Making a House a Home: Part Two
In part two of our ‘Making a House a Home’ stories, we look at some of the main things families struggle with in the home following the catastrophic injury of a child or young person.
Whether it be equipment in the home, appointments, not enough hours in the day or psychological challenges, a great case manager can help to stabilise the family; allowing them to come together again. Donna Newman, shares her views on what she finds as the key struggles families have to deal with in the home.
“The storage of equipment, accepting advice about the child’s needs and the increase in care professionals in the home can make what was once a home filled with fun and laughter, feel like a workplace for many families. Parents feel like they will be judged if they appear not to be coping, but this isn’t the case.
“Many have difficulty accepting that as a child grows they require moving and handling equipment such as hoists installed in their home, which can feel intrusive. Some also find it difficult to accept that employed care teams are not allowed to lift and carry children once it becomes unsafe to do so and they often challenge carers and expect them to hold their child, as a parent should; the absence of a simple and nurturing cuddle or a carry, can feel clinical and cold.
“This battle between emotion and practical needs can cause conflict between care agencies and parents. Carers are required to work in line with CQC standards of care and NICE guidelines and some parents don’t understand this. Some challenge record keeping and checking of medications as they have an intense need for their home not to feel like hospital. On the other hand the care team have a duty to safeguard the child and themselves which inevitably involves risk assessments and following policy and procedures.
“Sometimes the frustration is directed at the case manager and parents often take some time to accept support if rapport and trust hasn’t been established. It’s important that any case manager working with children and young people understands this is as a result of not feeling in control and a great case manager will see the big picture and work in partnership with the parents to prevent resentment.”
Family time is precious and the sense of loss of this time together can also be a struggle. Donna says:
“Parents struggle to divide their time equally between all children as the child with injuries and disabilities take priority. The child will also have many medical and therapy appointments meaning the parents may miss things with the other children such as school sports day, achievement assemblies or picking them up from school.”
Donna says that psychological support is usually a priority when working with families. Many are grieving for a life ‘lost’ and the expectations they had even before the child was born. This grief can often be coupled with Post-Traumatic Stress Disorder, particularly if the family were also witness to the injury or involved themselves.
“Parents and siblings often require psychological support to help them with stress, anxiety, anger and grief. There can be levels of denial about the child’s prognosis which makes it incredibly difficult to accept therapists, equipment and care teams.
“It can take many years before a family learns to accept the child’s diagnosis and prognosis, but it can happen with the right support in place. It’s important for this to be introduced at the right time, when they are ready to accept the help and case managers can work with vital behaviour specialists like the team we have in place at Bush & Co to understand when support will be most beneficial.”
In part three of our feature on making a house a home again, Donna explains the role of a case manager and the typical steps she takes when working with children and young people following catastrophic injury and trauma.