Co-design of the Spinal Cord Injury Health Maintenance Tool to Support Self-Management: A Mixed-Methods Approach

Abstract

Background:

There is a lack of consumer-friendly tools to empower and support people living with spinal cord injury (SCI) to self-manage complex health needs in community. This article describes the co-design process of the new SCI Health Maintenance Tool (SCI-HMT).

Methods:

Co-design of the SCI-HMT using a mixed-methods approach included a rapid review, e-Delphi surveys with range of multidisciplinary health care professionals (n = 62), interviews of participants with SCI (n = 18) and general practitioners (n = 4), focus groups (n = 3 with 7, 4, and 4 participants with SCI, respectively), design workshops with stakeholders (n = 11, 8), and end-user testing (n = 41).

Results:

The SCI-HMT (healthmaintenancetool.com) was developed based on participatory research with data synthesis from multiple sources. Five priority health maintenance issues for bladder, bowel, skin, pain, and autonomic dysreflexia were originally covered. Best practice recommendations, red flag conditions, referrals, and clinical pathways were agreed on through an e-Delphi technique. Qualitative analysis identified six broad key concepts for self-management, including early symptom recognition, role of SCI peers, knowledge sharing with primary care, general practitioners as gatekeepers, and shared decision-making and highlighted a need to place much stronger emphasis on mental health and well-being. Design workshops and end-user testing provided key insights about user experience, functionality, and content for the SCI-HMT.

Conclusion:

The co-design process engaging end users, including people with SCI and general practitioners, enabled a shared understanding of the problem and identification of important needs and how to meet them. Informed by this process, the SCI-HMT is a freely accessible resource supporting SCI self-management, shared decision-making, and early problem identification.

Introduction

Spinal cord injury (SCI) can result from either a traumatic injury or a nontraumatic disease or disorder, and it impacts health, daily functioning, social participation, and quality of life.¹ With an increased survival after traumatic SCI, the population with SCI has grown over the last 30 years.² During this period, there have been notable advances in understanding the pathophysiology following injury; however, there is still complexity and challenges in developing targeted management strategies.³ Although historically SCI occurred mainly in a younger population, this demographic pattern has now shifted in high- and middle-income countries toward a bimodal pattern with greater proportion of injuries occurring in older individuals.^2,4 Consequently, people living with SCI commonly experience secondary health conditions compounded by preexisting comorbidities and/or the effect of premature ageing.⁵ In addition to age, secondary health issues vary in type, frequency, and severity depending on level and extent of neurological impairment, associated comorbidities, sex, and other psychosocial factors.⁶ Secondary health conditions are associated with increased rates of rehospitalization,^7,8 poor social participation,⁹ decreased quality of life,⁵ reduced life expectancy,^6,8 increased psychosocial distress,¹⁰ and high levels of cognitive impairment.¹¹ At the same time, shorter postacute rehabilitation length of stay² has placed greater reliance on primary health care services, including general practice and community care services.¹²

Earlier collaborative work emphasized the cornerstone position of general practice, whereby Mann and colleagues¹³ in 2007 proposed a strategy for integrating SCI management into primary health care practice. It is clear that the capacity of general practitioners (GPs) or family doctors to manage growing numbers of individuals living with disability is adversely impacted by lack of access to best practice guidelines and tools that support clinical decision-making.¹⁴ Very low prevalence rates of SCI per GP practice limits acquisition of specific knowledge and skills.¹⁵ Research highlights that to optimize care for a person with SCI in typical primary health care settings, novel approaches that make full use of technology are urgently required.^13,14,16 Examples include point-of-practice tools to create care plans and enable easier communication between services, including referral back to tertiary care. Ideally, individuals with SCI are discharged into the community with both the self-management skills required to prevent secondary complications and the technological resources to facilitate those skills.^16–18 Such an approach might result in earlier identification of red and/or yellow flags and provide cues to facilitate discussion about relevant physical and psychosocial issues needed to make collaborative decisions about appropriate care.¹³ There is an urgent need for suitable educational and self-management resources that provide reliable, evidence-based, and easy-to-understand health information in Australia and elsewhere.

Therefore, the purpose of this article is to describe the co-design process and development of the new SCI Health Maintenance Tool (SCI-HMT) for people with SCI and their primary health care providers to promote better self-management and early identification of problems needing clinical support or intervention. The SCI-HMT functions as a guiding toolkit to enhance self-management within the community. To our knowledge, no comparative resource exists, particularly for people with SCI living in geographically isolated rural or remote areas of NSW and Australia.

Methods

The project used a mixed-methods approach, convergent transformative design, supported by the pragmatic belief that multiple paradigms can be used to address research problems and that research efforts should be orientated to solving practical problems in the real world.¹⁹ This project employed a co-design approach whereby the research was conducted with numerous stakeholders and actively involved people with the lived experience of SCI and GPs throughout the conduct of the research.²⁰ The project received ethical approval from the Northern Sydney Local Health District Human Research Ethics Committee, reference AU/1/4416312.

The study involved both a quantitative and qualitative component, followed by data transformation with co-design and development of the digitalized version and sixth module on mental health (see Figure 1).

Figure 1.

Overview of the phases of SCI Health Maintenance Tool (SCI-HMT) co-design and development.

Data were collected from (a) a rapid review for existing self-management programs or tools, (b) a Delphi survey of health professionals from SCI and other related fields, (c) one-on-one interviews and focus groups with people with SCI and primary health providers considered nonexperts in SCI care and rehabilitation, (d) design workshops, and (e) user testing. The participant details for the different phases of the project are presented in Figure 1.

Rapid review

A rapid literature review²¹ was undertaken to identify similar tools and interventions available either locally or internationally and to identify existing guidelines and evidence from latest literature reported in clinical research and systematic reviews. Key theories for informing development of the SCIHMT were also identified. The following search terms were used to identify relevant literature: self-management*, self-efficacy*, self-directed learning*, health promotion AND/OR spinal cord injury AND/OR participation, disability studies, primary health care. The following databases were searched: PubMed, MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Scopus, Web of Science, Science Direct, Sage Journals online. Excluded were studies concerning acute management and subacute rehabilitation immediately following SCI.

e-Delphi survey

The e-Delphi survey was conducted electronically, involving SCI clinical experts and other relevant topic experts utilizing recommended Delphi methods for developing clinical consensus statements.²² Information was collected and managed using a secure web-based research electronic data capture (REDCap) platform. A range of health care professionals from different specialties and disciplines were included; they had expertise and experience in managing people with SCI across the continuum of care. The data for the Delphi survey were analyzed using a consensus-building process to reach agreement on management recommendations, red flag conditions, referrals, and clinical pathways.

Interviews and focus groups

In-depth interviews and focus group discussions were conducted to capture the lived-experience dimension from both people with SCI and GPs. The interview focused on participants' experience and their essentials for maintaining optimal health and well-being following SCI. The questions asked were open-ended, and the interviewer explored and further clarified the information provided by the respondent. Semi-structured interviews were audiotaped with consent, transcribed, and then returned to each participant for review, correction, or addition of points where necessary, prior to finalization for analysis. The content of interviews included information related to priorities for health and well-being, perceived health promotion needs, health beliefs and self-management behaviors, health literacy, health service providers, key influences in health decision-making, and barriers and facilitators of health maintenance. In addition, the interview explored the design, characteristics, and navigational features for the health maintenance tool. Focus group discussions were undertaken to explore and elucidate key health-related issues, priorities and challenges for health maintenance, the role of health service providers, influences for health decision support, overcoming identified barriers to optimal health maintenance, and refinement of the tool and its features. Data from the interviews and the two focus group discussion rounds were analyzed using NVIVO 12 and reflexive thematic analysis according to Braun and Clarke.²³ The methods for this qualitative arm of the first phase are detailed elsewhere.²⁴

Design workshops

Two workshops were undertaken involving people with SCI, health care professionals (including a GP), funders' representatives, and expert developers. The purpose of the first workshop was to build a deeper understanding of the users and their needs of the tool and to define the key problems to be solved by the tool and outline the key considerations for the user experience. The second workshop delved into functionality and content considerations for each module, for example, search functions, data capture, and personalization.

User testing

The user testing of the digital version of the SCIHMT was undertaken by people with SCI and their family members, as well as by health care providers (including case coordinators/managers). The user testing included a set of pop-up questions prompted on the website, different health scenarios, and a final survey. The user testing provided the website developers with important feedback on how end-users interact with the navigation and their use of different features, tools, and interactivity to find the information they were looking for. The user testing took between 50 and 60 minutes to complete.

Results

The booklet version and digital solution of the SCI-HMT were released in April 2020 and May 2023, respectively. (Access the freely available resource at healthmaintenancetool.com.) The SCI-HMT was developed using the following mixed methods.

Rapid review

The key findings from the literature based on the broader topics of self-efficacy and self-management for people with SCI are shown in Table 1. In total, eight studies were identified.^{16–18,25–29} The relevant literature commenced with Bandura's work on self-efficacy,²⁹ which is also referred to as an important aspect in more recent publications specific to SCI.²⁵ Self-management programs specific to the lived experience of SCI included the characteristics of delivery and suite of components,¹⁶ with peer-led intervention¹⁶ and technology emerging recently as a strong medium for delivery.^17,18 Of particular interest were the identification of six interventions for the promotion of skin care and SCI based on social cognitive theory, covering the fundamental requirements for individuals with SCI.^27,28

Table 1.

Key findings from rapid review

Source	Topic	Description	Key findings
Allin et al. (2018)17	An internet- mediated selfmanagement program for people with SCI	Used a participatory design process to develop program	Stakeholder engagement indicated that participants felt more confident with information received from trusted, in-person sources than information found online.
Bandura (2007)29	Self-efficacy – broader topic	Highlights four main sources of influence on self-efficacy to consider when designing self-management programs	Mastery experiences play a critical role in the establishment of self-efficacy, along with vicarious experiences, social persuasion, and emotional states.
Baron et al. (2018)27 Baron et al. (2018)28	Self-management of skin care for SCI	Systematic review of self-management interventions for skin care in people with SCI with behavior theory coding	Behavior change techniques guided the intervention design in six interventions, including three commonly used in health research (Health Belief Model, Social Cognitive Theory, and Transtheoretical Model).
Houlihan et al. (2017)26	Peer-led, telephone- based self-management intervention	Single-blinded randomized controlled trial evaluating impact of a peer-led, telephone-based health self-management intervention (“My Care My Call”) in adults with chronic spinal cord injury (SCI). A larger multisite trial is now needed.	Trained peer health coaches applied the person-centered health self-management intervention, leading to increased health activation. This shows promise as a model for increasing knowledge and encouraging self-management behavior.
Mortenson et al. (2019)22	SCI self-management – with reference to Bandura's self-efficacy theory	User-centered design approach using an evolving mobile app and the collection of prospective qualitative data from three stakeholder groups: individuals with SCI during inpatient rehabilitation, formal and informal carers	These authors suggest mobile app advances have much to offer self-management individuals with SCI. Iterative evaluation process produced three requirements of a mobile app for self-management: (1) user friendly and individualized, (2) goal directed, and (3) encouraging of leisure activities to facilitative community participation.
Munce et al. (2014)16	Self-management based on the lived experience of SCI	Draws attention to characteristics of program components, including mode of delivery (e.g., internet-based vs. in-person, telehealth, other), format (e.g., one-on-one, individual, group), construction (e.g., similar level of injury, age, gender, etiology), and timing (e.g., acute vs. inpatient rehabilitation, transition into the community)	Important components of a self-management program were identified to include exercise, nutrition, pain management, and confidence (in reducing secondary complications/ promoting wellness).
Newman et al. (2019)25	SCI self-management intervention for online and telehealth delivery	Used a community- engaged research approach. These authors used tablet computers (iPads), an online content management platform (iTunes U), and video conferencing (FaceTime)	Participants indicated a clear preference for interactive and multimedia platforms to promote engagement with educational materials and the use of FaceTime to facilitate contact between the participant and the peer navigators.

Identified self-management tools designed specifically for people with SCI that were available either locally or internationally are provided in the eTable. At the time, nine SCI-specific initiatives had been published across six countries: three from the United States, two from Australia, and one each from New Zealand, Switzerland, Sweden, and Canada.

e-Delphi survey

Sixty-two experts (SCI and other relevant experts) completed the Delphi surveys for the bladder, bowel, and skin. Relevant experts refer to medical, surgical, or health professionals of other disciplines who are highly skilled in a specific and restricted field working in a multidisciplinary team, such as a urologist and continence nurse consultant for the bladder e-Delphi survey or wound consultant for skin e-Delphi survey. The characteristics of the e-Delphi survey participants and their practice profiles are reported in Table 2. The data for the Delphi survey were analyzed to show consensus on the management recommendations, red flag conditions, referrals, and clinical pathways. The topics identified for inclusion were (a) bladder and its associated problems, (b) bowel and its associated problems, and (c) skin and its associated problems. Sufficient expert local guidance already existed in relation to pain and autonomic dysreflexia.

Table 2.

Delphi survey participants and their practice profile

Theme	Bladder and its associated problems	Bowel and its associated problems	Skin and its associated problems
Participants, n
SCI experts	24	15	36
Other relevant experts	13	10	18
Number of Delphi statements, n	42	36	61
Delphi round 1, n
Statements with complete agreements	7	13	20
Statements with partial agreements (>85%)	28	19	37
Statements with partial disagreement (<15%)	7	4	4
Delphi round 2, n
Statements with complete agreements	5	3	4
Total number of deleted statements	2	1	0
Profession, n (%)
Specialist (including Urologist)	2 (5.4)	—	—
SCI specialists / rehabilitation physicians	22 (59.5)	14 (56.0)	14 (25.9)
Clinical nurse consultant	5 (13.5)	4 (16.0)	10 (18.5)
Nurse	2 (5.4)	1 (4.0)	1 (1.9)
PT/OT	—	—	18 (33.3)
Dietician	—	—	3 (5.6)
Other	6 (13.5)	6 (24.0)	8 (14.8)
Practice setting, n (%)
Public hospital	25 (67.6)	18 (72.0)	34 (62.9)
Private hospital	2 (5.4)	—	—
Private practice or clinic	5 (13.5)	2 (8.0)	5 (9.3)
Community health	4 (10.8)	4 (16.0)	12 (22.2)
Other	1 (2.7)	1 (4.0)	3 (5.6)
Years of experience, n (%)
5 years or less	8 (21.6)	6 (24.0)	6 (11.1)
6 to 10 years	6 (16.2)	3 (12.0)	6 (11.1)
11 to 15 years	3 (8.1)	2 (8.0)	7 (13.0)
More than 15 years	20 (54.1)	14 (56.0)	35 (64.8)

Note: PT/OT = physical therapist/occupational therapist

Interviews and focus groups

In total, 12 interviews with participants with SCI, 4 interviews with GPs, and 2 SCI consumer focus groups (with n = 7 and n = 4, respectively) were conducted. Participant characteristics are provided in Table 3.

Table 3.

Descriptive summary of participants living with SCI

Participant characteristics	People with SCI (n = 19)
Age, years, mean (SD)	50.2 (14.9)
Male, n (%)	10 (53)
Marital status, n (%)
Single	4 (21)
Married	8 (42)
Cohabiting or in a partnership	3 (16)
Divorced or separated	4 (21)
Widowed	—
Education, n (%)
Primary school or lower secondary	2 (11)
Higher secondary	1 (5)
Post-secondary or short tertiary	4 (21)
Bachelor, Masters, or equivalent	12 (63)
Time since injury, years, mean (SD)	20.0 (15.6)
Paraplegia, n (%)	7 (37)
Complete injury, n (%)	9 (47)

Key concepts arising from analysis of thematic coding are shown in Figure 2, with several sample quotes provided to emphasize the narrative content. Notably, the data drew attention to a significant gap from the lived experience perspective, highlighting a need to place far greater emphasis on one's mental health and well-being. The results from the qualitative analysis are reported in detail elsewhere.²⁴ Examples from the narrative include the following:

Figure 2.

Summary of themes derived by qualitative analyses of data from interviews and focus groups.

Initially keeping well was really tough – you need to lean on your GP and your supporters. The first 2-3 years is probably the toughest year to get your head around the learning stuff, the year 2 to year 3 is tough because you've got to a stage where you're leveling out, and you've kind of made these promises to yourself and then you realize that there's no quick fix. [Person with SCI, focus group 2]

We GPs are time poor — if you realize then when you're time poor you look quickly to say oh this is a patient tool - how can I best use this? Can I use this for the Care Plan? It is the information for patients. Do I know it or not? And if don't know it [the information] your patients need then you realize how far backwards you are. A health maintenance tool can help hugely with this. [General practitioner, interview series 2]

Workshops

Two distinct workshops were undertaken separated by a period of 10 days, involving 11 and 8 participants, respectively. Three key user categories were identified for people with SCI through which to tailor the user experience of the tool. These categories took into consideration differing levels of impairment and functioning, including physical, cognitive, and emotional facets, and how these may affect a person's readiness and capacity to manage their health and well-being. These categories included people with SCI who can self-manage independently, people who can self-manage with some support, and people who require a more directive approach to their care. Key insights were also identified as ways to design and enhance the content delivered in the booklet version of the SCI-HMT through development of the digital solution (see Figure 3).

Figure 3.

Key insights identified during the design workshops.

User testing

In total, 41 end-users participated in the user testing of the digital version of the tool, including people with SCI (n = 20), family member or a carer (n = 3), and health care providers (n = 18). Ninety-one percent of end users found the tool useful. Ninety-seven percent of end-users said that it was very easy to find information that they were looking for. A large array of web browsers was used during the user testing, demonstrating the site was usable on various platforms without technical issues being experienced. Microsoft Edge and Chrome were used by most end users (72.5%). The website features that were used most by the end users are shown in Figure 4.

Figure 4.

Website features with highest usage during the user testing (in %).

Discussion

This article describes the development of an innovative resource, the SCI-HMT, through a co-design process, engaging people with SCI, service users, GPs, specialized multidisciplinary SCI team members and researchers and balancing expertise, experience, and power to elicit unique insights and vital perspectives. The SCI-HMT was co-designed to assist individuals with SCI and their primary health care providers to enable self-management and early identification of a need to seek clinical support for intervention. The need for such an evidence-informed resource to support shared decision-making around complex health issues was highlighted recently by research showing the association between quality of life and burden of secondary health complications in people with SCI.^30,31 Data were synthesized from a variety of activities, including a rapid review, e-Delphi survey, interviews, focus groups, and creative workshops conducted with end users with the lived experience of SCI and primary health care providers. Of utmost importance during each phase throughout the entire project was the emphasis on employing a co-design process involving genuine, multi-method consultation with meaningful engagement of a diverse stakeholder group and iterative loops and levels of decision-making. This process ensured the voices of individuals living with SCI and primary health care providers were incorporated into design and development of the credible, relevant, and user-friendly SCI-HMT. This key insight is important for future research and development of similar resources and programs, providing guidance and strategies for how researchers could interact effectively and efficiently with stakeholders to fully engage in hearing the lived experience voice.

We know that traditionally, end users or “patients” have rarely been positioned as key decision-makers or innovation implementers^32,33 and consequently have not often been included in the application of research using frameworks. In 2022, Grindell et al.³⁴ reflected that bringing people together as active partners, valuing all forms of knowledge, and using a creative approach with flexible, iterative prototyping techniques can enable a shared understanding of the problem and identify important needs and how to meet them, thereby balancing power and voice, offering a sense of ownership, and engendering trust and confidence in co-created outputs.

Others have also shown the importance of using a participatory iterative design approach engaging and empowering people with SCI (end users) as co-designers, co-developers, and key informants for designing and prototyping solutions to promote education and/or self-management after SCI.^17,25,35 For example, to help fill the need for high-quality online self-management support, a team of Canadian researchers, including the lead researcher with lived experience,³⁵ co-created multimedia patient education resources (five short e-courses) for people with SCI. The five topics included advocacy, engaging community resources, and staying healthy through skin, bladder, and bowel care, with future topics including wheelchair skills, pain, sexuality, fertility and parenting, and physical activity. These authors later extended this online service to include peer-led self-management support.¹⁷ The researchers summarized benefits of co-design/co-development, which included elicitation of diverse accessibility considerations (e.g., use of online video vs. text, mobile devices vs. PCs), prioritization of features and identification of core design concerns (e.g., quality/credibility of online information), and co-design of acceptable strategies and techniques to mitigate identified concerns (e.g., community ratings and reviews, access to online information navigators).

The systematic provision of education and support by health care staff to increase practical self-management skills and confidence of people with SCI in managing their health problems is fundamental for rehabilitation. Existing self-management tools were found to contain contemporary, easy-to-understand information from trustworthy sources on a range of common health and lifestyle issues for empowerment and choice, with support from the health care team. Review of relevant literature highlighted that social cognitive theory was commonly used as a framework to guide self-management interventions for behavior change. Interactive and multimedia platforms may promote engagement with educational materials. In 2019, Mortenson et al.¹⁸ developed a mobile app through an iterative design process involving input from end users to facilitate self-management following SCI, which consisted of 18 tools focusing on common conditions, goal setting, tracking various health aspects (e.g., bladder, bowel, fluid intake, medications, vital signs), and identifying confidence regarding components of self-management.

The SCI-HMT not only provides comprehensive information for age-appropriate education with easy-to-understand language (readability grade 8) but also contains evidence- and theory-based features incorporating models for health behavior change, including social cognitive theory,³⁶ stress appraisal and coping,³⁷ transtheoretical model,³⁸ and health beliefs.³⁹ Features include screening tools (quick health checker), symptom trackers/diaries, goal-setting programs, collaborative care plans, toolboxes of self-management strategies (for bowel, mental health, pain, and pressure injury), quick self-management and prevention tips, and prompts (red flags) for when to seek further medical attention and advice at the right place and time. This tool has been written through the lens of a person with SCI, so individuals can learn what they need to do to stay well and have a selection of choices and actions to take when health issues arise. The tool helps to identify levels of risk and warning signs (potential red flags) and provides advice about when to self-manage in the first instance or seek assistance from an appropriate health care professional, based on severity of symptoms and level of functional interference. Statewide health management recommendations and clinical pathways have been implemented within the tool that were developed through expert consensus (e-Delphi) process. Navigation can help individuals decide if they require prevention strategies because they're tracking well, or, if there is an issue, what the cause might be and how to deal with it. This type of problem-solving can support individuals to proactively manage their own health risks, which in turn improves self-management skills, builds confidence, and strengthens self-efficacy to manage future problems better.⁴⁰ Importantly, efforts should be directed toward early prevention of secondary health conditions to reduce the long-term disability burden of people with SCI.⁴¹

The majority of people with SCI (about 65% to 70%) do not develop a diagnosable mental health condition, however, many would benefit from psychological support for positive adjustment and coping with loss and grief, dealing with stressors, and facilitating posttraumatic growth and community reintegration following SCI.^10,42 Therefore, the necessity to place a greater emphasis on mental health and wellness was understandable, resulting in the conception of an additional module focusing on mental health. A detailed consumer engagement process with iterative reviews and feedback ensured that the mental health module, initially drafted by health professionals (A. C., J. W. M., and others), was fittingly modified so that the content was comprehensible, suitable for people's different circumstances, and maintained a strengths-based orientation while recognizing that serious mental health challenges can still arise. Notably, this process was overseen by a researcher with SCI lived experience (J. B.). A second key insight for future research and development of resources and programs to promote self-management is the central role that mental health plays.

McColl et al.¹⁵ highlighted that a robust system of primary care is the best assurance of good health outcomes and reasonable health service utilization for people with SCI. They noted that while people with chronic and disabling conditions like SCI make up only a very small percentage of society, they comprise some of the highest primary health care users, often presenting more complex and challenging problems with which a GP may be unfamiliar and consuming a disproportionate amount of practice resources. In 2020, Milligan et al.⁴³ highlighted similar challenges for managing patients with SCI in primary care settings and recommended a shared care approach with primary care physicians screening for health issues and then consulting with specialists as necessary, which should also include interprofessional involvement for some care components. Further, high rates of emergency department (ED) presentation for low acuity and potentially preventable conditions suggest that the ED is being used as an inappropriate substitute for primary care for individuals with traumatic SCI up to half of the time.⁷

The process of maintaining optimal health, functioning, participation, and quality of life over the lifespan for people with SCI incorporates elements of health promotion and prevention, including routine screening for surveillance and monitoring, early detection strategies, and treatment and/or referral. As pressure on our health systems grows such that all health needs cannot be met equitably with a rising threshold for receiving care, the demand for self-management tools becomes more urgent. Importantly, the contribution of the lived experience voice echoed that good health provides the bedrock for a full and rich life with SCI.

Limitations

This study has certain limitations. Firstly, a potential criticism is the relatively small sample size of participants that may not allow for saturation or generalizability of the findings. However, it was never our intention to reach saturation nor generalizability, as we felt neither were congruent with the aims of study nor are an essential requirement of robust qualitative research. Indeed, the concept of saturation has a variety of forms and applications, each with specific parameters (e.g., theoretical, thematic, data, or meaning), and its application without a clear justification can be at best ambiguous and at worst misguided.²⁰ Instead, our intent was to conduct a co-design, mixed-methods approach with a variety of relevant participant groups to inform the development of a new SCI Health Maintenance Tool for people with SCI and their primary health care providers. As such, our sampling strategies were theoretical, criterion-based, and purposive, with participants deliberatively targeted because of their role, competence, and context-specific knowledge of issues surrounding self-management after SCI. The participants represented key perspectives, rather than a population.^20,44 Secondly, rapid reviews are, by their nature, more rapid than other types of research synthesis and can therefore lack the detail provided by traditional systematic reviews, although they generally lead to similar conclusions.²¹ Thirdly, the SCI-HMT is not a comprehensive tool covering all health-related issues for self-management, but it targets six of the most important components of SCI care identified for inclusion in a point-of-practice toolkit to facilitate primary care for persons with SCI.⁴³

Future research directions

This study characterized the co-design process for developing the SCI-HMT. Efforts will now focus on the implementation of the tool into practice as well as its evaluation. Considerations for implementation include community awareness, training and capacity-building, readiness, health literacy spectrum, learning styles, timing, care settings, format and delivery modes, blended learning models (e.g., involving support of peer mentors and health coaches),^17,26,45 and partnering with relevant professional bodies (e.g., College of General Practitioners and Primary Health Networks), care agencies, and funders. Essential future work will require close collaboration with GPs to link the SCI-HMT interactive components (e.g., care plans, diaries, health checkers) with patient management systems (such as Medical Director software), ensuring easy accessibility and utility. Several other priority issues were identified for future module development, including the important topic of sexuality, including pleasure and identity, and physical activity. Evaluation will assess user satisfaction and effectiveness of the SCIHMT to change provider or patient knowledge and self-management behaviors (e.g., self-efficacy) and in turn to evaluate whether these may lead to better outcomes (i.e., reduced incidence/severity of secondary health conditions and lower health service utilization).

Conclusion

The SCI-HMT was developed through a co-design process to support self-management of the most common and often avoidable complications associated with SCI. It provides a consistent, evidence-based framework for individuals with SCI to follow in relation to their specific health maintenance needs, including contemporary emphasis on mental health and wellness.

Funding Statement

Financial Support The SCI Wellness Project was a collaborative project between John Walsh Centre for Rehabilitation Research at The University of Sydney and Royal Rehab. Both organizations provided in-kind support to the project. Additionally, the University of Sydney and Royal Rehab received research funding from Insurance and Care NSW (icare NSW) to undertake the SCI Wellness Project. icare NSW do not take direct responsibility for any of the following: study design, data collection, drafting of the manuscript, or decision to publish.