CHILD- AND FAMILY-CENTRED CARE

CHILD- AND FAMILY-CENTRED CARE

CHILD- AND FAMILY-CENTRED CARE

“Family is not an important thing. It is everything”-Michael J. Fox. This is hard to disagree with. Since a child is surrounded by his/her family and is dependent on them, it is critical for professionals to work with a given child’s family to deliver excellent care and ensure outstanding outcomes.

What is Child and Family-Centred Care?

Child and-Family-Centred Care assures the health and well-being of children and their families through a family-professional partnership that is based on dignity and respect for each other. Such a partnership honours the strengths, cultures, traditions, and expertise that everyone brings to this relationship.

Family-centred care improves the child’s and family’s experience with health care. Such kind of care contributes to better outcomes for children with neurodevelopmental conditions, by reducing stress for the child and family, by improving communication, and by reducing conflict or friction. During the latter half of the twentieth century, there has been a growing understanding of the family’s role in a child’s life. It is recognised that each family is unique and family members are the experts and best advocate of a child’s needs.

When did this concept emerge?

The Maternal and Child Health Bureau (MCHB), Division of Services for Children with Special Health Needs of the US Government were one of the first ones to articulate the concepts of “family-centred care.” A definition and set of principles of family-centred care were created in 1995 by a team of family leaders and professionals under the guidance of MCHB. These principles are important in measuring whether health care is high quality.

Family-centred care puts children and their families at the heart of care provisions and is a significant shift from the traditional “biomedical model of care” which focussed on ‘biological’ rather than ‘social and emotional aspects’ to deal with the neurodevelopmental conditions.

Why is child- and family-centred care important?

Child and Family-Centred care is crucial because:

  • This empowers family to become the ‘experts’ for their child.
  • Such care helps manage a child’s condition on a day-to-day basis.
  • Helps the family meet child’s developmental needs
  • It helps meet sibling’s developmental needs.
  • Such care makes the family feel comfortable in sharing ongoing stress and periodic crises.
  • It assists family members in managing their feelings.
  • This educates and informs everyone concerned about the child’s condition.
  • Helps establish a support system

 

How does child- and family-centred care look like?

The key principles of child-and-family-centred care are as follows:

  • Practitioners listen to family’s perspectives and choices with dignity and respect
  • There is a recognition that family occupies a central and constant position in a child’s life.
  • There is an acknowledgment that family members are the experts about a child’s condition and that they are the best advocates of their child’s needs.
  • Professionals collaborate with a child’s family at all opportunities, to optimize care.
  • There is effective communication and negotiation around care.
  • The sharing of information is complete, accurate and unbiased to help family in their decision making.
  • It recognises and builds on the strengths of each child and family, even in difficult and challenging situations.
  • Such care encompasses respect for family’s values, beliefs, cultures, ethnicity, and social diversity.
  • Such care fits various support services around the child’s and family’s needs rather than to suit care provider’s convenience.
  • This encourages networking and family-to-family support to facilitate learning from each other’s experience.

 

What are the advantages of child-centred and family-focused care?

  • There is greater patient, family, and professional satisfaction
  • Consequent to all the above, there is improved patient and family outcomes
  • There is decreased healthcare costs, less stress, less duplication, and reduced friction.
  • Child-and-Family-Centred care ensures more effective use of healthcare resources

 

An example of child-and family-centred care?

Megan is a 3-year-old girl seen in clinic for developmental delay. On assessment it became clear that she has autism with general delay in cognitive development. Understandably, her parents are distraught with this news and would like to know about the best way forward.

They would also like to know:

  • What can they do as a family to optimize his development?
  • What can they tell and how to tell their family and friends?
  • How can professionals help them?

The family-centred approach would involve:

  • Discussion with parents (and with extended family if needed) reflecting respect, involvement, and collaboration.
  • Explaining autism with details on how it is affecting Megan rather than discussing about a ‘typical case of autism.’
  • Highlighting Megan’s unique strengths and difficulties.
  • Providing the best available information (autistic spectrum disorder (ASD) support groups, benefits, etc.) for the family to go through at their own pace.
  • Honest opinion about prognosis, leaving room for hope in view of Megan’s early age.
  • Signposting to appropriate services such as speech and language therapist (SLT), occupational therapist (OT), Early Years special educational needs inclusion team (EYSENIT), and social services with clear information about who can offer what.
  • Discussions followed by written report to the family containing the details of the assessment and plan.
  • Clear management plan with necessary strategies, signposting to obtaining benefits and sources of support
  • Offer of a follow-up appointment when needed or requested

 

In conclusion, I hope I have convinced you of the multitude of benefits that family-centred care offers and the positive impact it can have on children’s’ lives. As part of my own practice, I have been delivering family centred care to the maximum degree possible to arm every child and family I serve, with the best possible tools to face future.

 

References:

  1. Committee on Quality of Health Care in America, Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington, D.C.: National Academies Press, 2001.
  2. Neurodisability and Community Child Health (Oxford Specialist Handbooks in Paediatrics) Paperback – Published on 17 May 2022. Edited by Srinivas Gada. Published by Oxford University Press. 736 Pages. ISBN-13 978-0198851912.
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