Making a House a Home: Part One

When managing paediatric cases, our case managers are all too aware how the child and family can struggle at home; adapting to a new life, dealing with multiple professionals in the home, managing appointments and changes in family dynamics; all things that have the potential for a house to not feel like a home.

The role of a case manager is to not only focus on the child’s needs, their rehabilitation and building an effective Multidisciplinary Team, but in a way, it’s to make sure the family feels at home in their living environment, so that everyone in the house, including the child, can thrive and be a family.

We spoke to experienced children and young people’s case manager, Donna Newman, for a series of articles on making a house a home and how she ensures just that. Here, Donna discusses some of the common scenarios she faces as a case manager entering the home.

“The first thing I often notice is that there is one main carer which is usually the parent and that the house is not normally big enough for the client’s needs; some families share bedrooms and often have to sleep in the lounge or dining room to ensure their child has the space they need.

“Where siblings also share the home, I usually find they have retreated to their room and have become unusually quiet or subdued, their way of coping with the chaos that can often appear in the home, especially in the early days. In other cases, siblings can instead become very vocal and appear to be fighting for the attention of the parent and it is fairly common to see this behaviour during the Immediate Needs Assessment.

“This is particular common if the client has younger siblings where their behaviour is a language and a desperate attempt to make their needs heard. Alternatively, some siblings may have selected mutism and start to find it difficult to integrate at nursery or school. Their social communication needs can be delayed, as their parents may not have had the time they once had prior to the injury to spend with them; reading bedtime stories, taking them to the park or toddler groups.”

Whilst Donna’s primary focus is on the injured child, she also quietly observes these dynamics to ensure they’re addressed for the family, as an unharmonious home life can be a key barrier to rehabilitation.

“It’s not about complete harmony, there may be many factors at play that were in place prior to the injury or trauma, but family life certainly plays a huge role in rehabilitation. If families of children with catastrophic injuries and complex disabilities have not received any care support prior to the case manager visiting, you often find the parents can be observed as coping, but are exhausted at the same time.

“Parents of children with disabilities show a strength and composure like no other. However, we all have our limits and without the adequate support in place there will inevitably come a time where those parents reach ‘burn out’. It’s the case manager’s job to put supportive measures in place before that burnout happens.”

As well as behavioural and emotional challenges, Donna also says that the home environment is physically impacted.

“Many houses I visit when supporting children and young people following catastrophic injury can be really cluttered. Not only is there paperwork to keep on top of, additional equipment in the home and an increase in the number of people passing in and out, the family are also all consumed by the child and their needs and so everyday household chores is not their main priority. This buildup of clutter, is also a key factor in a house not feeling like home anymore.”

“Post-injury, families also find themselves having to navigate a whole host of procedures, policies and forms to fill in. Many families report a loss of income and this affects the family dynamic. Some families have never had to claim benefits in their life and are now introduced to a world of form filling-in to apply for benefits; just to make ends meet. This can lead to low self-worth and poor self-esteem as one parent often turns into the main caregiver while the other becomes the main breadwinner or in some cases, both parents give up work, if the child or young person requires 2:1 care.”

Donna also shared another signification change which impacts the family that she has sometimes observed; that of a relationship breakdown.

“Relationships can often break down as the balance of power and reliance within the family changes. Parents can sometimes become resentful of one another; especially if one parents gets to leave the house to go to work, which the other parent may see as ‘respite’. On the other hand the working parent may resent the other parent, who gets to stay at home and spend more time with the child.

“Whilst it is not a case manager’s role to intervene in parent relationships, a good case manager will spot the signs, will understand the impact on the child’s rehabilitation and will have brave conversations to help the family find a way forward; whatever the outcome.” This can often mean the case manager making a recommendation for family psychological therapy support."

There is no doubt that in the early days, following injury or before a case manager is involved, that the feeling of ‘being home’ can have a  negative impact on the family, as they may become overwhelmed with the changes that have occurred following the child’s injury., However, with the right case manager to work in partnership, a family can be supported to find their way and come together for the benefit of their future and the needs of their child.

In part two of our feature on making a house a home again, Donna shares some of the main things families struggle to deal with post-injury or trauma.