Using Human-Centered Co-Design to Develop a Hearing Wellbeing Program

Hearing loss is one of the leading causes of years lived with disability, and is associated with a range of negative social, emotional, and psychological consequences.1–3 Government-funded hearing health care in Australia is largely device-focused, and despite funding allocated for “rehabilitation” services, significant eligibility limitations, clinician factors, and a lack of claimable and efficacious programs result in few adults with hearing loss receiving any psychosocial or emotion-focused support regarding their hearing.4–9 Hearing device usage remains low and subsequently costs the government an estimated $87.4M per annum.9,10 Engagement and adherence with hearing rehabilitation is significantly influenced by psychosocial factors such as negative emotions, stigma, identity, self-efficacy, coping styles, and attitudes towards hearing aids.2,3,11,12 Between 62-81 percent of hearing service program costs could be saved if appropriate psychosocial rehabilitation was provided to adults who need it.9 Soundfair is an Australian charity that provides services and resources to promote understanding, accessibility, and support for individuals living with hearing conditions by fostering a sense of belonging, facilitating effective communication, and enabling full participation in all aspects of society.13 Recognising an existing gap in psychosocial support, the charity initiated a human-centred design (HCD) project to understand the social and emotional needs of people with hearing conditions and co-create a solution to meet these needs. HCD is a process that places the needs, preferences, and experiences of the end users at the core of the design process.14 Unlike expert-led design, which makes assumptions about stakeholders rather than consulting them during the design process leading to products that do not meet the needs of the end users, HCD recognises that consumers, caregivers, and health care professionals are the design end-users and key stakeholders in creating effective and meaningful health care solutions.15 This user-centric approach enhances the overall quality of care, improves user satisfaction, and promotes better health outcomes.16–18 A structured process of discovery, synthesis, ideation, and prototype stages form a powerful framework for HCD, ensuring that the resulting solutions are both user-centric and impactful (Figure 1).19Figure 1Figure 2PROGRAM DEVELOPMENT Beginning in August 2020, people with lived-experience of hearing conditions, hearing care providers (HCPs), psychologists, business owners, and academics attended weekly meetings led by a Soundfair facilitator using the HCD DIY Toolkit from an HCD agency.19 These stakeholders were presented with a challenge: “How might we provide engaging social and emotional support tools so that our community can thrive throughout lockdown and beyond?” In the first stage of HCD, the program design team immerses themselves in the context of the challenge, gaining insights into the target users and their challenges via a review of the research literature; presentations from two academic experts; discovery of existing resources, tools, and services for inspiration; interviews with key stakeholders (seven people with lived experience and three HCPs); and the lived experience of the design team. SYNTHESIS After data is gathered and collated in the discovery stage, patterns are identified, and key themes and user insights are extracted.19 Eight stakeholders in the design team participated in three rounds of synthesis in a group workshop. All data points were initially clustered into 10 groups that shared similar information, and the design team was asked to generate “It seems like…” statements that were representative of the information collected. Similar statements were collapsed to extract insights into the experience of end-users. The synthesis phase allowed complex information from lived experiences, interviews, literature review, and inspiration discovery to be summarised into 17 insight statements used to inform the design solutions (Figure 2). These insights revealed that people with hearing conditions are socially and emotionally affected and want their psychosocial needs to be heard, understood, and validated. Unfortunately, the opportunity to hold these conversations with their HCP is rarely made available. HCPs do not always feel comfortable or skilled in having these types of conversations, and they do not feel they have the time or funding to provide the support required. Many participants reported that they would not consider going to a psychologist, even if they admitted being in distress due to their hearing condition, but they would talk to their HCP. Others who did go to a psychologist reported that the therapist often did not understand the magnitude and breadth of the impacts of their hearing condition. There are limited online self-paced education or telehealth services specifically for the psychosocial impacts of hearing conditions. The insights gained from this process confirmed that there is a need for psychologically informed programs and resources delivered with a hearing conditions lens. “My audiologist understood my hearing problems and fitted me with hearing aids, but I was still dealing with the grief of my loss and the anxiety of not being able to hear well at work. So I went to a psychologist, but they didn’t get it (my hearing loss).” SOLUTIONS The design team began to explore solutions to the specific challenges outlined in these insights. Creative thinking techniques, such as brainstorming sessions, sketches, and concept development workshops, generate potential solutions. The original challenge was further refined: “How might we provide a flexible space for individuals with hearing conditions and their families to feel heard and validated in their experiences, and guide and support their own understanding of the psychological impacts and/or develop their own self-knowledge so that they can participate in things they value?” Ideation commenced with two 10-minute rounds of individual brainstorming. Individuals in the design team then collaborated to generate 138 additional solutions. They were asked to vote on preferred ideas, group similar ideas together, and ensure that all summarised ideas remained aligned with the scope of the challenge. The facilitator encouraged the design team to continue distilling ideas until no more than five themes remained: A solution will make use of creative and interactive components (e.g., digital interactivity, art, activities, videos, photos) to evoke user reflection and self-efficacy. A solution will provide opportunities for users to share experiences and insights from the resources with other people (e.g., via peer support groups, online forum, shared activities). A solution will enable the user to share their story one-on-one with someone who understands and validates their experience. A solution will fill the gap between a psychologist and/or HCP for the user to talk about the social and emotional impacts of hearing conditions. A solution will help HCPs to offer social and/or emotional support in a way that does not significantly deviate from standard practice by making it simple and guided or enabling the program to be client-led. INITIAL PROTOTYPE Finally, tangible representations of the design ideas are created. The team was tasked with designing an umbrella concept that incorporated all five of the themes, ultimately resulting in a hearing wellbeing program. The proposed solution was an online, self-guided, self-paced program. Due to budget constraints, however, the initial prototype was designed to be an in-person and paper-based hybrid program. This program was then produced with the expertise of psychologists and HCPs and iterated by the design team. The hearing wellbeing program is a suite of 10 self-guided modules developed to provide guidance on, and an understanding of, the common psychological experiences of those with hearing conditions. The module topics were informed by the social and emotional themes raised throughout the discovery and synthesis phases (lived experience, research, stakeholder perspectives): Acceptance and hearing conditions Anxiety and hearing conditions Confidence, self-efficacy, and hearing conditions Grief and hearing conditions Identity and hearing conditions Loneliness and hearing conditions Low mood and hearing conditions Relationships and hearing conditions Respectful communication and hearing conditions Stigma and hearing conditions The first iteration of the hearing wellbeing program commences with an initial consultation in-person or via telehealth, where the HCP learns about a person’s experiences, challenges, and goals related to their hearing condition. The HCP facilitates the selection of appropriate modules and supports progression through the program, but the self-guided resources, activities, and reflections themselves are designed to be self-administered, self-paced, and flexible. Each module contains an explanation of the topic, its relevancy to the participant, troubleshooting for potential roadblocks, strategies to address potential challenges related to the topic, and guidance on when and how to seek additional support. The content of each module reflects the scientific literature relevant to managing hearing conditions and the current best-practice in psychological therapy. The hearing wellbeing program includes a companion guide for the HCP to introduce them to the program, to help them understand the role of empathetic listening and counselling skills, and teach them how to facilitate the program modules. It also contains a client questionnaire to support the HCP’s decision on which modules may be the most appropriate to recommend to the client and when to refer to a psychologist. The companion guide aims to address HCPs reported barriers to providing psychosocial support.4,5,7,8,12 Initial piloting of the hearing wellbeing program was conducted to gather preliminary desirability data prior to investment in digital production. One HCP with additional training in counselling strategies conducted the pilot with five people living with hearing loss. Three of these appointments were conducted via telehealth and two were completed in-clinic. Informal feedback interviews were conducted with participants following their appointment. Interviews revealed that the program was suitable, with participants stating that the education and strategies provided for social and emotional management of hearing loss were relevant to them and they could see how they would be helpful. Feedback was also sought from people who enquired about the service but chose not to participate. Non-participants reported that the time investment and cost of the service was a significant barrier for uptake. Feedback from the initial pilot was consistent with insights gained throughout the HCD, that a self-guided, low-cost, accessible digital intervention is desirable. CONCLUSION Given these insights, and the limitations in training HCPs to confidently implement a program that incorporates an in-person counselling component, our focus has returned to the online program. Soundfair, in collaboration with the University of Melbourne, has now received a grant to translate this program into a digital version, which will improve accessibility and reduce cost for users. This research project will use further HCD to develop the digital program and a subsequent feasibility and randomised controlled trial will assess the efficacy of the intervention.