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‘Tell it like it is’ – delivering information to young people undergoing bone marrow

transplantation

Duration of project:

March 2010 to March 2011

Date report submitted for publication: March 2011

Project team:

Michelle Wall, Clinical Practice Facilitator

Julie Armoogum, Clinical Practice Facilitator

June Vevers, Activity Co-ordinator

Linda Tompsitt, Staff Nurse

Edwina Cazenove, Staff Nurse

Nove Mathambo, Staff Nurse

Emma Cathcart, Clinical Nurse Specialist

Susie Pierce, Health Services Researcher for Children & Young People with Cancer

Caroline Knott, Clinical Practice Facilitator

Contact details:

Julie Armoogum, email: Julie.armogum@uclh.nhs.uk telephone: 08451 555 000 x 71136

Summary

This report describes the development of a project which aimed to create age appropriate information

for young people undergoing bone marrow transplantation (BMT). A secondary aim of the project had

been to positively influence the nursing culture to enable ward based nursing staff to feel empowered

to influence and facilitate changes in practice.

The project builds on previous work undertaken relating to information giving to young people. The

report begins with a brief description of the unit in which the practice development project took place,

current practice and reasons why it was felt the project was important. Section one describes the

aims of the project and outlines the methods adopted and the outcomes achieved. Section two is

more reflective and focuses on the role of communication and facilitation and the effect of these on

the development of the project. The report concludes with the impact of the project on the workplace

culture and recommendations for further practice development work.

Background

The Children’s and Young Peoples Cancer Service (CYPCS) at University College provides

specialised cancer care to children and adolescents aged 0 to 19 years and incorporates the Teenage

Cancer Trust Unit (TCTU). TCTU is an 18 bedded unit dedicated to the care of adolescents aged 13

to 19 years. It opened over 20 years ago and has traditionally been an oncology unit predominately

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supporting patients with a diagnosis of sarcoma, however, in recent years it has grown to

accommodate the sub specialities of haematology and bone marrow transplantation (BMT). This has

required and resulted in a broadening of the knowledge, skills and expertise of the ward based

nursing staff. The TCTU is the focus of this project.

Information provided to patients

Prior to BMT, patients receive verbal information from their adolescent BMT consultant and their

adolescent BMT clinical nurse specialist (CNS). This is complimented by a 38 A4 page written

information booklet. The booklet provides detailed information for patients about BMT and is directed

at the adult patient. It has been peer reviewed, validated with trust approval and is Joint Accreditation

Committee (JACIE) accredited. JACIE is a European governing body which regulates the standards

of procedures and practices across BMT centres (JACIE, 2011). During their BMT, patients and

families continue to receive verbal information from their BMT consultant and BMT CNS, alongside

information from ward based nursing staff. No information is routinely given using alternative media

methods.

There is wide spread agreement in both practice and the cancer literature that information giving to

patients is a fundamentally important part of patient care and service delivery (Jansen et al., 2010;

Koutsopoulou et al., 2010); and has also been recognised by numerous government policies

(Department of Health, 2007, 2011). When exploring the teenage cancer literature about information

giving, it can be seen that adolescents want age appropriate information (Morgan et al., 2008;

Zebrack, 2008; Armoogum et al., 2011); but many adolescents feel this need is not met (Zebrack,

2008; Negal et al., 2008; Morgan, 2009; Armoogum et al., 2011). This highlights the importance of

ensuring TCTU patients are given age appropriate information prior to BMT.

When reviewing current practice it appeared that whilst the adult written booklet provides accurate, up

to date and comprehensive information that may be useful to some patients and families, the TCTU

clinical team felt that adolescent patients may benefit from shorter, more digestible information

regarding BMT. The TCTU team felt that creating a supplementary age appropriate booklet to be

given in addition to the adult information could be helpful to patients and families. Furthermore, it was

recognised that adolescents use a variety of modern media to access information thus alternative

methods of information delivery, such as a DVD, could make a valuable contribution to improving their

understanding and experience of undergoing a BMT.

Information development prior to commencement of this project

In recent years the TCTU clinical team observed in practice that young people appeared to engage

when listening to their peers relate their experience of hospital, cancer and BMT during patient group

sessions. It was often expressed during feedback sessions, support groups and at one to one meetings

that young people found these sessions helpful. In 2009, the activity co-ordinator and clinical practice

facilitator (CPF) thought that the development of a DVD featuring patients speaking about their

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experiences could be an effective tool to help others prepare for BMT and together they decided to take

the idea forward. An email was sent to all TCTU nursing staff inviting them to take part in the project. It

was also discussed at a ward meeting, encouraging staff who had an interest to join the working group.

Two ward staff were recruited, permission was sought from the trust communications team and the

research and development department and arrangements were made to start filming. A contact in a

film-making company agreed to edit the videos for free and the team planned to show the DVD to

patients whilst attending outpatients prior to their BMT taking place.

Invitation letters to take part in the filming were sent to all adolescent BMT patients and their families.

Five patients and two of their siblings agreed to participate. It was planned that members of the team

would complete the filming, the adolescent psychotherapist was made aware of the project and

agreed to act as a referral for further support if required. Senior staff were aware that filming was

taking place on the unit.

Due to unforeseen difficult weather conditions two of the team members could not get into work on

the day of filming. As patients had managed to arrive on the unit and members of the team were

present and happy to do so, filming continued as planned. This sparked concern among some TCTU

staff not involved with the project as they felt the patients and relatives may not have had the

necessary support available from senior staff on the day. This resulted in a reflective session similar

to an After Action Review (AAR) lead by the modern matron. Whilst this highlighted that no patients or

families had come to harm, it was agreed that if future filming was planned and support was not

available, postponing the filming should be considered.

A complication then arose with regard to editing the film. The contact agreed to edit the film but

wanted to post the finished film on their charity website. This was unacceptable to the team as the

intention was to only use the film locally rather than publish to a worldwide audience on the web. This

was because the clinical team were concerned that local practices may differ from hospital to hospital

and thus they did not want to confuse patients or families that were being treated elsewhere. It was

therefore decided to pursue alternative editors. The activity co-ordinator edited the first clips to make

a three minute ‘taster’ of the film. The ‘taster’ film was used firstly, to demonstrate to the wider TCTU

team the vision for the DVD and secondly, to present at a conference to highlight to others working

with young people undergoing BMT what the project team were hoping to achieve.

The project was presented, and the ‘taster’ DVD shown, at the European Bone Marrow Transplant

(EBMT) 2010 conference, hosted in Vienna, Austria and went on to win third prize for best

presentation at the conference. After the presentation, the CPF sought to continue this work and also

to update the information booklet. The experience of developing the DVD indicated that the use of

different media formats could be helpful in improving the information given to young people

undergoing BMT and consequently their experience.

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The experience of facilitating this work had demonstrated to the CPF the influence of the workplace

culture on engagement and collaboration of staff and the need to fully engage with all stakeholders.

It was recognised by the CPF that the unit had undergone a myriad of changes that were on the cusp

of concluding. The unit had moved to a new hospital building and a new focus was being placed on

incorporating the care of haematology and BMT patients alongside the historical oncology patients.

Importantly for the nursing team, who had undergone multiple management changes in a short space

of time, a permanent and committed ward manager was appointed. By working with ward staff and

stakeholders and thus employing a collaborative approach it was felt that a line could be drawn under

a difficult past few years and positivity could be gained by a more stable future. This approach

allowed for a collection of staff to come together and develop age appropriate information for young

people that was needed for the adolescent bone marrow transplant service. The aim was to develop

something that would have a positive impact, improve service provision and would help disseminate

current and up-to-date information amongst ward staff. It was hoped that ownership of the work by

ward based staff would facilitate further learning, maintain improvements in care and information

giving and empower the workforce regarding BMT.

The initiative to develop a DVD was forward thinking and exciting for those involved and was primarily

aimed at meeting the needs of young people. Everybody was and is committed to delivering high

quality care to young people. The application to FoNS was sought because it was an external body

that specialised in practice development and supported innovative nursing practice. A successful

application meant that the working group would be able to access the support, guidance and

knowledge it needed to drive the project forward. The successful application was well received on the

unit and it was seen as a positive step.

The remainder of this report will describe the progress of the project over the 12 month period with the

FoNS Patients First Programme. This is divided into two sections. The first describes the aims, methods

used and outcomes achieved within the year and the second analyses the role of communication and

facilitation on the development of the project.

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SECTION 1: AIMS, METHODS AND OUTCOMES

Aim and objectives of the project

The aim and objectives of the project evolved from the work to date which is described above. The

initial aim was to:

• Develop age appropriate information for young people about BMT using a variety of

modern media

The following objectives were identified:

• To explore and understand patient views about current information delivery in relation to

the experience of having a BMT

• To engage with stakeholders to create age appropriate information for adolescent BMT

patients

• To evaluate information provided from the perspective of patients and families

A secondary project aim was:

• Use the development of age appropriate information as a vehicle for developing a more

effective and positive workplace culture

The following objective was identified:

• To facilitate a working group of nurses as a mechanism to enable ward based nursing staff to

feel empowered to change practice in their clinical environment

Methods and approaches

A number of methods and approaches were used to achieve these aims. These were:

• Development of working group

• Ensuring external support for the project

• An Appreciative Inquiry workshop for all stakeholders

• Patient questionnaires

• Development of DVD

• Evaluation of DVD

• Development of written information for young people

• Evaluation of written information for young people

• Exploration of modern media

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Details will now be given of each approach.

Development of a working group

The CPF, known from now on as the project leader, sought to formulate a working group of BMT staff

working both on the ward and within the BMT team to facilitate the project work and achieve the

stated objectives. All TCTU staff were invited to participate in the project and three ward nurses and

the activity co-ordinator also volunteered to join. The project leader requested the membership of the

second CPF, the BMT CNS and the health service researcher; this was to ensure that each clinical

team within TCTU was represented within the working group. The resulting working group consisted

of an activity co-ordinator, three ward based nursing staff, a health service researcher, two CPFs and

the adolescent BMT CNS. Key stakeholders were identified as the ward sister, the modern matron

and the adolescent BMT consultant.

With support from FoNS, the project leader planned to use practice development principles and

methods to enable ward based nursing staff to feel empowered to change practice in their clinical

environment.

Managerial sign-up is important if a project is to be successful in practice (Manley and Webster, 2006);

therefore, prior to starting the project, dialogue was undertaken between the project leader and

prospective stakeholders in order to release staff to develop the project. Due to difficulties with the

earlier DVD ‘taster’ project in terms of releasing staff to participate, it was felt that clear lines of

communication had to be established and maintained between the working group and key

stakeholders. It was agreed by the ward manager that ward based staff would be released for two and

a half hours a month to work on the project. This was timetabled through the staff rosters.

Initial meeting dates were set and shared by email as the project leader considered this to be the

easiest way of communicating with the working group which consisted of members from different

teams, each working on different days.

Ensuring external support for the project

The project leader hoped that applying to be part of the FoNS Patients First Programme would provide

structure and guidance to help drive the project forward. It was also anticipated that a successful

application to an outside organisation would offer external validation for the project and thus, it was

hoped, provide reassurance to senior members of staff working within the existing service of the

credibility of the project. Executive support and commitment for this project was provided by the Director

of Nursing signing off the application to FoNS and the local matron and ward sister supporting the

release of nurses to participate in the project.

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Attendance an external FoNS workshop

As part of being involved in the Patients First Programme, the project leader and some of the working

group attended workshops facilitated by FoNS. At the initial workshop, the project leader and working

group participants were given the opportunity to explore their workplace culture. This opportunity

enabled the project team to recognise the complexity of both the TCTU culture and the structure of

inter-professional working relationships. Consideration of practice development principles indicate that

the development of an effective person centred workplace culture is central to transforming care

(Manley et al., 2008).

From this workshop the project leader recognised the importance and value of all members of the

working group exploring the culture of their workplace and seeking to understand how this project fitted

in with the hoped cultural change for TCTU.

The project leader sought support from the FoNS practice development facilitators to help them to

identify ways of engaging with key stakeholders and the working group. It was agreed that FoNS would

facilitate a local workshop with all stakeholders using an Appreciative Inquiry approach; external

facilitation would enable the project leader to participate in the workshop as a member of the unit rather

than taking on a facilitator role.

A local Appreciative Inquiry workshop for all stakeholders

Appreciative Inquiry (AI) is a structured approach to practice change which focuses on identifying the

best in the people, their organisations and the world around them (Stavros and Kohnke Meda., 2003). It

is a cyclical approach to practice change that consists of four stages: Discovering, Dreaming, Designing

and Delivering (Cooperider and Whitney, 2002). This approach was selected because it meant that the

focus of the workshop would not be on trying to solve any problems resulting from the complex unit

culture, but would provide an opportunity for all staff to draw out and celebrate the positive aspects

about the unit and what it sought to achieve through caring for and working with young adults. It was

hoped that the engagement of all stakeholders in creating a dream for the service would promote

collaborative working and be the stimulus to take the project forward.

A full day workshop was arranged for May 2010 (see appendix 1) and was held in a conference room

owned by the hospital but off site. The content of the workshop included ‘identifying and appreciating’

the positives about TCTU, ‘dreaming and articulating the vision’ for the future and ‘turning the vision into

reality’. It was intended to conclude with an action plan (the Designing phase) and evaluation of the

workshop. The day was funded by the Patients First Programme grant.

All members of the working group, apart from the BMT CNS, attended the workshop for the whole day

and the BMT CNS, ward sister, health services researcher and modern matron attended for all or part

of the afternoon. The adolescent BMT consultant was unable to attend.

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The workshop involved using creative approaches to identify positive aspects about the unit and to

create the vision for the future. The positive aspects of the service were identified and used to create

strategic statements to influence the destiny and direction of the service (Ludema et al., 2003) and the

project work undertaken. This work enabled those attending the workshop to express their feelings and

perceptions about the culture within TCTU. It was apparent that there were positive aspects relating to

ways of working with young people and their families but also some challenges relating to ways of

working between staff within the unit.

The group developed draft strategic statements relating to ways of working both between staff and with

young people and families. The strategic statements were:

• We work together in partnership with patients and families to provide a supportive, fun and

expert service which is constantly evolving

• We respect diversity and partnership to promote education and growth within the team

• Using an integrated approach to deliver expert care. Investing in a universal culture which

supports education and development and allows ownership of time and place

• We will continue to grow and flourish through harmony and partnership to enable independent

thought through support and education towards our vision

• Providing clarity and structure we will build our strengths to develop into the future

Time constraints within the workshop prevented the team moving forward to the next phase of

Designing. It was decided that this would happen within the working group meetings following the

workshop.

Initial evaluation of the workshop was undertaken at the end of the day and involved a verbal

discussion among members. Generally feedback was positive at that time; however, the time after this

workshop developed into a crisis point as far as the project was concerned. This will be discussed in the

second section of the report.

In addition to developing a working group, gaining external support for the project and attending

workshops, a number of other methods and approaches were adopted to complete the aims of the

project. These included a patient questionnaire, creation of a DVD and information booklet and

exploration the use of modern media. These are outlined below.

Patient questionnaire

A questionnaire was developed by the working group to explore the views and experiences of young

people and their parents in relation to information received about BMT. The working group felt it was

important to include parents in the questionnaire to give them opportunity to comment, from their

perspective, about the information they had received prior to BMT. To increase reliability, the

questionnaire was based on a questionnaire that had been previously used in the adult BMT population

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asking patients about the quality and quantity of information received pre BMT (Bowling, 2002;

Armoogum et al, 2010) and consisted of 12 questions. The amended adolescent version of the

questionnaire was internally peer reviewed and the working group, stakeholders and the TCTU nurse

consultant were given the opportunity to comment on the face and content validity of the questionnaire

(Bowling, 2002). Any comments and suggestions were incorporated into the final draft of the

questionnaire (see appendix 2).

Local research and development approval was sought and obtained prior to approaching any

patients. The questionnaire was categorised as a service evaluation project as it was developed and

constructed to define or judge current care, measure the service without reference to a standard and

did not involve randomisation (NPSA, 2010).

A covering letter, copy of the questionnaire and a return envelope was sent to all adolescent patients

who had undergone BMT in the unit in last 4 years and were alive at the time of the study (n=20). The

list of patients was provided by the BMT CNS. The covering letter was addressed to the patient but

explained that they could pass the questionnaire onto their parent if they were not keen to participate

themselves. Participants returning completed questionnaires indicated if they were a patient or parent.

A follow up letter was sent four weeks later thanking those who had responded and reminding others

about the completing the questionnaire. Prior to sending the follow up letter the BMT CNS clarified

that each patient was still alive.

The following ethical considerations were actioned:

• Participants were informed that the questionnaire was anonymous and participation, or not,

would not impact on future care. Patients and parents were asked not to put their names on

the questionnaire

• The covering letter explained the results would be used to help inform future services, this

project and may be published in professional journals or presented at conferences but explicit

reassurances were given that participants would not be identified in any reports or

publications

• Completed questionnaires were stored in accordance with the Data Protection Act (ICO,

1998)

• Access to completed questionnaires was strictly controlled. Only members of the working

group viewed the completed questionnaires whilst collating the data. The completed

questionnaires were stored in a locked cupboard that only the project leader had access to

• The working group did not know which patients returned questionnaires thus the

questionnaires were anonymous

• Only the working group had access to the anonymised questionnaire data

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The data collected using the questionnaire was analysed using descriptive quantitative data analysis.

The results were used to demonstrate the need for age appropriate BMT information and to inform the

development of the information products.

Questionnaire findings

Seven completed questionnaires were returned, a response rate of 35%. Three (43%) respondents

were patients, three (43%) were parents and one (14%) did not indicate. 86% (n = 6) of respondents

felt the amount of information they received pre BMT was ‘about right’ but 50% (n = 3) of respondents

did not read the information book and one did not respond to that question. Young people thought the

information book contained too much information and should be condensed but parent comments

were positive. 71% (n = 5) of respondents thought verbal information received pre BMT was helpful

and all (100%, n = 7) felt they received the right amount of information about infections, readmission,

mouth care, personal hygiene, physical activity and how they would feel. 29% (n = 2) of respondents

wanted more information about risks of BMT, nutrition and emotional wellbeing. One respondent (n =

14%) wanted more information about graft versus host disease. Parent respondents felt information

was given openly, honestly and with compassion but would like to watch a DVD of past patients or

have an opportunity to talk to them.

In summary, the responses to the questionnaire demonstrated that some young people had not read

any or part of adult information book due to its length and complexity thus highlighting the importance

of producing a condensed adolescent version. Furthermore, there was a suggestion that young

people are open to receiving information from a variety of media as a respondent suggested, without

prompting, that watching a DVD or meeting patients and sharing experiences would be useful thus

confirming the potential benefit of a DVD.

These findings were supportive of the original aim of the project, to develop age appropriate

information using a variety of media and supported the working group focusing on:

• Creating an age appropriate information booklet

• Continuing the work to develop the preparatory DVD

• Exploring the possibilities for information giving using modern media

These activities will be discussed in greater depth below.

Development of the DVD

A fresh contact was made with a production company to edit the DVD. They reviewed the clips of film

that had been taken before the EBMT 2010 project and requested some new clips of patients, staff and

the unit to ensure adequate lighting and film quality. This was arranged for the beginning of February

2011.

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Once a suitable production company had been identified to complete the remaining filming and edit

the DVD the production of the DVD was extremely quick. The FoNS grant enabled this because the

production company could be paid to edit the film as the working group and clinical team had

originally intended. Without the FoNS grant this may not have been possible as compromises could

have needed to be made if charities with their own agenda for the DVD funded the work. The activity

co-ordinator and project leader sought permission for a film crew to be present on the unit. Further

filming of the BMT Consultant and BMT CNS and ward environment were obtained.

In addition to the editing costs, the FoNS grant enabled the production of 40 copies of the DVD which

will be given to future BMT patients and their families.

Evaluation of the DVD

Staff and young people reviewed and evaluated the DVD in March 2011. Staff where shown the DVD

in the senior staff meeting and the feedback was unanimously positive. It generated lots of positive

discussions and ideas about the use of DVD for other clinical information sharing situations. The DVD

was also evaluated by young people. Five young people who had undergone a BMT on TCTU were

approached to watch and evaluate the DVD. The patients were selected by the adolescent BMT

consultant as they were well and their BMT was long enough ago for them to be able to have

experienced the entire BMT journey including follow up care. Either the activity co-ordinator or the

BMT CNS joined the young patients during their outpatient clinic visit and they watched the DVD on

an iPad. Afterwards, young people were asked to complete a questionnaire about their views of the

DVD (appendix 3).

Findings from DVD evaluation

Most patients reported that they would have found watching a DVD like this helpful prior to BMT,

although one patient felt they would not have personally benefited but thought others might. The

sections that were evaluated most highly included information from the young people ‘kids showing

you what happened and the effects’. They reported the doctors to be ‘very helpful, told a lot of

information, explained well, when (doctor) was talking to (patient) I could relate to it, it was like they

were talking to me’ and nurses to be ‘helpful, told us who they were and what they do”. No sections

were viewed as less useful. The working group wanted to check that patients did not find the DVD

distressing or upsetting so asked if they had wanted to turn it off at any point due to such emotions

and most reported that they didn’t ‘no, it conveyed the facts in a gentle (way)’ but one said they did

find it upsetting but that it made them realise they weren’t ‘the only one going through (a) hard life’. No

patient would remove any of the content but one suggested adding more radiotherapy shots or talking

more about cord transplant.

The working group were reassured by the DVD feedback as it was felt to provide a positive reflection.

Patient suggestions were considered but unfortunately we were not able to arrange any more filming

of radiotherapy due to time restrictions.

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Development of written information for young people: creating an age appropriate information

booklet

The working group decided to condense the existing 38 page information book into an 18 page

supplementary booklet using the responses to the questionnaire to help them. The book was divided

between the three ward based nurses and then they each condensed their sections before creating a

coherent draft. A deadline was set for the beginning of January 2011 to complete the first draft,

however, due to personal and work commitments this could not be achieved so was postponed to the

end of February 2011. When the first draft was sent to members of the working group, it was clear that

much work was still needed to be done to make the book into a useful, coherent document. This led to

a second crisis of the project which is also discussed in section two. The second draft has now been

completed and is much improved. It is currently being reviewed by the rest of the working group and

the key stakeholders. Young people will then be given the opportunity to evaluate the book. Finally, it

will be ratified for use by the JACIE governance committee. It is anticipated that the printing costs for

the initial run of 100 copies will be funded by the FoNS grant. It is hoped that subsequent printing costs

will be met by the TCTU charitable fund.

Evaluation of written information for young people

When the final draft has been completed it is anticipated that the book will be evaluated by young

people who has undergone BMT on TCTU using a similar process to the DVD evaluation.

Exploring the use of modern media

During the ‘dreaming’ and articulating the vision’ for the future session of the Appreciative Inquiry

workshop, one of the working group suggested the idea of internal instant messaging (MSN) for patient

to patient contact. This idea developed as the project progressed and resulted in becoming one of the

objectives of the project. It was hoped that a room to room instant messaging service could be

developed for patients whilst in hospital, similar to a chat using Facebook. A major cancer charity was

approached to assist with funding of computer software. Although the charity viewed the idea positively,

they wanted to be able to connect all teenage cancer patients across the country to the instant

messaging. The working group had reservations about this, namely that connecting patients from

different units might cause tensions and confusion if patient experiences and facilities were different.

Thus it was decided to seek to facilitate the page via the local hospital internet page and the trust IT

department was contacted. From a technological perspective, the only way it could be achieved and the

trust maintain editorial control would be via the trust intranet page. However, as the intranet is a staff

only facility and patients do not have access to it, the trust IT department were unable to help. Another

option is currently being explored involving the ward having its own web page with an internal chatting

programme similar to standard Facebook.

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SECTION 2: ROLE OF COMMUNICATION AND FACILIATATION ON THE DEVELOPMENT OF THE

PROJECT

This section of the report describes the process of practice development on the progress of the project.

It seeks to highlight some of the feelings and reflections of the working group during the year with the

FoNS project. Over the 12 month period the project has included highs and lows. Highs include:

• Sustained periods of working as a team to complete the questionnaire

The construction and administration of the questionnaire was very well structured and organised.

Roles were divided and each member of the working group knew what they needed to do and the

timescale; as a result, the group worked well together to achieve this objective. This resulted in

the questionnaire being written, administered and the data analysed within two months. This was

good for the overall project because it was the first time that tangible progress had been made.

Individual members of the working group, including the project leader, could see progress being

made and this appeared to help the project to gain momentum again

• Acceptance of abstract at EBMT 2011

An abstract was submitted, accepted and shortlisted for a prize at EBMT 2011. This was positive

for the working group as it provided both external and internal validation of the value of the

project and our progress so far. This, coupled with the positive reception at EBMT 2010 and the

successful application to FoNS, demonstrated external validation that a DVD and written booklet

for adolescent BMT patients was an idea worth investing in

• Additional filming and editing of the DVD

Editing of the DVD proved to be problematic and it seemed that progress with the DVD stalled for

a few months. Once an external, expert editor had been identified, funded by the FoNS grant, the

editing process became swift and less complicated. The external editor requested some

additional filming. This provided an opportunity for the group to insure all desired sections of the

DVD could be included

• Evaluations of DVD

The DVD was evaluated positively by young people. This was reassuring to the working group as

it demonstrated that the DVD was appealing to its target group. The DVD was also shown at a

CYPCS senior staff meeting. All feedback received was extremely positive and it sparked other

consultants exploring ways they could use a DVD for young people in their practice

Despite the highs and achievements of the working group, there have also been low points to the

project which have resulted in two crisis points. These will be discussed in more detail below.

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Impact of Appreciative Inquiry workshop

Despite the enthusiasm at the Appreciative Inquiry workshop, the period after the workshop appeared

to be a crisis point in terms of collaborative support from the working group for the project. There was

no follow up communication between staff for six weeks and there were no attendees or apologies at

the next planned meeting, therefore it seemed that there had been total disengagement from the

project. At this point, the project leader went on maternity leave. The job share partner of the

original project leader recognised that she needed to become the project leader else the project

risked failure. She felt there was a need to adopt a more directive style of facilitation (Hersey and

Blanchard, 1996) to ensure the project did not disintegrate. Formal meeting dates were arranged and

agendas set. The working group were emailed and asked if they still wanted to participate with the

project. From this point, attendance at the meetings and productivity seemed to improve. To learn

more about the working groups feeling towards the project at this point, the Appreciative Inquiry

workshop and the change in facilitation style, a few months later all members of the working groups

were asked to reflect on:

• Their expectations of the workshop i.e. what their expectations had been at the beginning of

the workshop and what they felt after the workshop

• How they felt about the more directive approach to facilitation that had been used after the

workshop

Structured and intentional reflection on the impact of actions, and inactions, within the context of the

working situation and culture allows for work based learning concerning self knowledge and

awareness that is essential to practice development (Manley et al., 2008). All members of the working

group, except for one, provided an approximately 200 word reflection. The project facilitator read the

reflections and identified key themes and checked them back with the working group to ensure the

correct interpretations had been made. The key themes are outlined below and full reflections are

included in the appendix 4.

1. Expectations of the workshop:

• Team building – ‘opportunity to get whole team together,’ ‘gain insight into project and team

dynamics’

• Confusion over purpose of day - ‘no expectations,’ ‘unclear about the focus,’ ‘unsure what we

were going to do’

• Hopeful of generating action plan for project – ‘defined timeline,’ ‘allocated responsibilities’

2. Feelings immediately afterwards:

• Ideas generated – ‘team members had own ideas validated,’ ‘one of 3 big topics of project

(came out of workshop) which I’m pleased about’

• Positivity – ‘encouraged me to make this a worthwhile project for both ward and the patients’

• Loss of clarity over aims of project – ‘felt very unclear about aims of project’

15

• Overwhelming workload - ‘wasn’t able to see where we would start (or end) project,’ ‘seemed

like a lot to do,’ ‘fear of project’s size,’ ‘overwhelmed by size of project’

3. Feelings in weeks afterwards:

• Disconnect from project - ‘ buried my head in the sand hoping the ugly beast would

disappear,’ ‘overwhelmed (therefore) avoiding thinking about it,’ ‘lost momentum’

4. Feelings about more directive approach to facilitation:

• Relief - ‘great thingM someone took charge,’ ‘brilliant and without that the project wouldn’t be

where it is now,’ ‘single greatest moment of the project so far!’

• Re-engerised – ‘re engaged us in project,’ ‘structure was laid out’

The findings from the reflections demonstrate that the change in facilitation style was necessary at the

time to re-motivate and to create momentum for the project. After a few weeks, the new project leader

hoped to take a more supportive style of facilitation. This appeared to work for a number of months

and highlights the importance of facilitators being aware, flexible and adaptable to the needs of the

group at certain points (Manley et al., 2008). Competing agendas for individuals within the working

group meant that delays occurred with the booklet and it was clear there had been a breakdown in

communication and expectations between the nurses involved with the book and the rest of the

working group. Details are provided below

Meeting to discuss first draft of booklet

The first draft of the book was emailed to the working group in February 2011. Three members of the

working group offered their editing suggestions to the draft. A meeting was arranged to discuss these

alterations. On the date of the meeting the clinical environment was very demanding and the working

group where all distracted, however, we choose to continue with the meeting. The reality of

undertaking practice development on a busy inpatient ward means that competing demands and

stressors can make meetings hard to accommodate and group time more tense.

The meeting was not a success. The project leader explained her disappointment with the draft and

started to explain her editing. This felt negative but the project leader had anticipated spending time

helping the nurses to formulate a plan of how to take things forward positively. Unfortunately, the

meeting was called to an abrupt end due to clinical activities and demands on the ward. Therefore,

there was no time to conclude the meeting positively thus the meeting ended with bad feeling

between the working group.

It was clear at this point that communication within the working group had broken down. The project

leader sought advice from the modern matron about how to take things forward so that relationships,

and thus the project, did not break down irretrievably. The modern matron suggested an AAR

meeting, lead by an external facilitator, to discuss the situation.

16

The three ward nurses, the activity co-ordinator, the original project leader and the replacement

project leader were invited to attend. Everybody accepted the invitation but one ward nurse was

unable to attend on the day and sent apologies via one of the nurses. The AAR provided an

opportunity for everyone to view their opinions and listen to others. The working group agreed that we

needed to move on from ‘bickering’ and move the focus of energy onto completion of the project. To

do this, everyone had to ‘let go’ of their personal grievances with each other and work together in a

professional and mature manner. It appeared that there was renewed energy for the aim of the

project, namely the product of high quality information products for young people undergoing BMT by

the end of the AAR discussion.

Role of communication and facilitation

Throughout the project it can be seen that two key aspects namely communication and the role of

facilitation, have impacted significantly on the project.

Communication

There were some initial setbacks with respect to communication with the working group and the

stakeholders. On discussion with the stakeholders, it became clear that the time commitments required

by staff for the DVD project presented at EBMT 2010 had not been thoroughly explained. This resulted

in some initial resistance concerning the FoNS project as some felt they had again not been properly

consulted or the time commitments explained. Once those earlier issues had been identified,

recognised and understood, the working group members were able to work more closely with the

stakeholders and it was agreed to release staff for the FoNS project. This highlights the importance of

effective and inclusive communication with key stakeholders (Manley and Webster, 2006).

For the reminder of the project, both project leaders placed an emphasis on ensuring clear lines of

communication between the stakeholders and themselves to ensure the ward manager felt informed

of progress. This proved successful as communication improved significantly throughout the project

and resulted in making a positive impact on working relationships. However, whilst attention was paid

to communicating effectively with the ward manager, less focus was given to communicating within

the working group.

Communication within the working group proved challenging to facilitate. It was decided to

communicate via email to be inclusive, quick and to navigate around the issue of shift working.

However, in practice, communicating via email proved difficult; emails were seemingly ignored or not

responded to when anticipated. Because the working group rarely had face to face contact with each

other, it felt extremely frustrating for all. With hindsight, clearer ground rules about respecting each

other and the contribution expected of each member of the group should have been agreed. Poor

communication and unclear expectations of each other directly contributed to the second crisis in the

project.

17

Role of facilitation

Manley et al., (2008) acknowledge the role that skilled facilitation plays in practice development, in

terms of evidence use, learning in and from practice and teams working effectively together towards the

achievement of a person-centred workplace cultures.

The project was facilitated by two project leaders. The initial project leader led the production of the

DVD clips, the presentation to EBMT 2010 and subsequently submitted a proposal to the FoNS

Patients First Programme. A coaching and supporting style of facilitation was used by the project leader

at this stage (Hersey and Blanchard, 1996) to enable the project to be collaborative and develop in a

ground up manner and thus be led by the ward staff. Initially this appeared to work well and enabled an

open, creative AI workshop. Initial feedback from the workshop was positive and everybody appeared

enthused, if a little overwhelmed, by the project.

Shortly after the Appreciative Inquiry workshop, this project leader left to take maternity leave. Whilst

the replacement project leader had a working relationship with the members of the working group, this

was in her role within the workplace rather than having any specific role or responsibility within the

project. The second project leader did not seek to become the project leader, but sensed after the crisis

meeting, whereby no-one attended, that somebody needed to lead the project otherwise it was going to

disintegrate. As the second project leader was the job share partner of the first project leader, and no

other member of the working group had volunteered to lead or guide the project in the absence of first

project leader, she felt a responsibility to lead the project.

After the first crisis meeting, it was decided to formalise the allocated time and set monthly meetings for

the remainder of the project. Each meeting would be facilitated by a chair and it was initially hoped the

chair person would rotate among the working group but in reality it was always the project leader. The

chair was responsible for setting an agenda and sending out minutes of meetings to the working group

and stakeholders. This enabled both the working group and the stakeholders to ensure that the time

allocated was used productively and that there was regular, open and transparent communication with

the stakeholders. Meetings increased in frequency at certain points in the project and the ward

manager agreed to release ward based staff from duty during the handover period between late and

early shifts as long as those nurses involved in the working group ensured that they had arranged to be

released with the nurse co-ordinating the shift that day. This was facilitated by the ward nurses working

together and managing their time well, using the cross over period between late and early shifts for

meetings.

This project provides an interesting example of a working group that experienced both ends of the

facilitation spectrum, from coaching and collaboration, to a more formal, directive approach. Both

types had their periods of success but both resulted in crisis at some point. This raises a question

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about whether any form of facilitation would work with certain individuals within certain cultures. The

cultural impact of this project is discussed below.

The effect of project on the development of workplace culture

With respect to the second aim of the project, around the development of the workplace culture to

enable ward based nursing staff to feel empowered to change practice in their clinical environment,

the outcomes are less structured and tangible. However, it appears that the nursing culture has

changed during the last 12 months to embrace education and practice development. Evidence to

support this includes:

• The completion of a number of projects by TCTU ward and daycare nurses in last 12 months

including:

o A survey reviewing education needs of staff nurses to confidently care for teenage

BMT patients

o Focus groups with ward nurses, led by ward nurses and a CPF on barriers to nurses

talking to teenage patients about sexual health

o A survey looking at nutritional needs of teenage patients in daycare

• Commitment by both staff and management to external training courses:

o 47% of CYPSC nurses attending external university accredited courses this academic

year

• Commitment to releasing ward based staff to attend national and European conferences:

o All grades of TCTU nurses given opportunity to attend conferences focusing on

teenage care, oncology or haematology

The experience of the project leaders suggests that culture change within the nursing workforce has

been partially successful. On a macro level, there appears to be a change with respect to senior staff

being more appreciative of the importance of education and practice development and this is

evidenced by the commitment to staff nurses being given learning opportunities such as external

courses and attendance at conferences. On a micro level, cultural change could be initially concluded

to have been less successful.

.

This project to develop age appropriate information for young people and other practice development

projects that have happened in the last 12 months on the unit have been facilitated and led by CPFs.

For sustained practice development to be incorporated within a culture it must not rely on individuals

but should be embedded within the team. It is recognised that the use of practice development

approaches does not necessarily result in rapid cultural change (Henderson and McKillop, 2008) but

can put systems and processes in place that may make cultural change possible.

Practice development processes focus on the use of facilitation in enabling healthcare teams to develop

their knowledge and skills and to transform the culture and context of care (Garbett and McCormack,

2002). If the work of Manley et al., (2008) in identifying effective workplace cultures is considered

19

against achievements of this project in terms of changes to the culture of the BMT, then it is possible to

identify certain enabling factors and essential attributes that may support ongoing development of the

culture and the potential consequences from that.

These can be identified as:

• Skilled and intentional facilitation

• A more enabling approach to leadership and decision making. The leadership on the unit

appears to be moving from a hierarchical towards a more co-operative style (Heron, 1992)

Engagement between the practice development team and management has resulted in a shared

attitude to positive change. There is evidence of collaborative approaches to teamwork and the

Appreciative Inquiry workshop may have helped to generate a shared vision for the service and the use

of innovative approaches to workplace effectiveness.

Involvement of patients in an ongoing way in the development of information is a consequence that also

identifies the development of a more effective workplace culture (Manley et al., 2008)

Whilst the project leaders voiced concern in relation to the need for ongoing facilitation, the work of

Manley et al., (2008) and Rycroft-Malone (cited by Bucknall, Kent and Manley, 2008) and by Rycroft–

Malone (2002) indicates that skilled facilitation is an integral and ongoing part of development of an

effective workplace culture and implementation of evidence based research and that an essential

aspect of the facilitation is that the style used reflects the progress and development of the workplace

culture to ultimately enable individual and team effectiveness (Manley, McCormack and Wilson, 2008).

Conclusion

In considering achievement of the aims and objectives of the project, it appears that the use of

practice development principles and Appreciative Inquiry approaches enabled the establishment of a

collaborative working group that through the use of different facilitation styles may have fostered

changes that are starting to make changes in the ward culture.

The involvement of young people and their families through the development and use of a

questionnaire led to their feedback directly impacting on changes made to information provided to

young people having a BMT.

Recommendations

Recommendations for future practice development include:

• Exploration of other patient information scenarios that would benefit from a DVD

• Ensure that all member of working group aware of commitment required to be part of a project

before they agreed

20

• Completion of the Context Assessment Index (McCormack et al., 2006) to enable more clarity

around cultural change as an outcome of the project

Acknowledgements:

We would like to thank the patients and families who took part in the project. It would not have been

able to happen without you and we are very grateful, thank you.

Thank you to the nursing and medical team at the Children’s and Young People’s Cancer Service at

University College London for their support and encouragement with this project.

To FoNS and the Burdett Trust for Nursing for supporting the development, implementation and

dissemination of this project as part of the Patients First Programme

Appendices

Appendix 1 – Appreciative Inquiry workshop programme

Appendix 2 – Patient questionnaire to gain views and experience about information received

Appendix 3 – patient questionnaire to evaluate DVD

References

Armoogum, J., Cathcart, E., Cazenove, E., Knott, C., Mathambo, N., Tompsitt, L., Vevers, J. (2011)

Bridging the gap: giving information to young people undergoing bone marrow transplants using

modern media. EBMT Nurses Group, Abstract 179.

Department of Health (2007) The Cancer Reform Strategy. London: HMSO.

Department of Health (2011) Improving outcomes: A strategy for cancer. London: HMSO.

Hersey, P. and Blanchard, K.H. (1996) Management of Organisational Behaviour: Utilising Human

Resources (7th Edition). London: Prentice Hall.

Joint Accreditation Committee (JACIE) (2011) Joint Accreditation Committee of the ISCT and the

EBMT. www.jacie.org (Last accessed 03.02.11).

Jansen, J., van Weert, J., de Groot, J., van Dulmen, S., Heeren, T., Bensing, J. (2010) Emotional and

informational patient cues: The impact of nurses’ responses on recall. Patient Education and

Counselling. Vol. 79. No. 2. pp 218-224.

Koutsopoulou, S., Papathanassoglou, E., Katapodi, M., Patiraki, E. (2010) A critical review of the

evidence for nurses as information providers to cancer patients. Journal of Clinical Nursing. Vol. 19.

No. 5-6. pp 749-765.

Ludema, J., Whitney, D., Mohr, D., Griffin, T. (2003) The Appreciative Inquiry Summit. California:

Berrett-Koehler Publishers Inc.

21

Manley, K., McCormack, B., Wilson, V. (2008) Introduction. Chapter 1 in Manley, K., McCormack, B.,

Wilson, V. (eds) International Practice Development in Nursing and Healthcare. London: Blackwell

Publishing Ltd.

Manley, K., Webster, J. (2006) Can we keep quality alive? Nursing Standard. Vol. 21. No. 3. pp 12-

15.

McCormack, B., McCarthy, G., Wright, J., Slater, P. and Coffey, A. (2009) Development and testing of the Context Assessment Index (CAI). World Views on Evidence Based Nursing. Vol. 6. No. 1. pp 27-25. Morgan, S., Davies, S., Palmer, S., Plaster, M. (2008) Sex, drugs, and rock ‘n’ roll: caring for

adolescents and young adults with cancer. Journal of Clinical Oncology. Vol. 28. No. 32. pp 2825-

4830.

Morgan, S. (2009) What colour is my cancer? The experience of teenagers and young adults who are

shown their cancer through a microscope. European Journal of Oncology Nursing. Vol. 13. No. 3. pp

179-186.

Nagel, K., Wizowski, L., Duckworth, J., Cassano, J., Hahn, S. A, Neal, M. (2008) Using plain

language skills to create an educational brochure about sperm banking for adolescent and young

adult males with cancer. Journal of Pediatric Oncology Nursing. Vol. 25. No. 4. pp 220-225.

Stavros, J., Kohnke Meda. A. (2003) A Cultivating a Positive Culture through Appreciative Inquiry.

http://exc-el.wikispaces.com/Related+Literature (Last accessed 14/04/11).

Zebrack, B. (2008) Information and service needs for young adults cancer survivors. Supportive Care

in Cancer. Vol. 17. No. 4. pp 349-357.

Appendix 1

22

Practice Development Workshop

UCLH 27th May 2010

Facilitators: Theresa Shaw & Diana Calcraft

This day will facilitate the young persons’ unit team to work together to appreciate what is good about their

work, identify a vision for the future and design a collective action plan for practice development that will

ultimately deliver and enhance person-centred practice within the Patients First Programme.

An appreciative inquiry approach will be used.

When? What? Why?

09.00 Introductions: Facilitators, FoNS Patient First

Programme, the project team leaders work to

date.

Sets the scene and demonstrates

commitment and a vision for the day.

09.10 Overview of the day: Explain the plans for

the day and identify ground rules.

Participants will know what to expect but

can also contribute to creating a safe

environment.

09.20 Getting ready to work: Invite each person to

introduce themselves by name and says

something that is going well in their work and

why they care about the future of the unit.

Creates positive energy, shared motivation

encourages people to share values.

9.40 Appreciating what is good: Provide a

visualisation exercise to energise and focus.

Split into three small groups and invite

participants to describe to each other

examples or stories that show the unit at its

best and when they felt proud to be part of it.

Clear minds to focus on activity. Drawing on

personal experience that is shared is a good

base to start building for the future.

10.45 Coffee. Time to relax and reflect.

11.00 Dreaming the vision: Building on present

successes, invite participants to consider that

if the unit was fulfilling all its promise, what

would be happening? How would you feel?

How would the young people feel? What

would you and others be celebrating?

Generate a shared "picture" and a memorable

phrases to describe the vision.

Identify the themes that emerge.

This will help the team to work together to

create an attractive and shared dream. The

phrases and pictures will help anchor the

vision and the experience of creating it in

people's minds.

23

12.00 Articulating the vision: Use the vision above

to participants are invited to write strategic

statements that describe what will be

happening, around the key themes, in the

present tense.

This will help focus energy and develop

commitment to work together creatively to

achieve the vision.

12.45 Lunch. Refreshment and relaxation.

13.30 Turning the dream/vision into reality: Invite

participants to list/thought shower, what needs

to be done, to ensure that the dream/vision

becomes a reality. Sort these list/items by

priority, and by who is best placed/most

interested in what.

This will ensure energetic consideration of

the most important issues such as roles,

responsibilities, enablers and barriers.

13.45 Design an action plan: Work in small groups

think about the projects, above, and decide a

way forward. How will other stakeholders be

involved? How will patients be engaged?

This will focus energy on the issues

important to the team.

14.45 Agreeing activities: Invite participants to

agree how the action plan will be taken

forward, when and by who.

Will give participants a sense of ‘doing’ and

encourage individuals to take part in

aspects that interest them. They may also

appreciate and recognise each other's

strengths.

15.00 Break. Time to relax and reflect.

15.15 Checking out: Invite participants to consider

their claims, concerns, issues, relating to the

action plan.

Celebrating plans, checking our any areas

needing clarification. This will increase

people's involvement and commitment.

15.45 What next: beginning the workM Having a plan for starting work will ensure

progression.

15.15 Closing circle: Invite everyone to say one

thing they have learned and one thing they

will do as a result.

Making a public commitment may help

participants to act beyond the workshop.

The question about learning will help show

the immediate benefit of the workshop.

16.15 Close. We will all be tired and thoughtful!

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What is Appreciative Inquiry

Appreciative inquiry is an alternative to problem solving approaches to practice change. Appreciative

inquiry focuses on a desired future or outcome by building on the strengths/passions of the past and

present. Problem-solving attempts to analyze deficits, identify root causes, then fix problems or

correct errors; because it searches for problems, it finds them. Appreciative inquiry does not ignore

problems, rather it recognises them as a desire for something else, then works to identify & enhance

the "something else."

The phases of Appreciative Inquiry are:

Discovering - is what gives life to an organisation and acknowledging the best of what is now. The

discovery phase involves a data collection and narrative exploration. It begins the process of

revealing the positive and successful experiences of the individual and the collective. Through

carefully developed interview questions based on the affirmative topic, the focus is to explore and

enliven the stories that are shared through interviewing the defined group within the organisation.

Dreaming - of what might be to create a clear results-oriented vision for the future. Participating

groups discuss their individual visions of the ideal organisation and describe what would be

happening some years into the future. From this discussion, the group’s collective vision is developed.

The strategic focus becomes articulated as a vision of a better organisational world and a compelling

statement of strategic intent.

Designing - what should be by collaboratively co-creating action plans. Provocative propositions are

developed as bold statements of the organisation of the future as if it has already happened.

Implementation plans are then developed by small working parties. To ensure comprehensiveness,

the design phase can focus on specifics like leadership, strategy, culture, business practices,

capabilities, professional development and systems.

Delivering (or destiny) - the results through implementation and review. At an organisational level, if

the AI process of positive transformation is supported through empowering employees to connect, co-

operate and co-create, the results will continue to surface in new, innovate, and bold ways.

Source: Cooperrider, D.L. and Whitney, D. (2002) Appreciative Inquiry: The Handbook. Euclid Ohio:

Lakeshore Publishers.

Further reading:

Carter, B. (2006) “One expertise among many” working appreciatively to make miracles instead of

finding problems: using Appreciative Inquiry as a way of reframing research. Journal of Research in

Nursing. Vol. 11. No. 1. pp48-63.

Carter, B., Bradley, S., Richardson, R., Sanders, R.,& Sutton, C.J. (2006) Appreciating what works:

discovering and dreaming alongside people developing resilient services for young people requiring

mental health services. Current Issues in Mental Health Nursing. Vol. 27. No. 5. pp575-594.

Stavros,J and Kohnke Meda A. (2003) Cultivating a positive culture through appreciative

inquiry.Lawrence technological University and Benedictine University.

25

Appendix 2

Patient questionnaire to review the quality and quantity of information received pre BMT We are reviewing the quantity and quality of information that we give to teenage bone marrow transplant patients. We would be very grateful if you would be able to complete this questionnaire for our audit. This is to help us improve the way we provide information to patients in the future. Please be assured that the information that you give will be treated in the strictest confidence. The questionnaire asks questions about information you were given before your transplant. 1. Overall, do you feel that the amount of information you were given before your transplant was?

Too little About right Too much

What do you think could have been done better? MMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM 2. Leading up to your transplant, did you feel you had a named transplant co-ordinator who you could talk to some more about your transplant?

None of the time Some of the time All of the time

Do you have any comments about this? MMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM 3. How helpful did you find the information given to you in the booklet called ‘Patients guide to a donor bone marrow/stem cell transplant’ that was sent to you before the BMT?

Not at all A little A lot Very much

What do you think would make the booklet more helpful? MMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM 4. How helpful did you find the information given to you at the transplant clinic before you came in for the transplant?

Not at all A little A lot Very much

What do you think would have made your appointments more helpful? MMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM 5. Do you feel the length of time you had to talk to the doctor and the transplant co-ordinator in the transplant clinic wasM?

Too little About right Too much

Would you have preferred to be able to talk to them at times outside of your appointments? MMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM

26

6. Do you feel the amount of information given to you about the different treatment options available was?

Too little About right Too much

How could this have been made easier for you? MMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM 7. Do you feel the amount of information given to you about the risks of the bone marrow transplant was?

Too little About right Too much

What would you like to have been left out or included? MMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM 8. Specifically, was the amount of information given to you about the graft versus host disease?

Too little About right Too much

What would you like to have been left out or included? MMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM 9. Was the amount of information given to you about the risk of infections?

Too little About right Too much

What would you like to have been left out or included? MMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM 10. Was the amount of information given to you about the risk of being readmitted to hospital after your transplant?

Too little About right Too much

What would you like to have been left out or included? MMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM 11. Was the amount of information given to you about how the transplant would make you feel?

Too little About right Too much

What would you like to have been left out or included? MMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM 12. How much were you told about things you can do to help yourself keep well?

Too little About right Too much

What would you like to have been left out or included? MMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM

27

13. Did you feel the amount of information you were given about the practicalities of the transplant, such as time in hospital, frequency of clinic visits after the transplant, was?

Too little About right Too much

What would you like to have been left out or included? MMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM Is there anything that you weren’t told about before your transplant that you would have liked to have known? Please give details MMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM MMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM Is there anything you would suggest we could do differently or that you would have found helpful? MMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM

THANK YOU, YOUR HELP IS GREATLY APPREICATED

28

Appendix 3

Patient questionnaire to evaluate the Bone Marrow transplant DVD Thank you for taking the time to watch the DVD and complete this questionnaire. The DVD is for future patients and any feedback you can give us would be gratefully received. Would you have found watching a DVD like this helpful before you had your BMT?

Extremely helpful Yes Me personally, no, but I think other people would have Yes

What bits did you think were useful (if any)? The mixture of doctors talking about what is to come and past patients experience All of the film All of them All the information from doctors and young people The doctors talking and kids showing you what happened and the affects

What bits did you find less useful? None None None of them Nothing None, I think it was really useful

Did you want to turn it off at any point (because you felt upset, distressed ect)? No- it conveyed the facts in a gentle (way) No No No Yes but I didn’t. It made me see and think I went (?wasn’t) the only one going through hard life

What did you think of what the doctors said? It was very well explained – very helpful Very helpful & useful It was helpful Very helpful, told a lot of information, explained well, when Vicky was talking to Emily I could relate to it, was like they were talking to me The doctors information helps loads

What do you think of what the nurse said? It was very well explained – very helpful Very helpful & useful It was helpful Helpful, told us who they were and what they do Yep, most of the nurses are helpful up there

29

How did you feel about hearing from young people? It was helpful because it gives an insight into how it may affect people Felt good to listen to their views It would be helpful Very good. Let us know how they feel and different things which happened to them. Good when Emily as showing us her line. It made me think that people out there are going through what I am going through

Are there any bits you would change? No – it was informative an friendly No No Show more of the TBI, how they would be moved into different ways, how long it would take, what would happen, talk to young people about the TBI Nope (smiley face!)

Would you add anything? No No No And talk about cord transplant – there is another way not just brothers and sisters Nope, only I here (sic) if any one need (very hard to read next word – either a cord, school or alcohol!)

Thanks again, you views are really important to us.

30

Appendix 4

Reflections of working group members

Caroline

The FONS workshop held at UCLH on 27th May 2010 has been identified at as a critical point by the

working group. Here are my personal reflections about this day.

Expectations

Having attended half of the two day external workshop with FONS in March with Shell, I was

expecting similar activities and discussion during our UCLH workshop. However, I expected the

discussion would be focussed more around our unit and project. I hoped the workshop would

generate a robust plan of action for our project with a defined timeline and named responsibilities. I

had only been in post 3 months and was new to the team. Therefore, I felt unclear about the focus of

the project and about team dynamics. I expected to gain more insight to both of these things from the

workshop.

Feelings immediately afterwards

Immediately after the workshop I felt that I knew the individuals in the team a little better which was

very positive and I felt we had made some progress to identifying a shared vision for the unit.

However, I still felt confused about the project. The workshop had felt like it was more of a team

building exercise (in which it was successful) but I still felt very unclear about the aims of the project

and how we would achieve it I did not know what I was supposed to do next, or what I could expect

other group members to do next. I felt a sense of responsibility as a CPF that the project should

progress, however, I did not know how this would happen.

Feelings about the workshop now

I feel the workshop was the first step towards the key stakeholders, particularly the ward sister feeling

involved in the project. The fact that so many of the wider CYPCS team attended the day

demonstrated a commitment to working together.

Many creative ideas came out of the workshop that have since come to fruition. The workshop was a

useful tool for creative thought. However, strong leadership is what focussed the project. Now, the

project is moving forward there is much more of a sense of shared responsibility because individuals

understand their own role in the project.

Eddie – reflection on the use of an instant messaging service

The idea for an internal instant messaging service (MSN) came from an afternoon of brainstorming at

the FoNS workshop that we attended in May 2010. It was then taken forward to the next FoNS

meeting in July and August.

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It was thought that many of the patients on the ward were unable to come out of their rooms and meet

and speak to other patients who were going through the same ordeal as they were. It has been

recognised that teenagers communicate through the medium of technology; sometimes it is easier to

‘chat’ to others without having to see them face to face. Many young people communicate with their

friends at school through MSN and facebook chat. We felt that if we could create the same idea on

the ward then we could enhance our young peoples’ experience in hospital and help aid their

recovery through patient to patient experience.

The Teenage Cancer Trust (TCT) was contacted as it was felt that they might be able to assist in

funding, and computer software. TCT were keen to have other TCT units involved in the project so

the young people could chat to other patients in different hospitals. This was not an idea that we felt

happy with; different TCT units have access to varying charitable funds and it was felt that this might

cause discontent and tensions between the patients and parents in the units. Also, even though the

majority of the protocols used across the country are similar, may of the nursing and medical

practices are different.

At the meeting in August we discussed how we wanted the project to be piloted at UCH only, TCT

were contacted and thanked for their advice and advised on our plan for a pilot study. The technical

assistant at the UCH school was contacted; however, he said that we would need a dedicated server

to run the service; this would be a costly procedure. The IT managers from UCH were also contacted

as it was thought that it might be possible to run the project via the internal intranet. Unfortunately this

was not possible as the patients do not have access to the intranet, and by allowing them access we

could breach confidentiality.

We also discussed the limitations of the project; we would be unable to monitor what the young

people were saying to each other. It was at this time that I had a conversation with the TCT Nurse

Consultant at UCH who informed me that she was in a working party that was trying to set up a

TCT/T12 North Facebook for the young people and adults. The idea is for it to be exclusive to UCH; it

would be used as a forum for communication for in and out patients. UCLH related information such

as social activities and user groups would also be disseminated throughout the website.

The current plant is for the T12 North facebook to have an internal chatting programme similar to that

used on the standard Facebook. I feel that this will be a great addition to the ward, I have spoken to

various patients on the ward, they feel that would use an internal communication forum and would be

helpful to them throughout their stay.

Reflection post workshop-expectations, feelings after, feelings now

I had no expectations of the UCH FoNS workshop as I was unsure of what we were going to be doing

during the day. Throughout the day I was unsure as to how it was going to contribute to our project,

in particular the activities in the morning. However, as the day progressed I found that I was able to

associate myself with the activities that we were undertaking. We created strategic statements for the

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ward and it was only when these were broken down into working statements that I began to ‘connect’

with the objectives of the day.

After the workshop I felt empowered to put into action the points that we had discussed in the

strategic statements. There was positivity towards the project, and encouraged me to make this a

worthwhile project, for both the ward and the patients. It was however, daunting to receive e mails

after the workshop regarding what was expected of us and what we needed to achieve in this project.

Seeing the timeline and action plan for FoNS was necessary but un-nerving at the same time. The

project now seemed to be a lot bigger than we had originally thought post EBMT.

I still feel positive towards the project; however, I feel that we do need to continually encourage and

support each other to do the work as the project once it is completed will be a tremendous

achievement. We all have other commitments on the ward and although sometimes it can feel that

we are always working, this is a project that we committed to in early 2010 and we volunteered to be

part of it. I sometimes feel that I need to be reminded of this especially when there is extra work to be

done. There have been many encouraging aspects of doing this project and I hope we can take this

forward and use it in practice on the ward.

Reflection on ‘crisis point’

I feel that after the workshop we did lose momentum, especially after such a positive day towards the

project. I think the enthusiasm towards the project was still present amongst the members of the

FoNS team but we were perhaps over whelmed by the size of the project and what we needed to

achieve. The meeting in July I was unable to attend due to annual leave, however, I do feel that it re-

engaged us into the project as a structure was laid out to follow for the rest of the year and monthly

meetings to attend. In hindsight it was perhaps was not good planning to have a meeting when so

many people could not attend. It showed me that i needed to be more proactive with the project and

perhaps prioritise it.

June Vevers - The Highs and the Lows of Movie Making: My reflections on the making of the

BMT DVD

The idea for the DVD came to me when I was preparing young people on our Young Persons Unit for

difficult procedures, using a Preparation Book. When I asked them if they wanted me to read the book

through or just talk about the pictures, the majority consistently said they wanted to view the pictures

and chat about them with me. I also observed that when in hospital the young people liked sharing

their stories with their peers, and their peers liked hearing the stories. I began to wonder whether a

Preparation DVD for the BMT patients might be better. I shared this thought with Michelle (CPF) and

she thought it was a brilliant idea.

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So we began to think it through, how it would work. Other members of the nursing team came on

board to work on this project with us. We had Flip Video cameras on the unit and that is what we used

because we did not want to have camera crews on the unit, which would be too invasive and too

disruptive.

I thought it would be fairly simple and very straightforward. We had some contacts in a film-making

company who would edit the videos and make a presentable movie, for free, which we would then

show in-house to our patients, in preparation for BMT. It would supplement the consultation with the

Consultant and the written information.

Letters were sent to patients who had been through the BMT process asking for volunteers who

would like to share their story on film. Four boys and one girl responded and set a day in December

2009 to film, after we had carefully planned how the day would work. We put in place adequate

support for the young people. We were all excited and everything seemed on track for a smooth

process.

On the day there had been a heavy snow fall, so the CPF could not get in. which left one of the other

nurses and me to film. This meant we had less support than we had planned. In addition, the unit was

incredibly busy that day, which further reduced the support we had put in place. The nurse, Linda,

went to film the 4 boys and I filmed two of the siblings who had accompanied their brothers to the day.

There was also a parent present for this, who sat in the room where the siblings were being filmed.

I filmed the two siblings chatting about their experiences with each other, in answer to specific

question which I had given them before shot. After I filmed their responses to each question in turn, I

would stop and ask if they were OK to continue. I also checked this out with the parent. Each time

they said yes; they were all happy to continue. If they had said no, I would have stopped. We all felt

comfortable with this and it was going well.

We reached the penultimate question, which was about what had been the best and worst times for

them concerning their sibling transplant. I started to film their response, and as they spoke, one of

them began to share a difficult time and she became tearful. Just at that moment, a member of staff

came in to see how it was going, and she looked horrified that the sibling was upset, and she could

not stay and give support as she was really busy. She had to leave and said she would catch up with

me later.

I immediately began to feel extremely worried that I had done something wrong. I completed the

filming and the two siblings both said they had never been able to speak so openly and they found it

very helpful. I felt relieved when they said this. We said goodbye and they left. But I was still feeling

dreadful about it and I went to find Linda and asked her how her filming went. She said hers was

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great, and I shared my anxiety with her. Just then the staff member who had witnessed the

tearfulness came by and said, “When would you like to talk about this?”

I said, “Now, please!”

I cannot really recall the conversation we had, because I was just so upset that I may have done

something wrong. I think the others were trying to reassure me, but the feeling that I had not got it

right dominated.

My anxiety over this continued for many days. I had an AAR with my ward sister and our modern

matron, and I felt a little more reassured afterwards. But I still carried a sense of responsibility,

wondering if I should have cancelled the filming because of lack of support.

Eventually, I came to terms with this. It was a steep learning curve.

In early January 2010, I filmed the BMT consultant and that went really well. She was so lovely and

genuine and I felt privileged to be filming her. She came across as very real and honest.

We then presented our videos to our contact for editing into a movie. He then dropped a bit of a

bombshell by saying that, if he made the movie for us, it would go on a website to showcase our work

to a very wide audience. This was not something we wanted at all, as it was meant for patients only

on our unit. My heart sank, and I felt very low about it all.

Around this time the whole team of us who had been involved in this project were chosen by the

EBMT Conference 2010 to present the concept of this project. We felt, to do this, we needed to be

able to show a very short clip of the final movie (which had not yet been made!) So, my husband and I

then spent many long hours at home, trying to create a 3-minute film taster to take to the Conference.

Despite never having done such a thing before, we managed to produce and pretty effective clip. It

felt really good to have achieved this.

We took the clip on a DVD to EBMT 2010 in Vienna, and successfully presented and won 3rd

prize for

it. On hearing this, the other team members were over the moon. And I just sat and cried because it

had been such a difficult journey for me. But I also felt happy and challenged inside by the enormity of

the task ahead to bring this project to completion in a full length preparation movie.

Since then, the project has moved on very slowly, and I have felt pretty hopeless of its ever coming to

fruition. However, just recently Michelle told me that she may have found someone to edit the film

professionally and that news has really lifted me.

I have felt as if the filming side this project has been very mine and I want to see it develop. At the

same time I am trying not to own it too much as it really is a team effort. I have a high emotional

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investment in this project which makes me react in some highs and lows! And I am not normally like

that! It is all about providing our patients with age-appropriate information to enable them to cope

better with a difficult and hard treatment. This is very much at the heart of the project. This is what

stirs up my emotions. I know that I am not the only one who feels like this. We all want to get it right

for our patients and their families.

Nove - Booklet report - what, why, how?

Using the results of the previously mentioned questionnaire, it was evident that the already existing

patient information booklet: A guide to Allogeneic Haematopoietic Stem Cell Transplantation ,was

not meeting the needs of the adolescent patient. Those who responded to the questionnaire reported

finding the booklet too long and complicated so a number of them had chosen not read it when it was

given to them in the time leading up to their transplant. The original document was directed towards

the adult patient however, it was also Trust and JACIE approved. The team therefore decided not to

change the content of the original document, but to condense and edit it into the user friendly format

required by the adolescent service.

The 38 page document was split into sections so that 3 members of the working group could each

review a section with the aim of reducing it to an 18 page booklet. Apart from reducing size of the

booklet, it was necessary to also:

• use simpler language that could be understood by young people aged 13 – 19 years,

• use images that would make the booklet less dreary

• use to aid retention of crucial sections of information

Once each team member felt that they had reduced their section enough, the sections were then

brought together and edited as one body of work. One member of the team had gained useful

experience in producing adolescent-friendly cancer information whilst working for a website for

teenagers that was run by a cancer charity. She was therefore able to apply these skills to benefit the

project by making the booklet’s language and tone uniform and adolescent focussed. The team

members also made joint decisions on which nuggets of information were to be highlighted.

Meanwhile, an illustrator had agreed to create images which would be incorporated with the

information to complete the new booklet. Once the information and images had been combined, the

booklet was then printed and renamed to supplement the Service’s BMT

information delivery formats.

Crucial point reflection (expectations, feelings immediately after, feelings now) May – CRUCIAL

POINT UCH workshop – action plans, strategic statements. ? confusion over aim of project,

workshop. Different expectations of day.

It’s hard to try and think back that far. I think at the time I was expecting the “stakeholders” to be there

for the whole day so I was disappointed that they weren’t. Having said that, I was glad that they had

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come for at least some of it and had participated. I wasn’t expecting any big ideas to come out of it but

the MSN idea did and has now become one of the 3 big topics of the project so I’m very pleased

about that. I remember doing the action plans, strategic statements and the collages but any influence

that they have I think is now secondary or tertiary as I don’t sense them in the day-to-day life of the

project. That’s ok, though – perhaps they’ve served their purpose as the project is now flying. I did

think it to be quite idealistic at the time and I wasn’t able to see where we would start or eventually

successfully complete the project. It seemed like a lot to do and I buried my head in the sand hoping

the ugly beast would disappear. I kept the collages in the hope that they could be used in some sort of

display to remind us of our aims and original excitement but after a few months I threw them out –

testament to the fact that the project has gained momentum and we won’t be needing them! We were

supposed to arrange putting together an information board and suggestion box but this hasn’t

happened. The space is available but I quickly felt that there was already a lot to do for the project

and maintaining an IB and SB would add to that workload. Nobody has asked about it so I haven’t

mentioned anymore about it. After all nobody will miss an information board that never existed but

one that’s not updated is just annoying.

Critical point reflection (how it felt to receive response, perceived results) July – Overwhelmed

and disengaged. CRISIS POINT – no attendees at meeting. Julie & Caroline attend FONS workshop

3 – opportunity to debrief through external support – 200

I think that the confusion surrounding “what next” and fear of the project’s size contributed to the poor

attendance at the meeting that followed. I believe people were definitely overwhelmed and, as

humans do, avoided thinking about it. I was surprised at the time to find out that other people had

failed to attend but i also found it reassuring to know that I wasn’t the only scared one. The great thing

that came out of it though is it made someone take charge. Julie and Caroline came up with an action

plan because they obviously saw that nobody else was stepping up and so they just had to boss

everyone around to get some action. It was brilliant and without that the project wouldn’t be where it is

now so actually the crisis point was the single greatest moment of the project so far in my opinion!