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The Value of Inter-professional Collaboration when Advocating for Medically–Fragile Children
and their Families
Patricia Martinez MA, MSW,RSW
E-mail:[email protected]
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