The Cystic Fibrosis Youth Worker Service: An Evaluation ... · The Cystic Fibrosis Youth Worker...

The Cystic Fibrosis Youth Worker Service: An Evaluation

Jennifer Kay

Commissioned by Dr Sophie Cammidge & Dr Gary Latchford


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Contents

1 Introduction…………………………………………………………………………….5

1.1 Cystic fibrosis………………………………………………………………………..5

1.2 The youth worker service…………………………………………………………...5

1.3 The role of the cystic fibrosis youth worker within the Leeds Teaching Hospitals

Trust and commission of the SEP………………………………………………….7

1.4 Aims of the evaluation………………………………………………………………8

2 Method………………………………………………………………….……………8

2.1 Design………………………………………..………………………………………8

2.2 Sample……………………………….………………………………………………9

2.3 Data collection………………………………………………………………………9

2.4 Analysis……………………………………………………………………………..10

2.5 Ethical considerations ……………………………………………………………..10

3 Results………………………………………………………………………………10

3.1 Promoting and developing the role..………………………………………………11

3.2 Transition…………………………………………………………………………..12

3.3 Supporting young people………………………………………………………….13

3.4 Supporting staff……………………………………………………………………16

3.5 Suggested improvements………………………………….………………………18

3.6 Valuable aspects of the role……………………………………………………….19

4 Discussion…………………………………………………………………………21

4.1 Main findings……………………………………………………………….……..21

4.2 Dissemination……………………………………….…………………………….22

4.3 Strengths and limitations………………………………………………………….22

4.4 Recommendations…………………………………………………………………24

4.5 Summary of recommendations…………………………………………………….26

5 References………………………………………………………………………….27

6 Appendices………………………………………………….……………………..30

6.1 Information sheet………………………………………….…………….………....30

6.2 Consent sheet……………………………………………………………………...32

6.3 Interview schedule…………………………………………………….…………..33


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6.4 Codes, themes and subthemes and thematic map…………………………..………..34

Tables

Table 1: Participant Details………………………………………………………….…..8

Table 2: Phases of Thematic Analysis………………………………………………….10


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1 Introduction

1.1 Cystic fibrosis

Cystic fibrosis (CF) is a chronic life-limiting condition (British Medical Journal

[BMJ], 2018), which affects more than 10,400 people in the United Kingdom (CF

Trust, 2018). Individuals are usually diagnosed at birth and experience a gradual

deterioration in their health over time (National Health Service [NHS], 2018). It’s

most common clinical manifestations are pancreatic dysfunction and lung disease,

due to a build-up of sticky mucus, which is inefficiently cleared (BMJ, 2018).

There is no cure and management often involves complex treatment regimens

including medication, physiotherapy, nutrition, exercise and transplant (NHS,

2018).

1.2 The youth worker service

The role of a youth worker (sometimes referred to as a key worker) is to support

young people’s personal and social development and increase participation in

education or training (Cabinet Office and Department of Education [DoE], 2010).

Youth workers mainly work with those aged between 11 to 25 years of age (Watson,

2004). To become a youth worker, individuals must complete a degree level

qualification validated by the National Youth Agency (NYA). Experience working

with young people prior to degree learning can be gained through a voluntary/paid

youth support worker role or apprenticeship (NYA, 2019).

Traditionally youth worker roles have been in the community, although more

recently youth workers are being employed in a hospital setting with chronic health

conditions (Watson, 2004). This is widely recommended in professional guidelines

(Royal College of Nursing [RCN] 2004; Department of Health [DoH], 2006;

Department of Health [DoH], 2008). Within a chronic health setting, youth workers

may work to increase a young person’s sense of agency in their medical treatments

and their wider context (NYA, 2004). This may involve monitoring and improving

their health, psychosocial and educational/employment needs (RCN, 2004). Support


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and advice may not be limited to health issues and communication can be adapted,

to better enable young people to understand and respond to information (Yates,

Payne and Dyson, 2011).

The youth worker sits within a social framework, allowing relationships with young

people to be built on trust and respect. This contrasts with clinicians who typically

work within a bio-medical framework, which can be a barrier to building

relationships with young people (Yates et al., 2011). Youth workers may also bridge

the gap between clinicians and young people, resulting in improved engagement

with services and increased adherence to treatment regimens (Yates et al., 2011;

Cross and Harden, 2017). The presence of a youth worker within a hospital setting

has been reported as a valuable social contact and trusted source of advice and

support (Hilton, Watson, Walmsley and Jepson, 2004). Additionally, it has been

shown to reduce non-attendance rates from 32 to seven per cent in a transplant

service (Cross and Harden, 2017).

Transition is the purposeful and planned process of addressing medical,

psychosocial and educational needs as individuals move from paediatric to adult

health care (Department of Health and Social Care, 2004). Research literature and

professional guidance recommend that a youth worker should be involved in the

transition process for those with chronic health conditions (Hilton et al., 2004;

McDonagh & Viner, 2006; DoH, 2008; Watson, 2012). The role of the youth worker

in providing access to ongoing support groups, practical help and advice to those

with chronic kidney disease during transition has been cited as effective (Watson,

Harden, Ferris, Kerr, Mahan and Ramzy, 2011). However, there is generally a lack

of research examining the impact of the youth worker in transition for those with

chronic health conditions.

An increasing number of young people face transition due to the development of

successful treatments for chronic conditions (Watson, 2004). Transition tends to

happen at a challenging time of development and those with chronic health


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conditions have significant, additional difficulties to overcome (Kennedy, Sloman,

Douglass, & Sawyer, 2007; Khadr and Kelnar, 2008). Therefore, it is not surprising

that many young people struggle with transition, adherence to medical treatment

during this time and the increased responsibility for managing their illness (Crowley,

Wolfe, Lock & McKee, 2011; Watson, 2012). Youth workers are particularly

important during the transition of complex cases, whereby the individual patient

may be at risk of suffering a poorer outcome (DoH, 2006).

The number of youth workers based in a hospital setting is still small and

consequently, evaluation of their impact is rare (Yates et al., 2011). There are no

published studies on the impact of a CF youth worker, to the best of the researcher’s

knowledge. However, given the evidence presented above, this role may potentially

improve the quality of care for young people with CF. This strongly indicates a need

to evaluate whether the employment of a youth worker in CF is beneficial.

1.3 The role of the cystic fibrosis youth worker in Leeds

Teaching Hospitals Trust and commission of the SEP

The paediatric and adult CF services at Leeds Teaching Hospitals Trust (LTHT)

appointed a youth worker as a new service in April 2017. It was planned that the post

would be funded for 1.0 WTE over two years by the CF Trust and the adult CF team.

Working hours are flexible and work is conducted across hospital and non-hospital sites.

The role involves supporting those with CF aged between 14 to 25 and their

families/carers with a range of psychosocial needs. The youth worker provides activities

and facilities to meet the needs of young people and uses several technologies to

communicate (e.g. telephone, email and text messaging). This has been shown to increase

engagement in young people who are chronically ill (Miloh et al., 2009).

The youth worker also plays a key part in transition. This is important as 70 per cent of

those with CF were found to lack confidence around transition and 65 per cent thought

employing a youth worker would aid transition (Bowmer, Duff and Sowerby, 2015).


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Young people with CF have emphasised the importance of feeling listened to and an

appropriate communication style during transition (Al-Yateem, 2012). The youth worker

acts as an advocate and supports the CF teams to care for young people. This is consistent

with the literature and professional guidance on an effective transition (McDonagh &

Viner, 2006; DoH, 2008).

The SEP was commissioned by Dr Sophie Cammidge, Senior Clinical Psychologist in

adult CF, following a survey evaluation by the CF team. This found that young people

felt the youth worker was beneficial in allowing them to feel heard, providing emotional,

practical and educational/career support and supporting transition (Mehmood,

Cammidge, Peckham, and Duff, 2018). It was hoped that the results of this survey and

the current evaluation could be utilised in developing a business case to secure further

funding for the post. The CF trust also requested an evaluation of the role.

1.4 Aims of the evaluation

To evaluate the impact of the youth worker service from a patient and staff

perspective.

2 Method

2.1 Design

One-to-one, face-to-face, semi-structured interviews lasting approximately 20

minutes were conducted across the two hospital sites. Interviews invited

participants to share their perceptions of the impact of the youth worker role.

Semi-structured interviews were chosen to enable a guided conversation around

evaluation of the youth worker role, which allowed space to probe for additional

details if participants highlighted aspects not considered by the researcher.

Alternative methods may have included the use of measures over time or analysis

of caseloads. Interviews were the chosen approach, as they are a way of gathering

detailed information and widening perspectives beyond that of the alternative


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quantitative methods described above (Bernard, 1988). It was thought that this

may provide a richer set of recommendations for service development.

2.2 Sample

It was anticipated that the evaluation would include both patient and staff

perspectives. Paediatric and adult patients who had had at least four sessions with

the youth worker were contacted by the CF psychology team with a description of

the study and invitation to participate. However, none of the eligible patient

participants replied to recruitment letters. The implications of this will be discussed

later in the report. Staff in the adult and paediatric CF services were contacted by the

project commissioner and asked to participate in the evaluation. Seven staff

members volunteered to participate, details are given in Table 1.

2.3 Data collection

The collection of data was undertaken across two days in June and July 2018.

Interviewees were provided with a consent and information sheet prior to the

interview commencing (Appendix 1 and 2). Interviews were conducted using an

interview schedule (Appendix 3) and were audio-recorded. Interviews were

transcribed immediately after each interview by the researcher.

Table 1: Participant Details

Participant Number Service Job Role

1 Adult Social Worker

2 Adult Advanced Clinical Pharmacist

3 Adult Dietician

4 Paediatric Clinical Nurse Specialist

5 Adult Consultant

6 Paediatric Consultant

7 Paediatric Clinical Nurse Specialist


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2.4 Analysis

Interviews were analysed using thematic analysis (Braun and Clarke, 2006). This

method was chosen as it can usefully summarise the key features of a large body

of data and produce a rich description of the data set (Braun and Clarke, 2006).

The development of themes was inductive in that they were data-driven rather

than being developed based on a theoretical interest. The analysis followed the

process suggested by Braun and Clarke (2006). See Table 2 for further details.

Several guiding principles have been proposed to enhance the robustness of

qualitative data analysis (Elliott, Fischer and Rennie, 1999). One of these is

credibility checks. Coding, subthemes and themes were examined for face validity

by the project commissioner and an academic supervisor. Another of these

proposed principles is owning one’s own perspectives in advance and as they

become apparent in the research. Steps were taken by the researcher to explore

their own reflexive thinking and the potential impact of this on analysis. For

example, note-taking in academic supervision, which explored the researcher’s

assumptions and biases in relation to the data. These will be discussed in more

detail in the discussion. Full details of coding, subthemes, themes and a thematic

map are available in Appendix 4.

2.5 Ethical considerations

Consultation with the LTHT research and development department was conducted

prior to the project commencing. It was agreed that NHS ethical clearance was not

required. Therefore, ethical clearance was sought from the University of Leeds

Research Ethics Committee. Ethical approval was received on 16th February 2018

from the University of Leeds School of Medicine Research Ethics Committee.

Participation in the project was voluntary. Participants were given an information

sheet at recruitment and the beginning of the interview. Written informed consent

was sought from all participants. Participants were able to withdraw up to one week

after the interview was completed. All recordings and transcript data were kept


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confidential and stored securely with encrypted software. Participant numbers have

been used to maintain anonymity.

Table 2: Phases of Thematic Analysis (Adapted from Braun and Clarke, 2006)

Phase Description of the process

1 Familiarisation with the data Transcribing data, re-reading, noting down ideas.

2 Generating initial codes Coding interesting features of the data in a

systematic fashion across the entire data set,

collating data relevant to each code.

3 Searching for themes Collating codes into potential themes, gathering

all data relevant to each potential theme.

4 Reviewing themesChecking themes work in relation to the coded

extracts (Level 1) and the entire data set (Level

2), generating a thematic ‘map’ of the analysis.

5 Defining and naming themesOngoing analysis to refine each theme and the

overall story the analysis tells; generating clear

definitions and names for each theme.

6 Producing the reportSelection of extract examples, final analysis of

selected extracts, relating back of the analysis to

the research question and literature, producing a

report of the analysis.

3 Results

Six themes were generated from the data, each are detailed below.


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3.1 Promoting and developing the role

The first theme focused on how the youth worker role has been developed and

promoted. This was split into three subthemes; promoting the role, a flagship

role and continual development.

Promoting the role

Five participants across both teams discussed how the role has been promoted

through different platforms, including the CF European conference and a video on

the CF trust website. This has fostered interest and facilitated education about the

role:

“There was very positive feedback [at the conference] and it’s generated a lot of

interest in the role.” Participant three

A flagship role

Three staff members from both teams believed the role was a pioneering service,

which will pave the way for other CF youth worker posts:

“I do feel it’s something that probably in five years’ time, other units will be

asking why didn’t we have one sooner.” Participant three

This is in line with professional guidance, which recommends a youth worker for

those with chronic health conditions (RCN 2004; DoH, 2006; DoH 2008).

Continual development

Four participants described the role as one that is continuing to be shaped as it

evolves. Staff spoke about how the youth worker has adapted the role to fit within

the context of CF:

“Looking at other youth workers methods and being able to adapt that to what

we’ve got, because we’re very different from the ordinary.” Participant seven


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3.2 Transition

The second theme concerned the youth worker’s input into transition. The

subthemes associated with this were supporting young people and their

families through transition, continuity of care and developing the transition

process.

Supporting young people and their families through transition

Research suggested that 70 per cent of those with CF lacked confidence around

transition (Bowmer et al., 2015). This fits with the current findings, as three staff

members described transition as a daunting process for young people.

Consequently, they mentioned ways in which the youth worker has supported

young people and their families during transition. These include putting them at

ease, offering reassurance and managing expectations. Four participants said the

presence of the youth worker has made a difference for young people who are

transitioning:

“There’s a group who’ve recently come up from paediatrics who I think he has

made a big difference for.” Participant five

This is consistent with the patient perspective in the survey evaluation, who

reported that the youth worker has made a key difference in supporting transition

(Mehmood et al., 2018).

Continuity of care

One adult and two paediatric staff members suggested that the youth worker

supports continuity of care in transition by acting as a familiar face:

“There aren’t many familiar faces that patients have going from paediatrics to adults,

but he’s one and it makes it easier for the patients.” Participant five


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Developing the transition process

Three participants (two from paediatrics, one from adult) emphasised the role that

the youth worker has played in developing the transition pathway. This includes

taking responsibility and bringing their own visions to the process:

“He’s been really good in terms of transition, because you know we’ve all gone

through changes with the transition pathway. So he’s been really heavily involved

in that.” Participant four

3.3 Supporting young people

The third theme related to the youth worker’s contribution to supporting young

people with CF. This theme incorporated six subthemes; impact on clinical

outcomes, supporting socialisation and promoting inclusion, career and

education planning, practical support, supporting complex patients and their

families and building a relationship and communication.

Impact on clinical outcomes

One paediatric and three adult staff members commented on the role of the youth

worker in supporting young people to achieve positive clinical outcomes (e.g.

increased clinical attendance). This is in line with guidance on the role in a

chronic health setting (NYA, 2004). In particular, the role of the youth worker in

supporting adherence through increasing knowledge of medication management

was highlighted:

“He’s helped a few of our patients with medication and helped them find their

pharmacy, erm, they didn’t even know what a prescription was…” Participant two

This is important as the age group that the youth worker is involved with show the

poorest adherence to medical treatments (Watson, 2012).


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Supporting socialisation and promoting inclusion

Five participants from both teams mentioned the role of the youth worker in

supporting young people with CF to socialise and feel included. This is

recognised as an important part of a youth worker’s role (RCN, 2004; Cabinet

Office and DoE, 2010). Staff discussed ways in which the youth worker has

encouraged socialisation, including supporting leave from the ward and accessing

social activities:

“He’s made a massive difference…They now have access to youth clubs, we’re

looking at supporting the Duke of Edinburgh award, there’s someone they can

talk to on the wards and take them for a coffee, because it can be isolating and

lonely for them.” Participant six

Participants also discussed how the youth worker has worked creatively to reduce

isolation:

“The difficulty for him is that because of infection control we can’t get patients

together as a group… We thought about ways of bringing young people together

using skype or other technologies…That may help…A lot of young people with CF

have never experienced anything other than segregation.” Participant three

Career and education planning

This subtheme was prevalent, with all seven participants speaking about the role

of the youth worker in increasing participation in education and careers. It was

also reported as a key part of the role by young people in the CF service

(Mehmood et al., 2018) and is cited in the literature (RCN, 2004; Cabinet Office

and DoE, 2010). Participants commented on how the youth worker has been

helpful for increasing young people’s confidence in these areas:


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“A boy last week erm, he’s had real issues with his confidence and he said “I

want to apply for college, but I’ve got no idea what to apply for. I’d really like to

sit down with [youth worker’s name] and go over my options”. Participant five

Practical support

The role of the youth worker in supporting young people with practical issues,

such as providing benefits and housing advice, accessing resources and

signposting them to other sources of support was mentioned by five participants

across both teams:

“He’s been really helpful with you know… You could access this or that because

of your CF.” Participant seven

Again, this is emphasised as an important part of the youth worker service in

guidance (RCN, 2004; Cabinet Office and DoE, 2010), as well as by young

people in the CF service (Mehmood et al., 2018).

Supporting complex patients and their families

Guidance suggests youth workers should input into complex cases (DoH, 2006)

and six participants talked about the usefulness of the youth worker’s input for

those who are more complex. Participants commented on the idea that young

people in their mid-teens to mid-twenties are a complex cohort and the youth

worker is beneficial for supporting this age group.

“That group [14-25] who feel a bit disconnected, having a buddy to help them

through the process. I think it’s so important that they’ve got somebody who they

can trust and open up to.” Participant seven

Building a relationship and communication

The ability of the youth worker to build a relationship and communicate

effectively with young people was described by six of the seven participants. This


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included advocating young people’s needs and communicating information in a

way young people engage with. Spending time listening to young people’s

concerns and not just focusing on their health was also cited as useful:

“He’s not interested in their physical health as such, you know, he’s more

interested in their education, friendships… which everyone else just ignores. It

makes a huge difference...” Participant five

These skills are cited in the literature (Yates et al., 2011; Al-Yateem, 2012) and in

the evaluation of young people, who said that the youth worker allowed them to

feel heard (Mehmood et al., 2018).

3.4 Supporting staff

The fourth theme covered the youth worker’s role in supporting staff. The five

subthemes were attending and contributing to meetings, joint working, fills a

professional gap, bridges the paediatric and adult team and raises awareness

of young people’s needs.

Attending and contributing to meetings

One paediatric and three adult staff members said that the youth worker supports

staff through attending and contributing to meetings about patients:

“We’ve had meetings where we’ve discussed cases that have crossed over and

we’ve felt each other might have needed support.” Participant one

Joint working

Six participants talked about joint working when considering the role of the youth

worker and what has been helpful. They believed that working closely enabled

learning, as the youth worker brought his own knowledge to joint work:


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“We’ve had a few cases where we’ve jointly worked and I’ve found that’s been

really helpful in terms of his knowledge.” Participant one

Fills a professional gap

Much data existed to support this subtheme with all participants touching upon it.

They discussed how the role compliments other professions and bridges the gap

between these. Participants spoke about how staff do not always have the time or

expertise required and that the youth worker is a much-needed resource:

“The skills that he has and what he does are things which other members of the

team could potentially do, but it never happens. So yeah, he plugs a hole which no

one else was willing or had the time to do.” Participant five

Bridges the paediatric and adult team

Five participants mentioned that the youth worker has helped bring the two teams

closer together:

“Our adult and paeds team have a really good relationship and he sort of

cemented that because he’s the element that covers both.” Participant seven

Raises awareness of young people’s needs

Four participants (one paediatric and three adult staff members) thought that the

youth worker supported staff by raising awareness of young people’s needs. This

included paying attention to things perceived to be ‘ignored’ by other clinicians

and communicating patient’s needs to the medical team. This is important as the

literature suggests acting as a link between clinicians and young people can

improve engagement and adherence (Yates et al., 2011; Cross and Harden, 2017):

“He puts the patient’s point of view across... Because even though we think we

understand, I don’t think we always do, even though we try… He presents it in a way that

we go oh right okay.” Participant two


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3.5 Suggested improvements

The fifth theme depicted suggested improvements to the youth worker service.

There were five subthemes within this; no improvements, increased capacity,

more joint working opportunities, broadening the scope of the role and

continue to make and strengthen existing links.

No improvements

Participants were asked whether they had any recommendations for improvement.

One adult staff member believed that none were needed.

Increased capacity

Three participants (two from paediatrics and one from adult) stated that they

would like to have the youth worker full-time in their service or employ an

additional youth-worker. Due to the limited capacity of the youth worker, one

participant said that they only refer complex cases and therefore increasing

capacity may overcome this:

“We’re very aware that he has limited capacity and so there are some people who I’d

love him to see… But I wouldn’t refer because they’re not desperate. So we only refer the

tip of the ice berg.” Participant five

Other recommendations around increasing the youth worker’s capacity included

extending the age range and having a formal slot for the youth worker to see

patients.

More joint working opportunities

One participant from the adult team said that they would like to do more joint

working with the youth worker:


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“I’d love to do some proper joint working and I’m sure we could make a

difference.” Participant two

Broadening the scope of the role

Two participants suggested ideas for expanding the role. A paediatric staff

member proposed the idea of the youth worker discussing sexual health and

fertility with teenage boys, rather than this being done by a female nurse. An adult

staff member said that they would like the youth worker to have more input into

research on adherence and investigating medication issues in the home to improve

adherence:

“He could do a home visit and look at how they’re using their medicines and how it’s set

up and feed it back, then we could come up with a plan.” Participant two

Continue to make and strengthen existing links

An adult staff member suggested continuing to create and build upon links with

organisations such as the CF trust and other youth workers, for both peer support

and information:

“If he isn’t already doing so, linking in with the CF trust because they have

different strategies for user engagement.” Participant three

3.6 Valuable aspects of the role

The sixth theme highlighted aspects of the youth worker role that are valued by

staff. The four subthemes are flexibility of the role, a reliable source of support,

being separate from the clinical team and the value of the role.

Flexibility of the role

Being flexible was described as a valuable aspect of the role by five participants.

This included having a flexible work pattern to increase joint working


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opportunities and see more patients. The flexibility of working in a more informal

setting was also described as beneficial:

“Seeing people outside the hospital setting means he can create a nice bond.” Participant

six

A reliable source of support

The youth worker was described as a reliable source of support by three staff

members across both teams. They said that he was easy to contact, despite his

post being split and discussed individuals promptly with the team:

“You can ring him even when he’s not about to touch base.” Participant four

Being separate from the clinical team

Four participants said being separate from the clinical team was a valuable

position. They discussed how it can be difficult for young people to relate to

medical professionals, who may come across as paternalistic. Whereas, the youth

worker is seen as non-threatening and more relatable:

“He’s done it from a more relaxed and non-threatening role and I think it’s sort of taken

out all the…paternalistic kind of hospital thing we do.” Participant two

Value of the role

When asked about the role, all seven participants said that nothing felt unhelpful.

They shared many positive experiences and described the role as an asset:

“We would be lost without him really… I definitely think it has made a difference and

don’t know how we managed without him.” Participant three

This highlights the value of the role and supports existing research which found the

presence of a youth worker in a hospital setting was valuable (Hilton et al., 2004).


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4 Discussion

4.1 Main findings

The evaluation aimed to explore the impact of the youth worker role on the

paediatric and adult CF services at LTHT. It was hoped that this would be from a

patient and staff perspective, however only staff members participated. The

implications of this will be discussed in the strengths and limitations section.

Overall, the results suggested that the role of the CF youth worker is highly valued

by staff. This supports the survey evaluation conducted with CF patients at LTHT

(Mehmood et al., 2018). Six main themes were generated in this evaluation, namely;

promoting and developing the role, transition, supporting young people, supporting

staff, suggested improvements and valuable aspects of the role.

The role of the CF youth worker in promoting and developing the service was

highlighted. The team talked about how the role had been adapted to fit within the

context of CF and suggested that the service model could be rolled out to CF units

across the country. This is in line with recommendations that a youth worker should

be embedded within chronic health services (RCN, 2004; DoH, 2006; DoH, 2008).

Two other themes depicted the role that the youth worker has in supporting patients,

their families and staff. This included contributing to clinical outcomes, increased

socialisation and participation in careers and education for young people, increased

communication between patients and the medical team and building relationships

with young people, including complex patients.

The CF youth worker was seen as beneficial for aiding transition. In particular, for

developing the transition pathway and supporting young people and their families

through the process. Staff commented that the youth worker offers something that

no other role in the healthcare system does. Being separate from the clinical team

and having the flexibility to work in informal settings were noted as unique and

valuable aspects of the role. The youth worker service was spoken about as a vital

resource and reports of what the role encompassed are in line with criteria set by


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RCN (2004) and DoH (2006, 2008). Suggested improvements will be discussed in

the recommendations section.

4.2 Dissemination

The findings of this evaluation were disseminated at a poster conference as part of

the Doctorate in Clinical Psychology training course at Leeds University in

October 2018. The report was also shared with the paediatric and adult CF

services at LTHT.

4.3 Strengths and limitations

Several strengths and limitations should be considered. Firstly, a patient sample was

not included in this project, as none of the eligible young people replied to

recruitment letters. It is unclear what the reasons were for this, however it may

reflect the idea that this is a difficult age group to engage (Flores, 2007). There has

been a move towards encouraging young people to participate in evaluation, as they

can provide a unique perspective and may improve the quality and relevance of data

(O’Donoghue, Kirshner and McLaughlin, 2002; London, Zimmerman and Erbstein,

2003; Shaw, Brady and Davey, 2011). In turn, this may make results more

persuasive for policymakers and clinicians (Staley, 2009). Therefore, further

evaluation projects should consider how young people may be empowered to

participate. This would broaden the insight into the impact of youth workers.

The sample of staff who responded to recruitment were self-selected. Many of the

participants also already had a positive working relationship established with the

youth worker. Therefore, a limitation of the project is that the sample may have been

biased in regards to their perception of the youth worker, viewing them in a more

positive light. Despite this, a strength of the sample was that a range of healthcare

professionals were included, diversifying the perspective of the impact of the youth

worker.


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A strength of the semi-structured interviews, was that they allowed participants the

freedom to express their views about the youth worker beyond the interview guide.

This provided an opportunity for identifying new ways of understanding the impact

of the youth worker (Bernard, 1988). Semi-structured interviews are often preceded

by observation or informal and unstructured interviewing, to allow the development

of meaningful semi-structured questions. This was not done in the current project.

Instead, the questions were jointly formulated between the researcher and project

commissioner. A potential limitation of this is that a relevant area may have been

missed. It is also possible that some of the items on the interview guide could be

seen as leading questions, for example “What feels helpful about having a youth

worker?”. This methodological limitation may have been avoided by more careful

preparation and planning of the interview guide (Ayres, 2008).

Limitations of the analysis are also noteworthy. Thematic analysis occurred in the

absence of an existing theoretical framework. This means that the analytical claims

have limited interpretive power beyond description (Braun and Clarke, 2006).

Another disadvantage of the analysis is that the sense of continuity and contradiction

across each individual account (which may be revealing in themselves) were not

retained as they would be in a narrative approach (Braun and Clarke, 2006). In

addition, exploration of language use was not possible, as in other qualitative

methods such as discourse analysis (Braun and Clarke, 2006).

It is important to specify my own assumptions and values and the role that these

may have played in understanding and analysing the data (Holloway and Todres,

2003). My experience is predominately in health psychology, where I have worked

alongside youth workers. This meant I had some pre-existing knowledge and

positive experiences of this role. I hold a value around multidisciplinary working

and believe the presence of multiple different professionals within teams enables a

holistic service for patients. Additionally, I was aware that the results of this

evaluation may form part of a business case to re-commission the role. Together,

these factors may have led to me presenting the role in a particularly positive light


24

and over-emphasising the value of the youth worker. For example, I held an

assumption before and during data analysis that the youth worker would be an

integral member of the team, particularly for providing another perspective. This

thinking is likely to have had an impact on the results presented in the final report.

Attempts to address the impact of my own assumptions on the analysis included

recording my assumptions throughout the research process and the analysis being

checked by others for face validity. A strength of this credibility check was that

those carrying out the face validity had experience of working in CF and with a

youth worker. Experience relevant to the topic area in those conducting the face

validity is seen as a benefit (Elliott et al., 1999). However, this is still based on a

subjective judgement. Alternative methods that may have overcome this include

checking the researcher’s understanding with the original participants or

triangulating with quantitative data (Elliott et al., 1999).

4.4 Recommendations

In response to the findings of this project, it is recommended that further evaluation

takes place to build a case for future funding of the youth worker post. This should

attend to the limitations presented in this report and gather more direct evidence

which focuses on observation and measurement, rather than semi-structured

interviews in which cause and effect cannot be established. The current youth

worker service framework may be built upon for the development and evaluation of

other CF youth worker posts. This is in line with the literature and guidance which

advises on the presence of a youth worker in chronic health services (RCN, 2004;

DoH, 2006; DoH, 2008).

It is important to consider how the service provision can continue to develop and

achieve its potential. When asked about this, staff suggested several

recommendations. Firstly, creating and maintaining links with other organisations

and youth workers. This could increase access to resources and information for the

youth worker, as well as peer support and supervision. Secondly, offering a formal


25

slot may allow the youth worker to have more protected one-to-one time with young

people and increase access to the service. Thirdly, increased joint working

opportunities and expansion of the role may be beneficial, particularly with regards

to clinical outcomes. For example, more input into managing adherence and

speaking to teenage boys about sexual health and fertility.

Some of the suggested recommendations may not be possible within the current

remit of the youth worker’s role, due to limited capacity. Provision of more hours

may be achieved through employment of another youth worker. This could have

several advantages including full-time input into the paediatric and adult teams and

increased contact with patients, including those whom are less-complex.

Alternatively, the youth worker may consider linking up with other services and

resources in the community where young people can be signposted for support. In

order to develop a comprehensive case for the CF youth worker service, continual

evaluation should occur. This may include further quantitative evaluation, including

pre-post outcome measures. A summary of recommendations is provided below.

4.5 Summary of recommendations

Build upon the current project attending to its limitations, as part of a case for further

funding for this highly valued service

Use the current service model as a framework for developing and evaluating further CF

youth worker posts across the country

Continue to create and maintain links with other organisations and youth workers

Provision of a formal slot for seeing patients to increase opportunities for one-to-one

work

Increased joint working and expansion of the role e.g. input into adherence through

home visits and research and speaking to teenage boys about sexual health and fertility

Linking up with other services and resources in the community where young people can

be signposted for support

Continue to evaluate the role using pre-post outcome measures to develop a

comprehensive case for the service

Employment of an additional youth worker (funding permitting) to increase capacity


26

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Bernard, H. R. (1988). Research methods in cultural anthropology. Newbury Park, CA:Sage.

Bowmer, G., Duff, A. J. A., & Sowerby, C. (2015). 291 The views of adolescents with

CF on their transition and transfer to adult services. Journal of Cystic Fibrosis, 14, S132.

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative

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British Medical Journal. (2018, July). Cystic fibrosis. Retrieved from:

https://bestpractice.bmj.com/topics/en-gb/403

Cabinet Office and Department of Education. (2010). Positive for Youth: the statement.

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approach-to-cross-government-policy-for-young-people-aged-13-to-19/positive-for-

youth-the-statement

Cross, D., & Harden, P. (2017). A Dedicated Young Adult Service with a Youth Worker

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Impacts Favourably on Clinical Outcomes. American Journal of Transplantation, 17,

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Crowley, R., Wolfe, I., Lock, K., & McKee, M. (2011). Improving the transition between

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Cystic Fibrosis Trust. (2018, July). What is cystic fibrosis. Retrieved from:

https://www.cysticfibrosis.org.uk/what-is-cystic-fibrosis

Department of Health and Social Care (2004). National Service Framework for Children,

Young People and Maternity Services: Core Document. Retrieved from:

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data/file/199952/National_Service_Framework_for_Children_Young_People_and_Mater

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blicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4132145

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Elliott, R., Fischer, C. T., & Rennie, D. L. (1999). Evolving guidelines for publication of

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Kennedy, A., Sloman, F., Douglass, J. A., & Sawyer, S. M. (2007). Young people with

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London, J. K., Zimmerman, K., & Erbstein, N. (2003). Youth‐Led research and

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McDonagh, J. E. & Viner, R. M. (2006). Lost in transition? Between paediatric and adult

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6 Appendices

6.1 Information sheet


Information Sheet

You are being invited to take part in a service evaluation project. Before you decide if

you want to take part, it is important for you to understand why the project is being done

and what it will involve. Please take time to read the following information carefully.

Why the project is being done

The paediatric and adult regional cystic fibrosis centres appointed a youth worker in

April 2017. This project aims to evaluate the impact that the youth worker role has on

those who use the service. The project is being completed as part of the Doctorate in

Clinical Psychology training course and it is not sponsored or funded by any

organisation. The project has been reviewed and given ethical approval by Leeds

University School of Medicine Research Ethics Committee on 16th February 2018.

What the project will involve

You have been asked to take part in this project as you have experience working with the

cystic fibrosis youth worker. The project will involve a one-to-one interview with the

main researcher lasting approximately 30 minutes to an hour. This will involve answering

a few questions about what you feel the impact of the youth worker has been. The

benefits of participating include contributing to the development of the youth worker

role. No discomforts or disadvantages are anticipated. However, if you become distressed

this will be discussed with the project commissioner Dr Sophie Cammidge, so that

correct support can be sought.

Participation, consent and your right to withdraw


31

Taking part in the project is entirely voluntary and refusal to agree to participate will

involve no penalty or loss of benefits. It is up to you to decide whether or not to take part.

If you do decide to take part you will be given this information sheet to keep and be

asked to sign a consent form. You can still withdraw up to one week after the interview

has been completed. You do not have to give a reason for withdrawing.

Confidentiality, storage of data and anonymity

All data will be kept confidential and stored securely with encrypted software.

Pseudonyms will be used to maintain anonymity. No personally identifiable information

will be collected.

The use of data

Interviews will be audio-recorded and subject to a thematic analysis. The results of this

project will be written up into a report and presented at a poster conference in November

2018 as part of the Doctorate in Clinical Psychology training course. The data collected

in this project may also be published and presented at a Cystic Fibrosis conference. No

identifiable information will be included in the write up, quotations may be included

however these will remain anonymous. No other use will be made of the results without

your written permission, and no one outside the project will be allowed access to the

original recordings.

Thank you for taking the time to read through the information.


32

6.2 Consent sheet

Name of participant

Participant’s signature

Date

Name of lead researcher

Signature

Date

Consent to take part in “The Cystic Fibrosis Youth Worker Service:An Evaluation”

Add yourinitials

next to thestatement

if youagree

I confirm that I have read and understand the information sheet explainingthe above research project and I have had the opportunity to ask questionsabout the project.

I understand that my participation is voluntary and that I am free towithdraw up to one week after the interview has been completed withoutgiving any reason and without there being any negative consequences. Inaddition, should I not wish to answer any particular questions, I am free todecline. I understand that if I withdraw my interview recording will bedestroyed.

I give permission for members of the research team to have access to myanonymised responses. I understand that I will not be identified oridentifiable in the data or reports that result from the research. I understandthat if quotations are used, anonymity will be preserved. I understand thatmy responses will be kept strictly confidential.

I understand that relevant sections of the data collected during the studymay be looked at by auditors from the University of Leeds where it isrelevant to my taking part in this research. I give permission for theseindividuals to have access to my anonymous data collected in the project.

I agree to take part in the above research project and will inform the leadresearcher should my contact details change during the project and ifnecessary, afterwards.


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6.3 Interview schedule

Introduction

Introduce self and role

Purpose of interview/ what the evaluation is about

Anticipated length of interview

How results will be disseminated

Information kept anonymous (including use of quotes) and confidential except

anything that may indicate risk

Can ask to stop the interview at anytime

Any questions? Happy to continue and for responses to be included in evaluation?

Interview prompts

Q.1 Can you tell me about your experiences of working alongside the cystic fibrosisyouth worker?

Q.2 What feels helpful about having a youth worker in the cystic fibrosis team?

Q.3 What feels unhelpful about having a youth worker in the cystic fibrosis team?

Q.4 Is there anything you could recommend to improve the cystic fibrosis youthworker service?

Q.5 Has having a youth worker involved in the cystic fibrosis team made a difference?

Q.6 [Paediatric staff] Have you found the youth worker helpful in the transitionprocess from the paediatric to the adult team?

OR

Q.6 [Adult staff] In hindsight would you have found the youth worker helpful forthe transition from the paediatric to the adult team?

Q.7 Have you got anything else you would like to add or any other comments?


34

6.4 Codes, themes and subthemes and thematic map

Theme Subtheme CodePromoting and developing therole

Promoting the role Interest in the role at the CFEuropean conferencePresentation given to educateothers on the roleCreated a video to promote therole on the CF websiteAllowing CF community tosee impact of the roleEnthusiastic about rolling itout

A flagship role First CF youth worker in thecountryEnvied by other CF units inthe countryAnticipated increase in CFyouth worker rolesFortunate and proud to havethe first CF youth workerFirst experience of a youthworker

Continual development Created the role as it hasdevelopedRole is still new and evolvingLearning as you goAdapting the youth workerrole to fit with CFSharing ideas with other youthworkers to develop the role


35

Theme Subtheme CodeTransition Supporting young people and

their families throughtransition

Putting young people at easeduring transitionTransition can be a big thingfor peopleReassuring young peopleabout transitionManaging expectations abouttransitionMade the transition processless frightening for parentsMade a difference for youngpeople transitioning

Continuity of care Familiar face across bothteamsFills a role in paediatrics ofkeeping contact with patientswho have transitioned to theadult team

Developing transition process Vital role in the changes to thetransition service and pathwayYouth worker has own visionsfor the transition processTaken responsibility oftransitionMade transition processsmoother


36

Theme Subtheme CodeSupporting young people Impact on clinical outcomes Support with adherence issues

Increasing knowledge of medicationand medication managementSupporting medical goalsIncreasing clinical attendanceBetter health outcomes for complexclientsIncreasing independence

Supporting socialisation andpromoting inclusion

Supporting leave from the wardAccess to social activities andsupportBalancing infection prevention withsocial inclusionReducing isolationBreaking down myths about CF

Career and educationplanning

Increasing participation in educationand careersBoosting young people’s confidencearound careers and education

Practical support Benefits and housing adviceAccessing resources and signposting

Supporting complexpatients and their families

Difficult age groupsInput into young people who are hardto engageSupport for young people with otherlittle support

Building a relationship andcommunication

Acting as an advocate for youngpeople’s needsGets to know the young peopleTalking about general life and notjust healthCommunicating information in a wayyoung people engage withYoung people feel more open andrelaxed to talk to youth workerPatients ask to see the youth workeragainPatients feel cared for by youthworkerBeing on the same wavelength asyoung people facilitates engagement


37

Theme Subtheme CodeSupporting staff Attending and contributing

to meetingsDiscussing cases that overlap inmeetingsDiscussing patient’s socialcircumstances in meetingsUpdating MDT on patients

Joint working Brings own knowledge to jointworkWork closely on some cases

Sharing office space facilitates jointworkingLearn from each other in jointworking

Fills a professional gap Other staff don’t have the time orexpertise that the role requiresRole compliments other professionsand bridges the gapAdditional resource in the team

Brings a different perspective

Brought a lot of knowledge to therole which was missingTakes pressure off other staff

Unique role

Bridges paediatric and adultteam

Brings paediatric and adult teamscloser togetherHelps keep the whole CF teamjoinedBrings knowledge from one team toanotherFits well into both teams

Liaises between teams and increasescommunication

Raises awareness of youngpeople’s needs

Pays attention to things ignored byother cliniciansCommunicates and translatespatients’ needs to medical teamLiaises with medical team andpatients about challenging issuesVital link between patients andmedical team


38

Theme Subtheme CodeSuggested improvements No improvements No improvements needed

Believe youth worker isalready doing suggestedrecommendationsCan’t suggest improvementsas the role is still new andevolving

Increased capacity To have a youth worker full-time in paediatrics/adultsWould like another youthworkerSplit post limits inputCan only refer complexcases at present due tolimited capacityExtend the age rangeHaving a formal slot forseeing patients

More joint workingopportunities

Would like to do more jointworkingMDT approach to complexcases including youthworker

Broadening scope of role Investigating medicationissues in home settingMore input into adherenceBeing involved in researchDiscussing sexual health andfertility with teenage boys

Continue to make andstrengthen existing links

Linking with CF trust tothink about engagementstrategies for young peopleLinking with other youthworkers including potentialCF youth workers


39

Theme Subtheme CodeValuable aspects of the role Flexibility of the role Being flexible with work pattern

Flexibility is useful for increasedjoint working with all staffmembersWorking in more informalsettings e.g. patient’s home

Reliable source of support On the groundEasy to get hold ofAround a lot even though thepost is splitDiscusses individuals promptlywith the team

Separate from the clinicalteam

Non-threatening, non-judgemental, approachable andrelatable positionContact point outside of thehospital settingSeen as less paternalistic andauthorative than medicalprofessionalsBetter at approaching certaintopics than the medical teamCan be hard for young people toopen up to medical professionalsCan be hard for medicalprofessionals to relate to youngpeople or understand what elsethey have going on in their lives

Value of the role Nothing feels unhelpful aboutthe youth worker roleYouth worker helpful in lots ofwaysInvaluable and vital roleHope that the funding for therole continuesCan’t imagine not having ayouth workerFeel lucky to have a youthworkerYouth worker is a bonus to theteamDesperate for a youth workerbefore the role was filled


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