The Oncology Family Forum: Collaborating With Families to Codesign Pediatric Oncology Services

Introduction

The Oncology Services Group (OSG) at Queensland Children’s Hospital (QCH) is the only tertiary referral center for pediatric oncology, servicing Queensland and Northern New South Wales in Australia. It sees around 200 new patients per year. Family engagement at all levels has been an important feature of the service. The Oncology Family Forum (the Forum) was added in 2018 in response to concerns voiced by families on various news and social media platforms and via the hospital complaints and compliments processes. There was a requirement for more direct engagement with families in a conversation around service improvement.

The Forum design was informed through family engagement during the move to the new QCH in 2014 and experiences at another children’s cancer center. In collaboration with families, the Forum was implemented with the following objectives:

Provide opportunities for families and service representatives to meet and discuss potential areas for service improvement.

Following the vision of the Children’s Health Queensland (CHQ) Consumer and Community Engagement Strategy 2016 to 2020 (1), OSG was committed to ensuring that the child and family were at the heart of all we did in working collaboratively to improve health outcomes. The goal was to be a listening organization which engaged in building productive relationships with families.

The concept of consumer codesign in health care originated in maternity health care improvements in the post-World War II period and was further developed during the 1980s with a focus on chronically ill and hospitalized children (2). It is now included in most health care standards. Consumer or patient-family codesign enables patients and families to partner with the health care team and service² to improve care. This may include developing education, creating tools and policies, or informing service delivery and structural changes (3).

The patient and family experience is an important source of knowledge (4) and central to improving care and creating sustainable health care systems for the future (5,6). Improved service efficiency has been linked to improvements in patient experience (1), and research has demonstrated links between patient satisfaction and health professional satisfaction (7).

Workgroups, advisory groups/councils, brainstorming sessions, focus groups, and user panels were the top 5 methods for consumer participation in health care (8). Experience-based codesign is a health care–specific quality improvement approach (9) which utilizes the unique experiences of patients and their families (4).

There are a number of different evaluation tools in the literature that explore participant engagement, organizational commitment, services, systems, the influence on population health and overall cost-effectiveness (10). Frequently, a combination of qualitative and quantitative evaluation approaches are used (10). For example, Discovery Interviews with oncology families at QCH were a valuable and enlightening process for clinical teams as well as the parents/caregivers. It led to service improvements which encompassed family supports, service processes, and individual clinical practice (11).

Bombard et al reviewed 48 studies involving consumer engagement in health care improvement (3). Only 25% of these studies formally evaluated the experience of consumers, but where this was explored the results were generally positive, with reported increases in self-esteem and empowerment in the consumers.

In an evaluation of 2 pediatric experience based codesign projects, health professionals were initially uncomfortable with the consumers’ new role in health care improvement. The consumers initially showed higher attendance and commitment to the process compared to the professionals (4). Time-poor health professionals may perceive that involving consumers in quality improvement initiatives is time-consuming (12,13), and that some consumer perspectives are a critique on the professional care they provided (4).

Codesign in health care has significant potential to make real change; however, it is not without its challenges, especially when there is an ongoing care relationship between the consumer and professional (4). Careful consideration of the format, recruitment, method of consumer involvement, and leadership action is recommended to enable successful engagement and create a receptive environment (4). The organization needs to be ready for codesign, with support from senior managers and preparations to empower consumers to contribute (9).

Bombard et al describe 3 areas that influence consumer engagement in health care codesign: the patient (beliefs about the patient role, health literacy, education), the organization (policies, practices, and culture), and society (social norms, regulation, policy) (3). This summary of the facilitators and barriers of engagement was drawn upon during the development of our Oncology Family Forum.

Methods

The QCH Oncology and Executive Leadership Teams were committed to work effectively in partnership with our families. This included establishing clear structures, processes, shared principles, and goals in alignment with CHQ values.

In the spirit of partnering with families (the CHQ value of integrity), the aim of the Forum was to listen to each other (respect), look after each other (care), provide information around the oncology service, and explore innovative ideas and suggestions (imagination). The principles and goals (see supplementary material) were discussed at the commencement of each Forum to set the scene for productive collaboration.

The purpose and processes of the meetings were clearly articulated. Invitations were distributed in all clinical areas and shared electronically with family contacts for dissemination via their networks. Families were requested to indicate their intention to attend and submit questions or topics for discussion, which informed the agenda. Following the Forum, a summary of discussions and actions was approved through CHQ Communications and Engagement and distributed to families.

Coordination of the Forum (including compiling agenda items, summary notes, and reports) was the responsibility of the Program Manager, who was not directly involved in the care of patients and was a neutral party for the families to approach.

Key steps were taken to facilitate family attendance at the Forums:

The Forums were intentionally “informal” in nature, to foster open discussion and collaboration between staff and families. The following strategies facilitated this:

Results

Four Oncology Family Forums were held in 2018 and 2019, including October 2018, January 2019, May 2019, and September 2019. The aim was to hold Forums 3 to 4 times a year, and dates were influenced by the availability of Executive and staff attendees and the auditorium.

Table 1 provides information about the attendees at the first 4 Forums. There were 26 individual parents/caregivers/grandparents who had attended at least 1 of the 4 Oncology Family Forums, including 4 males and 22 females (85% female). One attendee was a grandfather and the remainder were parents/caregivers. Twelve of the attendees attended only 1 Forum, 5 attended 2 Forums, 5 attended 3 Forums, and 4 attended all 4 Forums. Three resided in outer regional areas, one in an inner regional area and the rest in major cities (85%).

OPEN IN VIEWER

Table 1.

Oncology Family Forums—Total Attendee Information.^a,b

Descriptor	Categories	October 2018	January 2019	May 2019	September 2019	Totals across 4 forums
Family attendance		12	14	15 (3 via video link)	12	26
Gender of parent	FemaleMale	111	122	132	93	224
Relationship to patient	ParentGrandparent	12	131	15	111	251
ASGS Remoteness area of family residence	Major citiesInner RegionalOuter regional	111	1211	12 (2 via video link)12 (1 via video link)	12	2231
Patients represented		11	12	15	11	23
Diagnosis	Leukemia /lymphomaSolid tumorBrain tumor	443	723	942	731	1283
Patient age-group	0-4 years5-9 years10-14 years15-19 years	0542	0453	1752	1532	2984
Stage of treatment	On treatmentFinished treatment<12 months>12 months	48	48	411	47	61798
Staff attendance		14 CHQ	19 CHQ2 Ministerial	11 CHQ	12 CHQ7 NGO

Abbreviations: ASGS, Australian Statistical Geographic Standard Remoteness Areas 2016; CHQ, Children’s Health Queensland.

^a n = 26.

^b Parent = parent/caregiver.

The attendees represented 23 patients with diagnoses of leukemia/lymphoma (n = 12), brain tumors (n = 3), and other solid tumors (n = 8) and who were aged 0 to 4 years (n = 2), 5 to 9 years (n = 9), 10 to 14 years (n = 8), and 15 to 19 years (n = 4).

Additionally, 8 parents/caregivers represented 6 (26%) patients who were on-treatment, and 17 (74%) had finished treatment. At the time of their most recent attendance of their parent at a Forum, 9 of the related patients were less than 12 months off-treatment, and 8 were off-treatment for greater than 12 months. Of the latter group, 2 parents/caregivers represented patients who had finished treatment between 4 and 10 years previously and had remained engaged with the service for long-term follow-up.

Discussions in the first 4 Forums, either during the Forum meeting or via written responses, included a range of clinical, practical, structural, and administrative topics including service demand, facility changes, family support, hospital processes, family and staff collaboration, and clinical information (see supplementary material).

A link to the online survey was distributed to each of the 18 parents/caregivers/grandparents who had attended the 2 Forums conducted to February 2019. Twelve responses were received; a 67% response rate. Of the parents/caregivers who responded to the survey, 8 had attended both Forums and 4 had attended only one Forum.

The survey (Table 2) revealed that 83% of respondents agreed or strongly agreed that the Forum had improved families’ experience of oncology services overall. Of this, 92% agreed or strongly agreed that there was a partnership with families to codesign the service and that ideas and suggestions were explored together. A small number of parents (25% of respondents) disagreed that there was enough time in the Forum and 17% disagreed that all family questions were answered; 17% also disagreed that there was representation of all family voices, including regional perspectives.

OPEN IN VIEWER

Table 2.

Family Responses to the Oncology Family Forum Survey n (%).^a

Question	Disagree	Neutral	Agree	Strongly agree
We maintained the care of the child/young person at the center of all we did.	0.0	1 (8.3)	6 (50.0)	5 (41.7)
There was a shared understanding of the purpose and desired outcomes of the Forum.	0.0	2 (16.7)	5 (41.7)	5 (41.7)
There was a partnership with families to codesign the service.	0.0	1 (8.3)	5 (41.7)	6 (50.0)
We listened to each other respectfully.	0.0	1 (8.3)	5 (41.7)	6 (50.0)
We looked after each other.	0.0	1 (8.3)	7 (58.3)	4 (33.3)
We provided information about Oncology Services.	0.0	1 (8.3)	5 (41.7)	6 (50.0)
We explored ideas and suggestions together.	0.0	1 (8.3)	5 (41.7)	6 (50.0)
We respected people’s time in attending the Forum.	1 (8.3)	1 (8.3)	5 (41.7)	5 (41.7)
There was enough time to share information and feedback.	3 (25.0)	7 (58.3)	1 (8.3)	1 (8.3)
We heard the voice of all our families, including those residing in regional and remote areas.	2 (16.7)	5 (41.7)	2 (16.7)	3 (25.0)
All the families’ questions were answered in the Forum or in follow-up.	2 (16.7)	5 (41.7)	2 (16.7)	3 (25.0)
I feel that the Oncology Family Forum has improved the families’ experience of oncology services.	0.0	2 (16.7)	6 (50.0)	4 (33.3)

^a Note that no responses were recorded in the “strongly disagree” category.

Positive aspects of the Oncology Family Forum expressed by the families in the survey included improved collaboration, trust, understanding, communication, accountability, and relationships. Negative aspects were the time available and agenda management, forum processes, the range of families attending and accountability for outcomes (see supplementary material).

The survey also gave an opportunity for open comments about the Oncology Family Forum. Comments relayed gratitude for the Forum as well as suggestions regarding processes and agenda topics that were addressed in future Forums (see supplementary material).

Tables 3 and 4 show responses from the 4 parents/caregivers who participated in face-to-face interviews regarding the challenges they had experienced in the service and any changes they had seen.

OPEN IN VIEWER

Table 3.

Interview Quotes in Response to the Question: Describe Some of the Challenges You Experienced.

Parent	Comments
1	Some of the issues we faced leading up to the development of the Forums was the lack of communication between both parents and families and ward and outpatients.
2	Being here as a patient and with a child, and you almost live here during that time, you actually see things that you know could be done better. But where could you go and put that, because it wasn’t a complaint.You do feel alone and you learn about things when you’ve finished, and I really would like to make a difference to families going through it, to help walk them through the process because your mind is not where it would normally be.
3	We did find that before we had these Forums that we had extremely long waiting times as outpatients.
4	Before the Forums started, it was a bit isolating. People, well I didn’t know how things were going. It was hard to communicate, you didn’t know who to communicate with.

OPEN IN VIEWER

Table 4.

Interview Quotes in Response to the Question: Describe Any Changes You’ve Noticed.

Parent	Comments
1	So the Forums have really allowed us to air some of our concerns, really given us a place to even lobby for things that we need.Some of the ongoing challenges I think is just finding time—the written responses that were given to us by the Program Manager has been great because it does mean that we get more presentations as opposed to just question and answer. And people being patient focused as opposed to holistic program focused, which I think is important.
2	Having this Forum gives us the opportunity to tweak all those things that make everyone’s life easier as they go through this difficult time.And even having the opportunity to talk about all the structural things that are going on around the hospital and how we can improve that.
3	There has definitely been an improvement in shorter waiting times, so where we have been here for 6-7 hours, we are now down to maybe 2-3 hours, so that’s a huge improvement for our little people who are waiting around for long periods of time.
4	But since then [the Forums], it’s been really fantastic. We’ve been able to learn more. It’s been positive, the communication with staff, and understanding the hospital function better.

The positive aspects of the Forum reported by families included having a common cause, building collaboration and trust, being listened to, increasing understanding and communication, following through actions, and meeting other families. The negative aspects were related to the ability to address all the agenda items raised by families and the different priorities of on-treatment and off-treatment families.

Discussion

The survey showed that the greatest concern of families was having enough time to share information and feedback, answering all the questions asked, and hearing the voice of the range of families, including those living in regional areas. The latter concern was improved through the addition of dial in videoconference facilities. Three families used this in the third Forum and this was positively received. Time concerns were alleviated by providing written responses to some of the families’ questions that were distributed at the Forum and to the email group. Although most Forums kept to the agenda and time frames, it was important to be flexible enough to address discussions that the families wanted to pursue.

Conclusion

Given the positive feedback received, QCH OSG plans to continue to offer quarterly Oncology Family Forums with a newsletter issued the month prior. Attendance via videoconference and written responses will continue to be offered to facilitate access for families who are unable to attend in person. We will consider the success of the August 2020 Forum which was conducted sucessfully via videoconference with an attendance of 38 families and 15 staff. The service will continue to actively engage in this collaboration to ensure ongoing family engagement and partnership and to ultimately improve the experience of patients and families within our service.

Supplemental Material