Supporting parents of children with complex care needs

For parents of children with disabilities and complex care needs, life can be extremely challenging. Here, Michelle Marshall, case manager at ILS Case Management, discusses options around care and support, including home care and hospice respite.

In a previous role, I worked for over ten years at my local children’s hospice as a children’s palliative care nurse. A large proportion of my work was organising, delivering and managing the short break care which happened either at the hospice or in the community depending on the family and their preference.

Respite for parents whose children have complex care needs can mean many different things. For some it allows parents to go back to work, and others use the time to complete household chores, catch up on sleep or spend time with their other children doing activities that they would not normally be able to do as a whole family.

Deciding to have respite care for a complex need’s child is a decision not often taken easily by parents. I have met many families who have put off having respite care for many years for a variety of reasons they may feeling that they are failing in their parental role and feel that they should be the person that their child relies on, they may not trust others to look after their child or be concerned that their child will not know the care givers.

So, what can help parents to make this tricky decision? Sometimes it can be hearing about the experience of other parents whose children have complex care needs and have care in place already. Speaking to someone who is going through the process and can tell a parent how they find it, can be extremely powerful and influential. Fast forward through those years without respite to the time when they begin having respite and parents will often reflect and think ‘why didn’t we do this earlier?’.

Having the flexibility and choice of where to have the respite is usually the next big decision to be made by the family. All families have diverse needs, preferences and circumstances which will influence their decision and sometimes the reality of that decision can be quite different compared to initial thoughts, once the care is in place.

I’ll use an example of a family I have previously worked with. The mother was due to have a care package introduced at home to enable her to have a break from her caring role and she was excited about this starting.

A few months after the care package started, we discussed how this was going, and although there were no problems or concerns with the running of the package and the care being delivered to her son, the mother was struggling. Having carers in her own home for long period of time meant that she was finding it difficult to relax and distance herself from her son and the carers. In addition, her son’s bedroom was small, meaning that a lot of the care was being delivered in the main family living area. She felt she could not relax on her own home and was continuously making sure that the house was always tidy. She found that she was always doing things such as getting meals and medicines ready, even though she was not asked to by the carers or obliged too. These factors meant that she could not switch off and was not benefitting from the service.

This home care package was reviewed and amended to provide a mixture of community care and care away from the home which met this family’s needs.

Community care does suit many families. One family I have worked with decided that they wanted home care based on a number of reasons. The first and main one being the reduction in risk of their son picking up an infection. Secondly for convenience, his morning routine of medicines, feeds and physiotherapy would have meant it would have been a rush to get everything done and travel to the hospice. Add to this the very time-consuming activities of packing clothes, medicines, and equipment for their child to access respite outside the family home, especially for short respite, having someone come to the home was more practical for them and less time consuming.

Travel distance is also sometimes a factor to consider, a long journey to pick up and drop off can significantly reduce the ability of parents to make the best use of the time their child is receiving care outside of the family.

This issues of exactly who would be delivering the care can also be a factor to consider. When delivering home care, as a hospice we would generally send out the same members of staff. Some parents preferred this, as they felt that these members of staff knew their child so well, whereas in the hospice the staff could change each time. By having the same staff in the home, parents felt more at ease leaving their child and also those members of staff alone in their house.

As well as observing and providing successful respite care in the child’s home, I have also been part of providing short break care at the hospice. The first time a parent would bring their child for either day care or overnight stay, many would also stay with them as well but take more of a back seat to the hands on care of their child, giving staff the opportunity to learn about their child whilst having the parent nearby in case they are needed.

Some may only do this the first time while others would do this every time. It is very much an option that t given to all families to accommodate everyone’s needs. Although still in the building it means parents can still have time away to rest but are also close by so that if they wished they could come down to the main care area to see their child- for some parents this can help with their anxiety of having care from others rather than themselves.

One child I specifically remember came into the hospice on a weekend night every few months and his parents would also come. The mother had high anxiety of leaving her son with others, however felt reassured that she could stay as well and was happy for us to take charge and lead his care, as she knew that we would come and get either her or the child’s father at any time during the stay if we had any questions and concerns. They had their own separate bedroom with an adjoining bathroom which led into their son’s bedroom. The parents still liked to be part of the bedtime routine but were then able to step back and have dinner and the evening by themselves.

Due to the complex needs of the children and young people we looked after, parents generally aren’t able to leave their child with a family member or friend. Many families also chose to have care in the hospice as it prepared them and their child for the future of possibly needing to use the hospice for end of life and after life care. It enables them to all become familiar with the staff and the hospice surroundings, especially for those with siblings.

For many parents, having care away from the home means getting what they would call ‘a full break’. To leave their child and walk away for maybe even six hours can be hard, for many it can be a huge sigh of relief handing over the care and responsibility to someone else.

As well as benefitting the parents, there are also many benefits for the children and young people of having care away from home. Socialising with friends can be exceedingly difficult for children with brain injuries and complex needs, and as their parents are main care givers they would have to come with their child on any social outing. Like any child or young person, children with additional needs don’t always want to have their parents around all the time, especially when being with their friends. This is where the hospice could step in to help meet the children social needs as well medical needs.

Many of the children who came to the hospice became friends either because they go to the same school together or through meeting at the family events which the hospice organises. Parents wanted to allow their children to have the same social experiences and opportunities as children of the same age who have no medical needs. Following discussions with the families we would often plan for friends to have overnight stays together. For example, we would hold pamper evenings, movie nights and gaming evenings for friends and then they would both sleep over. Seeing the happiness in their faces when with their friends and giving them these social opportunities was one of the many highlights of my role.

Another key memory of mine was the celebration of a young person’s 18th birthday. He had wanted to go clubbing for some time and was eagerly awaiting his 18th birthday to do this, but again with his parents being main carers he did not want to do this with them. He did have contact with another boy of the same age through the hospice. We were able to pre-plan with the two boys for a night out into town where they visited clubs and bars and then went back to the hospice for an overnight stay, all of which was supervised by hospice staff. For a lot of the children and young people these are key events and memories in their life.

From my experience of both community and hospice care, and from working closely with the families, there really is no right or wrong decision. All families will have varying needs and circumstances which will affect the decision they make on whether they have home care or care in a respite setting. What I feel is most important is giving families that opportunity to have a choice and consider their individual options.

Author: ILS Case Manager, Michelle Marshall

This article was also published on www.nrtimes.co.uk on 1st September 2023