The Value of Inter-professional Collaboration when Advocating for Medically–Fragile Children and t...
Download
1 / 18

Patricia Martinez MA, MSW,RSW E-mail:[email protected] - PowerPoint PPT Presentation


  • 238 Views
  • Uploaded on

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.

loader
I am the owner, or an agent authorized to act on behalf of the owner, of the copyrighted work described.
capcha
Download Presentation

PowerPoint Slideshow about ' Patricia Martinez MA, MSW,RSW E-mail:[email protected]' - shaw


An Image/Link below is provided (as is) to download presentation

Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author.While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server.


- - - - - - - - - - - - - - - - - - - - - - - - - - E N D - - - - - - - - - - - - - - - - - - - - - - - - - -
Presentation Transcript

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 with life-threatening metabolic-genetic diseases

The needs of parents

The needs of children

Interdisciplinary services

Advanced

technology

Support to monitor their children

24 hours nursing care

Respirology OT and PT

Home vehicle modification

Funding


Male patient
Male Patient metabolic-genetic diseases


Rare inherited metabolic genetic diseases and interdisciplinary teams
Rare Inherited Metabolic Genetic Diseases and Interdisciplinary Teams

Primary Inter-professional Team(s)

Community and Government Agencies

Knowledge about government systems

Expertise in working with rare disease

Different medical and psychosocial professionals

Experience in common medical condition

Updated information

about policy changes that affect clients

Relationship with families from the beginning


Impact of inter professional collaboration
Impact of Inter-professional Collaboration Interdisciplinary Teams

Social Worker Metabolic Genetics

Community SW and case managers

Identify policy gaps and make policy recommendations in collaboration with the health care team

Facilitates communication among different teams within and outside the Hospital

Support community health providers and other professionals understanding the unique nature of genetic metabolic diseases

  • Patient advocacy: - Educational

  • counselling

  • Grieving

  • Bereavement

Updates community professionals about patients needs

Provide updates of family matters when patients are not hospitalized

Help explain family dynamics


Demographics
Demographics Interdisciplinary Teams

  • 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
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
An Inter-professional approach was vital in this case systems

  • 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
Promoting the best interest of the child systems

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
The Social Construction of Motherhood systems

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

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.


Interdisciplinary approach and changes to social policy
Interdisciplinary approach and changes to social policy systems

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
Changes in established procedures systems

Advocated for the right of the young patient to die with dignity and obtained special funding approval for hospice and respite care.


Summary
Summary systems

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.

.


Summary1
Summary systems

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
Acknowledgements systems

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


ad