.php


http://www.samaritans.org/

http://www.facebook.com/RettUK


http://www.rettuk.org/

http://health.groups.yahoo.com/group/RettSyndromeParents/

http://www.pmldnetwork.org/about_us/join.htm

http://www.mumsnet.com/Talk/special_needs

http://www.mencap.org.uk/forum




http://www.mencap.org.uk/

Appendix 17: Interview schedule

IntroductionThank you for agreeing to take part in my research. I’ll be talking to you about your experiences and views of different sites and email groups that share online discussions between parents of people with Rett syndrome. I’ll start off by asking you about your general experiences of visiting them, then we’ll move on to look at the places mentioned in the record you completed. We’ll then talk about any other sites or email groups you’ve used. Finally I’ll ask you a few questions about how they compare with each other. Where I can, I’ll bring in your survey responses so you don’t have to repeat yourself.If at any point in the interview you wish to take a break, or stop, let me know.If for any reason you don’t want to answer a question, just say and I’ll move on.

Experiences in generalSo, in the survey you said you’d been using the Internet for about 15 years, so more or less from the start.

What sorts of things do you tend to use it for at the moment?

You use Facebook, don’t you? About how long have you used that for? How do you tend to use that?

And how do you tend to use Twitter? Who do you follow?

Can you remember the first time you found a site or email group that had discussions on it between parents of people with Rett Syndrome?

Can you tell me about it?

And since then have you used these kinds of sites and email groups fairly regularly or does it depend?

(What does it depend on?)

Do you think you use them more or less now than you used to, or is it about the same?

[If different] What has changed, do you think?Where do you tend to go first when you’re looking for advice about caring for your daughter with Rett syndrome (either online or offline)?

Where/how do websites and online groups fit into that?

Recorded examples

380

Read but didn’t post

What did you think of the discussion you read/took part in? Was it helpful or not or a mixture?

[If not helpful] What would have been helpful?[If helpful] how was it helpful? What benefits did you get from it?

Did you get everything you needed?Did it help you to think about something differently or to solve a problem?Was it helpful in other ways?

Did you think about posting a response yourself?If not, what were your reasons for not posting?Under what circumstances might you have posted a response?

Posted

What did you think about the responses you got here/not getting any response here?

[If got support]: do you feel you have to give support in return or not really?If yes – do you have to give support back to the same person?Does this apply to everyone equally?How does it work?

[If posted: If gave support] – do you expect some support in return?If yes – from whom – the same person?Does this apply to everyone equally?How does it work?

Have you posted on here before more than once or twice?Is this/are these typical of the kinds of request you’d make here?

[If not] what would you usually do?[If not] what is it usually like?

Is this/are these typical of the kinds of responses you get here?

Is there anyone on this site/email group you’d consider to be a close friend – e.g. someone you can trust to confide in?

[If no] so would you consider everyone to be more like acquaintances, or are there some people you know even slightly better than others?

381

General questions for all sites/groups (including records)

If not as part of recordCan you remember the last time you used this site/email group?

Do you use this site/email group regularly?[If no] Have you ever used this site/email group regularly?[If no] When did you used to use this site/email group? What sorts of

things did you find on it? [If use regularly or have used before] What is it you particularly like or find helpful about this site/email group? What kinds of things are you looking for when you look at this site/email group?

Have you ever posted on this site/email group?

If postedWhat sorts of things have you posted on here?What kind of a response did you get?How did you find that?Have you ever got any practical help from this site/email group – e.g. for people to provide help to fight an injustice?Have you ever got any advice and information to solve a problem on this site/email group?Have you ever found this site/email group a good place to spend time with others, if you feel alone or want to socialize with other parents?Have you ever found this site/email group helpful when you feel you need to spend time with people who understand your situation and show concern for you?Have you ever been challenged on this site/email group by someone who doesn’t agree with you?Please tell me more about this

What did you say? How did they respond? What happened then?

Would you post again?[If so] Under what circumstances?[If not] Can you tell me more about your reasons for deciding that?[If not] Can you imagine any circumstances where you might post

on this site again?

If not postedMight there be circumstances that might lead you to post on here?

[Prompts: Can you tell me what these might be?]Would you use this site/email group again, do you think?

[If so] Under what circumstances?

382

[If not] Can you tell me more about your reasons for deciding that?[If not] Can you imagine any circumstances where you might use

this site/email group again?Have you ever got any advice and information to solve a problem on this site/email group?Have you ever found this site/email group helpful when you feel you need to spend time with people who understand your situation and show concern for you?Have you ever seen any kind of disagreement on this site/group?Please tell me more about this

What was said? How did they respond? What happened then?Did this change how you saw or used the site at all?

If you were describing this site/email group to another parent of someone with Rett Syndrome, what would you say?

Who would you recommend it to? Who wouldn’t you recommend it to?In general, who do you think this site is for? (Who is most likely to use it? Who is least likely to use it?)

[REPEAT ABOVE QUESTIONS FOR EACH SITE/EMAIL GROUP]

Other sites not shown

Are there any other sites you visit regularly that we’ve not mentioned yet?[REPEAT ABOVE QUESTIONS FOR EACH SITE/EMAIL GROUP FROM PREVIOUS SECTION]

Comparing sitesI’m interested in finding out whether there are differences in what it is like to post on a forum or to read one without posting.

What do you think – are there any differences or not really?What are these?

Which do you prefer to do generally, or does it depend?Can you tell me more about that, please?

Compare and contrast sitesNow I’ll be asking you some questions that compare the different sites and email groups you use [Have printouts of example pages and list with sites and logos for prompts, selected to show those that have been used. Jot down any additional examples on a piece of paper].

Which online and offline places (if any) do you find most helpful for……when you need practical help – e.g. for people to provide help to fight an

injustice…when you need advice and information to solve a problem.…when you just want to spend time with others, if you feel alone or want to socialize with other parents.

383

…when you feel you need to hear from people who understand your situation and show concern for you

Are there some online places where you feel you have things in common with others who use the site?

What sorts of things do you have in common?Are there some where you don’t have so much in common?

What kinds of things are different?

Are there some online places where you feel you have closer links than in others? People you know better or might consider friends/are on friendly terms with?

Are there some online places you can say things that you couldn’t say on others?What kinds of things?Where do you think you could say that?Where couldn’t you?Have you seen anyone do this/done this yourself?

[If so] what happened?[If not] what do you think would happen?

Are there any online places where you could go to ‘let off steam’ when things get too much?

Would you feel comfortable doing that on any other site or email group? If not, why not? Which ones couldn’t you use for letting off steam? What do you think would happen if you tried to do that or did that

by accident? Has that ever happened to you? [If use different sites] Have you seen that happen to anyone else?Do you do anything to stop that from happening to you?

(e.g. use different usernames, etc.?) (What would happen if people linked these identities

together?)

Are there any sites or email groups where you feel you have to be a bit careful about what you say?

Which ones?(for each) Can you give me some examples of what you might avoid

saying?

On which site or group do you feel most comfortable?What is about it that makes you feel comfortable, do you think?

Where do you feel least comfortable?What is it about them/those that makes you feel less comfortable?

[Could go through particular sites again if difficult to discuss in abstract]

384

Present list/examples of some other sites. I’ve got some other sites here – have you ever seen any of these?

Go through ones that have seen before – each in turn.What’s your view of them?

What is it about the other sites that makes you prefer them to these sites?

Who do you think these other sites would appeal to?

What is it about these sites that makes them less appealing to you?

Repeat with other sites

Are there any other sites you’ve seen where something has put you off from using them?

Have you ever had the following things happen to you on a site[If ever posted] Had your post ignored?

[If so] Did you carry on posting on that site/email group as before?

[If ever posted] Had some kind of a misunderstanding with someone else?[If so] Can you tell me more about that?[If so] Did you carry on posting on that site/email group as before?

[If ever posted] Made to feel uncomfortable in any way?[If so] Can you tell me more about that?[If so] Did you carry on posting on that site/email group as before?

[If ever posted] Had someone challenge you?[If so] Were they rude to you or aggressive in how they challenged

you?Did you carry on posting on that site/email group as

before?

Strongly disagreed with what others were saying?Did you continue to use that site/email group as before?

Found it difficult to unpick jargon or language that people used?Did you continue to use that site/email group as before?

When using these kinds of sites or email groups have you ever been asked to get involved in a campaign? For example, some attempt to get something changed.

(If yes) what happened?

[If posted] Have you ever asked anyone else to get involved in a campaign or attempt to change something?

385

Summary and final questionsOk, just a few question now to sum up.What would you say, overall, is the best thing about using these email groups and sites?And how about the limitations? What would you say these were?

Before we finish, is there anything else you’d like to add about your experiences of using these sites and groups?

Did you have any questions for me?

Thank you ever so much for your time, I really appreciate it.

386

Appendix 18: Details of interviewees’ use of the Internet and details about their children with Rett syndrome

Years using Internet n

1-5 years 1

6-10 years 9

11-15 years 7

16+ years 1

Not known 1

Self-rated ability to use the Internet

Good 6

Excellent 13

Not known 1

Recency of reading carers' groups or sites

6 months to under a year ago 1

31 days to under 3 months ago 1

0-30 days ago 17

Not known 1

View on whether reading about other parents' experiences has made me

feel less alone

Neither agree nor disagree 1

Agree 7

Agree strongly 11

Not known 1

View on whether reading information and advice in shared online support

messages has helped me to solve problems

Neither agree nor disagree 3

Agree 7

Agree strongly 9

Not known 1

Recency of posting a message in a carers' site or group

31 days to under 3 months ago 2

0-30 days ago 13

Never 4

Not known 1

387

Age of child with Rett syndrome n

0-4 years old 4

5-11 years old 3

12 to 16 years old 8



Age child received diagnosis of Rett syndrome

0-4 years old at diagnosis 16

5-11 years old at diagnosis 3

Years since diagnosis received

0-4 years ago 5

5-9 years ago 7

10-14 years ago 3

15-19 years ago 4

Residential status of child with Rett syndrome

Lives with all the time 10

Lives with part of the time 1

Lives elsewhere 8

388

Appendix 19: Results of tests for mode effects in survey responses

I carried out some recommended tests taken from papers exploring mode effects

in online and offline data (Borkan, 2010; Dillman et al., 2009; Fuchs, 2009)3.

I found no evidence of scoring at the extreme ends of a question scale by

mode (using a question about confidence in health professionals). The mean

response to this question was very similar (paper was 4.0 and online was 3.8). As

there were mode differences among age groups (with older parents preferring

paper surveys) I also split the data by age groups to compare differences in the

same question by mode, finding no differences in average or extreme scoring.

This suggested no mode effects masked by subgroup differences in age. This was

however a little difficult to interpret as in higher age groups there were smaller

numbers of respondents, so percentages could be misleading.

I also tested for mode effects in the completion of a ‘further information’

open response box. A similar proportion of respondents completed this box

(26.7 per cent on the paper and 23 per cent on the web survey) and the

difference was not statistically significant. Similarly the mean number of words

3 Borkan, B. (2010). The Mode Effect in Mixed-Mode Surveys: Mail and Web Surveys. Social Science Computer Review, 28(3), 371–380. doi:10.1177/0894439309350698

Dillman, D. a., Phelps, G., Tortora, R., Swift, K., Kohrell, J., Berck, J., & Messer, B. L. (2009). Response rate and measurement differences in mixed-mode surveys using mail, telephone, interactive voice response (IVR) and the Internet. Social Science Research, 38(1), 1–18. doi:10.1016/j.ssresearch.2008.03.007

Fuchs, M. (2009). Differences in the Visual Design Language of Paper-and-Pencil Surveys Versus Web Surveys: A Field Experimental Study on the Length of Response Fields in Open-Ended Frequency Questions. Social Science Computer Review, 27(2), 213–227. doi:10.1177/0894439308325201

389

written in this box was almost identical (12.2 for paper, 12.5 for online) and

characters (without spaces) were also extremely similar, 55.7 on paper and 56.5

online. Neither comparison reached significance. The lack of differences found

mean I could combine data across modes without concerns about affecting the

data.

390

Contents: Volume II - epubs.surrey.ac.ukepubs.surrey.ac.uk/807813/4/Final thesis JH (Vol II)...

Documents

Transcript of Contents: Volume II - epubs.surrey.ac.ukepubs.surrey.ac.uk/807813/4/Final thesis JH (Vol II)...