Background Patient reported experience measures (PREMs) are widely used as key indicators of value in healthcare towards improved services but are rarely applied among people with intellectual disability. Incorporating the experiences of people with intellectual disability in PREMs data is vital as this group often encounter poor healthcare access and outcomes. This study reports the coproduction of accessible PREMs for people with intellectual disability from a 3-year inclusive research project called Listen to Me.Objective To coproduce a PREM suitable for people with intellectual disability.Method Co-production occurred through inclusive data collection methods in five hybrid co-production workshops within an inclusive research project structure. Preliminary user testing of the Listen to Me PREM was conducted via semi-structured interviews using the 'think aloud' method.Results Co-production included two people with intellectual disability, six people who support family members with intellectual disability, three researchers and three people with experience health service management or direct care. Preliminary user testing was completed by 11 people with intellectual disability with a range of communication needs and preferences. The resulting 9-item Listen to Me PREMs are digitally-enabled tools that include accessible features, such as large font and audible options to enable completion directly by people with a range of communication approaches.Conclusion The Listen to Me PREMs provide an innovative tool to capture patent-reported experiences directly from people with intellectual disability. By applying tools such as the Listen to Me PREMs, health services are better equipped to identify opportunities for improvement, to enhance access, quality and outcomes in health care delivery for consumers with high healthcare needs.Patient or Public Contribution People with diverse abilities and communication preferences have been engaged both as members of the Listen to Me research team, and in all elements of data collection. The Listen to Me project has grown from a collaboration with consumers and all elements of this research engage with a diverse consumer group. The CanEngage Consumer Leadership Group (CLG) is central to all research activities including governance, data collection, analysis, preparation and dissemination of findings. The CLG has eight members, two members have intellectual disability and six are parents or siblings who support family members with intellectual disability to access health care. The CLG were involved in the design of the research proposal, reviewing and contributing to the ethics protocols, the coproduction of the Patient reported experience measure (PREM) and as authors of this paper. People who support family members with intellectual disability to access healthcare were involved in constructing and editing the paper. Two people with intellectual disability were involved in reviewing the accessible summary of the paper and provided feedback on clarity. Some authors are family members of people living with an intellectual disability. These family members are crucial advocates for people with a severe intellectual disability who do not have the capacity or capability of communicating using speech or writing.
Background Parents of adolescents facing suicidality play a crucial protective role, but often feel overwhelmed. The Partners in Parenting Plus – Suicide Prevention (PiP-SP+) programme is a co-designed, coach-supported, online parenting programme aimed to empower parents within their carer role to manage their adolescent’s suicide risk. Aims To evaluate PiP-SP+’s acceptability, feasibility, validity and short-term effects. Method Fifteen parents of adolescents aged 12–18 years, concerned about their adolescent’s suicidality, participated in an open-label, non-randomised uncontrolled trial. Parents (n = 11) completed semi-structured interviews, exploring the programme’s acceptability, feasibility and validity. Thirteen parents completed quantitative assessments of parental self-efficacy to respond to adolescent suicidality and non-suicidal self-injury, protective parenting behaviours, carer burden, parental distress, mental health support quality, family functioning, and adolescent anxiety and depressive symptoms at baseline and 120 days post baseline. Finally, nine adolescents of the participating parents self-reported anxiety symptoms, depressive symptoms and perceptions of parental support at baseline and 120 days post baseline. Results PiP-SP+ was an acceptable, feasible and valid intervention for parents. Significant baseline-to-post-intervention improvements were observed in parents’ self-efficacy to respond to adolescent suicidality and non-suicidal self-injury, protective parenting behaviours, carer burden, parental distress and mental health support quality. No significant differences were reported in family functioning. Adolescents perceived increased parental support; both parents and adolescents reported reductions in adolescent anxiety symptoms. Although parents reported a significant decrease in adolescent depressive symptoms, adolescents did not. Conclusions Findings support the value of undertaking an appropriately powered, randomised controlled trial to confirm these pilot findings.
Depression and clinical anxiety (also known as 'internalising disorders') are commonly experienced by autistic children. Parents play an important role in reducing their child's risk of developing internalising disorders, and existing technology-assisted parenting programs have shown promise in empowering parents in this role. Yet, existing interventions do not currently meet the unique needs of parents of autistic children. This study aimed to co-design adaptations to an existing technology-assisted parenting program (Partners in Parenting Kids) to enhance its relevance and acceptability for parents of school-aged autistic children. An iterative two-phase co-design study was conducted with parents of autistic children (n = 5) and service providers (n = 5). In Phase 1, semi-structured interviews explored participant experiences and needs in the context of parenting support, as well as perspectives on parenting programs. In Phase 2, eight co-design workshops were conducted with parents and service providers to build on the findings from Phase 1 and to collaboratively adapt the program content, delivery, and design features. Workshops involved participatory design activities to foster collaborative sharing of ideas and decision-making. Transcripts from both phases were analysed using reflexive thematic analysis. Themes identified in Phase 1 included: (1) Day-to-day challenges of parenting an autistic child; (2) Unique parent knowledge base and skill set; and (3) Desired qualities of parenting programs. Themes from Phase 2 of the study included: (1) Meaningful connections with others in the community; (2) Acceptance of autism; and (3) Diversity within the community. These themes are described in terms of their design implications for the resultant parenting program (Partners in Parenting Kids-Autism). The findings provide critical insights into desired qualities of parenting programs for parents of autistic children. Importantly, they also shed light on key design recommendations for future work focused on empowering parents to support their child's mental health through interventions.
Objective: This study explored the experiences of Ethiopian mothers and fathers in Melbourne, Australia, focusing on birth, parenting and cultural adaptation, to inform the cultural and digital adaptation of a psychoeducational intervention in routine Maternal and Child Health (MCH) services.Design: Qualitative study using semi-structured interviews examined parenting experiences under three themes: 'Getting to Know Your Baby', 'Working Together' and 'Cross-Cultural Parenting'.Setting: The research was conducted with Ethiopian parents living in Melbourne, Australia.Method: Semi-structured interviews were transcribed and thematically analysed to identify shared experiences and challenges related to cultural adaptation and parenting.Results: Ethiopian parents highlighted the value of a communal (shared) approach to child-rearing in Ethiopia, in which family members and traditional gender roles played a key part. In Australia, they faced challenges such as the absence of extended family support, which disrupted cultural practices and required changes to gender roles. Parents expressed a preference for traditional support systems such as advice from experienced parents or religious leaders, rather than more formal healthcare interventions.Conclusion: Findings underscore the importance of culturally sensitive healthcare and parenting resources that align with Ethiopian families' values and preferences. Tailored, community-driven interventions, such as co-designed podcasts, can address adaptation challenges, bridge cultural gaps and enhance parenting experiences and outcomes for families adjusting to life in Australia.
Background/Objectives: Parental mental health challenges are associated with parenting difficulties and child mental health issues. Parenting interventions can support families; however, parents with mental health challenges face barriers to accessing parenting support, which is not consistently offered within adult mental health settings. Embedding technology-assisted parenting programs into these settings could provide accessible, holistic support. Partners in Parenting Kids (PiP Kids) is a digital parenting program designed to prevent child anxiety and depression, yet its suitability for parents with mental health challenges and fit within mental health services remains unclear. This study aimed to co-design and adapt PiP Kids for future implementation in an Australian adult mental health service. Methods: Parents who recently sought mental health support (n = 8) and service providers (n = 7) participated in co-design workshops to explore needs and preferences for a technology-assisted parenting program and iteratively develop a prototype. Parents (n = 3) trialled the online component of the prototype and participated in qualitative interviews to assess acceptability. Results: The adapted clinician-supported program was designed to facilitate (1) parent and clinician readiness for parenting support; (2) emotional and social support for parents and clinicians; (3) practical, personalised parenting knowledge; (4) parent-led empowerment; and (5) accessible, integrated support. Prototype clinician training was developed to strengthen the clinician-support component. Parents indicated initial acceptability of the online prototype while reiterating the value of including face-to-face support. Conclusions: This study co-designed an online, clinician-supported parenting program for future embedding within adult mental health settings. The findings highlight key considerations for developing and implementing technology-assisted interventions that promote family-focused care for parents seeking mental health support.
INTRODUCTION:Planning pregnancy and optimal health prior to pregnancy can significantly reduce pregnancy complications and poor maternal health outcomes. Women from culturally and racially marginalised groups experience more unintended pregnancies, increased preconception risk factors and adverse pregnancy outcomes, including maternal and infant mortality, compared to native born Australians. Improving health literacy through culturally relevant and accessible resources may improve preconception health. We have previously shown that women from migrant and refugee backgrounds would prefer receiving preconception information on digital platforms. The aim of this study is to understand the focus and concerns of the women with regard to the content for a digital resource called 'BabyReady?'. METHODS:We conducted virtual workshops with 10 women from East Asian, South Asian, Central Asian, Middle-Eastern, and African backgrounds to understand more about cultural practices related to pregnancy preparation, preconception information sources and to identify topics that may be useful to include on a digital dashboard. Focus group discussions were transcribed and a content analysis was conducted. RESULTS:A range of culturally specific practices included eating warm foods, using acupuncture and alternative medicines to prepare for pregnancy. Expectations from family and friends induced high levels of stress and feeling controlled. Relatives were integral in decision making about pregnancy planning, particularly the mother-in-law. Women wanted to learn more about egg freezing, government benefits, adverse birth outcomes, how to navigate the healthcare system, interpreter services and where they could locate female health professionals. CONCLUSION:Digital preconception health content may be optimised for use by women from ethnically diverse backgrounds if it includes information around stress management, how to balance cultural expectations and beliefs with health advice, how to locate female health practitioners who speak their language and appropriate pregnancy planning. PATIENT OR PUBLIC CONTRIBUTION:The public participated in workshops providing feedback on what digital culturally responsive preconception health content means to them and how best to integrate it into a digital health dashboard.
INTRODUCTION:Developmental regression is when children lose one or more skills they have established. Families caring for these children need timely recognition to assist diagnosis and tailored interventions. Families also need support to develop practical skills for caregiving and strategies to promote family well-being and community participation. Given the high caring demands, flexibly delivered approaches are needed to accommodate family routines. Online delivery of health-related interventions that provide coaching, information, or both has been found to be a feasible and effective option for families. Family Focus is a new family-centred online programme, co-designed with parents and family advocates, clinicians, and researchers to support and empower primary carers. METHODS AND ANALYSIS:This study is a prospective, pragmatic randomised controlled trial comparing the effectiveness of online parent coaching plus Family Focus (Coaching+FF) to Family Focus alone (FF) for primary carers of children experiencing developmental regression. A sample of 56 families will be randomised in a 1:1 ratio. Outcomes are assessed at baseline, post-intervention and 12-month post-randomisation. The primary outcome is parental stress symptoms at post-intervention. Secondary outcomes include parental depressive and anxiety symptoms, parental engagement in health-promoting activities, family empowerment, family quality of life and child global health outcomes. The study will also examine the uptake and acceptability of specific coaching and FF components and explore the facilitators and barriers to their delivery and implementation. ETHICS AND DISSEMINATION:Ethics approvals were obtained from the participating organisations (Monash Health HREC/107806). Informed consent is obtained from parents/guardians of children prior to study enrolment. Study findings will be disseminated through peer-reviewed publications, conference presentations and lived experience agencies. TRIAL REGISTRATION NUMBER:ISRCTN25513446.
Background Children of parents experiencing mental health challenges are at an increased risk of mental health issues themselves. Parenting interventions can improve parent and child outcomes; however, parents often face barriers to accessing them. Delivering technology-assisted parenting programs within adult mental health services may overcome barriers by providing accessible, family-focused support and minimising demands on services. Yet little is known about how these programs can be efficiently and appropriately implemented in adult mental health settings. This study aimed to: 1) understand the perceived barriers and facilitators to implementing a co-designed, technology-assisted parenting program in an adult mental health service, from the perspective of service providers, and 2) use this understanding to develop practical strategies to guide the implementation of such programs in practice. Methods Individual interviews were conducted with 13 service providers ( n = 9 clinicians, n = 4 managers). Data collection and analysis were informed by the Consolidated Framework for Implementation Research (CFIR). Implementation strategies were drawn from the Expert Recommendations for Implementing Change (ERIC), with the CFIR-ERIC Matching Tool used to link identified barriers with targeted implementation strategies. Results We identified 22 CFIR constructs as facilitators and 12 as barriers. Eighteen implementation strategies were suggested for overcoming these barriers, with many strategies falling within the ERIC clusters ‘Use evaluative and iterative strategies’ ( n = 5) and ‘Train and educate stakeholders’ ( n = 4). Conclusions Findings highlight key factors influencing the implementation of a technology-assisted parenting program into an adult mental health service and suggest actionable strategies to mitigate barriers. Health services aiming to enhance parental mental health and family functioning through embedding technology-assisted parenting programs can use these findings to guide implementation.
Suicidal ideation and behaviours are common among adolescents. Parents play a fundamental protective role in the prevention of adolescent suicide, but many describe feeling ill-equipped in their caretaking role. This is despite prior research indicating that it is important for these parents to feel empowered to emotionally support their adolescent if they are experiencing suicidality. An online parenting program could offer parents flexible access to evidence-based parenting strategies. However, there are limited digital resources for these parents and, further, very little is known about how an intervention could be designed to support the empowerment of these parents. Therefore, the aim of the current study is to explore how an existing evidence-based, digital parenting intervention, Partners in Parenting (PiP+), could be adapted through co-design to empower parents. Four parents who have lived experience of caring for a suicidal adolescent, four young people who experienced suicidality during adolescence, and four experts in youth mental health/suicide prevention participated in four sets of co-design workshops to innovate adaptations to PiP+ to empower parents of suicidal adolescents. Affinity mapping was used to analyse and interpret findings. Three key themes highlight how a digital intervention could be innovated and adapted to empower parents caring for a suicidal adolescent. Specifically, for parents to feel empowered to parent a suicidal adolescent, a digital intervention should support them to (1) “deal with the now”; (2) “acknowledge needs and understand their role”, and (3) “hold hope for the future”. Further, ten sub-themes were developed illustrating different concepts related to these themes. Findings highlight how technological features could support parents to feel more empowered when caring for a suicidal adolescent. In conclusion, the proposed technological features illustrate how digital interventions can be adapted to empower parents in their role of emotionally supporting and managing the suicide risk of their adolescent.
BACKGROUND:There is a need for developmentally tailored intervention approaches that empower parents to respond to adolescent school refusal in the context of internalising disorders. Partners in Parenting Plus-Education (PiP-Ed+) is a manualised coach-assisted online parenting programme that has been co-designed with parents, youth and education-sector experts to fill this gap. It addresses multiple parenting factors associated with adolescent school refusal and internalising disorders. AIMS:This study aimed to evaluate the acceptability, feasibility and preliminary indications of efficacy of PiP-Ed+. METHOD:An open-label, uncontrolled trial was conducted using a mixed-methods design. Participants were 14 Australian parents of adolescents (12-18 years) who had refused school in the context of internalising disorders. RESULTS:PiP-Ed+ was viewed as highly acceptable and feasible. Coaching sessions in particular were perceived as valuable and appropriate to the parents' level of need, although longer-term support was suggested to sustain progress. Between baseline and post-intervention, there were significant increases in parents' self-efficacy to respond to adolescent school refusal and internalising problems, and concordance with evidence-based parenting strategies to reduce adolescent anxiety and depression. Days of school refused and carer burden did not change. CONCLUSIONS:Findings support the value of proceeding to evaluate the efficacy of PiP-Ed+ in a randomised-controlled trial. Results are interpreted in the context of study limitations.
BACKGROUND:Suicidal ideation and behaviours are common among adolescents, posing significant challenges. Parents have a protective role in mitigating this risk, yet they often feel ill-equipped to support their adolescents, and their specific support needs are not well understood. AIMS:To explore the lived experiences of parents with suicidal adolescents and identify their support needs in the context of a therapist-assisted online parenting programme. METHOD:Semi-structured interviews were conducted with three stakeholder groups based in Australia: nine parents with lived experience caring for a suicidal adolescent, five young people who experienced suicidality during adolescence and five clinical/research experts in youth mental health/suicide prevention. Inductive thematic analysis was used to analyse and interpret findings. RESULTS:Three key themes highlight the experience of parenting a suicidal adolescent: the traumatising emotional experience, uncertainty and parent empowerment. Six themes described parents' support needs: validation and support, practical and tailored strategies, rebuilding the parent-adolescent relationship, parental self-care, flexible and accessible modes of delivery, and understanding non-suicidal self-injury. CONCLUSIONS:Findings highlight key themes of parenting a suicidal adolescent and parental support needs. An online parenting programme could offer parents flexible access to evidence-based parenting strategies. Yet, a purely digital approach may not address the complexities of the parent-adolescent dynamic and provide adequate tailoring. As such, a hybrid approach incorporating therapist support can provide parents with both the compassionate support and practical guidance they seek.
In Malaysia, parental concerns about adolescent mental health have increased exponentially in recent years. However, parental mental health literacy remains low and culturally-sensitive parenting resources are scarce in Malaysia. The Partners in Parenting (PiP) program provides a framework of evidence-based parenting domains (henceforth 'PiP framework') that are universally adaptive for adolescent mental health-presenting as a good candidate for implementation in other cultures. Guided by the Double Diamond framework, this study aimed to identify cultural considerations for localising PiP to the Malaysian context. Semi-structured interviews were conducted with 38 primary caregivers (Mage = 47.1 years), who reflected on their parenting of their children during adolescence (aged 12-17 years). A thematic analysis using a deductive approach was conducted, using the PiP framework as a reference to identify cultural considerations in relation to five selected PiP parenting domains. Four overarching themes describing these cultural considerations were identified-Religion, Extended family, Gender roles, and Intergenerational influences-which were each relevant to one or more PiP parenting domains. These considerations, which reflect the complex interplay between parenting practices and the broader sociocultural environment in Malaysia, were further organised and interpreted within the context of the five interconnected cultural systems of the Bronfenbrenner socioecological model. Our approach facilitated a strategic, targeted localisation process, by identifying cultural considerations to be integrated into evidence-based intervention content. The context-specific implications for the localisation of PiP for Malaysia are discussed.
Background: One in seven youth experiences a mental disorder, accounting for 13% of the global disease burden. The family environment is a modifiable factor for the prevention of mental disorders. While evidence-based online parenting programs exist, engagement by immigrant families, such as Indian-origin families in Australia, remains low. Objective: To explore perceived barriers of Indian-origin parents and co-create strategies to build cross-cultural bridging interventions to increase their engagement in parenting programs. Method: A qualitative co-design method was used, and participants were selected using a set of inclusion criteria through a criterion-based sampling approach. Eight videoconference workshops were conducted with 23 Indian-origin parents living across Australia, incorporating scenarios, roleplay, and vignettes. Data were analysed using Braun and Clarke’s inductive coding approach. Results: One central theme and six design principles were developed. The central theme, low engagement with parenting programs, encompassed five factors that contribute to low engagement: ‘parenting programs’ is not a concept in India; limited awareness of parenting programs available in Australia; lack of time to engage in parenting programs; misalignment between parenting program content and real-world parenting challenges; and an ‘I know how to parent’ mindset. The six design principles were: acknowledge culture shock and acculturation; use a collaborative approach; include content specific to immigrant parents and children; adopt cross-cultural perspectives; use short and interactive bilingual pedagogic tools; and use focused dissemination and marketing. Conclusions: This study’s findings formed the foundation for developing a cross-cultural bridging intervention to connect Indian-origin parents with existing online parenting programs.
There are increasing concerns that digital interventions in healthcare settings could be better designed for scalable and sustained use. Implementation science is the scientific study of how to embed evidence-based interventions in practice. Calls to integrate implementation science and Human-Centred Design methods have focused on integrating design methods within implementation science processes. By contrast, we present a novel approach to integrating implementation science within Human-Centred Design for digital health interventions. Our approach leverages the socio-technical Nonadoption, abandonment, scale-up, spread, and sustainability (NASSS) framework within the distinct phases of the Double Diamond process. To illustrate our proposal we demonstrate its application in the redesign of a brief health promotion intervention to reduce the risk of alcohol-attributable breast cancer in women attending routine mammography. We discuss reflections on the approach and implications for future research that targets implementation within design.
Background: Adverse childhood experiences (ACEs) are a major risk factor for mental disorders in children. Parenting interventions can mitigate the impact of family-level ACEs and subsequently improve young people’s mental health. However, a substantial research-to-practice gap hinders access to, and uptake of, available interventions. Aim: This study aimed to develop actionable strategies to support the implementation of an evidence-based, co-designed, technology-assisted parenting intervention by understanding potential barriers and facilitators from the perspectives of service providers working with families of children experiencing ACEs. Methods: We conducted one-on-one interviews with 14 staff at a community health service (six managers, eight service providers). A theoretical thematic analysis was used. The Consolidated Framework for Implementation Research (CFIR) guided the data collection and analysis of barriers and facilitators. Pre-implementation strategies were informed by The Expert Recommendations for Implementing Change (ERIC) compilation. The CFIR–ERIC matching tool was used to match the CFIR barriers identified by participants in this study with ERIC strategies to overcome these barriers. Results: Fourteen CFIR constructs were identified as facilitators, and eleven as barriers. By using the CFIR–ERIC tool, eleven strategies to mitigate the barriers were identified. Most strategies were aligned to the ERIC clusters Use evaluative and iterative strategies (n = 4) and Develop stakeholder interrelationships (n = 3). Conclusions: The CFIR–ERIC approach offered relevant and concise pre-implementation strategies for addressing potential barriers to implementing a novel, co-designed, technology-assisted parenting intervention for parents of children with ACEs. The identified facilitators support the utility of co-designing interventions as an initial phase in bridging research-to-practice gaps. Healthcare settings aiming to innovate services with technology-assisted parenting interventions to improve child mental health can draw on findings from the current study to guide pre-implementation plans for innovative, technology-assisted parenting interventions to improve child mental health.
Background Adverse childhood experiences are strongly associated with mental disorders in young people. Parenting interventions are available through community health settings and can intervene with adverse childhood experiences that are within a parent’s capacity to modify. Technology can minimize common barriers associated with engaging in face-to-face parenting interventions. However, families experiencing adversity face unique barriers to engaging with technology-assisted parenting interventions. Formative research using co-design methodology to provide a deep contextual understanding of these barriers can help overcome unique barriers and ensure these families can capitalize on the benefits of technology-assisted parenting interventions. Objective This study aims to innovate the parenting support delivered by a community health and social service with technology by adapting an existing, evidence-based, technology-assisted parenting intervention. Methods Staff (n=3) participated in dialogues (n=2) and co-design workshops (n=8) exploring needs and preferences for a technology-assisted parenting intervention and iteratively developing a prototype intervention (Parenting Resilient Kids [PaRK]-Lite). Parents (n=3) received PaRK-Lite and participated in qualitative interviews to provide feedback on their experience and PaRK-Lite’s design. Results PaRK-Lite’s hybrid design leverages simple and familiar modes of technology (podcasts) to deliver intervention content and embeds reflective practice into service provision (microcoaching) to enhance parents’ empowerment and reduce service dependency. A training session, manuals, session plans, and templates were also developed to support the delivery of microcoaching. Feedback data from parents overall indicated that PaRK-Lite met their needs, suggesting that service providers can play a key role in the early phases of service innovation for parents. Conclusions The co-designed technology-assisted parenting intervention aims to offer both parents and clinicians a novel and engaging resource for intervening with maladaptive parenting, contributing to efforts to respond to childhood adversity and improve child mental health. Future research in the field of human-computer interaction and health service design can consider our findings in creating engaging interventions that have a positive impact on the well-being of children and families.
While online parenting interventions have been shown to improve youth mental health, parents find it challenging to engage with and implement strategies from self-directed interventions. Our study purposefully designed a parent peer-support community for parents seeking support. Our two-phased qualitative study included parent interviews and design workshops. Our findings show that while parents need others’ lived experiences to learn about parenting, perceived judgment and self-doubt can stop them from actively contributing to the peer support group. To address this design challenge, we operationalised parents’ needs and challenges gained in the interviews and workshops into design implications. We demonstrate a parent-centered design approach where we formulate design implications that integrate parents’ needs and expectations with multidisciplinary theoretical and empirical evidence to deepen and concretise the design for an online parent peer-support community that cultivates empathy, encourages confidence and self-efficacy, and motivates change and growth.
School refusal is a complex issue which typically develops in adolescence, often in the context of anxiety and depressive disorders. While parents and educators play a critical role in supporting these adolescents, they need guidance to work together to overcome the problem. Our study explores how technology can be designed to help parents and educators work together in supporting adolescents who refuse school. We first conducted 14 interviews with parents which highlighted that empathic understanding and communication between parents and the educators is key to supporting adolescents with school refusal. Subsequently, we conducted co-design workshops with three parents, three adolescents and five educators. Our workshop findings show that reactive and problem-focused communication can undermine trust-building and progress towards supporting the adolescent. Drawing on these findings, we formulate design implications that can enable empathic parent-adolescent-educator partnerships, provide holistic support for parents, and facilitate individual tailoring for diverse parent-adolescent journeys.
In low-and middle-income countries like India, people with severe mental illness (PSMI) rely on their families as a primary source of care, given the lack of support from healthcare systems. The demanding nature of caregiving places significant physical and mental demands on caregivers, who are the primary source of support to PSMI. We explore how caregivers in under-resourced settings can be better supported through everyday digital technologies. We conducted interviews with caregivers (from urban and rural India), as well as workshops with professionals from Indian NGOs that work directly with PSMIs. We found that technology has the potential to (1) provide carer-centred support that empowers carers who experience stigma and issues with existing support networks; (2) provide support for carers to overcome barriers and progress in the recovery of the PSMI. We conclude with design considerations, proposing how an online peer community can leverage carers' expertise to actualise support provision.