Engaging patients and their families in practice change

Engaging patients and their families in practice change and innovation through the PINS study Professor Tanya Mc. Cance & Ms Rosie Kelly

Background Information The project is a collaboration between UTS (lead researcher Professor Val Wilson co-joint appointment with Sydney Children’s Hospitals Network) & University of Ulster (lead researcher Professor Tanya Mc. Cance) This study is being conducted in collaboration with children’s hospitals and children’s units in general hospitals across a number of countries in Europe and Australia with 12 organisations involved (across 20 wards/units) A core set of 8 KPIs have been developed from primary research undertaken by Tanya Mc. Cance at the University of Ulster Participants from the Australian sites Workshop 29/30 th Jan 2013

KPIs for Nursing and Midwifery KPI 1: Consistent delivery of nursing/midwifery care against identified need KPI 2: Patient’s confidence in the knowledge and skills of the nurse/midwife KPI 3: Patient’s sense of safety whilst under the care of the nurse/midwife KPI 4: Patient involvement in decisions made about their nursing/midwifery care KPI 5: Time spent by nurses/midwives with the patient KPI 6: Respect from the nurse/midwife for patient’s preference and choice KPI 7: Nurse’s/midwife’s support for patients to care for themselves where appropriate KPI 8: Nurse’s/midwife’s understanding of what is important to the patient (Mc. Cance et al 2012)

ATTRIBUTES OF THE NURSE Professionally competent ²Patient’s confidence in the knowledge and skills of the nurse/midwife PERSON-CENTRED PROCESSES ²Consistent delivery of nursing/midwifery care against identified need ²Time spent by nurses/midwives with the patient Working with patient’s beliefs and values ²Knowing what is important to the patient ²Respect for patient’s preference and choice Sharing decision making ²Patient involvement in decisions made about his/her care Person-centred Nursing Framework (Mc. Cormack & Mc. Cance 2010) Providing holistic care ²Support of patients to care for themselves, where appropriate ²Patient’s sense of safety whilst under the care of the nurse/midwife

Measurement Framework The framework for measurement utilises a range of data collection methods The measurement framework comprises three key data sources i. obtaining user feedback (patient survey & patient/family stories) ii. observations of practice iii. reviewing the patient records against identified goals iv. Speaking with staff

Project Aim To explore the utility of these KPIs and related measurement framework in supporting the development of person-centred practice across a range of services provided to sick children.

European Sites Hans Christian Andersen Children's Hospital, Odense, Denmark Temple Street Children's University Hospital, Dublin, Ireland Great Ormond Street Hospital, London, England, UK East Kent, England, UK Royal Belfast Hospital for Sick Children, Belfast, Northern Ireland UK South Eastern Trust, Northern Ireland UK

Australian Sites Princess Margaret Hospital for Children, Perth Northern Sydney Local Health District Nepean Blue Mountains Local Health District The Women's and Children's Hospital, Adelaide The Sydney Children’s Hospital’s Network

Project Plan Tailoring KPIs and measurement framework for use within a paediatric setting 3 cycles of implementing the KPIs and measurement framework, followed by supporting practice change and innovation Evaluation of the implementation process Hypothesis generation and preparation of final research report

Stage 2: Implementation of the KPIs and measurement framework 1 2 3 4 5 6 7 8 9 10 Survey Survey Observation Analysis Feedback Stories Transcribe Analysis Document • Survey: distributed to all patients on discharge (over 7 weeks) • Stories: 3 family stories over 1 week and 3 patient stories over 1 week • Documentation: review patient record in conjunction with asking staff about patient goals (10 reviews over 1 week) • Observation: monitoring nursing presence in a specified bay over a 30 minute time period (3 over 1 week)

Outcomes for SE Trust (1) KPI 8: Did you feel the nurses understood the things that were important to your child during their time in hospital? Parent’s comment: Maybe they could have told the parents a wee bit more about the arrangements for staying overnight. Because you’re sitting there you don’t really know whether to get into your jammies or not or is there a bathroom for the mummies that we can use. Nobody really said anything to us so we weren’t sure, so maybe that was the only thing.

Outcomes for SE Trust (2) KPI 5: Did you feel that the nurses had enough time to give the care which your child needed? Patient Satisfaction survey Parent’s comments: They had time for them, you know, they spent time with them and got them whatever they needed. And if the buzzer went they were there.

Outcomes for SE Trust (3) KPI 4 : Did you feel the nurses involved you in the decisions made about your/your child’s care? Child’s comments: I felt really included in every decision that there was to make, because they made me fell like I was the adolescent and they treated me like I was the person going through, like I was able to make the decisions and it gives you a sense of independence and I really like that.

Action Plan Issue Current documentation does not: 1. Facilitate easy identification of parent daily priorities of care to their hopes/wishes. 2. Clearly identify area for nurses to record daily patient priorities There is no agreed standard written information leaflet/ welcome to booklet for the children’s unit. Relationship to KPI Action Required KPI 4 patient’s involvement in decision making KPI 8 understanding of what is important to the patient KPI 6 Respect for patient preference and choice KPI 8 understanding of what is important to the patient Review of current nursing documentation is already underway Person Responsible & Date for Completion Rosie Kelly and pediatric ward sisters/deputy sisters The development of Craig Ward staff ‘Welcome to the children and young person’s unit at the Ulster Hospital’ booklet

Our experience Staff engagement through regular feedback is key Time consuming to embed in practice Learning new skills around data collection and analysis made us a bit anxious to start with Action planning is a bonus because it gave us focus Publicising our results for parents and kids to see is important

Outcomes Example 2: Comparison of six wards in one organisation KPI 1: Consistent delivery of nursing care against identified need Patient Satisfaction Survey “Did you feel that the care your child needed was delivered each day regardless of which nurses were on duty? ” KPI 5: Time spent by nurses with the patient Observations of Practice: Based on observations carried out at differing times of the day

e Pa diat ed ric Pa iat 1 ed ric Pa iat 2 ed ric Pa iat 3 ed ric Pa iat 4 ed ric Pa iat 5 ed ric Pa iat 6 ed ric Pa iat 7 e ri Pa dia c 8 ed tri ia c 9 t Ge ric 1 n 0 Ge era n l 1 Ge eral Pa ne 2 e ra Pa diat l 3 ed ric Pa iat 11 ed ric ia 12 t Ge ric n 13 Ge eral n 4 Ge era ne l 5 ra l 6 Pa Outcomes Example 4: Benchmarking across all participating sites KPI 1: Consistent delivery of nursing care against identified need Chart Review 4. 00 3. 50 3. 00 2. 50 2. 00 1. 50 1. 00 0. 50 0. 00 Chart review Mean Paediatric hospital mean General hospital mean

Novelty of the project Measuring the impact of nursing on the experience of patients and their families Involving nurses in evaluating and making changes to their own practice as a result of engaging with the research process Implementing processes that support the use of evidence to inform practice and knowledge translation in action Developing capacity in research through engagement of local facilitators Creating active research collaborations that can influence the local, national and international healthcare agenda.

Further Information Professor Tanya Mc. Cance Institute of Nursing and Health Research University of Ulster E: tv. mccance@ulster. ac. uk Ms Rosie Kelly Paediatric Unit South Eastern Trust E: rosie. kelly@setrust. hscni. net Patricia Coulter BHSCT E: patricia. coulter@belfasttrust. hscni. net