What is transition?

 Transition is a process Gloucestershire Hospitals NHS Foundation Trust Cystic Fibrosis patients go through, resulting in a transfer to an adult health care service.

Transition is a co-ordinated process involving the young person, their families or carers and all the hospital departments involved in their care.

It is a gradual process beginning in early adolescence and is not completed until the young person has engaged in an adult health service.

Transition is a major milestone in the life of the young person and their family. It should be co-ordinated and planned well in advance, in close consultation with the young person to help ensure their participation and engagement with adult health care providers.

 

For Young People

Transition is a process where you, your doctor, and other health care professionals and your parents/carers work together to determine the best place for you to transfer to for your adult medical care.

The Gloucestershire Hospitals NHS Foundation Trust Cystic Fibrosis transition programme has been developed to provide both young people and their parents with information about different areas of transition. Topics include basic information about transition, self-management tips, health and wellbeing issues for young people, as well as links to other services.

 

What does transition mean for you?

Transition is a co-ordinated process that involve the department/s of the hospital that are relevant to your care, your health care team, a transition co-ordinator, your parents/carers and most importantly yourself! This team will help you develop a transition plan that can be put into action during your time at Gloucestershire Hospitals NHS Foundation Trust.

The most important person in this process is you. You will have an active roll, helping to determine your readiness through setting goals and using a health skills checklist. This process will occur slowly across your adolescence giving you time to learn new skills before you leave paediatrics.

Transition should be an enjoyable and planned process. The timing of your transition will vary depending on when you are ready. Transfer can be anytime before you turn 19 years of age.

The skills you develop will give you greater independence with your health care and help you manage your own health and well-being rather than having to rely on your parents/carers to manage it for you.

 

How does transition happen?

1. You and your doctor (plus another member of your health care team) will have initial discussion about the transition process and possible places you could transfer to for adult health care.
2. A transition lead (co-ordinator) will be assigned to you. This person may be your doctor, a nurse or anyone who is involved in your health care at Gloucestershire Hospitals NHS Foundation Trust. A transition lead’s role is to follow up with you throughout your transition process and after you have transferred. A transition form will be put in your medical records that you and your transition lead will fill out over a number of visits. This form has information on it that will help guide you and your health care team throughout the transition process. You and your health care team will use some of the transition tools such as the health skills checklist to help you know what will be important to learn during the transition process.
3. Close to the time of your transfer, a detailed referral will be sent to the adult hospital identified for your long term care. You should also get a copy of this referral and details of important procedures or test results you may have had while you were cared for by paediatrics. The adult hospital will then send an appointment to you or one will be booked for you before you leave your consultation.
4. You may meet some staff from the adult hospital before your first appointment, either through a transition clinic or an arranged visit to the adult hospital.
5. You will have your first appointment at the adult hospital.
6. You may well have a final appointment with your paediatric hospital doctor after you have been to the adult hospital to check how your transfer and first appointment went. You will also have follow up contact from your transition lead about 6-12 months after you transfer and will be given the opportunity to provide feedback about the whole process.

Each transition process is unique to the young person involved and yours may be slightly different to what is stated above, but you have the right to be involved in every step.

 

Aims of transition

There are several aims of transition. These include:

• To provide high quality health care which is appropriate for the young person’s age, culture and development and is flexible, responsive and relevant to their needs and is presented in a way they understand;
• To help the young person develop skills in communication, decision-making, assertiveness and self-care, self determination and self-advocacy.
• To improve their sense of control and independence in regards to their health care;
• To maximise the young person’s capabilities to live well and achieve their goals regardless of their condition or disability.

 

Phases of transition

Introductory/Planning Phase ( Hop )

This phase involves an introduction to the concept of transition, starting the information exchange, and an assessment of your knowledge of yourself, your medical condition and how you manage it.

Preparation Phase ( Skip )

This phase involves you starting to have some of your appointment time with your doctor without your parent/carer, developing a transition plan, having a transition lead assigned to you ( the person who will help manage the transition process ), and an introduction to the concept of confidentiality and ensuring it is strictly adhered to. Correspondence will start to be addressed towards you rather than just your parent/carer.

Transfer Phase ( Jump )

This phase involves an assessment of how ready you are to transfer, an information exchange between paediatric and adult services, providing you and your parents/carers with practical information about adult health care, and a process of allowing you to write a letter of introduction to your new doctor.

Evaluation

This phase involves follow up contact with you, including the opportunity for evaluation and feedback of the transition experience.

 

Transition challenges

As with most new things, there are certain challenges that you as a young person will have to face as part of your transition process including:

• Your health service being familiar and comfortable
• Your future is unknown
• Communication between services such as transferring health information
• Degree of participation/involvement in your health care for your parents/carers
• Different health systems and different expectations
• Being independent and fitting the management of your health condition in with being a young person.

   Working through the transition process with your health care team will help support and inform you by:

• Keeping you informed
• Ensuring you plan well in advance
• Developing self management skills
• Knowing your supports and resources

 

Differences in services

The adult health care system is very different to the children’s health care system in the same way that secondary school is very different to university or the workforce. There will be an expectation that young people have developed certain self-management skills including taking responsibility for their medications, filling prescriptions, attending appointments on their own when necessary, communicating important information to their health care team and making sure they are clear about their medical treatment and planning by asking questions and perhaps keeping notes.

 

Key transition points

1. You should have an active roll in your transition process where you learn new skills and knowledge that will support you to transfer services successfully.
2. Transition should be an enjoyable process whereby you identify your strengths as well as your gaps and then build upon them.
3. The timing of your transition will vary depending on you and what is going on in your life at the time.
4. You will have to overcome some challenges during your transition; your health care team as well as the information we will provide you with will help you to overcome these challenges.
5. Transition will encourage you to become more independent.
6. Transition will encourage you to set some goals to achieve and help you achieve them.

 

 For Parents and Carers

Transition from paediatric to adult health services is a time of significant change and may be stressful for both the young person and their families. As a parent/carer you will have to cope with your own challenges as you encourage your child to look after their own health and become independent. Your involvement in your son/daughters transition is important as it will help you to support them during this time of change.

 

What is transition?

1. Transition is a process which your child will go through leading to the transfer of their care to an adult health care provider.
2. Transition is a co-ordinated process including all departments at Gloucestershire Hospitals NHS Foundation Trust involved in your son or daughter’s care.
3. Transition is a gradual process starting with discussions in early adolescence with the transfer event occurring before your son/daughter turns 19 years of age, and usually once they have completed secondary school.
4. You and your child will be encouraged to participate in the process and your son or daughter will be supported in learning new skills of independence and self management of their own health care in preparation for the move to adult care.

 

Aims of transition

There are several aims of transition. These include:

1. To provide high quality health care which is appropriate for the young person’s age, culture and development and is flexible, responsive and relevant to their needs and presented in a way they understand;
2. To help the young person develop skills in communication, decision-making, assertiveness and self-care, self-determination and self-advocacy;
3. To improve their sense of control and independence in regards to their health care;
4. To provide support and guidance for the parents/carers;
5. To maximise the young person’s capabilities to live well and achieve their goals regardless of their condition or disability.

 

Transition challenges for parents and carers

As with most new things, there are certain challenges that you as a parent / carer will have to work through as part of your child’s transition process.

Challenges for parents may include:

• A changing role from managing your child’s care to becoming more of a support and resource.
• Feeling excluded or out of the loop as your child takes on more ownership of their care.
• Concern about your child’s readiness to transfer to an adult health service.
• Adjusting to adult health care services and different processes and expectations.
• Developing confidence in your child’s new medical team.

 

Working with your child’s health care team through the transition process will help support and inform you by:

• Encouraging your child to take ownership of their health.
• Encouraging you to transfer your knowledge to your child.
• Encourage direct communication between your child and the health care team.

 

Independence and your child

As your child approaches adulthood it will become more important for them to have an active role in their health care. This will mean that you as their parent / carer will have to take a few steps back. It is important that you do this at a pace that your child is comfortable with and gradually decrease your role in their health care as they learn to become self sufficient in their needs.

Encouraging independence in your son or daughter can be a challenging process for you as a parent / carer as you will have been the primary care giver and source of information throughout your child’s life. It is also important that you as a parent / carer have confidence in your child’s skills and knowledge to successfully manage their own care and ensure the best health and well being outcomes possible.

 

Phases of transition

Introductory / Planning Phase ( Hop )

This phase involves an introduction to the concept of transition, starting the information exchange, and an assessment of your child’s medical condition and how they will manage it.

Preparation Phase ( Skip )

This phase involves your child starting to have some of their appointment time with their doctor without you being present. They will begin to develop a transition plan, have a transition lead assigned to them ( the person who will help manage the transition process ) and an introduction to the concept of confidentiality and ensuring it is strictly adhered to. Correspondence will start to be addressed towards your child rather than to you.

Transfer Phase ( Jump )

This phase involves an assessment of how ready your child is to transfer, an information exchange between paediatric and adult services, and providing your child with practical information about adult health care.

Evaluation

This phase involves follow up contact with your child, including the opportunity for feedback of the transition experience.

 

Differences in services

The adult health care system is very different to the children’s health care system in the same way that secondary school is very different to university or the workforce. There will be an expectation that young people have developed certain self- management skills including taking responsibility for their medications, attending appointments on their own when necessary, communicating important information to their health care team and making sure they are clear about their medical treatment and planning by asking questions and perhaps keeping notes.

 

Self care tips

Caring for a person with a chronic illness or disability can be a full-time job in itself. It is easy to forget your own needs, wants and goals which can be detrimental to your own well-being as a carer in the long run.

Some tips directly quoted from the book “ There’s no such thing as a silly question” include:

• Keep as well as possible, to avoid minor illnesses which may add extra pressure on the family. Looking after yourself will better enable you to continue to look after others.
• Eat well-balanced meals where possible.
• Exercise regularly: walk, swim or use equipment at home. Balance this, however, with rest whenever possible.
• Access respite options.
• Get adequate sleep whenever you can. Sleep deprivation may compound existing stress. You may be able to schedule some sleep time while someone else watches your child, perhaps a carer or your partner.
• Role sharing at home can allow each person time to attend their needs such as rest, work or leisure activities.
• Consider talking to other parents who are in a similar situation, as this may help to reduce feelings of isolation. You may also find support groups helpful, either on the internet or in the community. Spending time with friends is important for emotional well-being.

List some achievable priorities for each day, week, month or year. For example:

• Daily – a 10 minute coffee break, a walk around the block…
• Weekly – a visit to a friend, some time in the garden, a game of tennis…
• Monthly – a manicure, an evening out with your partner…
• Yearly – a weekend away, a trip to see a show…
• Set aside some time to spend with your partner, your children, or your whole family, no matter how brief. Plan some fun things to look forward to. This will help maintain the bonds within the family.
• Ask for help when needed.
• Accept support when offered, especially if it is helpful.
• Identify areas of life where you are over committed, and consider reducing your involvement or delegating tasks to  relieve pressure.
• You may be eligible to apply to your local council for a Disability Parking Permit. This will enable you to use parking bays designated for people with disabilities.
• Take time out for yourself: retail therapy, pampering yourself, keeping a journal, craftwork, playing sport, catching up with friends.

 

Key transition points

Transition to adult health services is a natural step for young people with a chronic condition or disability. It is just as important for a young person to develop independence in their health care as it is for them to become independent in the more general aspects of their lives.

Transition is a long-term process and should be carefully planned, beginning in early adolescence.

You and your son or daughter have the right to actively participate in the whole transition process.

 

For Heath Care Professionals

It is the responsibility of every Gloucestershire Hospitals NHS Foundation Trust clinician to ensure that all young people with cystic fibrosis under their care are engaged in a planned, purposeful transition process that includes a co-ordinated successful transfer to adult heath services.

Definition 

“ A purposeful, planned process that addresses the medical, psychological and educational / vocational needs of adolescents and young adults with chronic physical and medical conditions, as they move from child centred to adult orientated health care systems.”

Society of Adolescent Medicine 2003.

 

Aims of transition

1. To provide high quality co-ordinated, uninterrupted health care that is patient-centred, age and developmentally appropriate, flexible, responsive and comprehensive with respect to all persons involved.
2. Promote skills in communication, decision-making, assertiveness, and self-care, self-determination and self-advocacy.
3. Enhance the young person’s sense of control and independence.
4. Provide support and guidance for the parent / carer of the young person.
5. To maximise life long functioning and potential.

 

Key elements of an effective transition programme

1.Presence of a written policy.

2. Individualised preparation that addresses psychosocial and educational / vocational needs, provides opportunities for adolescents to express opinions and make informed decisions and gives them the option of being seen by professionals without their parents.

3. The needs of parents / carers are acknowledged and addressed.

4. A co-ordinated transfer process with a named co-ordinator / case manager, and continuity in health personnel until the time of transfer where possible.

5. An interested and capable adult service.

6. Administrative support.

7. Primary health care involvement.

 

Key expectations

Initiate discussion regarding transition in early / mid adolescence as an integral part of the overall health care plan, thus making it a normal part of caring for an adolescent with a chronic illness.

Transition is most successful where there is a designated transition lead who, together with the young person and family takes responsibility for the process and a team approach with all the multidisciplinary team involved.

Inclusion of young people and their families in the development of the individual transition plan is vital to the success of the process.

Support young people and/or their families as they experience changes with the move to the adult system. Young people need to develop new skills and knowledge during the transition process. Families and carers are often anxious in the changes in their role from primary carer to support provider. Supporting young people and their families through this process is extremely important.

Prepare families for a different system as adult hospitals do run differently. Providing specific information about ongoing care available, and by who is essential.

The process of transition to adult health care needs to occur within a developmental context of when the young person is ready for this transfer, and during the most appropriate time, such as avoiding the final year of school or during an unsettled time in their illness.

Health professionals and parents / carers  need to recognize the importance of promoting the young person’s increasing capacity for self care ( in conjunction with their ability ) to prepare them for adult health care services.

Communicate and collaborate with your adult hospital counterparts and develop clear processes to ensure successful transfer to adult services for all patients.

Follow up after the expected first appointment in the adult health service to check for any issues, and to offer feedback opportunity, is the responsibility of the transferring department.

 

Preparation and self management

Adolescent transition research and expert opinion highlights that participation and empowerment are key principles in the transition process, allowing the young person more opportunity to have a positive and effective transfer experience, therefore reducing the likelihood that they will drop out of the health care system. Young people need to be provided with information and support to develop skills to manage their own health care and to feel adequately prepared and supported through the transition process for the transfer to adult care.

 

Transition plan checklist

The transition plan checklist is a tool to assist young people to identify the skills and knowledge they will need for managing their own health care as they transfer to the adult health system. It is expected that this document will be shared between parents, young people and health care professionals to review the skills the young person is developing. Each checklist is useful to then assess their readiness to transfer to adult health services and identify any skills or knowledge gaps that they may have.

It is also important to encourage the young person to identify and set some goals for their transition process. Ask them to develop goals with you that the transition plan checklist have identified as areas requiring attention, and work with the young person to help them achieve these goals so that they are given the best chance of a successful transfer.

 

The transition lead

Every young person who has cystic fibrosis, and is in a transition process should have a transition lead assigned to their case. The transition lead can be the young person’s doctor, specialist nurse or other allied health care professional. The transition lead must have an active role in the young person’s care.

The transition lead’s role is to have knowledge of the young person’s condition and treatment and be aware of their transition plan. The transition lead will have an overseeing role in ensuring that the transition plan progresses smoothly and is kept on track. The transition lead will also be the contact person for the young person and their family as well as other departments for information about that young person’s transition and transfer plans.

The last task the transition lead will complete will be follow up contact with the young person after they have transferred services, including encouraging them and a parent / carer to feedback their experiences of the transition process as a whole.

 

 Based on papers written by the DREAM team 2000-2010 McDonagh et al. Authors permission sought Dec 2011.