The Psychosocial Impact of Cleft on Grandparents

June 3, 2019

The Psychosocial Impact of Cleft Lip and/or Palate on Grandparents

Ella Guest¹, Bruna Costa¹, Gillian McCarthy², Claire Cunniffe² and Nicola Stock¹

¹Centre for Appearance Research, University of the West of England, Bristol

²Cleft Lip and Palate Association (CLAPA)

May 2019

Background

Research suggests that the birth of a child with a cleft lip and/or palate (CL/P) can have a potentially significant impact on parents. Although grandparents are becoming increasingly involved with caring for their grandchildren, little research has explored the impact of CL/P on the wider family.

The aim of this study was to explore the experiences and potential support needs of grandparents of children born with CL/P to inform future service provision.

Funding

This study was carried out as part of the CLAPA Regional Coordinators Project in Scotland.

Method

The researcher carried out telephone interviews with 12 grandparents living in Scotland. Participants were asked about their experiences of having a grandchild with CL/P and to what degree they felt their support needs were being met. The interviews were audio-recorded, transcribed, and analysed for common themes.

Research Findings

A number of key findings were identified:

The social and emotional experiences of grandparents are similar to parents:

• Grandparents experienced a variety of emotions in response to their grandchild’s diagnosis, including shock, sadness and concerns about the child’s future.
• Grandparents experienced additional concern for their grandchild’s parents.
• Some grandparents recalled negative social encounters, including members of the public staring or making unwanted comments.
• Grandparents also reported many positive experiences. These included an appreciation for the work of medical professionals, a feeling that the diagnosis had brought their family closer together, and being able to give advice to other families in a similar situation.

Grandparents described their role as providing practical and emotional support to the whole family:

• Some grandparents attended their grandchild’s hospital appointments.
• Grandparents often helped with household chores and looked after their other grandchildren while the child was undergoing treatment.
• Grandparents also provided emotional support to their grandchild’s parents.

Grandparents did not feel that they needed their own specific information or support, but would like to have better access to the information that is currently available for parents:

• Grandparents would like to have access to information about CL/P at the time of diagnosis.
• Grandparents also wanted to access practical information, such as how to use a specialist feeding bottle.
• Grandparents would like to be put in touch with other families affected by CL/P.

Conclusions

The findings showed that the experiences of grandparents are similar to the experiences of parents. However, their role can also include providing practical and emotional support to the family, particularly during treatment. It would therefore be beneficial for clinicians and charitable organisations to consider how their existing resources could be made more accessible to wider family members, including grandparents.

Dissemination

The findings from this study have been written into a report on the CLAPA website, and published in the Cleft Palate-Craniofacial Journal, the leading journal in the field. Information about these publications can be found below.

Acknowledgements

We would like to thank CLAPA for their help to recruit participants into this study, and the grandparents who took part in this study for sharing their experiences with us. Thanks also to the CLAPA Regional Coordinators Project Advisory Committee for their support and advice throughout the project.

Contact

For more information about this study, please contact Ella: [email protected]

References

Guest, E., Costa, B., McCarthy, G., Cunniffe, C., & Stock, N. M. (2018). CLAPA Regional Coordinators Project Scotland. Report: Experiences and support needs of grandparents of children born with cleft lip and/or palate.

Guest, E., Costa, B., McCarthy, G., Cunniffe, C., & Stock, N. M. (2019). Experiences and support needs of grandparents of children born with cleft lip and/or palate. Cleft Palate-Craniofacial Journal.