Student NT editor Desiree Deighton reflects on the positive impact health professionals can have on patients and families.
The mother and grandmother hugged us with tears in their eyes and said “thank you, we will never forget you”.
Their gratitude was not because we had successfully saved her new baby’s life – we had not – but because we had tried everything we could.
According to the family’s wishes, we dressed her daughter, printed footprints and took photographs, then placed her in her mother’s arms.
We detached the wires and tape from her little body, before removing the endotracheal tube that connected her to the ventilator, so that for the first time her mum could properly see her daughter’s beautiful face before she died.
Every nurse is taught that care is patient-centred, however the encompassing of a whole family – whether this be the typical structure of two biological parents or a loving mish-mash of role models – is at the core of all neonatal and paediatric nursing.
A positive, trusting relationship between nurse and parents has shown to increase parental compliance with their child’s medication, treatment and health advice, which directly improves child health outcomes.
“In hospital settings, the medical team rely heavily upon the medical history and changes to the child’s normal condition, reported by the parents upon admission”
The challenges to this vary between families, demographic population and type of clinical settings.
In hospital settings, the medical team rely heavily upon the medical history and changes to the child’s normal condition, reported by the parents upon admission.
Parents are experts in their own children and can recognise the signs of deterioration or unusual behaviour often before us as health professionals.
In particular, infants and children with learning disabilities rely on adults knowing them back to front, as they may use non-traditional communication methods and display individualised, subtle symptoms of illness. The parent’s experience and concerns are regularly used as benchmarks in their child’s care, and should never be underestimated.
While having a strong partnership with parents reflects the nurse’s aim to provide family centred care, it can make recognising and responding to parents who are potentially a risk to their children a complex issue.
Through serious case reviews of child mortality, the communication barriers between hospital and community services can been identified as having a direct impact on the safeguarding vulnerable children.
In the case of Victoria Climbié, a great aunt and other adults presented her at various emergency departments with non-accidental injuries, always with a false explanation of how they were acquired. Despite social care involvement and recognition of abuse, there was a severe breakdown in communication between the multidisciplinary teams, which eventually led to her avoidable death.
Due to this, many trusts have implemented electronic patient record systems to reduce this, although unfortunately all trusts do not use the same programme, which means that protecting children through a multidisciplinary approach remains a challenge.
Similarly in the community, nurses and health visitors rely on parent’s honesty to negotiate care plans that promote infant health and development, and identify further support needs for the family.
Between visits, parents may be expected to work on specific, small targets to empower them, build their confidence and recognise their strengths.
Trust means that the parents and nurse work as a team with the cohesive goal of giving the children the best start in life. However, it is not uncommon for some parents to evade contact with health professionals by not answering the door for home visits or by changing phone numbers.
“Most families are forever grateful for the nursing care they receive”
This can be frustrating for the nursing team whose precious time is wasted, but more importantly, it means that children at risk can easily slide through the net when parents disengage. Public inquiries into child abuse cases often cite a lack of entry at home visits by health and social care professionals as a key contributory factor to failure, such as in the case of ‘Baby P’.
Despite the potential for any human being to cause harm, which can make it conflicting for nurses to trust parents and guardians so implicitly, it is important to remember that this is not the majority.
Most families are forever grateful for the nursing care they receive, with many raising awareness of the condition, funds for treatment or charities involved, and some even dedicating their will to causes that helped their children or grandchildren.
My current placement on a neonatal intensive care unit receives regular visits from ex-patients who come with their families, clutching supplies of babygros and tiny hats for the ward, and chocolates for the nursing team.
In the staff room on my last shift were two boxes of cupcakes from a mum and son who had baked them to celebrate his 10th birthday, because when he was born at 25 weeks gestation 10 years ago, he received ground-breaking neonatal care on our unit that meant he survived.
While the mother who lost her daughter promised she would never forget us, she may well as time goes by, but I will never forget her, her daughter, or the honour I felt to care for them.