Empowering parents/carers to speak up

Parents of sick children want your help, and they believe that the advice given in that moment is the correct one. There are occasions when we don’t always get it right. Parents have uncertainties and anxieties, and fear criticism from health professionals when seeking medical help for an acutely ill child. A collaborative approach from health professional and parents is needed, and requires empowered parents.

Empowering parents is about giving parents the skills, resources and ability to ask themselves ‘What does my child need from me right now’ and then having the right environment to allow them to do that. Below are presentations, publications and information. These resources, research and parent leaflets that can be used in your environment to encourage parents to be more empowered in your department.

These two short films have been created for parents, and for staff supporting and empowering parents and families, with the message that the life-time of knowledge parents have of their children may enable them to spot the signs of deterioration in their child first and aims to encourage parents and families to speak up – “If you see something, say something”

Re-ACT talks

Carer Escalation Policy and parent/carer information

Expert Parent Programme

The Council for Disabled Children has developed an innovative training programme for parents of disabled children. Developed with funding support from Department of Health, the Expert Parent Programme draws on current evidence of the positive impact of parent led training and empowers parents of disabled children and young people to become more confident and resilient when engaging with health services.

Listening to You

Developed by Birmingham Children’s Hospital: a guide, poster and planning template to help parents discuss worries or concerns about their child with Health Professionals.

Publications

Jones, C., S. Neill, M. Lakhanpaul, D. Roland, H. Singlehurst-Mooney and M. Thompson (2013). “The safety netting behaviour of first contact clinicians: a qualitative study.” BMC Family Practice 14(1): 140 – Acute illness is common in childhood, and it is difficult for healthcare professionals to distinguish seriously ill children from the vast majority with minor or self-limiting illnesses. Safety netting provides parents with advice on when and where to return if their child deteriorates, and it is widely recommended that parents of acutely sick young children should be given safety netting advice. Yet little is known about how and when this is given. We aimed to understand what safety netting advice first contact clinicians give parents of acutely sick young children, how, when, and why.

Jones, C. H. D., S. Neill, M. Lakhanpaul, D. Roland, H. Singlehurst-Mooney and M. Thompson (2014). “Information needs of parents for acute childhood illness: determining ‘what, how, where and when’ of safety netting using a qualitative exploration with parents and clinicians.” BMJ Open 4(1) – Qualitative research – To explore the views of parents and clinicians regarding the optimal content, format and delivery of safety netting information for acute childhood illness.

Neill, S. J., S. Cowley and C. Williams (2013). “The role of felt or enacted criticism in understanding parent’s help seeking in acute childhood illness at home: A grounded theory study.” International Journal of Nursing Studies 50(6): 757–767 – Parents with young children often worry about whether or not to seek medical help for a sick child. Previous research identified parents’ anxieties surrounding help seeking from health services but did not explore or explain the underlying psychosocial processes taking place in families at these times.

Neill, S. J., C. H. Jones, M. Lakhanpaul, D. T. Roland and M. J. Thompson (2014). “Parents’ help-seeking behaviours during acute childhood illness at home: A contribution to explanatory theory.” Journal of Child Health Care Online first October 8, 2014 – Uncertainty and anxiety surround parents’ decisions to seek medical help for an acutely ill child. Consultation rates for children are rising, yet little is known about factors that influence parents’ help-seeking behaviours. We used focus groups and interviews to examine how 27 parents of children under five years, from a range of socioeconomic groups in the East Midlands of England, use information to make decisions during acute childhood illness at home. This article reports findings elucidating factors that influence help-seeking behaviours. Parents reported that decision-making during acute childhood illness was influenced by a range of personal, social and health service factors. Principal among these was parents’ concern to do the right thing for their child. Their ability to assess the severity of the illness was influenced by knowledge and experience of childhood illness. When parents were unable to access their general practitioner (GP), feared criticism from or had lost trust in their GP, some parents reported using services elsewhere such as Accident and Emergency. These findings contribute to explanatory theory concerning parents’ help-seeking behaviours. Professional and political solutions have not reduced demand; therefore, collaborative approaches involving the public and professionals.

Neill, S. J., C. H. D. Jones, M. Lakhanpaul, D. T. Roland, M. J. Thompson and the ASK SNIFF research team (2014). “Parent’s information seeking in acute childhood illness: what helps and what hinders decision making?” Health Expectations: Online first October 20, 2014 – Acute illness is a universal experience in early childhood. Parents find it difficult to determine whether or not their child requires medical care and seek information to inform their decision making. Little is known about parents’ information seeking behaviour and what helps or hinders their decision making.

Roland, D., C. Jones, S. Neill, M. Thompson and M. Lakhanpaul (2014). “Safety netting in healthcare settings: what it means, and for whom?” Archives of disease in childhood – Education & practice edition 99(2): 48-5 – Everyday thousands of children are presented to health care practitioners by concerned parents with the vast majority being simple self-limiting illness. However serious bacterial illness, chronic inflammatory conditions and mental health problems are repeatedly missed with significant morbidity, mortality, financial and social implications. A conceptual framework detailing the mechanism of effective Safety Netting has yet to be described however and there is increasing evidence parents want guidance on when to seek medical advice (a key part of safety netting) prior to initial consultation. This article explores current understanding of safety netting in relation to child health and argues there is a need to develop a more standardised approach.