Signposting Resources for Parents

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An important aspect of care of parents of adolescents with chronic rheumatic diseases is the provision of information. An understanding of normal adolescent development and how it can potentially be affected by a chronic condition is core to such information provision. A useful book that addresses normal adolescent development for parents is "Teenagers: The Agony, the Ecstasy, the Answers" (36).

Finally do not see your role as the divider/separator of the young person and their family. You have an important and crucial role of seeing a young person develop control and independence, within the context of the family, under your care, before moving to adult services. Table 5 provides examples of web-based information for use with and/or by parents of young people with chronic rheumatic disease.

Table 3 Adolescent Rheumatology Mid Transition Plan for Parents

Name: Start date:

Name: Start date:

Table 3 Adolescent Rheumatology Mid Transition Plan for Parents

Transition skills

Yes, I can do this on my own and don't feel I need any extra advice

I would like some extra advice/help with this

Action/ date

I understand the medical terms/ words and procedures relevant to my son/daughter's condition

I feel confident for my son/ daughter to be seen on their own for some/all of each clinic visit

I understand my rights and responsibilities as a parent to information, to privacy and in decision-making and consent

I understand my son/daughter's rights and responsibilities to information, to privacy and in decision-making and consent

I am able to help my son/daughter manage their fatigue (tiredness)

I am able to help my son/daughter when they find it difficult to sleep well

I am able to help my son/daughter manage any pain they may have

I understand what each of my son/ daughter's medications are for and their side effects

I encourage my son/daughter to be responsible for their own medication at home

I know what each member of the rheumatology team can do for my son/daughter

(Continued)

Table 3 Adolescent Rheumatology Mid Transition Plan for Parents (Continued)

Transition skills

Yes, I can do this on my own and don't feel I need any extra advice

I would like some extra advice/help with this

Action/ date

I understand the differences between pediatric and adult health care

I understand the importance of exercise/activity for both my son/daughter's general health and their condition

I understand what foodstuffs are good for young people like my son/daughter

I know how to access reliable accurate information for parents about sexual health for young people

I understand the risk of drugs, alcohol and smoking to the health of young people

I encourage my son/daughter to be responsible for a particular household chore(s) at home

I encourage my son/daughter to be self-caring at home, e.g., dressing, bathing/showering, etc.

I know about resources that offer support for young people with my son/daughter's condition and their families

I know how to access I know how to access advice and/or help with my son/daughter experiences unwelcome comments/bullying

I know how to deal with any discomfort my son/daughter has about the way he/she looks to others

(Continued)

Table 3 Adolescent Rheumatology Mid Transition Plan for Parents (Continued)

Transition skills

Yes, I can do this on my own and don't feel I need any extra advice

I would like some extra advice/help with this

Action/ date

I know my son/daughter has someone they feel able to talk to when they feel sad/fed-up

I Know how to access advice and/ or help with my son/daughter's education

I know what my son/daughter wants to do when they leave school

I understand the importance of work experience for future career development of young people like my son/daughter

I am aware of any potential impact of my son/daughter's condition to their education and/or work opportunities

Please list anything else you would like help or advice with:

Table 4

Shared Leadership Model

Increasing

Young

age/time

Provider

Parent/family

person

i

Major responsibility

Provides

Receives

care

care

i

Support to parent/family and

Manages

Participates

young person

i

Consultant

Supervisor

Manager

i

Resource

Consultant

Supervisor

Note: Each person identifies where he/she is functioning on this table and then discuss what needs to happen to get to the ultimate goal of care management for that individual young person.

Source: From Ref. 35.

Note: Each person identifies where he/she is functioning on this table and then discuss what needs to happen to get to the ultimate goal of care management for that individual young person.

Source: From Ref. 35.

Table 5 Useful Web-Based Resources for Parents

Disease-specific information: www.ccaa.org.uk

Chat 2 Parents booklet specifically for parents of adolescents with arthritis

General information for patients:

www.arthritis.org/communities/juvenile_arthritis/about_ajao.asp

The website of the American Juvenile Arthritis Organization - a council of the U.S.-based Arthritis Foundation - offers generic information for parents of adolescents www.tsa.co.uk

The U.K.-based Trust for the Study of Adolescence, which produces a wide range of useful resources in various formats for parents of adolescents www.parentlineplus.org.uk

A U.K.-registered charity that offers support to anyone parenting a child - the child's parents, stepparents, grandparents, and foster parents www.youngminds.org.uk

A U.K.-registered charity with useful resources for parents of adolescents, with an emphasis on mental health www.rcpsych.ac.uk/mentalhealthinformation/childrenandyoungpeople.aspx

The website of the U.K.-based royal College of Psychiatrists. Useful factsheets for parents re:child and adolescent mental health, including "Surviving adolescence" www.aacap.org/index.ww

The website of the American Academy of Child and Adolescent Psychiatry. Useful information sheets on normal adolescent development. www.dh.gov.uk

"Consent - What You Have a Right to Expect. A Guide for Parents" A leaflet about consent for parents of children and young people published by the U.K. Department of Health.

Support groups: www.ccaa.org.uk

U.K.-based Children with Chronic Arthritis Association www.kidswitharthritis.org

U.K.-based charity for families with children with arthritis www.cafamily.org.uk

U.K.-based charity (Contact a Family) for families of disabled children

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