2. High stakes decision making that they might not feel equipped to make.
3. Trying to deal with life outside their sick child and the hospital admission.
She felt strongly that good support for parents was great help and advocated the use of volunteers coming in to spend time with families and to sit with the children so the parents felt they could leave the bedside for short periods. She had also found that parents found the website caringbridge very useful, rather than constantly fielding texts and calls from concerned friends/family, they can have a private page, add who they want to see it and post updates whenever they want that everyone can see.
She also recommended the excellent book The Invisible String for parents to read to siblings who are struggling with the absence of the sick child or in case of bereavement, all about the invisible string which is attached between everyone who loves each other, whether they are near or far.
Her other big point was to always have a picture of the child when they are well somewhere obvious around the child’s bedside so every medical professional walking into the bed space can see it. This sends a positive message to the parents and increases the level of investment the staff have in that child.
Family Learning Centre
The Family Learning Centre was one of the most fantastic resources I have seen. It is centre that provides resources and family support and the staff include two wonderful ladies who both have had children who have spent a lot of time in hospital and now provide peer support for the families who come in. The lady I spoke to initially started attending support services when her son was 5 as a way to heal from the trauma of having an unwell son, gradually she started to help set programs and now works there and her son is now 18! She provides peer support, helping families feel like they are not alone and that they can have someone to listen to them and talk through situations. She also helps prepare families for meetings with Drs and provides them with notebooks to write down their questions and concerns. She and the team also provide practical support as well, and have resources to hand for most situations, whether it is a family that needs help with food stamps, immigration paperwork or resources about their child’s new diagnosis. It is used by both families with inpatients and people from the community as a safe space to come and get help.
The Centre itself is also used for a number of things, they have a lot of parent and sibling support groups, include a weekly karate lesson for siblings and ex patients which has a strong focus on anger management. They have a monthly parents meeting for parents to come in to discuss improvements that could be made in the hospital. They have resource fairs and also have do big celebrations for festivals that everyone is invited to, to try and provide normalcy for families stuck in hospital for a long time. On a day to day basis, it is also a safe and peaceful place for families to come and take time out, they provide drinks and lunch and have computers etc for use and play facilities for siblings. Whilst logistically, it would not be an easy thing for us to provide at QMC, it is a lovely place led by some very inspirational women!
Other staff members I met:
The patient care coordinator really advocated the importance of the big team effort required to help patients and families regain some normalcy and also in trying to keep nurses with the same attention where possible for continuity. They always work with the aim of encouraging parents to be involved as early as possible and all reporting (ward round) is done in the room so parents can be involved. They also have these plan of care boards that I found very interesting, so every day the plan can be written on it so the parents know what is going on and when and keep track of the patient progress. They can also write their own questions on it. This has found to be a great tool when utilised although I’m told not everyone remembers to use it!
Social Workers: The unit has its own social worker who acts as a source of support for the families whilst in the PCCU, helping normalise the experience for the families and aiding communication with the families and the medical team. They have recently started facilitating weekly family meetings for families who have been in the PCCU for over one week so everyone can keep track of the progress and the plan. They also act as discharge planners and prepare the families to move either to another ward or to a rehab centre, providing both practical and psycho social support. They really advocated the importance of good communication, both including parents in conversations and ensuring families witness good communication between staff members.
Music Therapist: CHAM has a full time music therapist who visits the patients and supports them depending on their care needs with music. With the awake and more active patients, he works with them to express emotions, master control over their situation and improve pain tolerance. With the sicker ones who may be heavily sedated he uses music to minimise sensory stimulation and does environmental music therapy where he improvises music with the machinery sounds in the room to mask their harshness and provide a stable grounding source of brain stimulation for them.
Possibly my favourite meeting of the week was the wonderful integrative therapist as she decided the best way to explain what she did was to use her therapies on me! She does yoga, aromatherapy, sound therapy and reiki on the patients, which did wonders on me after a stressful morning subway commute! She aims to focus on the whole person, not the ailment and works on the basis that if you can distract the mind through relaxation, the body will relax and if the body is relaxed it will heal better. She helps with pain, exhaustion, nausea and anxiety and has found that pain scores frequently reduce significantly after a session. She also works with caregivers as well and finds that it can help a child feel less stressed if they perceive their caregiver is more relaxed. She also tries to develop a relationship with children prior to a big procedure then she can come in post procedure when they are in PICU and work with them through the recovery.
Funny to think I only spent 3 days in Montefiore, I had so much packed in and am I so impressed with comprehensive support programs that they have in place for their patients and families! It also had the best decorated X Ray room I have ever seen!