Consumer involvement in research – parent perceptions of partnership in cerebral palsy research: a qualitative study

Abstract Purpose Identify perceptions of parents and caregivers of children with cerebral palsy about being consumer research partners and identify strategies to inform involvement of parents in cerebral palsy research. Materials and methods Twenty-two parents in New South Wales and Victoria (Australia) participated in this qualitative study. Seven interviews and three focus groups were completed. Interpretive description guided data analysis. Methodological rigor was enhanced through involving two consumer investigators in the research team, member checking, and multiple researchers completing data analysis and theme generation. Results Participants identified a range of factors that may influence their involvement in research partner roles. Main topics emerging from the data included “Research Is Better with Parents” and “Parents Benefit from Being Research Partners.” A third, “Parents as Research Partners,” contained the themes “Flexible Involvement,” “Starting Partnerships,” and “Building and Sustaining Partnerships.” Conclusion This study has provided a rich insight into how parents perceive and describe engaging as research partners. Parent-identified guidance will inform future partnerships aiming to enhance the quality of cerebral palsy research and outcomes for people with cerebral palsy and their families. The involvement of consumer investigators in this study was considered valuable for enhancing the quality and applicability of the research. IMPLICATIONS FOR REHABILITATION Parents believed that parent partnership in research has benefits for the research and for the consumers involved. Parents provided guidance about the importance of starting, building and sustaining relationships in involving parents as research partners. Understanding the parent context, investing in relationships and acknowledgement of, and recognition for, contributions were considered important for building and sustaining effective partnerships. Flexible approaches to supporting parents as research partners was considered necessary for effective partnership.


Introduction
Funding for cerebral palsy research is competitive and scarce, therefore, research outcomes need to be relevant and have an impact [1]. Research involving consumer research partners is believed to result in more relevant and credible findings [2][3][4][5][6][7]. In addition, consumer involvement is considered to foster "more democratic and socially responsible practices that challenge traditional academic elitism and privileged knowledge" (p. 3) [3]. Involving consumers as research partners means carrying out research with them, not about, for, or on them [8,9].
Consumers are defined by the National Health and Medical Research Council (NHMRC), the main statutory authority for research in Australia, as people who use health care and support services and their caregivers [10]. The NHMRC calls for the active involvement of consumers in health and medical research. The terminology used to describe consumer involvement in research varies and includes combinations of family, patient, public, stakeholder and citizen, with engagement, involvement, and participation in research [11]. In this study, parents of children with cerebral palsy are termed consumers and are referred to as research partners when involved in collaborating with researchers to design and implement research.
Ideally, consumers are involved in each stage of the research cycle from identifying and prioritising research questions through to dissemination and knowledge translation. Stallings and colleagues, for example, have developed a taxonomy that categorises over 70 consumer involvement activities from pre-research through to post-research including knowledge translation [12]. Consumer involvement in research can span a continuum from being informed and consulted about research, completing discrete tasks, to leading research [4, 13,14].
Quantifying the impact of consumer involvement in research is difficult as involvement is rarely formally documented or evaluated [2]. Benefits to the research of consumer involvement, however, have been identified and include prioritising research questions and agendas, influencing study designs to be more relevant and accessible to participants; reducing any adverse impacts of research on participants; and increasing the effectiveness of knowledge translation [2,[5][6][7]15]. Consumer involvement enables research outcomes to be more closely aligned with the needs of the population on whom the research is focused [16,17]. Consumers report personal benefits when engaging as research partners including acquiring knowledge, skills, a sense of empowerment, motivation and increased confidence [2,5-7, [18][19][20][21][22]. Consumers also view it as an opportunity to assist others experiencing similar challenges and to learn more about the area of study [15,18,20,22]. Negative impacts of consumer involvement have not been as readily investigated or reported [6].
While literature asserts that involving parents as research partners in health research has many benefits, and there are increasing numbers of sources of information to support these practices, there is little explicit guidance in the field of cerebral palsy research [2,15]. The broader field of childhood disability has provided guidance and examples of involving parents as research partners [4,5,15,23,24] and researchers have asked children with cerebral palsy about their involvement in research [22]. Engaging parents as research partners requires significant resources and presents risks such as power imbalance, unclear role expectations, differences in the motivations of researchers and parents, and insufficient recognition of the lived experiences of parents [3,15]. Motivating researchers to address these barriers, and embrace and facilitate research partnerships, is critical to ensure authentic, sincere and effective involvement of parents as research partners [24][25][26].
Understanding the perspectives of parents of children with cerebral palsy is important to developing involvement strategies and successful involvement of parents in research partner roles. The aims of this study, therefore, were to identify (i) how parents of children with cerebral palsy perceive and describe facilitators and barriers to being involved as research partners and (ii) strategies to support researchers and parents of children with cerebral palsy in future involvement.

Design
This interpretive description (ID) qualitative study used individual phone interviews and focus group interviews to obtain perceptions of parents of children with cerebral palsy about being research partners [27]. ID involves developing conceptual descriptions of common thematic patterns and characteristics of narrative data obtained in response to questions relevant to practice, whilst also accounting for individual variations regarding the topic studied [28]. In this study, the practice setting was research partnerships between researchers and parents of children with cerebral palsy and analysis sought to understand their perspectives for the purpose of developing strategies that could optimise future engagement of parents as research partners.
Two members of the research team for this study were consumer investigators: a mother of a person with cerebral palsy (MT) and a woman with cerebral palsy (AH). The main purposes of their involvement were to integrate their deep knowledge of the lived experience of cerebral palsy into the research processes to increase the quality and credibility of the study, and to elicit their guidance on minimising potential power imbalance and ensuring a positive research experience for participants. Their involvement is reported using Guidance for Reporting Involvement of Patients and the Public; Short Form (GRIPP2-SF) ( Table 1) [29]. GRIPP2-SF was developed to enhance the consistency, quality and transparency of reporting of consumer involvement in research [29]. GRIPP2-SF requests details of the aims, methods, positive and negative influences and outcomes of involvement, and reflections and critical perspectives on consumer involvement. Addressing these issues, particularly the latter aspects, requires a level of critical analysis and aims to provide clarity about the nature of involvement and to enable others to learn from the experience [29]. Consistent with recent recommendations, the GRIPP2-SF was completed collaboratively with MT and AH [30]. This study was approved by the Human Research Ethics Committees of the Australian Catholic University (HREC 2017-330E) and Cerebral Palsy Alliance (HREC 2018-02-02). Participants provided signed, written, informed consent.

Participants
Participants were eligible for inclusion whether or not they had experienced as a research partner if they: were a parent or caregiver of a child or adult with a diagnosis of cerebral palsy or an infant considered at risk of having a diagnosis of cerebral palsy; living in New South Wales (NSW) or Victoria (Australia), able to participate in individual phone interviews or focus group interviews in English; and were willing to participate within the time limits of the project. Convenience sampling, through online platforms of cerebral palsy organisations and targeted sampling through a parent liaison officer, was used to recruit participants from June to July 2018. (See Figure 1 for a flowchart of participants through the study).

Procedures
Two methods of data collection were used, individual phone interviews and face-to-face focus groups interviews, to accommodate individual participants' preferences and geographical locations. Interviews and focus groups were guided by a semistructured interview schedule developed with a consumer investigator AH and trialed and revised with MT. Anticipating that some participants may have had no experience with research, the interview schedule began with discussing the stages of a research project (PenCRU's research cycle) which then underpinned subsequent interview or focus group questions [31]. See Table 2 for information provided to participants about the research cycle.
The interview explored experiences of participants related to research partnerships and aspects of the research they may be interested in, perceptions of barriers and facilitators to being involved, or potentially involved, as a research partner, advantages and disadvantages of parents being involved as research partners, and suggestions for supporting research partnerships. See Table 2 for a summary of the interview/focus group schedule. Field notes were recorded by the first author (KH) following each individual phone interview and focus group interview, and during transcription and coding. These consisted of reflections and key points important for understanding and tracking the emergence of themes during data analysis.
The sample size was planned to be the point of reaching data saturation or by numbers of participants available during the timeframes of the study (June to July 2018), whichever came first. Data saturation was defined as a point where no new information or themes were identified in progressive interviews or focus groups [32]. Participants were contacted at intervals after the interviews and focus groups to inform them of study progress and findings.

Data analysis
Narratives from individual phone interviews and focus group interviews were digitally recorded and transcribed verbatim. Transcripts were sent to participants for member checking to ensure they were credible and truthfully reflected their perspectives. Minor amendments to the grammar and sentence structure of the transcription were requested by one participant. Narratives were coded, once data collection was complete, by three research team members (KH, MW, BDD) to develop a consistent approach to coding. Prior to, and throughout data analysis, these team members declared and interrogated potential biases and how these may impact the lens through which data were analysed and interpreted -MW and BDD were researchers with experience in the field of cerebral palsy research and clinical practice; MW had experience with partnering with consumers in research; KH was research student who completed interviews and focus groups. Members of the research team (KH, MW, BDD, MT) grouped codes to identify emerging patterns, themes, meaning, explanations and exceptions. Consistent with ID methodology, preliminary interpretations were challenged using informed questioning, and reflective techniques were used to synthesize meaning, theorize relationships and produce descriptions of the topics, themes and subthemes which were synthesized from the narrative data [33]. These processes of intellectual inquiry were guided by Thorne's [34] analytical approaches; the team challenged the codes, relationships, themes and quotes used to illustrate the themes with questions such as: What is happening here?, Why is this here?, Why not something else?, and What does it mean? These processes aimed to ensure that researcher biases were acknowledged, the bigger picture offered by the narratives remained under scrutiny, the truths in the data were identified and the findings could be applied in research practice. Table 1. The involvement of consumer investigators in this study was reported using the GRIPP-2 Short Form [29]. Consumer and non-consumer investigators contributed to reporting. GRIPP 2 short form 1. Aim: Report the aim of consumer involvement in the study To enhance participant experience and increase the quality and credibility of the study by integrating comprehensive knowledge of the lived experience of cerebral palsy into the research processes. 2. Methods: Provide a clear description of the methods used for consumer involvement in the study Two consumers accepted an invitation circulated through MW's contacts to be consumer investigators and are named on ethics documentation, publications and presentations. Involvement was flexible and determined by consumer preferences, access needs and availability. Involvement started during the study design phase and continued throughout all stages of the research cycle. Communication was by email, video conference, and face-to-face meetings. No funding was available to pay consumer investigators. Refreshments and parking were provided when possible. 3. Study results: Outcomes -report the results of consumer involvement in the study, including both the positive and negative outcomes Positive outcomes � Input to participant information and consent forms resulted in addition of necessary information, deletion of superfluous information, and improved readability. � Developing and piloting the interview schedule resulted in an enhanced introduction to prepare participants; an educational preamble and research cycle to assist participants to distinguish between the roles of research partner and participants; strategies for managing potential scenarios such as moving offtopic; wording which reduced jargon; and enhanced flow, structure and delivery of the schedule. � Co-developing the ethics application influenced recruitment strategies, advertising material, and resulted in multiple options for expressing an interest in participating (phone, email, online form). � Transcriptions for member checking were easier to read and provide feedback. This contribution enhanced consumer investigator familiarity with the data to feed forward into the data analysis stage. � Insights into data analysis and interpretation challenged researcher bias and resulted in the selection of theme names.

Negative outcomes:
� Researcher time to support consumer involvement, however, contributions to the feasibility, implementation and outcomes more than offset the time commitment. � Consumer investigators were not involved as fully as desirable due to researcher and consumer availability and time commitments. 4. Discussion and conclusions: Outcomes -Comment on the extent to which consumer involvement influenced the study overall. Describe positive and negative effects Researchers perceived that consumer involvement was deeply enriching -personally, professionally and through its contribution to study quality, relevance and involvement of participants in interviews and focus groups. Although time-consuming, it resulted in straightforward and participant-friendly processes and documentation which saved time, enhanced participant and researcher experiences, and contributed to a greater than expected number of participants. 5. Reflections/critical perspective: Comment critically on the study, reflecting on the things that went well and those that did not, so that others can learn from this experience. Involving two research partners optimized availability for each stage of the research, and contributed lived experience the research team did not possess. The two perspectives provided complementary but differing perspectives which added to the richness of involvement. The consumer investigators contributed a range of skills, knowledge and expertise in addition to their cerebral palsy-specific experiences. AH reported benefiting professionally -honing research skills and ability to present targeted consumer narratives. She attributed these benefits to the implementation of a conscientious involvement approach, involvement from study inception, flexible involvement options and regular communication.
Consumer investigators expressed a desire to collaborate more extensively -time, availability, logistics and geography limited opportunities. Involvement of additional consumers with diverse experiences would have broadened the perspectives available to inform the study (e.g., parents of younger children, parents living rurally and from different socioeconomic and cultural backgrounds). Future research must actively pursue funding to pay consumers and accurately reflect the value of the consumer investigators' time and expertise. Recording the time spent by consumer investigators and researchers would have been valuable in informing funding applications.  Table 2. Summary � of the content of the semi-structured interview and focus group interview schedule -adapted for interview or focus group.

Broad areas Questions or content
Introduction to the research cycle An image of PenCRU's [31] research cycle was displayed, containing the following stages which were verbally described: identify research priorities; decide on research questions; plan and design methods; seek funding and ethics approvals; collect, analyse and interpret data; communicate results; change practice; and reevaluate. Examples of activities from the stages were also provided.

Introductions
Information invited about participants and their child with cerebral palsy Experiences of being in a research partner role, perceived facilitators, challenges and solutions.
Experiences as a research partner were ascertained. If a participant had previous experience as a research partner: � What research tasks or parts of the research cycle were you involved in? � What were the tasks that you, or the researchers, did to make it easier for you to be involved? � What were the challenges you faced in being a research partner and how did you overcome those challenges? � What would you change, from this experience to make it easier for you to be involved as a research partner in the future? � What suggestions would you give parents who are interested in becoming involved as researchers? Field notes and reflections on the concurrent experiences of involving the consumer investigators as research partners in this research project were used to inform data coding, synthesis and interpretation. In addition, trustworthiness was addressed by regularly reflecting on, declaring and discussing positioning in relation to the research. This process was to challenge assumptions and biases brought to the research through personal and professional backgrounds and experiences. The research team perspectives included those of both experienced and novice researchers, and consumer investigators.

Results
Twenty-two participants were recruited and involved in individual phone interviews (n ¼ 7) or one of three focus group interviews (n ¼ 3, 4, 8). See Figure 1 and Table 3. The duration of focus groups and interviews were 90 and 60 min respectively. One participant was male, 21 were female; 21 were parents, 1 was a caregiver; 8 were from Victoria and 14 were from NSW. The sample size was limited by study timeframes rather than continuing to the point of data saturation which we defined a priori as a point where no new information or themes were identified in progressive interviews or focus groups. Data saturation may not have been achieved within the timeframes of this study as new information was identified during coding of the final focus group.
Our data analysis revealed three top-level ideas which we termed 'topics'. One of the topics contains two additional levels of ideas which are termed themes and subthemes. Two of the top-level topics which emerged from analysis of participants' narratives were mutual benefits of: "Research is Better with Parents" and "Parents Benefit from Being Research Partners." The third toplevel topic was "Parents as Research Partners." The latter topic included the themes "Starting Partnerships" and "Building and Sustaining Partnerships" and both of these themes contained subthemes. The subthemes for "Starting Partnerships" were "Knowledge of Research and Partnership," "Motivation to be Involved" and "The Invitation to be Involved." The subthemes for "Building and Sustaining Partnerships" were "The Parent Context," "The Researcher-Parent Working Relationship" and "Acknowledgement." A thread running through all findings was the theme "Flexible Involvement" encompassing strategies to support parents as research partners. (See Figure 2 for a visual representation of topics, themes and subthemes emerging from participant narratives).

Topic 1 -Research is better with parents
In this topic, participants perceived that it was important to involve parents as research partners as it benefited research. Parents also considered that involvement from the beginning of a project improved the quality and accuracy of the research.
Hopefully then the research is more successful and at least, whether the outcome was successful or not, at least the process was successful. You know that you have been robust; you know that you have been as accurate as possible. Focus group, participant 1, previous experience as a research partner (FG1, PrevExp).
Involving parents was considered a way to reduce researcher and clinical bias and increase the relevancy of research by ensuring it addresses a need derived from the community. Participants identified their capacity to contribute specialised knowledge of the lived experience and skills that they possess because of their experience with their children.
To have someone actually there with a lived experience saying that this research actually means something to us, it can be a really valuable thing and motivating for the researcher. FG2, No previous experience as a research partner (NilPrev).
Two stages of the research cycle were identified as being particularly relevant to their expertise as parents: identifying ideas and concepts for research and sharing research results. Participants felt their input during the initial stages of research could reduce the likelihood of time and resources being wasted on irrelevant topics.
Because there's nothing worse than getting half way or three quarters of the way through and then because they haven't involved parents, they realize it's wrong. I mean getting grants for research is not an easy fix and it is very expensive and very time consuming. So, let's get it right from the beginning. FG1, PrevExp.
Parents viewed being involved from the initial stages of a project as a factor that could increase a sense of partnership and motivation to engage in the entirety of the project. This commitment and continuity, and knowledge of the work acquired over the course of a study, were considered to benefit the research. Participants also expressed a strong desire to be involved in disseminating research findings into the community in parent-friendly, "jargon-free" language. Other reported benefits were improved success in grant applications and having articles published.
In contrast to the benefits to research, participants also identified challenges to researchers of involving parents. Challenges included parents introducing agendas beyond the scope of the project, the capacity of parents to fulfil the required role, and the flexibility needed when parents experienced conflicting priorities such as caring for children who experience frequent illness. One participant stated that if a parent research partner was on a research team it would deter her from engaging as a participant in that research project due to the small size of the cerebral palsy community and her concerns about confidentiality.

Topic 2 -Parents benefit from being research partners
Topic one outlined the benefits of consumer involvement to research. Topic two captures participants' views that they can also experience benefits and personal rewards from research partnerships. Benefits included increased confidence, empowerment and self fulfilment.
It came about because of, I guess, partially because of a need for me to help myself and a, you know, a mental health situation that I found myself in because I was so upset and overwhelmed … I found that getting involved, in that I was really making a difference um, ended up, you know making me feel a whole world better. It felt like I was contributing to something that was going to make a difference um and that, in itself, was you know, something that was really needed. Interview, participant 4 (I4, NilPrev).
Participants also spoke of research partnership providing the opportunity to develop skills they may otherwise not possess.

Well, I think that being part of something that's bigger than your own situation is a good thing. And I think that it opens up avenues for greater knowledge and potential um opportunities to develop their skills which they may never have had if they weren't involved in research projects. (I8, PrevExp).
Research involvement was viewed as an opportunity to increase knowledge in the field and thereby capacity to make informed decisions about their children's health care.
Participants also reported the advantages of building relationships including networking with other parents and professionals, and that skills and confidence gained from involvement in research reduced feelings of power imbalance with medical professionals experienced in their carer role.
It gave me so much confidence, and even developing relationships with people and that high academic people who, I in my life, probably would never come across meeting … because I do think you can get so much out of those, you can develop so many skills. (I8, PrevExp).
Concurrently, participants identified a contrasting view that, despite the benefits, a research partner commitment may compete with their higher priority family responsibilities. These conflicting commitments would concern them, they would feel guilt at being unable to meet research partner responsibilities, but the family would take priority.

Topic 3 -Parents as research partners
This topic focused on parents' perceptions of how to involve parents as partners. As a whole, this topic encapsulated the considerations participants raised which researchers and parents could consider in approaching and sustaining a research partnership. The topic also harnessed the strategies suggested by participants targeting both parents and researchers. Strategies aimed to provide parents with information and confidence about being a research partner, and equip researchers with the knowledge to prepare for, involve and support parents as research partners. This topic drew together two distinct but related themes. One was about the considerations and strategies for starting research partnerships and the second focused on building and sustaining these partnerships, once established.
A common thread unifying these themes under this topic is the need for flexible involvement. Although present in both themes the thread was more prominent in the building and sustaining partnerships theme.
Participants perceived that involvement of parents as research partners required flexibility dependent upon the individual circumstances of each parent, time and priority required for their caregiver role and the unpredictable nature of their children's health.
In reality, we have all got kids that need us at different points of time, sometimes on demand and things just change. I mean, I don't know how I got here today, but I am here. FG3, NilPrev.

Theme 1 -Starting partnerships
Consideration of how to start research partnerships between researchers and parents was a clear theme in this topic. Three sub-themes capture parents' perspectives about the process of initiating these research partnerships to optimise the chances for success: "Knowledge of Research and Partnership," "Motivation to be Involved" and "The Invitation to be Involved." Sub-theme: Knowledge of Research and Partnership. The research team frequently observed participant confusion between the roles of the research participant and research partner, and some participants were unaware that roles as research partners existed.
I wouldn't have even thought. It was only when it came up as a possibility here. FG4, NilPrev.
Participants identified factors that could enhance a parent's understanding and ability to effectively contribute, including being engaged from the beginning of the project, jargon-free communications, and receiving the necessary education and support to fulfil the role.
In these areas you would need to equip parents with skills and knowledge and strategies, because none of this would come naturally. FG5, Nil Prev.
Sub-theme: Motivation to be Involved. In this sub-theme, participants identified motivators to being involved as a research partner including helping their own child, helping others and giving back to others.
I believe in the importance of adding to the body of knowledge for the benefit of others. And it is an investment in the future. I think everybody would like to think that the next family that they meet, is going to have a better experience or a better journey. FG6, PrevExp.
Other motivators included increasing their own skills and knowledge, an opportunity for income, influencing the direction of clinical practice, increasing networks, building relationships with health professionals and contributing to something bigger than themselves.
Participants also identified factors that may contribute to a decision not to engage as a research partner. These included their own perception they possessed inadequate skills and knowledge to be involved, uncertainty about the role of research partners, a sense that someone else in the community would fill the role, lacking awareness of research partnership opportunities, feeling overwhelmed with their current situation, and conflicting commitments with higher priority roles. Several of these issues indicate a need for researchers to be flexible in their partnership initiating strategies.
There would probably be not much time. It wouldn't be a priority. I  Sub-theme: The Invitation to be Involved. In the third subtheme informing the process of initiating research partnerships to optimise the chances for success, participants suggested ways for researchers to invite partnerships to enhance involvement. They recommended including a personalized face-to-face approach at a time that did not add to their already busy schedules. Other recruiting options included social media and word-of-mouth. The perception of whether a researcher or existing parent researcher/ liaison officer was the most appropriate to initiate contact was varied. Participants with previous experience as research partners indicated that invitation through a parent liaison officer increased their comfort level and self-belief in their capacity.
I think that is a very personal thing. Some people would be more comfortable if a researcher did … . others would prefer a parent. FG1, PrevExp.
Participants discussed forming parent groups and proposed these could be pre-existing organisations of parents or the development of a registry where parents who were interested in research could be invited by researchers to form a study-specific group.
I think we would need to develop a pool; skill the pool in a number of areas but keep refreshing the pool, so that you are getting different perspectives, different lived experience, different, um, perspectives on life -not necessarily on the research, but on life, so that they can bring that to the research. FG6, PrevExp.

Theme 2 -Building and sustaining partnerships
Three sub-themes emerged about the process of building and sustaining partnerships once a parent had started in partnership: "The Parent Context," "The Researcher-Parent Working Relationship" and "Acknowledgement." The flexible involvement thread was prominent in this theme.
Sub-theme: The Parent Context. Participants considered that a key contributor to a parent's ability to engage as a research partner was their family context involving multiple competing priorities. Being time poor was a common barrier amongst participants, who identified that caring for a child with a longterm condition is a role that requires a significant time commitment. Finding adequate, quality, and reliable childcare was recognized as a barrier to being involved in most activities, not just research. Participants suggested that researchers increase their understanding of the family context and requirements for parents to participate and offer flexibility to enable involvement. Other commitments impacting the Parent Context included family obligations, household management and work. A parent's geographical location and the child's stage of life (e.g., attending school or at home with full-time care) also impact on the ability to engage.
I think one thing that we all have in common is that thing called time and a lack of. I mean I will normally say yes to anything but physically, but we have no one to look after our children. FG3, NilPrev.
Sub-theme: The Researcher-Parent Working Relationship. Participants outlined factors they believed would enhance parent/ researcher relationships. These included possession of contact details for the researcher, transparent communication, receiving support in the role of research partner, encouragement for task completion, and time invested to build understanding, honesty, trust and mutually respectful relationships. Feelings of inclusion and value could be enhanced by implementing frequent and jargon-free communication, including updates about research activities even during periods when a parent is not directly involved. Once a partnership has been initiated, provision of information was recommended including clear role expectations and education about research. In addition, participants noted that flexibility enabled involvement. This could involve considering the location and timing of meetings and other activities, technological platforms for communication (e.g., telephone/videoconference, etc.), access to child care (for children with cerebral palsy and siblings), and means of remuneration.

I think a relationship is always about open communication and being very clear from the very outset on what the research project is and what the role of the parent person is so if you can … address those things before you go into it … I think if you can make it a valid relationship. FG7, NilPrev.
Participants believed that strong relationships would be forged when parents and researchers approached the relationship with a willingness to compromise, thus reducing the potential for professional and personal clashes. Participants perceived that skills needed by researchers to enable a successful working relationship include flexibility, strong communication and interpersonal skills, and creative facilitation skills so that researchers can manage consumer input which fell outside of the scope of the research. Participants suggested that researchers could impede relationships through lack of investment in equipping parents for the role (e.g., inadequate education), insufficient value placed on building relationships, an ego that results in power imbalances, and lack of respect. Participants believed that researchers could learn the skills to facilitate a good partnership.
If you have a researcher who doesn't have those skills, there's no reason why you couldn't mentor a person on how to deal with those issues and develop those skills. Not everyone is born with them and if you don't deal with them every day then you've still got to learn them so, definitely you can foster those skills and develop them. I3, NilPrev.
Participants perceived that their involvement as part of a parent advisory group to a research project or alongside other parents supported effective relationships. This could be achieved by easing the burden of responsibility from one individual to several and diffusing power imbalances. Working in parent advisory groups was also considered to have positive effects in reducing bias that may be introduced by a single parent research partner. Focus group 3 had the following discussion about parent groups operating as a school "Parents and Citizens" (P & C) committee: I love your analogy of the P & C because that works beautifully. There is always a flow in and a flow out … FG6, PrevExp.
Yeah, so as a researcher it might be better if you have 10 committed parents who could give you this much, every now and then. That might be worth developing their skill set in different areas so that they can actually … . Then they don't have to be all things to all people. FG8, PrevExp.
And you would work more collaboratively. FG4, NilPrev.
Sub-theme: Acknowledgement. The third sub-theme considered to contribute to "building and sustaining relationships" was acknowledging parents' contributions. Being acknowledged reflects a parent's position, power and value in the research team. Opinions varied on how parents might be acknowledged but generally, participants considered that acknowledgement, whether payment or other forms, should be negotiated at the initiation of the partnership. For some, acknowledgement is directly linked to payment and could increase parents' motivations to be involved in research. Others stated that acknowledgement was not necessarily linked to financial reward and that motivation to do research was more important than reward. Recognition by acknowledging parents as authors in publications was considered important by participants.
And it's not about the money; it's about your equivalence, your standing in the group. FG1, PrevExp I think there is still a place for volunteering as well, because not all parents want remuneration. FG5, NilPrev.
Participants considered that payment should reflect and acknowledge a parent's time commitment and could vary depending on the level of involvement and responsibility. Lack of remuneration could be a barrier to participation for parents who cannot absorb the costs of involvement. Participants agreed that parents should not incur any out-of-pocket expenses in the role of research partner. If remuneration was offered as a one-off token it was suggested to take the form of a gift voucher, cash or other creative rewards. Participants were aware that securing funding to provide remuneration was difficult.

Discussion
This study identified parents' perspective of facilitators and barriers to being involved as research partners with the aim of identifying strategies to promote and support involvement. Topics emerging from the data indicated that parent involvement as research partners could be mutually beneficial -that "Research is better with parents" and "Parents benefit from being research partners." A third topic, "Parents as research partners" provided insights and guidance on "Starting partnerships" and importantly "Building and sustaining partnerships." Our findings are aligned with those of other researchers, however, such findings often reflect the views of researchers rather than consumers [3,35]. Our research provides clarity around issues specific to parents of people with cerebral palsy drawn directly from the perspectives of these parents.

Mutual benefits of research partnership
"Research is better with parents" encapsulates participants' perspectives of the benefits of research when parents are involved. This viewpoint echoes the international literature and research practices that recommend and/or mandate consumer involvement under the same premise -that consumer involvement results in enhanced quality, applicability and relevance which ultimately benefits the end-users [3, 36,37]. Our team's experiences echo these findings -MT and AH, as consumer investigators, made pivotal contributions to this study, including recruitment strategies, documentation involved in seeking informed consent, quality and relevance of the interview schedule, data analysis and dissemination. Table 1 reports details of consumer involvement and impact.
Consistent with existing reports [2,5,15,38], participants perceived that "Parents benefit from being research partners." This knowledge could be included in invitations to parents to enhance motivation to start partnerships. Optimising the research partner experience and ensuring that benefits are realised are likely to build researcher-parent relationships and assist in sustaining partnerships.

Facilitating research partnerships with parents
"Flexible involvement" was a thread throughout the findings. Flexibility was viewed as integral to supporting "Parents as research partners" to be involved and contribute when it was possible to do so. Flexibility, a strategy to address several barriers to involvement, has also been identified in existing literature [3,5,38]. Barriers reported by our participants included lack of time, conflicting demands, the primacy of family commitments and unpredictability of competing demands. Flexibility is required in the methods, timing and the nature of communication; activities and responsibilities undertaken by research partners; timing of involvement; and the ability to opt-out when parents experienced conflicting demands on their time. Jull and colleagues [39] proposed "partnered negotiations," ongoing discussions between consumers and researchers to enable opportunities for consumers to be involved, with a focus on quality and equity of involvement rather than each consumer immersed in all aspects of the research.
Findings identified in the subthemes of "Parents as research partners" provided a rich understanding of facilitators and barriers to partnership, and strategies to support consumers as research partners. These findings complement existing literature [5, 15,35] and built on our understanding of starting, building and sustaining partnerships with parents of children with cerebral palsy.
The diversity of perspectives of participants who had and had not had previous experience as a research partner appeared to add richness to the knowledge informing "Starting Partnerships." Participants with previous experience were able to reflect on successful and unsuccessful strategies in starting partnerships with researchers whereas those with no previous experience could offer insights about the strategies to consider in approaching parents without experience. These contrasting experiences appeared important for informing "The Invitation to be involved." The recruitment experience is critical to get right, as parents with previous and positive research experience are more likely to continue to engage in other research projects. Respect, equity, trust, honesty and transparency are some of the foundational principles of consumer involvement which will build and sustain relationships [21,40]. Observing some participants' difficulty discriminating research participant and research partner roles in "Knowledge of Research and Partnership" was enlightening and may have reflected the presence of participants who had not had experience as a research partner. Enhancing clarity around the distinction between these roles may empower parents to start partnerships. Using an involvement matrix that details the stages of research, the potential levels of involvement and specific tasks undertaken is likely to be an effective strategy for enhancing communication and knowledge of roles and responsibility [14].
Identifying a parent's "Motivations to be involved" may influence the type of research project the parent will want to participate in. Researchers could tailor their approaches to starting partnerships to align more closely with parents' interests, experiences and preferences.
Heckert and colleagues [35] identified that it is important to focus on building and also maintaining relationships between consumers and researchers. The consistency with the themes of this study is striking. Our findings reinforced that, once partnerships have begun, "Building and Sustaining Partnerships" requires conscious effort. "The parent context" forms the foundation of experiential knowledge which value-adds to a research team. Paradoxically, this context potentially presents barriers that impact parents' capacity for research involvement. Efforts to understand "the parent context" and the incumbent challenges will enable researchers to collaborate with parents to implement strategies to address these barriers, offer flexibility around involvement, and build the kinds of relationships which will optimize the parent experience of research partnership and the impact of their involvement on research [35].
"The Researcher-Parent Working Relationship" reflects parents' clear guidance to researchers to establish good relationships and offer support and education to enable parents to fulfil the role to the best of their ability. Education and capacity-building are identified as a best practice involvement activity for both researchers and consumers [35,40]. Orientation to the research and preparation for assuming roles and responsibilities is a critical strategy to support relationships [35]. Frisch and colleagues [41] identified skills and knowledge competencies for researchers and "patient stakeholder groups" that would assist in successful research collaborations. Education for consumers could encompass the specific research the parent is involved with, research methods and implementation generally, roles, responsibilities, and promoting self-confidence and belief in parents' own contributions from the perspectives of their lived experience. The involvement of consumers is valued for the lived experience brought to the research collaboration. The type and amount of education needed and implemented should support consumers in their ability to impart knowledge and wisdom regarding lived experience and will need to be tailored for each study and for individual consumer research partners [41]. Education about research ethics and confidentiality during the induction phase is considered important, following concerns about confidentiality in relation to parents involved with a research team. Research participants may require reassurance about research team adherence to confidentiality standards. Working relationships may be enhanced by involving more than one parent and/or an advisory panel model of partnership. In addition to redressing potential power imbalance and adding to the diversity of parent perspectives, parents can offer mutual support and cover for one another during periods when unavailable.
The importance of "Acknowledgement" of research partners' contributions to projects through payment was confirmed and is consistent with other research about best practices in consumer involvement [40]. Participants in this study identified that research partner preferences and circumstances, for instance, the impact of payment on pensions, and availability of research funding will impact on the nature of acknowledgement. Clarification about the nature and means of acknowledgement at the outset of partnerships is important to avoid devaluing partnerships.
This study simultaneously studied a phenomenon (engaging parents as research partners) while implementing the phenomenon in practice (by involving consumer investigators MT and AH). From the outset, we negotiated flexible involvement whereby the consumer investigators were encouraged to be involved when they could and decline when they had competing priorities. Another example is our practice of regular communication with MT and AH even during stages in which they were not directly involved. Participants in our study and findings in existing research also highlighted this as an important strategy to sustain relationships [40]. MT and AH provided feedback to indicate that these ongoing communications increased feelings of inclusivity in the project (See Table 1).
Future research could implement and evaluate the guidance offered in this study to involve parents of children with cerebral palsy as research partners. This guidance is presented in Supplementary material and includes recommendations directed towards parents and researchers separately. Prospective evaluation of the impact of parents as research partners would illuminate their impact on the research process and outcomes of research for children with cerebral palsy and their families. Parents considered that mentorship from either the researcher or a parent was valuable; research could explore whether peer or researcher mentorship, separately or together, have an impact on building and sustaining relationships.

Limitations
Diversity of perspectives and transferability of findings may be strengthened with further studies involving parents from other networks, countries and cultures. The sample comprised parents and caregivers from only two states of Australia and all, but one participant, were women. Some diversity of perspectives was achieved as one-third of participants were from regional areas and approximately equal numbers of participants had prior experience as research partners.
New information was emerging in the final focus group indicating that data saturation may not have been achieved within the timelines of the study. Additional interviews and focus groups may have illuminated additional valuable information to inform the findings of this study.
The aims of consumer involvement are to enhance the quality of research and outcomes for people with cerebral palsy and their families; support research partners to optimise their involvement and their experience of involvement; and the experience of research participants in research. Participants in this study provided a wealth of knowledge about their perceptions of research partnership and the range of factors that influence their ability and preferences to engage as research partners. Our interpretation, distilled from the perspectives of parents of children with cerebral palsy and informed by the experiences of the research team, reinforced those of other studies and reports about principles of consumer involvement. Applying this knowledge in research practice will guide researchers and parents wishing to partner in research to develop strategies to support involvement. Cerebral palsy research now needs to progress to evaluate the processes, authenticity and impacts of consumer involvement in achieving the aims of involving consumers as research partners.