A mother helps support her son to stand whilst in his bedroom.
Nasri Ngumi and his mother Joyce demonstrate exercises at their home in Dar es Salaam, Tanzania

The importance of family-centred care

To start the week, we will think more about the role of parents and caregivers, and think about why it is necessary to consider their healthcare needs, as well as those of a child.

In Step 2.20 in Week 2, we discussed the importance of trust and equal partnership when making decisions about the healthcare of children with developmental disabilities. In this step, we will take this principle further, by considering the importance of family-centred care.

What is family-centred care?

When caring for children with developmental disabilities, it is important not to regard the child as an individual patient - we should also be considering the needs of the wider family. Children with developmental disabilities are at the centre of a wider family on whom they are dependent. Family is a child’s primary support and a constant element in their life. A child may see a healthcare professional once per week for one hour, but will spend the rest of their time with family members. This means that family members are the expert in the child, and they play a huge role in ensuring the child’s health and wellbeing. Family-centred care recognises that family members have their own needs that enable them to give this support and provide a safe and nurturing environment.

Family-centred care ensures that healthcare is planned around the whole family, in which all family members are recognised as care recipients and active decision-makers. At the core of family-centred care are the principles of trust and equal partnership between the healthcare provider and the family, which we discussed last week.

A boy without retina is sitting on the lap of a woman in school. She is helping him read a braille tablet Avinash (6) at a mainstream school in India - he is being taught Braille. © CBM/argum/Einberger

Family-centred care occurs when:

  1. Healthcare professionals recognise that all families are unique, and understand their personal circumstance, expertise, values, traditions and perspectives.
  2. Families share knowledge of their child and are active in the decision-making process, helping identify goals for the child.
  3. Interventions consider who in the family is best able to support a child.
  4. Family members are a constant unit in the care team.
  5. Families are free to ask questions and receive information and guidance to help them support their child.
  6. Referrals to additional support services are available if needed, including parent support groups.
  7. Healthcare professionals assess if family members need physical or emotional support in order to support their child, as caring for a child with developmental disabilities can be physical and emotionally exhausting.

A girl is sitting on her mother's lap whilst they both laugh Azucena Tzina Sicay (6) with her mother in Guatemala. © CBM/argum/Einberger

Benefits of family-centred care

Research has highlighted the following benefits of family-centred care:

  • Improved healthcare decision-making, based on better information and collaboration between professionals and families.
  • Improved ‘buy-in’ and follow-through when care plan is developed with the family.
  • Greater parent confidence, parental satisfaction, parent personal control and family empowerment.
  • Increased competence of children and adolescents to better manage their own healthcare independently.
  • Opportunities for healthcare professionals to learn from families about the actual workings of a healthcare services and system.
  • More efficient and effective use of a professional’s time and healthcare resources.
  • Improved communication between healthcare professionals.

A teenager is playing chess with his father. Both are sitting on the table as they play Kim (16) playing chess at his home in Negros, Philippines. © CBM

Tips for achieving family-centred care

Leadership: Leadership personnel within healthcare providers need to be committed to family-centred care, by understanding what it means, setting targets (and holding staff accountable) and providing adequate resources and support.

Family engagement: Family-centred care is a collaborative partnership and needs to be developed with active participation and decision-making from families.

Training: To ensure that all staff and healthcare professionals have a shared understanding of family-centred care, staff will require education and training, support and tools. To improve the level of collaboration between different healthcare services, this training could be delivered to a number of different providers in one geographic area.

Monitoring: In order to maintain family-centred care and achieve organisational goals, it is important to measure, monitor and report. Ongoing evaluation of family-centred care should include feedback from parents and family members, through interviews, surveys and focus groups.

Discussion

In the comments section below, we would love for you to discuss the importance of family-centred care and your experiences with this approach.

  • What are some other benefits to family-centred care?
  • Is family-centred care present in your setting?
  • If you are a healthcare professional, do you already practice this yourself? Or can you think of a good way to start?
  • What positives have you seen come from family-centred care?

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This article is from the free online course:

Integrated Healthcare for Children with Developmental Disabilities

London School of Hygiene & Tropical Medicine