North Thames Paediatric Haematology and Oncology Parent and Patient Satisfaction Survey 2013: Network wide report thematic analysis

Transcription

1 North Thames Paediatric Haematology and Oncology Parent and Patient Satisfaction Survey 2013: Network wide report thematic analysis Conducted by: Author: Patient Experience Subgroup of the North Thames Children s Cancer Network Coordinating Group Report written by Karen Bravery, Project Nurse, Shared Care Improvement Project, ICI-LM, Great Ormond Street Hospital Reviewed by Dr Zoe Berger and CCNCG Parent Council Date: 21 February 2014, reviewed March 2014 Version: v4.0 Contents: 1. Background Methods Results... 2 Theme: Staff... 3 Theme : Environment and Facilities... 4 Theme: Emotional wellbeing of families... 6 Theme: Communication... 8 Theme: Training and education... 8 More practical help and support

2 1. Background As part of the objectives set by the North Thames Children s Cancer Network Coordinating Group (NTCCNCG), a network wide survey looking at parent s satisfaction was designed. This is the first network wide survey and asked about parent s satisfaction with their principle treatment centre (PTC), their shared care hospital (known as a Paediatric Oncology Shared Care Unit or POSCU) and community nursing team. 2. Methods The survey was reviewed and tested for usability by members of the NTCCNCG parent council. The survey was distributed by the PTC (Great Ormond Street Hospital or University College London Hospital) and by the North Thames Paediatric Oncology Shared Care Unit s (POSCU s) over a 4 week period, from 16/09/13 until 11/10/13. The survey remained open for postal returns until 15/011/13. Families were invited to take part in the survey and complete a questionnaire when they attended the PTC as an inpatient, outpatient or day case. Some POSCU s also offered families a questionnaire to complete when they attended their POSCU. The survey was completed by families using a paper version or on-line via the London Cancer Website. Completed paper versions of the survey were manually entered into the on line version (survey monkey questionnaire format) to facilitate the sorting and analysis of data. Data were analysed quantitatively e.g. response count, response per cent and qualitatively by thematic analysis of free text comments made by families. Data analysis for the themes was undertaken by KB, ZB, and CG (parent council). 3. Results Overall, the results from the survey indicate very high levels of satisfaction with the care received from the PTC (97% either very satisfied or satisfied) POSCU (83% either very satisfied or satisfied) and community nursing teams (96% either very satisfied or satisfied)*. This report presents the qualitative analysis of the free text comments from parents completing the survey for questions B10, C8, D12, E10, F5, G7, H9, I2-I6 and J2-J6. *Refer to the separate report Paediatric Haematology and Oncology Parent and Patient Satisfaction Survey 2013: Network wide report for more information. Themes There were a number of overarching themes that emerged from the free text comments. These were then sub divided further for more information. Tables below present the themes and examples are provided through quotes. Comments relating to staff s professionalism and care were positive, with families giving examples of their high levels of satisfaction and positive experience. There were a number of 2

3 other areas, relating to the environment, facilities, communication, teaching and training and the consideration of the emotional wellbeing of families that identified areas for improvement. These are illustrated in the tables below. The themes and subthemes: 1. Staff: Professionalism and quality of care 2. Environment / Facilities: Food Waiting times POSCU wards Facilities on the ward 3. Emotional wellbeing of families Access to Psychosocial care Holistic needs / Holistic Care Play 4. Communication Between POSCU and PTC With families 5. Training and Education More training and education needed at the POSCU Staff were praised by families for their professionalism, expertise and caring nature: Theme: Staff Sub theme Professionalism and quality of care Feedback from families about the staff in the PTC, POSCU and Children s Community Nurse s (CCN s) was generally very positive. This was echoed in all departments (in-patients, out patients and day care) and across the network. Overall staff across the network were described as being supportive, helpful, friendly, caring and professional. At the PTC staff were viewed as experts and providing a high standard of care, that allowed families to feel safe and The oncology nurses at (hospital) are fantastic. I feel generally like staff at (hospital) know my child & us much more, so we have formed closer relationships. I cannot praise the 2 CNS s enough - we're lucky to have them on our team. My daughter likes both hospitals. She calls (PTC) the big hospital and (POSCU) the 'small' hospital. She does not consider hospital a scary place this is because all the staff are both welcoming and caring. They have been marvellous and always very pleased to see us as we are them. It is always the same team which is good for consistency and understanding. My 3

4 important. At the POSCU the best things were the CNS role and the individual team at the POSCU Families valued the team at the POSCU, seeing the same people each time, the hospital being closer to home and efficiency in organising blood tests. The CCN s were viewed as being organised and efficient in arranging care for families, able to fit around the family schedule, and some could work at weekends. Some families said the CCN s were easy to contact and able to provide consistent 1:1 support for families. son's consultant is marvellous as is the oncology specialist nurse and staff. 1. How well our consultant explained everything and ensured we were happy. 2. How at ease our specialist nurse made us feel. I knew I could contact her about any concerns. 3. The overall care and support from the whole team to my son. It was a radiologist here that initially diagnosed / noticed on x-ray- so very grateful. Beautiful caring team who have helped whenever needed. I am so pleased with the nursing team. They are a lovely group, always professional and great with nervous unsettled children and worried upset parents alike. Overall I am satisfied with the treatment and care from both hospitals. It is a parent s worst nightmare to have a child with a life threatening illness with no 100% guarantees of cure. Therefore your hospital has to be 'right'. Not a home from home but as comfortable as it can be... The following themes identify areas for development: Theme : Environment and Facilities Subtheme The food The food at the PTC and POSCU was seen as an area for improvement by families. Food gave rise to the most comments from families. At the PTC it was described as terrible, needing huge improvement and not healthy. Families felt that their children didn t want to eat the food. There were other comments about limited choices, inadequate menu and the high cost of food was raised as an issue. At the POSCU there were comments of no, or limited access to tea coffee for parents, no children s menu, and food running out with some families taking in their own food for their child. My son does not like the food. He says that it tastes horrible! Not easy for breast feeding mother to get food. A food cart would be good for parents to buy food if stuck on the ward. Generally, the (hospital) is excellent. The food however is dreadful! More considered nutrition if possible. 4

5 Waiting times Comments from parents about waiting at the PTC in the outpatient clinic were related to waiting for procedures, appointments, treatments, Doctors, medicines and tests e.g. MRI. This experience of waiting was made worse by a combination of factors: the child being nil by mouth or taking steroids; the cramped physical environment; lack of information about why families were waiting; lack of play facilities, added to the challenge of the waiting experience for families There were fewer references to waiting in parent s comments about POSCU s. Waiting to be seen by a doctor, to be seen on the ward and waiting for blood transfusions were commented on. POSCU wards There were comments from some families about the POSCU ward environment. Some felt that rooms need refurbishing, and that the beds for parents could be replaced and more comfortable. Some families disliked their child being isolated in a single room when the child was an in-patient (at the POSCU). There were some comments about the general busyness of staff and not always being able to help. Several families felt that more staff were needed at their POSCU. When a child has a GA it is important to manage food and water. Delays in this area can have a huge impact on the child and are unfair if incorrectly managed. When arriving, an indication of how long the wait is to set expectations A tighter adherence to appointment times. A bigger, better equipped waiting room for children and parents and better coffee in the shop. We are often kept waiting for a long time, very difficult if child is 'nil by mouth', on steroids, or both! Having a child with cancer is bad enough being subjected to intolerable conditions and waiting times makes life all the harder. Making medicines available on time to take home to avoid long delay at end of hospital day. Lack of communication when waiting i.e. you don't know what you are waiting for. Time to wait for appointments, past your allocated slot. Time for referrals to other clinics & specialists. Difficult to get hold of the person you want to speak to directly, phone calls not always returned, left waiting.. Parent beds! There seems to be no alternative due to isolation room size. But the beds are very very old, dirty and extremely uncomfortable. Some parents wouldn't even open them and sleep in the chair. Throughout treatment you seldom have the opportunity to sleep at home, therefore a decent, clean, comfortable bed can make a huge difference. The conditions for parents and children on the ward, in the very few rooms and the very poor bathrooms. More rooms for oncology are needed. Total refurbishment of the rooms. Sofa beds are old and often not very clean. The staff are wonderful but the conditions and facilities are completely inadequate. The rooms are few and poorly furnished, the bathroom and shower facilities are also too few and very shabby. It is a very busy children ward so it is not really a place for neutropenic child to be there. Plus the staff are so busy they don't respond to your call soon enough 5

6 Facilities on the ward Privacy The only thing I found difficult with staying in the hospital is that sometimes you need to cry, purely to deal with the physical release needed from the emotional overload and there is nowhere to go to be alone. You don't need comforting; you just need a place to be. Bays that you wait with other families and are seen by doctor/consultant/nurse. It is not always appropriate for some conversations. A more private area to discuss treatment or different diagnosis / change in diagnosis may be necessary. Better storage for long stay patients. Theme: Emotional wellbeing of families Sub theme Access to Psychosocial care Across the network families said that they needed more emotional support for themselves and for brothers and sisters. It was suggested that counselling and access to support groups needs to be more available for families. Some felt that you needed to be assertive and speak out to get help. There was a sense of dissatisfaction with emotional support, which should happen regularly and wasn t provided routinely. I think it s important to address the problems regularly - I say this because one day I can feel fine & happy, the next I can feel very sad and overwhelmed. It almost gets harder the further along we get (at least in some respects) & I think this can be underestimated. Dissatisfied with emotional support, should be offered at the outset. Feel that you should have time to talk to consultant without the child sometimes. Overall very satisfied with the treatment and care. But I think families need more emotional/psychological support. Diagnosis is life changing More support coping with long term treatment as it s a long time nearly 4 years living with cancer. Not aware of any emotional support. staff concentrate on completing clinical procedures. I feel like some sort of counselling/ opportunity to talk through diagnosis would help some parents especially worries and fears. Not any groups or coffee mornings so I can share my experiences with other families in a similar situation. 6

7 Holistic needs / Holistic Care Should have opportunity to meet children of similar ages, going through cancer so child doesn't feel they are the only ones suffering. A focus on emotional needs would be helpful. Ideas to help parents talk through practical issues would be helpful too. Personally I would like to see a bit more focus on holistic wellbeing to support treatment - nutrition, massage, homeopathy, cranial osteopathy etc. Play Play was seen as important for children and parents. Some families said that access to play at weekends was an issue. It was suggested that the children themselves should be more involved in choosing toys and activities for the play rooms. One family said that they felt the cleanliness of the toys took priority over the provision of play for the children. More play specialist support was requested generally, and more specifically for children in isolation and pre general anaesthetic for distraction. I think there should be more for the kids in the way of entertainment by the play specialist, especially while they are waiting to have operations as they become anxious and restless because they can't eat or drink and there should be some sort of distraction. Play therapists are invaluable and made a huge difference to our child s well-being and co-operation with medical procedure and frustration levels of being stuck in hospital, however are too few between. Playrooms - hard to find play workers, not many places to put babies down. Not much help available if you want to grab some lunch, etc - no-one to sit with baby. A small number of children answered questions aimed at them specifically, but parents mostly wrote the child s response themselves. Play specialist roles and play facilities were praised at PTC and POSCU, particularly by the children themselves. Comments from children were mostly about the good experience of coming to the hospital and meeting the staff who worked there. Parents also felt that their children were happy to come to hospital 7

8 Theme: Communication Sub theme Between PTC and POSCU Communication between the PTC and the POSCU was described as needing improvement. With some feeling that such communication was their responsibility. Communication between GOSH, local and the community team is not always successful or effective. I don't know how this could be improved but it needs to be. I feel that GOSH should liaise better with the local to put them in picture about our current stage in treatment and which protocol/treatment route we are taking. Feels down to me to keep everyone in the loop. Communication of plans are not great I feel that GOSH should liaise better with the local to put them in picture about our current stage in treatment and which protocol/treatment route we are taking. With families Signposting at the beginning of the day/appointment On many occasions we have spent 8 hours in hospital for 2 hours of treatment - prolonging our stay. This is just an example, there have been a few where a brief intro with the parent when they report to reception explaining what the different treatments will be, checking the right tests have been done and what medications will need to be ordered from pharmacy. Could help prevent holes appearing in the schedule. The part where we have weight and measurement taken quite quickly after arrival would be a good time to run through this - at the beginning of the day. It's quite difficult and alienating to only know the various stages are as they happen without an intro at the beginning of the day Theme: Training and education Sub theme More training and education needed at the POSCU Families commented on the lack of knowledge and experience of some medical and nursing staff in dealing with children with cancer. More and better training was suggested for staff working in the POSCU s to deal with the children s care. Port access was highlighted as an issue for some families. Possibly more training for port access for ward staff. To improve their confidence with accessing. Not all staff have experience of accessing a port Train the doctors and nurses to deal with oncology children. No experience in dealing with the cancer children. Limited knowledge about oncology patients. 8

9 There were also a number of suggestions about how to improve or change other aspects of the service that didn t fit into the overarching themes. These are outlined below: More practical help and support Could the volunteers have more presence on the ward? They are never around & seem to stand about downstairs not doing much. They could offer to get single parents a coffee, or help them down to the car with their bags. Not sure if this is possible but it would be really nice. Ideally the only thing we need is someone to relieve me for a few hours so i can go for my doctors appointments. Give parents more opportunities to network by providing staff to supervise children. Financial support and employment issues information. A lot of parents lose their jobs because of diagnosis. Forums - diagnosis specific forums. Web chat groups or online information about treatment. Children on chemotherapy always have feeding problems. Dietician role is crucial. Hannah (name changed) the dietician on (in-patient ward at PTC) is not suitable for this role. She is inexperienced and her knowledge is purely cookies only. Jo (name changed) dietician on (in patent ward at PTC) is superb and very meticulous in his approach. He should see oncology patients only. 9