The Value of Inter-professional Collaboration when Advocating for Medically–Fragile Children

and their Families

Patricia Martinez MA, MSW,RSW

E-mail:patty.martinez@sickkids.ca

Division of Clinical and Metabolic Genetics

The needs of children with life-threatening metabolic-genetic diseases

The needs of children

The needs of parents

Advanced technology

Interdisciplinary services

24 hours nursing care

Support to monitor their

children

Respirology OT and PT

Home vehicle modification

Funding

Male Patient

Rare Inherited Metabolic Genetic Diseases and Interdisciplinary Teams

Primary Inter-professional

Team(s)

Community and Government

Agencies

Expertise in working with rare disease

Knowledge about

government systems

Different medical and psychosocial professionals

Experience in common medical

conditionRelationship with families

from the beginning

Updated informationabout policy changes that affect clients

Impact of Inter-professional Collaboration

Social Worker Metabolic Genetics

Facilitates communication among different

teams within and outside the

Hospital

Patient advocacy: - Educational counselling- Grieving- Bereavement

Help explain family dynamics

Identify policy gaps and make policy

recommendations in collaboration with the

health care team

Updates community

professionals about patients

needs

Community SW and case managers

Support community health providers and other professionals

understanding the unique nature of genetic

metabolic diseases

Provide updates of family matters when patients are not hospitalized

Demographics

•Young mother

•Member of a racialized group

•Lived below the poverty line

•No kinship support network

•In need of basic life skills

•Successfully completed grade 9

The role of social work in challenging and navigating systems

•This young patient needed 24 hours specialized

parental/caregiver care seven days a week.

•Was initially determined by community agencies

that the family was not eligible to receive nursing

care services

An Inter-professional approach was vital in this case

•Guidance was needed to understand:• Parent-child relationship• Parental behaviours

•The impact of the stigma of having a baby with a

metabolic-genetic disease.

•The role of the state in supporting this family.

Promoting the best interest of the child

Inter-professional approach was important to challenge

perceptions of parental neglect.

Some parental behaviours can be interpreted as ‘neglectful’

when in fact are only ‘different’ and shaped by extraordinary

circumstances.

The Social Construction of Motherhood

It is important to understand the impact of the social

construction of “motherhood” on policies and

procedures related to children with special needs

and their parents (frequently mothers).

An inter-professional dialogue and action was crucial

to challenge a policy regarding palliative care

services based on the notion of maintaining the best

interest of the child.

The interdisciplinary team consistently stressed the

importance of linking the well-being of the child and

the well-being of the mother in every single decision

made.

The well-being of the child and the well-being of the mother

Interdisciplinary approach and changes to social policy

The inter-professional paediatric team

recommended non-traditional strategies to address

the needs of a family in extraordinary circumstances.

**Advocated for the implementation of new

procedures for medically fragile patients with

metabolic diseases.

Changes in established procedures

Advocated for the right of the young patient to die

with dignity and obtained special funding approval

for hospice and respite care.

Summary

The role of social work in pediatrics is vital to facilitate

communication between different inter-professional and

intraprofessional teams.

Interprofessional teams can potentially play an important

role in the policy analysis and policy-making process to

address issues affecting children and their families.

.

Summary

Policies for children with genetic-metabolic

conditions such as Pompe disease and

Mucopolysaccharidosis are generally based on

what is known about more common illnesses.

Inter-professional teams have the capacity to

make recommendations to social policies and

procedures addressed to our patient populations

in collaboration with the families we work with.

Acknowledgements

I would like to thank the inter-professional team:

Yih-Jy Liu MN, RN NP

Megan Saunders and Margaret Mackrell (Nurses)

Dr. Julian Raiman and Stacy Hewson GC

Social workers from Peel Children’s Aid Society

and

Barbara Muskat PhD, RSW, Barbara Neilson MSW

Heather O’Driscoll MSW and David Lubert MSW

Denese Henry , Senior Secretary