Submitted for the Degree of Doctor of Philosophy

Accessing social capital and ‘goods’ online: the contingent role of the Internet in parenting someone with Rett syndrome

Jo Hope

School of Social Sciences

Faculty of Arts and Human Sciences

VOLUME II: APPENDICES

Supervisors:

Dr Christine Hine

Dr Sarah Earthy

Contents: Volume II

This 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

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

Appendix 3: Full survey questionnaire

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

Appendix 5: Details of recruitment process

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

Appendix 7: Recruitment article for Rett UK’s newsletter

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

Appendix 9: Letter with second mailing to Rett UK members

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

Appendix 11: Additional demographic data on survey respondents

Appendix 12: Record of online support space use

Appendix 13: Covering letter for Stage 2 participation

Appendix 14: Information sheet for Stage 2

Appendix 15: Consent form for Stage 2

Appendix 16: Information after interview

Appendix 17: Interview schedule

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

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

Appendix 1: The Stages of Rett syndrome

Stage name / When it occurs / Description
The 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.

The stages of Rett syndrome (based on the description given inSmeets et al., 2011).

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.

Appendix 3: Full survey questionnaire

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

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

Section heading / Content of section / Which 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.
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.
Section heading / Content of section / Which 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
Section heading / Content of section / Which 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.

Appendix 5: Details of recruitment process

Recruitment through online support sites and groups

When 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 #RettSyndromehashtag) 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 ( 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 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).