Case #6 – Transition from Paediatric to Adult Care

Case #6 – Natasha

Presenting Problem / Background

Natasha is a 17-year-old Caucasian female living with cerebral palsy (CP) and HIV who presents to her paediatric rehabilitation facility to commence planning for transition to adult health and social care services.

Subjective

Natasha has dysarthria and uses a Zygo Lightwriter (handheld voice output computer) to augment her verbal communication. She ambulates with a walker indoors, and for outdoor mobility, she uses a scooter. Recently she has been having increasing difficulty with ambulation, especially with transferring on and off of her scooter. She has lost approximately 60 pounds over the last month and now weighs 120 pounds with a height of 5 feet 11 inches. She stays in bed for most of the day because of dizziness and nausea. Natasha has a history of falls within the home.

She has recently started ART and finds the side effects make her feel weak and nauseous. Despite this, she has been taking ART as prescribed.

Social History

Natasha currently lives with her mother in a two-bedroom apartment. Both have the support from her 24-year-old unmarried stepsister and other relatives that come in occasionally to help out with meal preparation. Natasha contracted HIV during a trip abroad to visit family when improperly sterilized instruments were used during a medical procedure. Natasha and her mother are the only family members aware of her HIV status. She states that if any of her relatives are curious about her condition, she states that she has cancer. Natasha expresses that she does not want to be stigmatized or discriminated against, especially considering her family’s religious background. She is currently attending local high school and also does not want the kids in her class to learn about her HIV status. She also wishes to participate in as many school activities as possible. She hopes that upon graduation she can pursue further education and employment prospects. Natasha attends the rehabilitation centre with her stepsister and mother; you note from the chart they have joint POA for Natasha’s care.

The care transition is complicated by several factors: a) how a physical disability such as CP is supported, b) how HIV care is provided in her community, c) the availability of community supports, and, d) the availability of services (e.g., transportation, vocational training, financial assistance).

Objective

An objective assessment was not completed.

Guiding Questions

1. What are some of the (a) impairments, (b) activity limitations and (c) participation restrictions that Natasha is currently experiencing?

Notes: Consider the physical, cognitive, social, emotional and psychological challenges faced by Natasha and classify according to the ICF Framework.

Some examples might include:

Impairments: dysarthria, weight loss, dizziness, nausea, weakness.
Activity Limitations: decreased mobility (transfers, and walking), decreased meal preparation.
Participation Restrictions: decreased interaction with community (staying in bed), stigma and fear of disclosing HIV status to others outside her mother, POA (stepsister does not know HIV status), transition into adulthood – will she eventually live independently without her mother?

2. What added complexity does Natasha’s concurrent health conditions have on her overall health?

Notes: Natasha has CP in addition to HIV so there is a strong potential for episodes of ongoing illness.

3. What environmental factors and personal factors might influence Natasha’s ability to transition to adult care?

Notes: Environmental factors include fear of stigma – only her mother knows her HIV status despite both stepsister and mother having POA. There are supports from other family members around meal preparation. Personal factors include the fact that she is getting older and needs to prepare to transition to adult care.

4. What additional factors should be considered?

Nutrition: Natasha has experienced unplanned rapid weight loss, so nutritional habits or other needs (e.g., food security) should be reviewed. Suggest referral to a dietitian. If appropriate and if necessary, discuss options for community food banks, suppers, food boxes and community cooking support programs (which also provide social support).
Review sleep and rest/stress management. If required, follow up with a pamphlet, discussion or referral for good sleep hygiene.
Determine if Natasha has a reliable mode of communication to ensure personal and confidential contact with health professionals. Alternatives may include landline, cell phone or leaving messages with mother only.

5. What are some of the short-term and long-term rehabilitation goals for Natasha?

Notes: Consider patient values and preferences, and principles of shared decision-making, when discussing and developing goals. Use the SMART principle.

Short-term goals:

To increase postural control in sitting in 4 weeks.
To improve transfers in 4 weeks.
To increase tolerance for ambulation in 4 weeks.
To actively participate in meal preparation and other ADL in 4 weeks.
To determine if local services exist to help her to transition to adult care (e.g., case manager or peer navigator).

Long-term goals:

To develop a support network, and in particular, access to a teen or young adult support group.
To be able to participate in the community and increase her independence.

6. What are some of the strategies that might be used to address these impairments, activity limitations and participation restrictions and help with the transition into adult care?

Notes: Consider patient values and preferences as well as key medical issues when discussing treatment strategies. Consider using the process of shared decision-making to prioritize treatment choices/strategies, and provide rationale.

It is important that the strategies used to address her challenges take into account the ICF. By setting goals that address her impairments, this can lead to improvements in her activity limitations and participation restrictions. From a PT perspective, if her weakness is addressed, this can improve her ability to transfer thus increasing her ability to participate in her community and increase her independence. Linking her with a “teen/young adult group” will help her feel more supported with her HIV status, especially since her mother is the only one aware of her HIV status. Many people, including youth living with HIV, benefit from peer support programs. Examples of the range of peer support content include discussing diagnosis, sharing anxieties, support for exercise and other topics (i.e. coping as a single mom). If referral is to a non-HIV peer support program, the program should be screened for policies around discrimination, and there should be a discussion as to whether disclosure of HIV status is needed.

Linking with public transit for those with a disability could allow Natasha to participate more in her community and promote her independence. Having a social worker, case manager or peer navigator accompany her to the adult clinic for orientation will help with the transition and make the experience less intimidating.

Recordkeeping (e.g., tracking of exercise, medications, and other self-management techniques) may help Natasha to maintain her goals. Additional strategies may include keeping a daily reflection record, especially to identify items for discussion at the next healthcare appointment. All clients should also be encouraged to engage in some type of cognitive activity (e.g., reading, word games, or games on their cell phone). Mindfulness strategies (for example, mindful meditation) help many people living with HIV and concurrent disorders to manage their symptoms, stress and uncertainty.

7. What kind of educational health promotion, prevention, care, treatment and support materials or information might you provide for Natasha?

Notes: Education about adult care, what services are available to assist with IADL, stigma, disclosure issue, link with support group for young adults, drug benefit programs and other assistive programs through various community agencies.

8. What other health or social services might Natasha also benefit from having access to? Why?

Notes:

PT, SLP, OT, Dietitian
Link to a transition support coordinator if available at the local children’s treatment centre.
Follow up with augmentative/alternative communication clinic for up-to-date SLP and OT high-tech communication tools.
Apple iPads and tablet PCs are now adapted for use in augmentative/alternative communication and are relatively affordable.
Link to CBHO if she is interested (there may be barriers due to fear of stigma and unwanted disclosure by association to a CBHO).
Any links to service organizations for CP?

9. What issues might Natasha need you to help her advocate for?

Notes: Natasha may need help in linking with needed services in adult care and access to adult rehabilitation services. It will be important for her current team to liaise with whoever will be taking on Natasha’s care to ensure a smooth transition. It will be important to check that the partners in this transition of care have sufficient HIV education and resources; appropriate contacts should be suggested if available.