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500+ Qualitative Research Titles and Topics

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Qualitative research is a methodological approach that involves gathering and analyzing non-numerical data to understand and interpret social phenomena. Unlike quantitative research , which emphasizes the collection of numerical data through surveys and experiments, qualitative research is concerned with exploring the subjective experiences, perspectives, and meanings of individuals and groups. As such, qualitative research topics can be diverse and encompass a wide range of social issues and phenomena. From exploring the impact of culture on identity formation to examining the experiences of marginalized communities, qualitative research offers a rich and nuanced perspective on complex social issues. In this post, we will explore some of the most compelling qualitative research topics and provide some tips on how to conduct effective qualitative research.

Qualitative Research Titles

Qualitative research titles often reflect the study’s focus on understanding the depth and complexity of human behavior, experiences, or social phenomena. Here are some examples across various fields:

• “Understanding the Impact of Project-Based Learning on Student Engagement in High School Classrooms: A Qualitative Study”
• “Navigating the Transition: Experiences of International Students in American Universities”
• “The Role of Parental Involvement in Early Childhood Education: Perspectives from Teachers and Parents”
• “Exploring the Effects of Teacher Feedback on Student Motivation and Self-Efficacy in Middle Schools”
• “Digital Literacy in the Classroom: Teacher Strategies for Integrating Technology in Elementary Education”
• “Culturally Responsive Teaching Practices: A Case Study in Diverse Urban Schools”
• “The Influence of Extracurricular Activities on Academic Achievement: Student Perspectives”
• “Barriers to Implementing Inclusive Education in Public Schools: A Qualitative Inquiry”
• “Teacher Professional Development and Its Impact on Classroom Practice: A Qualitative Exploration”
• “Student-Centered Learning Environments: A Qualitative Study of Classroom Dynamics and Outcomes”
• “The Experience of First-Year Teachers: Challenges, Support Systems, and Professional Growth”
• “Exploring the Role of School Leadership in Fostering a Positive School Culture”
• “Peer Relationships and Learning Outcomes in Cooperative Learning Settings: A Qualitative Analysis”
• “The Impact of Social Media on Student Learning and Engagement: Teacher and Student Perspectives”
• “Understanding Special Education Needs: Parent and Teacher Perceptions of Support Services in Schools

Health Science

• “Living with Chronic Pain: Patient Narratives and Coping Strategies in Managing Daily Life”
• “Healthcare Professionals’ Perspectives on the Challenges of Rural Healthcare Delivery”
• “Exploring the Mental Health Impacts of COVID-19 on Frontline Healthcare Workers: A Qualitative Study”
• “Patient and Family Experiences of Palliative Care: Understanding Needs and Preferences”
• “The Role of Community Health Workers in Improving Access to Maternal Healthcare in Rural Areas”
• “Barriers to Mental Health Services Among Ethnic Minorities: A Qualitative Exploration”
• “Understanding Patient Satisfaction in Telemedicine Services: A Qualitative Study of User Experiences”
• “The Impact of Cultural Competence Training on Healthcare Provider-Patient Communication”
• “Navigating the Transition to Adult Healthcare Services: Experiences of Adolescents with Chronic Conditions”
• “Exploring the Use of Alternative Medicine Among Patients with Chronic Diseases: A Qualitative Inquiry”
• “The Role of Social Support in the Rehabilitation Process of Stroke Survivors”
• “Healthcare Decision-Making Among Elderly Patients: A Qualitative Study of Preferences and Influences”
• “Nurse Perceptions of Patient Safety Culture in Hospital Settings: A Qualitative Analysis”
• “Experiences of Women with Postpartum Depression: Barriers to Seeking Help”
• “The Impact of Nutrition Education on Eating Behaviors Among College Students: A Qualitative Approach”
• “Understanding Resilience in Survivors of Childhood Trauma: A Narrative Inquiry”
• “The Role of Mindfulness in Managing Work-Related Stress Among Corporate Employees: A Qualitative Study”
• “Coping Mechanisms Among Parents of Children with Autism Spectrum Disorder”
• “Exploring the Psychological Impact of Social Isolation in the Elderly: A Phenomenological Study”
• “Identity Formation in Adolescence: The Influence of Social Media and Peer Groups”
• “The Experience of Forgiveness in Interpersonal Relationships: A Qualitative Exploration”
• “Perceptions of Happiness and Well-Being Among University Students: A Cultural Perspective”
• “The Impact of Art Therapy on Anxiety and Depression in Adult Cancer Patients”
• “Narratives of Recovery: A Qualitative Study on the Journey Through Addiction Rehabilitation”
• “Exploring the Psychological Effects of Long-Term Unemployment: A Grounded Theory Approach”
• “Attachment Styles and Their Influence on Adult Romantic Relationships: A Qualitative Analysis”
• “The Role of Personal Values in Career Decision-Making Among Young Adults”
• “Understanding the Stigma of Mental Illness in Rural Communities: A Qualitative Inquiry”
• “Exploring the Use of Digital Mental Health Interventions Among Adolescents: A Qualitative Study”
• “The Psychological Impact of Climate Change on Young Adults: An Exploration of Anxiety and Action”
• “Navigating Identity: The Role of Social Media in Shaping Youth Culture and Self-Perception”
• “Community Resilience in the Face of Urban Gentrification: A Case Study of Neighborhood Change”
• “The Dynamics of Intergenerational Relationships in Immigrant Families: A Qualitative Analysis”
• “Social Capital and Economic Mobility in Low-Income Neighborhoods: An Ethnographic Approach”
• “Gender Roles and Career Aspirations Among Young Adults in Conservative Societies”
• “The Stigma of Mental Health in the Workplace: Employee Narratives and Organizational Culture”
• “Exploring the Intersection of Race, Class, and Education in Urban School Systems”
• “The Impact of Digital Divide on Access to Healthcare Information in Rural Communities”
• “Social Movements and Political Engagement Among Millennials: A Qualitative Study”
• “Cultural Adaptation and Identity Among Second-Generation Immigrants: A Phenomenological Inquiry”
• “The Role of Religious Institutions in Providing Community Support and Social Services”
• “Negotiating Public Space: Experiences of LGBTQ+ Individuals in Urban Environments”
• “The Sociology of Food: Exploring Eating Habits and Food Practices Across Cultures”
• “Work-Life Balance Challenges Among Dual-Career Couples: A Qualitative Exploration”
• “The Influence of Peer Networks on Substance Use Among Adolescents: A Community Study”

Business and Management

• “Navigating Organizational Change: Employee Perceptions and Adaptation Strategies in Mergers and Acquisitions”
• “Corporate Social Responsibility: Consumer Perceptions and Brand Loyalty in the Retail Sector”
• “Leadership Styles and Organizational Culture: A Comparative Study of Tech Startups”
• “Workplace Diversity and Inclusion: Best Practices and Challenges in Multinational Corporations”
• “Consumer Trust in E-commerce: A Qualitative Study of Online Shopping Behaviors”
• “The Gig Economy and Worker Satisfaction: Exploring the Experiences of Freelance Professionals”
• “Entrepreneurial Resilience: Success Stories and Lessons Learned from Failed Startups”
• “Employee Engagement and Productivity in Remote Work Settings: A Post-Pandemic Analysis”
• “Brand Storytelling: How Narrative Strategies Influence Consumer Engagement”
• “Sustainable Business Practices: Stakeholder Perspectives in the Fashion Industry”
• “Cross-Cultural Communication Challenges in Global Teams: Strategies for Effective Collaboration”
• “Innovative Workspaces: The Impact of Office Design on Creativity and Collaboration”
• “Consumer Perceptions of Artificial Intelligence in Customer Service: A Qualitative Exploration”
• “The Role of Mentoring in Career Development: Insights from Women in Leadership Positions”
• “Agile Management Practices: Adoption and Impact in Traditional Industries”

Environmental Studies

• “Community-Based Conservation Efforts in Tropical Rainforests: A Qualitative Study of Local Perspectives and Practices”
• “Urban Sustainability Initiatives: Exploring Resident Participation and Impact in Green City Projects”
• “Perceptions of Climate Change Among Indigenous Populations: Insights from Traditional Ecological Knowledge”
• “Environmental Justice and Industrial Pollution: A Case Study of Community Advocacy and Response”
• “The Role of Eco-Tourism in Promoting Conservation Awareness: Perspectives from Tour Operators and Visitors”
• “Sustainable Agriculture Practices Among Smallholder Farmers: Challenges and Opportunities”
• “Youth Engagement in Climate Action Movements: Motivations, Perceptions, and Outcomes”
• “Corporate Environmental Responsibility: A Qualitative Analysis of Stakeholder Expectations and Company Practices”
• “The Impact of Plastic Pollution on Marine Ecosystems: Community Awareness and Behavioral Change”
• “Renewable Energy Adoption in Rural Communities: Barriers, Facilitators, and Social Implications”
• “Water Scarcity and Community Adaptation Strategies in Arid Regions: A Grounded Theory Approach”
• “Urban Green Spaces: Public Perceptions and Use Patterns in Megacities”
• “Environmental Education in Schools: Teachers’ Perspectives on Integrating Sustainability into Curricula”
• “The Influence of Environmental Activism on Policy Change: Case Studies of Grassroots Campaigns”
• “Cultural Practices and Natural Resource Management: A Qualitative Study of Indigenous Stewardship Models”

Anthropology

• “Kinship and Social Organization in Matrilineal Societies: An Ethnographic Study”
• “Rituals and Beliefs Surrounding Death and Mourning in Diverse Cultures: A Comparative Analysis”
• “The Impact of Globalization on Indigenous Languages and Cultural Identity”
• “Food Sovereignty and Traditional Agricultural Practices Among Indigenous Communities”
• “Navigating Modernity: The Integration of Traditional Healing Practices in Contemporary Healthcare Systems”
• “Gender Roles and Equality in Hunter-Gatherer Societies: An Anthropological Perspective”
• “Sacred Spaces and Religious Practices: An Ethnographic Study of Pilgrimage Sites”
• “Youth Subcultures and Resistance: An Exploration of Identity and Expression in Urban Environments”
• “Cultural Constructions of Disability and Inclusion: A Cross-Cultural Analysis”
• “Interethnic Marriages and Cultural Syncretism: Case Studies from Multicultural Societies”
• “The Role of Folklore and Storytelling in Preserving Cultural Heritage”
• “Economic Anthropology of Gift-Giving and Reciprocity in Tribal Communities”
• “Digital Anthropology: The Role of Social Media in Shaping Political Movements”
• “Migration and Diaspora: Maintaining Cultural Identity in Transnational Communities”
• “Cultural Adaptations to Climate Change Among Coastal Fishing Communities”

Communication Studies

• “The Dynamics of Family Communication in the Digital Age: A Qualitative Inquiry”
• “Narratives of Identity and Belonging in Diaspora Communities Through Social Media”
• “Organizational Communication and Employee Engagement: A Case Study in the Non-Profit Sector”
• “Cultural Influences on Communication Styles in Multinational Teams: An Ethnographic Approach”
• “Media Representation of Women in Politics: A Content Analysis and Audience Perception Study”
• “The Role of Communication in Building Sustainable Community Development Projects”
• “Interpersonal Communication in Online Dating: Strategies, Challenges, and Outcomes”
• “Public Health Messaging During Pandemics: A Qualitative Study of Community Responses”
• “The Impact of Mobile Technology on Parent-Child Communication in the Digital Era”
• “Crisis Communication Strategies in the Hospitality Industry: A Case Study of Reputation Management”
• “Narrative Analysis of Personal Stories Shared on Mental Health Blogs”
• “The Influence of Podcasts on Political Engagement Among Young Adults”
• “Visual Communication and Brand Identity: A Qualitative Study of Consumer Interpretations”
• “Communication Barriers in Cross-Cultural Healthcare Settings: Patient and Provider Perspectives”
• “The Role of Internal Communication in Managing Organizational Change: Employee Experiences”

Information Technology

• “User Experience Design in Augmented Reality Applications: A Qualitative Study of Best Practices”
• “The Human Factor in Cybersecurity: Understanding Employee Behaviors and Attitudes Towards Phishing”
• “Adoption of Cloud Computing in Small and Medium Enterprises: Challenges and Success Factors”
• “Blockchain Technology in Supply Chain Management: A Qualitative Exploration of Potential Impacts”
• “The Role of Artificial Intelligence in Personalizing User Experiences on E-commerce Platforms”
• “Digital Transformation in Traditional Industries: A Case Study of Technology Adoption Challenges”
• “Ethical Considerations in the Development of Smart Home Technologies: A Stakeholder Analysis”
• “The Impact of Social Media Algorithms on News Consumption and Public Opinion”
• “Collaborative Software Development: Practices and Challenges in Open Source Projects”
• “Understanding the Digital Divide: Access to Information Technology in Rural Communities”
• “Data Privacy Concerns and User Trust in Internet of Things (IoT) Devices”
• “The Effectiveness of Gamification in Educational Software: A Qualitative Study of Engagement and Motivation”
• “Virtual Teams and Remote Work: Communication Strategies and Tools for Effectiveness”
• “User-Centered Design in Mobile Health Applications: Evaluating Usability and Accessibility”
• “The Influence of Technology on Work-Life Balance: Perspectives from IT Professionals”

Tourism and Hospitality

• “Exploring the Authenticity of Cultural Heritage Tourism in Indigenous Communities”
• “Sustainable Tourism Practices: Perceptions and Implementations in Small Island Destinations”
• “The Impact of Social Media Influencers on Destination Choice Among Millennials”
• “Gastronomy Tourism: Exploring the Culinary Experiences of International Visitors in Rural Regions”
• “Eco-Tourism and Conservation: Stakeholder Perspectives on Balancing Tourism and Environmental Protection”
• “The Role of Hospitality in Enhancing the Cultural Exchange Experience of Exchange Students”
• “Dark Tourism: Visitor Motivations and Experiences at Historical Conflict Sites”
• “Customer Satisfaction in Luxury Hotels: A Qualitative Study of Service Excellence and Personalization”
• “Adventure Tourism: Understanding the Risk Perception and Safety Measures Among Thrill-Seekers”
• “The Influence of Local Communities on Tourist Experiences in Ecotourism Sites”
• “Event Tourism: Economic Impacts and Community Perspectives on Large-Scale Music Festivals”
• “Heritage Tourism and Identity: Exploring the Connections Between Historic Sites and National Identity”
• “Tourist Perceptions of Sustainable Accommodation Practices: A Study of Green Hotels”
• “The Role of Language in Shaping the Tourist Experience in Multilingual Destinations”
• “Health and Wellness Tourism: Motivations and Experiences of Visitors to Spa and Retreat Centers”

Qualitative Research Topics

Qualitative Research Topics are as follows:

• Understanding the lived experiences of first-generation college students
• Exploring the impact of social media on self-esteem among adolescents
• Investigating the effects of mindfulness meditation on stress reduction
• Analyzing the perceptions of employees regarding organizational culture
• Examining the impact of parental involvement on academic achievement of elementary school students
• Investigating the role of music therapy in managing symptoms of depression
• Understanding the experience of women in male-dominated industries
• Exploring the factors that contribute to successful leadership in non-profit organizations
• Analyzing the effects of peer pressure on substance abuse among adolescents
• Investigating the experiences of individuals with disabilities in the workplace
• Understanding the factors that contribute to burnout among healthcare professionals
• Examining the impact of social support on mental health outcomes
• Analyzing the perceptions of parents regarding sex education in schools
• Investigating the experiences of immigrant families in the education system
• Understanding the impact of trauma on mental health outcomes
• Exploring the effectiveness of animal-assisted therapy for individuals with anxiety
• Analyzing the factors that contribute to successful intergenerational relationships
• Investigating the experiences of LGBTQ+ individuals in the workplace
• Understanding the impact of online gaming on social skills development among adolescents
• Examining the perceptions of teachers regarding technology integration in the classroom
• Analyzing the experiences of women in leadership positions
• Investigating the factors that contribute to successful marriage and long-term relationships
• Understanding the impact of social media on political participation
• Exploring the experiences of individuals with mental health disorders in the criminal justice system
• Analyzing the factors that contribute to successful community-based programs for youth development
• Investigating the experiences of veterans in accessing mental health services
• Understanding the impact of the COVID-19 pandemic on mental health outcomes
• Examining the perceptions of parents regarding childhood obesity prevention
• Analyzing the factors that contribute to successful multicultural education programs
• Investigating the experiences of individuals with chronic illnesses in the workplace
• Understanding the impact of poverty on academic achievement
• Exploring the experiences of individuals with autism spectrum disorder in the workplace
• Analyzing the factors that contribute to successful employee retention strategies
• Investigating the experiences of caregivers of individuals with Alzheimer’s disease
• Understanding the impact of parent-child communication on adolescent sexual behavior
• Examining the perceptions of college students regarding mental health services on campus
• Analyzing the factors that contribute to successful team building in the workplace
• Investigating the experiences of individuals with eating disorders in treatment programs
• Understanding the impact of mentorship on career success
• Exploring the experiences of individuals with physical disabilities in the workplace
• Analyzing the factors that contribute to successful community-based programs for mental health
• Investigating the experiences of individuals with substance use disorders in treatment programs
• Understanding the impact of social media on romantic relationships
• Examining the perceptions of parents regarding child discipline strategies
• Analyzing the factors that contribute to successful cross-cultural communication in the workplace
• Investigating the experiences of individuals with anxiety disorders in treatment programs
• Understanding the impact of cultural differences on healthcare delivery
• Exploring the experiences of individuals with hearing loss in the workplace
• Analyzing the factors that contribute to successful parent-teacher communication
• Investigating the experiences of individuals with depression in treatment programs
• Understanding the impact of childhood trauma on adult mental health outcomes
• Examining the perceptions of college students regarding alcohol and drug use on campus
• Analyzing the factors that contribute to successful mentor-mentee relationships
• Investigating the experiences of individuals with intellectual disabilities in the workplace
• Understanding the impact of work-family balance on employee satisfaction and well-being
• Exploring the experiences of individuals with autism spectrum disorder in vocational rehabilitation programs
• Analyzing the factors that contribute to successful project management in the construction industry
• Investigating the experiences of individuals with substance use disorders in peer support groups
• Understanding the impact of mindfulness meditation on stress reduction and mental health
• Examining the perceptions of parents regarding childhood nutrition
• Analyzing the factors that contribute to successful environmental sustainability initiatives in organizations
• Investigating the experiences of individuals with bipolar disorder in treatment programs
• Understanding the impact of job stress on employee burnout and turnover
• Exploring the experiences of individuals with physical disabilities in recreational activities
• Analyzing the factors that contribute to successful strategic planning in nonprofit organizations
• Investigating the experiences of individuals with hoarding disorder in treatment programs
• Understanding the impact of culture on leadership styles and effectiveness
• Examining the perceptions of college students regarding sexual health education on campus
• Analyzing the factors that contribute to successful supply chain management in the retail industry
• Investigating the experiences of individuals with personality disorders in treatment programs
• Understanding the impact of multiculturalism on group dynamics in the workplace
• Exploring the experiences of individuals with chronic pain in mindfulness-based pain management programs
• Analyzing the factors that contribute to successful employee engagement strategies in organizations
• Investigating the experiences of individuals with internet addiction disorder in treatment programs
• Understanding the impact of social comparison on body dissatisfaction and self-esteem
• Examining the perceptions of parents regarding childhood sleep habits
• Analyzing the factors that contribute to successful diversity and inclusion initiatives in organizations
• Investigating the experiences of individuals with schizophrenia in treatment programs
• Understanding the impact of job crafting on employee motivation and job satisfaction
• Exploring the experiences of individuals with vision impairments in navigating public spaces
• Analyzing the factors that contribute to successful customer relationship management strategies in the service industry
• Investigating the experiences of individuals with dissociative amnesia in treatment programs
• Understanding the impact of cultural intelligence on intercultural communication and collaboration
• Examining the perceptions of college students regarding campus diversity and inclusion efforts
• Analyzing the factors that contribute to successful supply chain sustainability initiatives in organizations
• Investigating the experiences of individuals with obsessive-compulsive disorder in treatment programs
• Understanding the impact of transformational leadership on organizational performance and employee well-being
• Exploring the experiences of individuals with mobility impairments in public transportation
• Analyzing the factors that contribute to successful talent management strategies in organizations
• Investigating the experiences of individuals with substance use disorders in harm reduction programs
• Understanding the impact of gratitude practices on well-being and resilience
• Examining the perceptions of parents regarding childhood mental health and well-being
• Analyzing the factors that contribute to successful corporate social responsibility initiatives in organizations
• Investigating the experiences of individuals with borderline personality disorder in treatment programs
• Understanding the impact of emotional labor on job stress and burnout
• Exploring the experiences of individuals with hearing impairments in healthcare settings
• Analyzing the factors that contribute to successful customer experience strategies in the hospitality industry
• Investigating the experiences of individuals with gender dysphoria in gender-affirming healthcare
• Understanding the impact of cultural differences on cross-cultural negotiation in the global marketplace
• Examining the perceptions of college students regarding academic stress and mental health
• Analyzing the factors that contribute to successful supply chain agility in organizations
• Understanding the impact of music therapy on mental health and well-being
• Exploring the experiences of individuals with dyslexia in educational settings
• Analyzing the factors that contribute to successful leadership in nonprofit organizations
• Investigating the experiences of individuals with chronic illnesses in online support groups
• Understanding the impact of exercise on mental health and well-being
• Examining the perceptions of parents regarding childhood screen time
• Analyzing the factors that contribute to successful change management strategies in organizations
• Understanding the impact of cultural differences on international business negotiations
• Exploring the experiences of individuals with hearing impairments in the workplace
• Analyzing the factors that contribute to successful team building in corporate settings
• Understanding the impact of technology on communication in romantic relationships
• Analyzing the factors that contribute to successful community engagement strategies for local governments
• Investigating the experiences of individuals with attention deficit hyperactivity disorder (ADHD) in treatment programs
• Understanding the impact of financial stress on mental health and well-being
• Analyzing the factors that contribute to successful mentorship programs in organizations
• Investigating the experiences of individuals with gambling addictions in treatment programs
• Understanding the impact of social media on body image and self-esteem
• Examining the perceptions of parents regarding childhood education
• Analyzing the factors that contribute to successful virtual team management strategies
• Investigating the experiences of individuals with dissociative identity disorder in treatment programs
• Understanding the impact of cultural differences on cross-cultural communication in healthcare settings
• Exploring the experiences of individuals with chronic pain in cognitive-behavioral therapy programs
• Analyzing the factors that contribute to successful community-building strategies in urban neighborhoods
• Investigating the experiences of individuals with alcohol use disorders in treatment programs
• Understanding the impact of personality traits on romantic relationships
• Examining the perceptions of college students regarding mental health stigma on campus
• Analyzing the factors that contribute to successful fundraising strategies for political campaigns
• Investigating the experiences of individuals with traumatic brain injuries in rehabilitation programs
• Understanding the impact of social support on mental health and well-being among the elderly
• Exploring the experiences of individuals with chronic illnesses in medical treatment decision-making processes
• Analyzing the factors that contribute to successful innovation strategies in organizations
• Investigating the experiences of individuals with dissociative disorders in treatment programs
• Understanding the impact of cultural differences on cross-cultural communication in education settings
• Examining the perceptions of parents regarding childhood physical activity
• Analyzing the factors that contribute to successful conflict resolution in family relationships
• Investigating the experiences of individuals with opioid use disorders in treatment programs
• Understanding the impact of emotional intelligence on leadership effectiveness
• Exploring the experiences of individuals with learning disabilities in the workplace
• Analyzing the factors that contribute to successful change management in educational institutions
• Investigating the experiences of individuals with eating disorders in recovery support groups
• Understanding the impact of self-compassion on mental health and well-being
• Examining the perceptions of college students regarding campus safety and security measures
• Analyzing the factors that contribute to successful marketing strategies for nonprofit organizations
• Investigating the experiences of individuals with postpartum depression in treatment programs
• Understanding the impact of ageism in the workplace
• Exploring the experiences of individuals with dyslexia in the education system
• Investigating the experiences of individuals with anxiety disorders in cognitive-behavioral therapy programs
• Understanding the impact of socioeconomic status on access to healthcare
• Examining the perceptions of parents regarding childhood screen time usage
• Analyzing the factors that contribute to successful supply chain management strategies
• Understanding the impact of parenting styles on child development
• Exploring the experiences of individuals with addiction in harm reduction programs
• Analyzing the factors that contribute to successful crisis management strategies in organizations
• Investigating the experiences of individuals with trauma in trauma-focused therapy programs
• Examining the perceptions of healthcare providers regarding patient-centered care
• Analyzing the factors that contribute to successful product development strategies
• Investigating the experiences of individuals with autism spectrum disorder in employment programs
• Understanding the impact of cultural competence on healthcare outcomes
• Exploring the experiences of individuals with chronic illnesses in healthcare navigation
• Analyzing the factors that contribute to successful community engagement strategies for non-profit organizations
• Investigating the experiences of individuals with physical disabilities in the workplace
• Understanding the impact of childhood trauma on adult mental health
• Analyzing the factors that contribute to successful supply chain sustainability strategies
• Investigating the experiences of individuals with personality disorders in dialectical behavior therapy programs
• Understanding the impact of gender identity on mental health treatment seeking behaviors
• Exploring the experiences of individuals with schizophrenia in community-based treatment programs
• Analyzing the factors that contribute to successful project team management strategies
• Investigating the experiences of individuals with obsessive-compulsive disorder in exposure and response prevention therapy programs
• Understanding the impact of cultural competence on academic achievement and success
• Examining the perceptions of college students regarding academic integrity
• Analyzing the factors that contribute to successful social media marketing strategies
• Investigating the experiences of individuals with bipolar disorder in community-based treatment programs
• Understanding the impact of mindfulness on academic achievement and success
• Exploring the experiences of individuals with substance use disorders in medication-assisted treatment programs
• Investigating the experiences of individuals with anxiety disorders in exposure therapy programs
• Understanding the impact of healthcare disparities on health outcomes
• Analyzing the factors that contribute to successful supply chain optimization strategies
• Investigating the experiences of individuals with borderline personality disorder in schema therapy programs
• Understanding the impact of culture on perceptions of mental health stigma
• Exploring the experiences of individuals with trauma in art therapy programs
• Analyzing the factors that contribute to successful digital marketing strategies
• Investigating the experiences of individuals with eating disorders in online support groups
• Understanding the impact of workplace bullying on job satisfaction and performance
• Examining the perceptions of college students regarding mental health resources on campus
• Analyzing the factors that contribute to successful supply chain risk management strategies
• Investigating the experiences of individuals with chronic pain in mindfulness-based pain management programs
• Understanding the impact of cognitive-behavioral therapy on social anxiety disorder
• Understanding the impact of COVID-19 on mental health and well-being
• Exploring the experiences of individuals with eating disorders in treatment programs
• Analyzing the factors that contribute to successful leadership in business organizations
• Investigating the experiences of individuals with chronic pain in cognitive-behavioral therapy programs
• Understanding the impact of cultural differences on intercultural communication
• Examining the perceptions of teachers regarding inclusive education for students with disabilities
• Investigating the experiences of individuals with depression in therapy programs
• Understanding the impact of workplace culture on employee retention and turnover
• Exploring the experiences of individuals with traumatic brain injuries in rehabilitation programs
• Analyzing the factors that contribute to successful crisis communication strategies in organizations
• Investigating the experiences of individuals with anxiety disorders in mindfulness-based interventions
• Investigating the experiences of individuals with chronic illnesses in healthcare settings
• Understanding the impact of technology on work-life balance
• Exploring the experiences of individuals with learning disabilities in academic settings
• Analyzing the factors that contribute to successful entrepreneurship in small businesses
• Understanding the impact of gender identity on mental health and well-being
• Examining the perceptions of individuals with disabilities regarding accessibility in public spaces
• Understanding the impact of religion on coping strategies for stress and anxiety
• Exploring the experiences of individuals with chronic illnesses in complementary and alternative medicine treatments
• Analyzing the factors that contribute to successful customer retention strategies in business organizations
• Investigating the experiences of individuals with postpartum depression in therapy programs
• Understanding the impact of ageism on older adults in healthcare settings
• Examining the perceptions of students regarding online learning during the COVID-19 pandemic
• Analyzing the factors that contribute to successful team building in virtual work environments
• Investigating the experiences of individuals with gambling disorders in treatment programs
• Exploring the experiences of individuals with chronic illnesses in peer support groups
• Analyzing the factors that contribute to successful social media marketing strategies for businesses
• Investigating the experiences of individuals with ADHD in treatment programs
• Understanding the impact of sleep on cognitive and emotional functioning
• Examining the perceptions of individuals with chronic illnesses regarding healthcare access and affordability
• Investigating the experiences of individuals with borderline personality disorder in dialectical behavior therapy programs
• Understanding the impact of social support on caregiver well-being
• Exploring the experiences of individuals with chronic illnesses in disability activism
• Analyzing the factors that contribute to successful cultural competency training programs in healthcare settings
• Understanding the impact of personality disorders on interpersonal relationships
• Examining the perceptions of healthcare providers regarding the use of telehealth services
• Investigating the experiences of individuals with dissociative disorders in therapy programs
• Understanding the impact of gender bias in hiring practices
• Exploring the experiences of individuals with visual impairments in the workplace
• Analyzing the factors that contribute to successful diversity and inclusion programs in the workplace
• Understanding the impact of online dating on romantic relationships
• Examining the perceptions of parents regarding childhood vaccination
• Analyzing the factors that contribute to successful communication in healthcare settings
• Understanding the impact of cultural stereotypes on academic achievement
• Exploring the experiences of individuals with substance use disorders in sober living programs
• Analyzing the factors that contribute to successful classroom management strategies
• Understanding the impact of social support on addiction recovery
• Examining the perceptions of college students regarding mental health stigma
• Analyzing the factors that contribute to successful conflict resolution in the workplace
• Understanding the impact of race and ethnicity on healthcare access and outcomes
• Exploring the experiences of individuals with post-traumatic stress disorder in treatment programs
• Analyzing the factors that contribute to successful project management strategies
• Understanding the impact of teacher-student relationships on academic achievement
• Analyzing the factors that contribute to successful customer service strategies
• Investigating the experiences of individuals with social anxiety disorder in treatment programs
• Understanding the impact of workplace stress on job satisfaction and performance
• Exploring the experiences of individuals with disabilities in sports and recreation
• Analyzing the factors that contribute to successful marketing strategies for small businesses
• Investigating the experiences of individuals with phobias in treatment programs
• Understanding the impact of culture on attitudes towards mental health and illness
• Examining the perceptions of college students regarding sexual assault prevention
• Analyzing the factors that contribute to successful time management strategies
• Investigating the experiences of individuals with addiction in recovery support groups
• Understanding the impact of mindfulness on emotional regulation and well-being
• Exploring the experiences of individuals with chronic pain in treatment programs
• Analyzing the factors that contribute to successful conflict resolution in romantic relationships
• Investigating the experiences of individuals with autism spectrum disorder in social skills training programs
• Understanding the impact of parent-child communication on adolescent substance use
• Examining the perceptions of parents regarding childhood mental health services
• Analyzing the factors that contribute to successful fundraising strategies for non-profit organizations
• Investigating the experiences of individuals with chronic illnesses in support groups
• Understanding the impact of personality traits on career success and satisfaction
• Exploring the experiences of individuals with disabilities in accessing public transportation
• Analyzing the factors that contribute to successful team building in sports teams
• Investigating the experiences of individuals with chronic pain in alternative medicine treatments
• Understanding the impact of stigma on mental health treatment seeking behaviors
• Examining the perceptions of college students regarding diversity and inclusion on campus.

About the author

Muhammad Hassan

Researcher, Academic Writer, Web developer

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Lived experience research as a resource for recovery: a mixed methods study

Katherine m boydell, francesca coniglio, trang thuy do, leonie dunn, katherine gill, helen glover, monique hines, justin newton scanlan, barbara tooth.

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Corresponding author.

Received 2020 May 12; Accepted 2020 Sep 8; Collection date 2020.

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Lived experience research is conducted by people who have experience of mental health issues and is therefore better placed than more traditional research to illuminate participants’ experiences. Findings that focus on identifying enablers of recovery from a lived experience perspective have the potential to assist people in their recovery process. However, this lived experience research is often difficult to find, access and interpret. We co-produced user-friendly and engaging resources to disseminate findings from six lived experience research studies. This paper seeks to answer the research questions: a) Did exposure to lived experience research increase hopefulness for participants?; and b) How else did interacting with lived experience research resources influence participants’ lives?

Thirty-eight participants were introduced to four resources of their choosing by peer workers over a four-week period. The helpfulness of resources was evaluated using mixed methods, including a quasi-experimental analysis of change in hope, an anonymous survey and in-depth interviews.

Findings indicated that the resources promoted hope, but that increases in hopefulness may not be seen immediately. Other impacts include that the resources: encouraged helpful activities; provided a positive experience; increased valued knowledge; encouraged people to reflect on their journey and think constructively about mental health issues; helped people to feel less alone; and assisted people to explain their situation to others.

Conclusions

The research suggests the potential usefulness of lived experience research resources, presented in user-friendly formats, in the lives of people who experience mental health issues and implies a need to nurture this type of research.

Keywords: Lived experience research, Service user research, Knowledge translation, Mental health recovery, Hope

Lived experience research in mental health is research that illuminates the perspectives and experiences of people who live with mental health issues and is conducted either by researchers with their own lived experience or in collaborative research teams that include people with lived experience [ 1 , 2 ]. This paper investigates the usefulness of lived experience research in the lives of people living with mental health issues.

The importance of lived experience research in mental health is increasingly recognised and usually conceptualised in terms of three major benefits. First, consumer rights activists, using the slogan of “nothing about us without us” have argued that inclusion in research is a human right and a social justice issue [ 3 ]. Second, it can produce better quality research by enhancing methodological sensitivity, data accuracy, validity of results, and overall relevance to service users e.g., [ 4 – 6 ]. Third, people with lived experience have reported deriving benefits from doing research such as satisfaction, skill development, empowerment, and hope [ 4 , 6 ]. Lived experience researchers are increasingly adopting leading roles in conceptualising and conducting research in mental health.

Findings from lived experience research have the potential to be helpful to people in their recovery journeys. Numerous studies have reported the benefits of learning from the wisdom, strategies, challenges and successes of others e.g., [ 7 ]. Hope, a critical component of recovery [ 8 ], is also a major benefit of being exposed to the stories and experiences of others in similar situations. A recent study examined the types of experiences that people living with mental health issues described as igniting and maintaining hope [ 9 ]. Two sources of hope were particularly relevant to lived experience research. First, hearing positive stories of others’ experiences was important. As one participant stated: “the consumers’ voice was hope and healing”. Second, hope was promoted by learning gained from others with lived experience, such as “the key tips and strategies that other peers discussed.”

Observing peers who are living well and reading or listening to individual narratives of recovery are important ways in which people learn from each other and derive hope. However, lived experience research has the potential to bring together the stories of a variety of different people to provide a range of ideas and a bigger picture on particular issues, thus contributing to an individual’s store of resources for recovery.

While the researchers were unable to locate research about the direct use of lived experience research by people living with mental health issues, our collective experience has indicated that many who are not themselves involved in user-led or collaborative research, do not even know that it exists, let alone how to access the findings. Little is known, therefore, about how useful people might find lived experience research in their daily lives.

Our research team, consisting of researchers with and without lived experience of mental health issues, set out to address this issue. As research is rarely presented for a lay readership, we developed a range of user-friendly formats to disseminate lived experience research findings to people living with mental health issues.

This paper seeks to answer the following research questions:

a) Did exposure to lived experience research increase hopefulness for participants?

b) How else did interacting with lived experience research resources influence participants’ lives?

Study design

We collaborated with peer workers and final year design students to develop a suite of six lived experience research resources. These were introduced to consumers by peer workers, and the intervention was evaluated using a mixed methods approach. A mixed methods approach enabled the research questions to be addressed from different perspectives, providing a fuller picture than could be gained using a single method [ 10 , 11 ]. A quasi-experimental evaluation of hope sought to provide relatively objective evidence of the impact of the intervention; an anonymous survey provided comparable participant ratings of the intervention’s impact in expected areas; and qualitative interviews enabled inductive identification of experiences of most importance to participants. Ethical approval was obtained from the LHD’s Human Research Ethics Committee. Reporting adheres to guidelines for Good Reporting of A Mixed Methods Study (GRAMMS) in health service research [ 12 , 13 ].

We reviewed the literature to identify lived experience research papers in which the findings were directly relevant to the daily lives of people living with mental health issues. We consulted with peer workers and others with lived experience to identify topics most likely to be of interest to users. Through these processes, we identified six research studies to develop into user-friendly resources. Translating these began with a conference workshop [ 14 ] and a full day design lab focused on design thinking [ 15 ]. These were attended by service users, peer workers, researchers, clinicians and final year design students from the University of Technology Sydney. After the design lab, the ideas and prototypes were taken up by the design students for further development. They designed and produced the resources with regular input on content and format from the research team and peer workers. The resources are summarised in Table  1 . Detailed descriptions and photographs are provided in the supplementary materials.

Intervention

During peer worker training, each of the finalised resources was examined by peer workers and the research team, who together reached consensus on how each resource would be introduced to consumers. This was flexible however, enabling peer workers to adapt their explanations and activities to be most appropriate to the needs of individual participants. The agreed upon protocols were developed into a peer worker manual.

In recognition that different content is relevant to different people, participants were asked to select four of the six resources. Peer workers introduced participants to one resource per week for 4 weeks. For most resources, the peer workers showed each participant the resource, went through some of it in detail, explained how it was designed to be used, then gave it to the participant to keep and use in whatever way they preferred.

Sampling and recruitment

The project was carried out in one Local Health District (LHD) in Sydney, Australia. The LHD employs 18 peer workers over three inpatient and four community sites. The project employed five of these peer workers to recruit and provide the intervention to clients of these services. Contacts between peer workers and participants took place wherever peer workers normally met with their clients, for example on an inpatient unit, at a community mental health service, or in a community venue such as a coffee shop.

Eligible participants were: clients of the LHD; able to speak and read English; and able to provide informed consent. Clients were excluded if they were considered by their peer worker or primary clinician to be unable to fully understand the procedures, risks and benefits of participation due to acute illness. We planned to recruit 30–40 participants as previous research indicated that this sample size was sufficient to show change [ 21 ].

Recruitment

Peer workers explained the study to all eligible clients that they saw in the course of their work. If a client was interested, the peer worker gave them written project materials (flyer, participant information sheet and consent form), offered to read through the forms with them, and answered any questions. Clients were given several days to read and think about the project and were invited to call the Chief Investigator to discuss the project further if they wished. In several days, the peer worker recontacted the client and, if they wished to participate, obtained written informed consent. Peer workers emphasised that the research was voluntary, participants could withdraw at any time, and participation or refusal would have no impact on their other interactions with peer workers or health service. Consent was considered not as a one-off event, but an ongoing negotiation between peer workers and participants [ 22 ], where the primary concern was participants’ well-being. Therefore, at each research-related interaction, peer workers obtained verbal confirmation that the client was happy to continue taking part. Participants were given a $50 gift voucher after study completion to thank them for their time.

Allocation to groups

After providing informed consent, participants were allocated to group A or group B to determine when they would receive the intervention. In most cases this was done using a coin toss, however, the staggered timing of recruitment and other peer worker commitments made it necessary for 13 participants to be allocated based on logistical issues. This also meant that the groups were uneven, with 25 participants allocated to group A and 13 participants allocated to group B.

Data collection

Hopefulness was measured using the Herth Hope Index (HHI). The HHI is a 12-item scale that was developed for clinical populations, takes just a few minutes to do, has good psychometric properties [ 23 ] and has been used with a variety of different clinical groups in at least seven languages e.g., [ 24 ]. It includes three factors of: temporality and future ; positive readiness and expectancy ; and interconnectedness . Participants completed the HHI at three timepoints. Group A received the intervention between T1 and T2; group B received the intervention between T2 and T3.

Participants were asked to complete an anonymous online evaluation survey once only, after they had received their four resources (at T2 for group A and T3 for group B). This consisted of a series of fixed-choice questions about each resource including its impact on various aspects of participants’ lives and their overall experience of the project.

Semi-structured interviews [ 25 ] were conducted after participants had received the resources and completed T2 (group A) or T3 (group B). They were conducted by Author 8, who had not been involved in the intervention. An interview guide was used containing open ended questions. The interview guide was used flexibly, allowing for conversational flow and follow-up questions to gather detail about issues that were of importance to participants [ 25 ]. Participants were asked for feedback on the individual resources and about the impact of the resources on them. Questions included: ‘Do you think you got any benefits out of being a participant in this study?’ ‘Was there anything that you didn’t like about being in the study?’ and ‘Did anything change for you as a result of engaging with the resources?’

Interviews were conducted in person in a private room in the health service or, where the participant preferred, over the phone. Interviews lasted between 7 and 30 min, averaging 17 min. Interviews were audio recorded and transcribed verbatim for detailed analysis. Participants were provided with both a copy of their transcript and a summary of findings and invited to comment, however, no participants provided additional feedback.

Data analysis

Herth hope index.

Total scores were calculated for each factor ( temporality and future ; positive readiness and expectancy ; and interconnectedness ) and the overall total score. To examine change over time, paired t -tests were completed between Time 1 and Time 2; Time 2 and Time 3 and Time 1 and Time 3 for all participants as well as for Group A and Group B participants separately. Statistical analysis was conducted using SPSS.

Anonymous survey

Frequencies were calculated and presented in visual format to understand the range of responses.

Qualitative interviews

Data from participant interviews were analysed using interpretative content analysis (ICA). This hybrid method combines qualitative and quantitative techniques [ 26 , 27 ], enabling inductive identification of themes as well and reporting of the frequency of those themes [ 26 , 28 ].

The first step in ICA is inductive coding. Constant comparative analysis (CCA) was employed, as it is a systematic, rigorous, and well-established coding technique which minimises the risk of omission of data (Charmaz, 2014). Segments of data, such as phrases or sentences were examined and allocated one or more code names to reflect the underlying concepts they represented. Each new segment of data was compared to others to identify underlying similarities. For example, the data segments ‘just because you are unwell at times doesn’t mean staying unwell all the time’ and ‘Hope changed for me, it gave me a different angle of hope’ were found to represent the same concept: gaining hope. New data were also compared to existing codes and either added to these, or new codes were developed. Codes were compared to each other and refined by merging similar codes or grouping codes into higher level categories. NVivo computer software [ 29 ] was used to manage the data. Authors 1 and 4 independently coded the first three interviews, then met to discuss coding decisions and reach consensus. Thereafter, the authors met regularly to discuss and review coding decisions. These discussions were aimed at enhancing interpretive rigour, ensuring participants’ viewpoints were faithfully represented. When all interviews had been coded, and the coding list finalised, the transcripts were re-examined to ensure comprehensive coding [ 26 ]. NVivo was then used to identify the number of participants who discussed each theme.

Integration

When data from each component of the study had been analysed, the findings were compared to each other. Authors responsible for analysing different sections (primarily authors 1, 4 and 9) presented findings to the other authors and, through close discussion, questioning, and returning repeatedly to the data, derived an integrated interpretation of the results.

Participants

Sixty-four people were invited to be part of the study and 43 agreed to participate. Five participants (2 from group A and 3 from group B) withdrew from the study after the first assessment and did not receive any of the resources. No participants withdrew between receiving the first resource and the post intervention assessment. Participants were not required to provide explanation for not participating or withdrawing but reasons mentioned included: “limited time/too busy”; “not interested”; “couldn’t be bothered”; “school commitments”; “mental health is okay”; and “anxious”. Thirty-four completed all three assessments, while four participants completed only the pre and post intervention assessments. Thirty participants completed the anonymous survey and 33 participated in the qualitative interviews. Table  2 presents the characteristics of people who participated in the study ( n  = 38).

Characteristics of participants

a 13 participants reported 2 or 3 diagnoses

While our intention was to recruit participants from inpatient and community settings, 36 of the 38 participants were living in the community. This was due to logistical and staff issues rather than potential inpatient participants declining.

The findings are presented below for each of the two research questions. During analysis, the impact of the research context emerged as a factor to be considered in the interpretation of the other findings. Therefore, findings around this issue are also presented.

Does exposure to lived experience research increase hopefulness?

Data about the impact on hopefulness of engaging with the resources comes from all three data sources: the HHI, anonymous survey, and qualitative interviews.

Participant responses to the HHI are summarised in Fig. 1 . There were no significant differences between Time 1 and Time 2 for Group A. However, significant improvements were seen in temporality and future (t = 3.4; p  = 0.003), interconnectedness (t = 2.7; p  = 0.013) and HHI Total Scores (t = 3.1; p  = 0.006) from Time 2 to Time 3 and in temporality and future (t = 2.3; p  = 0.030) and HHI total (t = 2.6; p  = 0.019) from Time 1 to Time 3. There were no significant differences between time points for Group B. For the combined data set, significant improvements were seen in temporality and future (t = 3.1; p  = 0.004), interconnectedness (t = 2.5; p  = 0.018) and HHI Total Scores (t = 3.1; p =  0.004) from Time 2 to Time 3 and in temporality and future (t = 2.8; p  = 0.008), interconnectedness (t = 2.2; p  = 0.035) and HHI total (t = 2.4; p  = 0.023) from Time 1 to Time 3 (Fig. 1 ).

Change in Herth Hope Index over time: all participants and by group allocation

In the anonymous survey, between 80 and 91% of participants who chose each resource reported that it had caused some improvement in their beliefs about their future or recovery, indicating an increase in hope. Responses for each resource are shown in Fig.  2 .

Has accessing the resource made a difference in your life in terms of your beliefs about your future or recovery?

In the qualitative interviews, more than half of the participants (17/33) described how interacting with the resources made them feel more hopeful, positive and empowered. For example, P13 stated, regarding the meaningful activities magazine, that “I just had a little bit of a light bulb moment saying, ‘Well, these things help these people feel better and all these ideas’, so it gave me a bit of understanding and hope for my future.” Similarly, P12, commenting generally about the resources, said that “Seeing other people’s experiences, and that’s really helped to know ‘I can do that too’.” It should be noted that participants were not asked about hope specifically; the theme of hope emerged in response to general questions about the impact of the resources.

How else did interacting with lived experience research resources influence participants’ lives?

It can be seen from Fig.  3 that an overwhelming majority of participants in the anonymous survey found each of the resources helpful, with between 46 and 75% of people finding each resource ‘very helpful’ or ‘extremely helpful’. Further, between 85 and 100% of people, depending on the resource, said that they would recommend it to other people.

Participant perceptions of resources

Participants also indicated that they perceived a positive impact of the resources on the specific aspects of their lives that were measured. For each resource, 60 to 80% of participants reported it had made a small improvement or a big improvement in their lives. Results are summarised in Fig.  4 .

Has accessing the resource made a difference in your life in terms of

The in-depth interviews allowed participants to state their perspectives on the impact of the resources that mattered to them. Overall, 30/33 participants stated, when asked specifically, that they had benefited from being part of the study. Of the remaining three, two answers were unclear and one was not sure if they had benefited. This participant, P31, also reported that nothing had changed for them as a result of the study. With the exception of P31, all other participants described some positive impact from interacting with the resources in subsequent discussion.

The positive impacts people described fell into a number of broad categories, described and exemplified in Table  3 . Counts are the total number of people who mentioned experiencing this impact. As noted above, these impacts emerged as responses to open questions, so a participant not mentioning an impact does not guarantee that they did not experience it.

Self-perceived positive impact of resources

Negative impacts

While most of the impacts participants described were, as seen above, very positive, a few participants reported negative impacts. In the anonymous survey, three people reported that accessing a specific resource had a negative impact in one or two of the specified areas, as seen in Fig. 4 . To contextualise these responses, they were considered alongside each participant’s responses to other questions and are reported in Table  4 .

Participants reporting negative impacts in the anonymous survey

The qualitative interviews also revealed some negative impacts of the resources and provided more detailed information. Three participants reported experiencing some distress from interacting with the resources. It is not possible to tell whether these are the same participants who reported the negative impacts in the anonymous survey. Two participants, while reporting a positive overall experience with the project, said that they had found the content of specific resources distressing because of their past experiences and life circumstances.

P26: Just some of the recommendations [from the hope box] felt like a stab in the gut. Something that I couldn't do in my own life … the one about spending time with friends because I felt that I'd lost friends during my hospital stay .

P19: Personal medicine was, I didn't want to use at all. I just didn't anticipate it. I just, I actually had an upset because I'm an astrologer. I have my own personal way of looking at life … I don't want to have more psychology stuff .

The third participant described feeling upset from hearing about other people’s experiences but did find them ultimately hopeful.

P13: Some of what the participants were experiencing, I experienced those symptoms and I thought it is upsetting. But with what they've set their hope in things to do, it also made me think, well, then I can still feel hopeful about the future .

Impact of the research context

Participants in the qualitative interviews reported that they enjoyed being part of the research project. Findings from the anonymous survey supported this; in response to the question “Overall, how would you describe your experience of participating in the study?”, 18 participants (60%) reported a very positive experience, 10 (33%) gave a ‘quite positive’ response, and two (7%) were neutral. No participants reported a negative experience.

These positive experiences may not, however, have been about the resources alone. Ten people specifically mentioned that they had found being part of the research process a valuable and affirming experience. They appreciated being asked for their opinions about the resources and valued being able to contribute to a piece of research that they saw as worthwhile. Some reported being pleased to know that people with lived experience were doing research and found this hope inspiring.

P25: I really valued being able to, like, participate and do something worthwhile .

P15: I felt stronger because of it, like there's people that care and people that are making an effort to try and help and improve the lives of others .

P26: I think it's helped a lot with my recovery. Engaging with the materials and trying to make them the best that they can be .

The responses of fourteen additional participants to a question about what had motivated them to be in the study, also suggested positive feelings about the research process. Six of these reported that they had agreed to participate in the project because of a desire to make a positive contribution to their community and to the mental health system, saying things like “I felt that maybe I can make a difference for other people like me” (P28). A further six were attracted to it as a piece of research. P29, for example “was interested in the type of research”, while for P27 it was “because I believe in research”. Two more participants wanted their voice to be heard, saying, for example: “I thought it would be good to sort of have my own opinion put out there” (P20).

Four participants spontaneously expressed the hope that the project would continue into the future.

P14: I just hope something, you guys are able to elaborate on, give more of it, the research, to people. I think it's really good, because it could save someone's life. So, I just think, just keep going with it .

This study is the first to examine the potential impacts of accessing lived experience research for people living with mental health issues. Overall, the findings suggest that lived experience research, presented in accessible formats, can result in positive experiences and outcomes.

Initially, the results obtained from the HHI appeared counter-intuitive. The original hypothesis was that participants would demonstrate improved hope between times 1 and 2, for group A and between times 2 and 3 for group B (i.e., that hope scores would increase immediately after engaging with the resource). This was not the case. Yet results from both the anonymous survey and the qualitative interviews indicated that many participants did find engaging with the resources to be hope inspiring. The significantly increased HHI scores between post-intervention and follow-up for group A could suggest that more time is required before the impact of the resources is seen in relation to hopefulness, possibly to integrate learnings from the resources into everyday life. Perhaps if group B had completed the HHI a month following engaging with the resources (i.e., 1 month after Time 3), then significant changes may have been observed. The idea that changes in hope may not be immediate is supported by findings from a recent systematic review of self-management interventions for people living with severe mental illness [ 30 ]. This review found no significant difference in change in hope scores between treatment and control groups at the end of treatment (2 studies, n  = 389, p  = 0.07) but a significant difference favouring the intervention group at follow-up (3 studies, n  = 967, p  = 0.03).

It is also possible that the hope scores for Time 1 were artificially inflated through the process of recruitment and consent relating to the research project. Previous research has found that two experiences that contribute to hope are: feeling respected, listened to and believed; and contributing or helping others [ 9 ]. Our qualitative data suggests that people may have derived hope from finding out about lived experience research and being asked to take part in the research project. People felt that their views and experiences were being valued and could see that by participating in the project they were contributing to something that may help others in the future. It may well be that levels of hope, if measured before the project was explained to participants (a hypothetical possibility only) may have been lower, suggesting that the change between Time 1 and Time 2 that relates to the resources may be underestimated. Given that hope is an overall feeling about life, which is influenced by many factors, the finding that hopefulness increased overall within the short timeframe of our small study suggests a potential benefit of lived experience research that should be further investigated.

While participants’ reports of the impact of the lived experience resources on their lives were very positive, there were a couple of instances where a participant reported a negative impact. This was despite the involvement of peer workers and other people with lived experience in resource development and our efforts to present positive and empowering perspectives. In each case, the negative experience did appear to be within the context of a wider positive experience with the resources. However, given that every individual’s situation and history is unique, it may be impossible to ensure that a resource will never cause distress. Further, short term discomfort may sometimes be ultimately productive. Shifts in perspectives and understandings can often involve tension and conflict as people grapple with new ways of thinking and what these might mean for their previously held stories e.g., [ 31 ]. The findings suggest the importance of involving, in dissemination of such resources, peer workers or others who have a relationship with the person and are experienced in dealing with these kinds of issues, and potential distress. For people who are vulnerable, it may be advisable for peer workers to go through the resource with them, rather than presenting it as a stand-alone resource, while for others it may be advisable to check in with people about their reactions. This issue and the role of peer workers is discussed in detail elsewhere [Authors, in preparation].

When searching for research to use for this study, it was more difficult than anticipated to find appropriate studies. This was for two main reasons. First, there are no standard keywords to identify lived experience research and authors do not always declare their lived experience status. Anecdotal evidence indicates that the latter may be a reflection of stigma and potential discrimination in publishing. Second, we found that only a small minority of lived experience research suggested implications that could be used directly in people’s daily lives. Rather, most was aimed at increasing the understanding or changing the behaviour of health professionals and policy makers [ 32 ]. This type of research is clearly important. However, the current study highlights the potential usefulness of lived experience research focused on facilitating positive knowledge, attitudes and strategies for services users. It suggests the need for funding bodies and publishers to support lived experience research that will produce findings that can be used directly in people’s daily lives. The current study contributes to knowledge translation by highlighting a strategy that addresses the problem of accessing the evidence base and rendering that evidence base user friendly [ 33 ].

This study has several limitations. As with any study relying on volunteers, it is possible that participants were, at the outset, more positively inclined toward lived experience research than those who declined to participate. Peer workers may also have inadvertently differentially approached people they thought would enjoy or benefit from the resources. The sample size was quite small so, for the analysis of change in hope, it is possible that some real differences may not have been identified. A further limitation of the study is that 36 of the 38 participants were living in the community. While peer workers believed that many of the resources would be useful in inpatient settings, logistical and staff issues meant that recruitment was primarily from the community. Future research is needed to confirm the findings of this study with a wider sample, including people in a variety of mental health settings.

It should be acknowledged that this study did not compare resources developed from lived experience research to similar resources developed from other research that was designed to illuminate lived experience perspectives but was not conducted by researchers with their own lived experience. Therefore, while a number of participants expressed positive feelings about the research being done by people with lived experience, it is still unclear to what extent the lived experience authorship was critical to participants’ engagement with the resources.

It is also important to recognise that participants engaged with the resources, not simply as part of their everyday interactions with their peer workers, but in the context of a research project. Participants’ positive experiences with being part of the research project may have affected their overall reactions to the resources. It was impossible to disentangle participants’ experiences of the resources themselves from their experiences of being a participant whose opinions and experiences were being sought for a research study which ultimately aimed to help improve the lives of other people who experience mental health issues. The authors are currently designing a project to investigate the use of the resources in peer workers’ routine practice. By offering resources and training to a large sample of peer workers, then allowing them to use the resources where they feel it is appropriate, we will get a clearer sense of the usefulness of these resources in everyday practice.

Many benefits have been acknowledged in recent years of mental health research being conducted by or in collaborations including researchers with lived experience, for both the researchers and the research itself e.g., [ 1 , 6 ]. The current research indicates that lived experience research, when brought to their attention and presented in user-friendly formats, also has the potential to provide direct benefits to people living with mental health issues. By advocating for lived experience research and sharing the findings in accessible ways, researchers, peer workers and others can support people living with mental health issues to develop new knowledge that they can use for their self-empowerment, recovery and wellbeing.

Supplementary information

Acknowledgments.

We acknowledge the University of Technology Sydney students who provided their design skills for the resource development: Angus Armstrong, Emily Choi, Imogen Karp, Max Mamo, Bailey Tinta and Lilliah Woodham. We are indebted to our amazing research assistants, the peer workers from SESLHD who helped develop the resources and delivered the intervention: Alise Blayney, Nathan Clissold, Candice Fuller, Darren Wagner and Cheryl Wittingslow. Thanks also to the other peer workers and people with lived experience who provided helpful input and feedback about the project and resources as they developed. Finally, we sincerely thank our research participants, who gave up their time to be part of the study and provided us with their insightful feedback.

Abbreviations

Local Health District

Herth Hope Index.

Authors’ contributions

Study conception: AH,KB,KG,HG,BT; Study design: AH,KB,FC,KG,HG,BT,JNS; Site access, ethics and governance management and research assistant support: FC,LD; Research assistant supervision and research management: MH, AH; Data collection: MH + research assistants; Data analysis and interpretation: AH, TD, MH, JNS. Manuscript preparation: AH; critical revision: KB, FC, KG, HG, MH, JNS, BT. All authors read and approved the final manuscript.

This research was funded by One Door Mental Health, through their Research Trust Fund. The funder was not involved with study design, data collection, analysis, interpretation, or publication.

Availability of data and materials

The dataset for the qualitative interviews analysed during the current study are not publicly available as they consist of audio files and transcripts from in-depth interviews which, even with pseudonyms, might potentially allow individual participants to be identified. Deidentified data from the quantitative analysis are available from the corresponding author on reasonable request.

Ethics approval and consent to participate

Ethical approval was obtained from the South Eastern Sydney Local Health District Human Research Ethics Committee (Approval #18/144). Participants provided written informed consent to participate.

Consent for publication

Competing interests.

The authors declare they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary information accompanies this paper at 10.1186/s12888-020-02861-0.

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• Volume 13, Issue 3
• One virus, many lives: a qualitative study of lived experiences and quality of life of adults from diverse backgrounds living in the UK during the COVID-19 pandemic
• Article Text
• Article info
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• http://orcid.org/0000-0002-9946-2509 Mayuri Gogoi 1 ,
• Jonathan Chaloner 2 ,
• Irtiza Qureshi 2 ,
• Fatimah Wobi 1 , 3 ,
• Amani Al-Oraibi 1 , 2 ,
• Heather Wilson 4 ,
• Mehrunisha Suleman 4 , 5 ,
• http://orcid.org/0000-0002-2534-6951 Laura Nellums 2 ,
• http://orcid.org/0000-0003-1521-9964 Manish Pareek 1 , 6 , 7
• 1 Department of Respiratory Sciences , University of Leicester , Leicester , UK
• 2 Lifespan and Population Health, School of Medicine , University of Nottingham , Nottingham , Nottinghamshire , UK
• 3 Public Health Institute , Liverpool John Moores University , Liverpool , Merseyside , UK
• 4 The Health Foundation , London , UK
• 5 The Ethox Centre and Wellcome Centre for Ethics and Humanities, Nuffield Department of Population Health , University of Oxford , Oxford , UK
• 6 Department of Infection and HIV Medicine , University Hospitals of Leicester NHS Trust , Leicester , UK
• 7 NIHR Leicester BRC , Leicester , UK
• Correspondence to Dr Manish Pareek; mp426{at}le.ac.uk

Objectives The coronavirus disease 2019 (COVID-2019) pandemic has had far-reaching consequences for people’s lives. In the UK, more than 23 million have been infected and nearly 185 000 have lost their lives. Previous research has looked at differential outcomes of COVID-19, based on socio-demographic factors such as age, sex, ethnicity and deprivation. We conducted a qualitative study with a diverse sample of adults living in the UK, to understand their lived experiences and quality of life (QoL) during the pandemic.

Methods Participants were recruited with the help of civil society partners and community organisations. Semi-structured interviews were conducted between May and July 2021. Interviews were recorded with permission and transcribed. Transcripts were analysed following an inductive analytical approach as outlined in the Framework Method.

Results 18 participants (≥16 years) representing different ethnicities, sexes, migration and employment statuses and educational qualifications took part. Five key themes and 14 subthemes were identified and presented using the QoL framework. The five key themes describe how COVID-19 affected the following aspects of QoL: (1) financial and economic, (2) physical health, (3) social, (4) mental health and (5) personal fulfilment and affective well-being. The narratives illustrated inequities in the impact of COVID-19 for individuals with intersecting social, economic, and health disparities.

Conclusion Our findings demonstrate the multidimensional and differential impact of the pandemic on different population groups, with most of the negative economic impacts being borne by people in low-paid and insecure jobs. Similarly, adverse social, physical and mental health impacts particularly affected people already experiencing displacement, violence, physical and mental illnesses or even those living alone. These findings indicate that COVID-19 impacts have been influenced by intersecting health and socioeconomic inequalities, which pre-existed. These inequities should be taken into consideration while designing pandemic recovery and rebuilding packages.

• QUALITATIVE RESEARCH
• Public health

Data availability statement

The data for this study consists of interview transcripts of participants that contain potentially identifying and sensitive information. The data cannot be shared publicly due to concerns of participant confidentiality and ethics requirements. Participants consented to the study with the understanding that only de-identified quotations would be made public, not the entirety of the transcripts. Therefore, only illustrative quotes from the transcripts have been included in this paper. Data for this study could be made available on reasonable request to the corresponding author.

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:  http://creativecommons.org/licenses/by-nc/4.0/ .

https://doi.org/10.1136/bmjopen-2022-067569

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Strengths and limitations of this study

One of the few qualitative studies conducted in the UK that has adopted a comprehensive approach to understand the general population’s quality of life and lived experiences during the pandemic.

Our study includes participants from various ‘underserved’ groups such as ethnic and cultural minorities, migrants (including asylum seekers and refugees) and factory workers, who are under-represented in the other evidence in this area.

The qualitative design of the study enabled greater exploration of individual experiences, which augmented the richness and breadth of the data.

As a qualitative study the findings may not be generalisable.

Our study was a single time-point study hence longitudinal impacts, especially in light of the recent cost of living crisis, need further exploration.

Introduction

The coronavirus disease 2019 (COVID-19) pandemic has had devastating and overarching impacts on peoples’ lives all over the world. In the UK, more than 23 million people have been infected, and nearly 185 000 have lost their lives so far in the pandemic. 1 Apart from the direct health costs, measures such as lockdowns and restrictions have had a considerable impact on the economy and society at large. The country’s Gross Domestic Product (GDP) had fallen by 25% in April 2020, as compared with February 2020, and was at 0.5% below the pre-pandemic level in October 2021. 2 3 Although GDP growth has picked up since then, the impact of the pandemic on inflation and price rise is increasingly evident now. 4 5 Related to these financial downturns, employment rates in the UK have also seen a dip since pre-pandemic levels, and ethnic minority workers, young workers and those in low-paid jobs have been most affected. 6 The closure of schools and educational institutions has also negatively affected children’s learning and attainment, mental health, nutrition and general well-being. 7 8 While some of these losses may eventually recover, many of the impacts could be irreversible and lead to permanent damage to health and quality of life (QoL) more widely.

Although the pandemic has affected almost everyone, experiences and outcomes have varied depending on individual and social contexts. 9–11 For example, in the UK, death rates from COVID-19 at the start of the pandemic was highest for people from black African, Bangladeshi, black Caribbean and Pakistani ethnicities. 12 Similarly, data from the Office for National Statistics, UK showed that people who lived in the most deprived areas of England and Wales were two times more likely to die after contracting COVID-19. 13 While previous research has looked at differential outcomes of COVID-19, based on socio-demographic factors, qualitative studies examining differences in the impact of the pandemic on holistic QoL are needed to explicate the socioeconomic gradients of health. 14

QoL is a multidimensional concept and is defined by the WHO as, ‘individuals’ perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns’. 15 In the context of COVID-19, factors such as loss of social contact, economic constraints, concerns about well-being and existing physical and/or mental health conditions are all likely to have a bearing on a person’s QoL. 16 17 Most studies examining QoL during the pandemic have been either conducted among COVID-19 patients or focused on health-related QoL of people with pre-existing physical or mental health conditions. 18–20 We conducted a qualitative study with adults from diverse backgrounds living in the UK, to understand their lived experiences and holistic QoL during the pandemic. In this study, we highlight the range of socioeconomic and health impacts that individuals, families and communities have endured during the pandemic, which in turn can be useful in understanding the socioeconomic gradient of health in general and also informing recovery and rebuilding efforts in post-pandemic times.

Research design

We designed our research as a rapid qualitative inquiry to understand people’s experiences of living through the COVID-19 pandemic and the changes that have come about in their lives on account of it. This is to understand how an individual’s ‘real-life’ context influenced his/her experiences of the pandemic. 21 We wanted to explore how the social, cultural, political and historical contexts that people occupy have determined how different individuals have experienced the pandemic and what impacts it has had on people’s QoL. 9

Study setting, participants and recruitment

The study was conducted with 18 participants living in the UK, and predominantly in Leicester, which is one of the most ethnically diverse cities in England and also ranks very high in the deprivation index. 22 Leicester was also one of the worst COVID-19 affected areas in the country with high case and mortality rates and had to endure longer lockdown and restriction measures on account of this. 23

Participants were adults (>16 years) from different ethnicities, migration statuses, educational qualifications and employment statuses. This enabled us to acquire data saturation by means of having a ‘thick’ data set that is, ‘many layered, intricate, detailed (and), nuanced’. 24 The sample size was not pre-fixed but was determined by how many participants were recruited during the recruitment and data collection period, which was roughly 4 months. Participant recruitment was supported by civil society partners and community organisations that had worked with the research team on previous projects. These included charities working with homeless people and migrants, educational institutions, ethnic and religious groups and employing organisations such as factories. Participants with basic English speaking skills (as interviews were to be in English due to time and resource limitations) were identified and approached by these organisations from among their service users, client groups or staff and the participant information sheet was shared with them prior to participation. These organisations shared the contact details of prospective participants (who expressed interest) with the research team who then made contact to formally recruit them into the study.

Data collection

Data for this study were collected, both remotely and in-person, by two female researchers, MG and FW, who are both experienced in conducting qualitative research with culturally and ethnically diverse communities. Interviews were conducted between May and July 2021, and hence, at the time of data collection participants had endured three national lockdowns, and those from Leicester had experienced additional regional lockdowns between the second and third national lockdowns. Interested participants gave consent online or on paper, and filled in a short demographic questionnaire, which included information on age, sex, ethnicity, qualification, employment status, job role (if employed), home postcode and country of birth. Participants were invited to take part in a one-to-one interview, which was conducted in English and was either through Microsoft Teams, or over the telephone or in-person. Participants were offered the choice of mode that they would prefer to be interviewed and while the majority of interviews were conducted online, some participants also opted to be interviewed telephonically or face-to-face. Although we did not perceive any major differences in the data collected through the three different modes, in retrospect, the telephonic ones probably took longer to establish the initial rapport as non-verbal cues such as smiles and nods could not be exchanged with participants. Despite this limitation, in all the modes, both the interviewers used vocables such as ‘uh-huh’ or where required probed and offered gentle encouragement to demonstrate their involvement and interest which helped with the flow of the discussions.

The topic guide was designed to explore individuals’ experiences of the pandemic with opportunities to probe in-depth about their economic, social and cultural contexts (see online supplemental file 1 ). The topic guide was developed from prompts in the literature, and also informed by the research team’s ongoing as well as past engagements with some of these communities. Interviews lasted for 45–60 mins, and participants were given shopping vouchers as a token of appreciation. Interviews were recorded with prior permission and recordings were transcribed by professional transcribers, and transcripts were checked for accuracy by the research team.

Supplemental material

Data analysis.

The study adopted an inductive approach following the Framework Method enumerated by Gale et al . 25 Data analysis began with the transcription of the interviews, followed by reading of a set of transcripts each by three researchers, MG, IQ and JC, to further familiarise themselves with the interviews and immerse themselves in the data. In the next stage, the researchers conducted manual line-by-line coding of three transcripts each. This preliminary coding was discussed to arrive at a ‘working analytical framework’ which was then applied to all the remaining transcripts 25 with modifications made to the framework until saturation was reached and no new codes emerged from the data. Thereafter, using a Microsoft Excel sheet, data was charted into various categories corresponding with the codes. Finally, the wider team (MG, IQ, JC, AA-O LN and MP) had joint discussions to interpret the charted data, and rearrange categories, collapse codes and identify connections among codes to arrive at the various themes and subthemes of the QoL framework. The QoL categories used in the analysis have evolved from the data and not been determined a priori.

The research team also individually and collectively reflected on their own influences regularly during the study period. Study team members were mindful of their own values, lived experiences and perspectives which could have influenced and added bias to the study results and findings. Importantly, the researchers from this study also recognised their own positionality in that they too, just like their participants, had also lived experiences of the COVID-19 pandemic. This helped them comprehend the participants’ experiences better but at the same time they needed to be alert not to influence participants’ responses by asking leading questions or projecting their own experiences. The interview team were also mindful of the different social and cultural backgrounds of the participants and at times the interviewer’s own ethnic minority background or being a woman or being from a migrant background brought greater acceptance from some participants. Furthermore, reflexive group meetings enabled the team to also identify new areas (eg, difficult relationships) to be probed in upcoming interviews and data interpretation.

Patient and public involvement

Patients or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Demographic data

We recruited 18 participants from diverse social and economic backgrounds, such as asylum seekers, factory workers, full-time family carers and frontline workers, to form our sample. Participants’ demographic characteristics are provided in table 1 .

• View inline

Participants’ demographic details

Five key themes and 14 subthemes were identified from the data describing how COVID-19 affected the following aspects of QoL: (1) financial and economic, (2) physical health, (3) social, (4) mental health and (5) personal fulfilment and affective well-being. Online supplemental table 1 provides an overview of these themes and subthemes as QoL categories and subcategories with illustrative quotes. These categories and subcategories are also detailed in the following paragraphs.

QoL category 1: financial and economic

Change in household income, unemployment and job precarity.

Almost one-third of our participants reported a reduction in their household income due to the pandemic. Participants who were furloughed (The furlough scheme was launched in the UK in March 2020 to support employers wherein they received funds from the government to cover the majority of wages for employees not working due to COVID-19 restrictions and employees were getting at least 80% of their gross pay.), had lost work, moved to a lower paying job or saw a change in their family circumstances such as divorce or separation said that the pandemic had resulted in a reduction to their household income. The majority of these were women with lower educational qualifications and limited skills and mainly working in low-paid jobs and/or on insecure contracts. Some of the jobs held prior to the COVID-19 pandemic ceased to exist afterwards due to redundancy and staff restructuring.

Despite changes in household income, living expenses such as rent and mortgages remained unchanged. Some participants who had lost their jobs or were furloughed also discussed the uncertainty around their employment and how they found it difficult to find new jobs. The loss of income from self-isolation (due to shielding or infection) concerned some of our working participants. Some of our participants also experienced housing difficulties either due to crowding or changes in their housing circumstances.

The pandemic also resulted in increased financial benefits for some participants due to new working opportunities and longer shifts. Others also experienced reduced expenses from not eating out or savings on travel costs due to working from home. Sometimes, though, these extra work-shifts were not voluntarily opted for by participants and were rather the result of having to keep services running.

Increased cost of living

The cost of living also reportedly increased for some participants during the pandemic. Changes in working circumstances due to working from home and additional costs such as increased food prices were burdening factors on household finances. Some participants also reported an increase in the cost of energy bills from staying home. For most participants, having to work from home or having to home-school children also meant that they had to pay for internet services and/or buy additional equipment or electronic devices.

Lack of social security

Several of our participants were already in economically and socially vulnerable positions before the pandemic. For instance, two of our participants were asylum seekers, one was a recent migrant who worked as a part-time server, one was a full-time carer, one was a taxi driver and one experienced domestic violence. For most of these participants, the pandemic had not only aggravated their financial hardships by way of job-loss or salary cuts, but many also said that public funds such as Universal Credit or childcare benefits were either not available to them or were unsustainable. Furthermore, the closure of communal kitchens and charities during the pandemic severely impacted some of our participants who relied on charitable support.

QoL category 2: physical health

Risk and safety.

Risk to personal physical health was perceived to be low by most of our participants, and many stressed on the hygiene and behavioural changes that they had adopted to protect themselves. However, for participants who themselves or their family members had any comorbid conditions such as diabetes, the risk was perceived to be greater. Moreover, those in frontline jobs such as health or social care acknowledged the exposure risks at work and worried that they might bring the infection home or pass it on at work. These participants, though, felt that they had the appropriate levels of personal protective equipment (PPE) at their workplaces and spoke positively of their employers’ decisions to enforce strict PPE guidance for the benefit of all.

Access to healthcare services

Several participants shared that accessing healthcare services or advice was difficult during the pandemic. They were either unable to make bookings for consultations with their general practitioner (GP) or were required to wait several weeks for an appointment. A few participants also mentioned that they faced inconvenience due to unclear direction and information from healthcare providers, which resulted in them shuttling between GP surgeries and/or pharmacies. Unable to get appointments, some participants also expressed concern that their symptoms and conditions had since worsened. Participants with mental health needs also found that booking appointments and consultations with mental health services were fraught with similar access issues as GP surgeries. One of the participants who had witnessed an acquaintance commit suicide attributed it to the lack of timely help and support from mental health services, and feared that there are others who may take this extreme step if help is further delayed.

COVID-19 vaccination

Among our participants, almost half had at least one dose of the COVID-19 vaccine. While about one-third of participants had not been eligible at the time of interview, some others had declined to get the vaccine. COVID-19 vaccine hesitancy, that is, delay, refusal or even scepticism about the vaccine, was found to be higher among female and ethnic minority participants. One of the most cited reasons for this hesitancy was doubt surrounding the vaccine’s safety, especially given its rapid development. Reports of blood clots from the AstraZeneca vaccine also concerned some. Some participants also shared how they had encountered rumours and misinformation about the vaccine, which had made them question the safety and efficacy of the vaccine.

QoL category 3: social

Loss of community and relationships.

A profound social impact of the pandemic that participants experienced was the loss of community interaction due to restrictions on gathering, visiting and stay-at-home orders. Participants who were living by themselves found this social isolation most challenging, with some likening it to being in prison. Lockdown changes also seemed to have taken a toll on interpersonal relations of some participants and one participant reported going through a divorce and another reported a break-up with her boyfriend during the pandemic.

Challenges to family functioning

Participants living with families described how changes like closure of schools and working-from-home affected them negatively and added to their stress. Several of our female participants spoke about the problems they encountered in home-schooling their children, and how it led to greater frustrations for them and the children alike. Moreover, some participants also shared that restrictions on meeting and visiting people outside the household meant that care responsibilities could not be shared with extended family or friends like before. Some participants also shared how their household routines changed to accommodate every member’s working-from-home or home-schooling needs.

Experiences of stigma and discrimination

Some of our participants stated that the COVID-19 pandemic had increased stigma and discrimination against individuals from ethnic minority backgrounds. Participants spoke of their experiences of being targeted, stigmatised and discriminated against in public, based on their religious, cultural or ethnic background during or even before the pandemic. For one participant, past experiences of being judged or discriminated against made her opt out of seeking support, even for essential healthcare needs.

QoL category 4: mental health

As mentioned earlier, the limitations on socialising were challenging for most of our participants, and had a significant negative impact on their overall well-being and mental health. Many of our study participants described that their experiences of isolating, shielding or working-from-home made them feel lonely, depressed, frustrated and anxious. Some participants described how being stuck at home during the lockdown days made them feel demotivated and lose sense of time and routine. Some participants also believed that lockdown loneliness was amplified for people with limited digital skills, such as the elderly and those with existing mental health conditions.

Fears and worries

Most participants reported being fearful of the pandemic, and worried about their health and financial circumstances. Fear around the well-being of loved-ones bothered many participants, and for those who had family abroad, the travel restrictions added to their worries. Participants with children also worried about their children’s education and well-being. Some of our participants believed that the media coverage of the pandemic had added further anxiety. Participants who worked in health and social care settings also described how they had personally witnessed or known of people dying from COVID-19, which made them fearful of infection and also inadvertently spreading infection to others.

Pre-existing mental health conditions

Participants who or whose family members had pre-pandemic diagnoses of mental health conditions reported worsening of these conditions during the pandemic. The restrictions on face-to-face consultations left them unable to access counselling or other forms of psychotherapy regularly. Some of these participants also remarked that remote consultations, which were initiated after a while, were not very helpful. Support groups were also temporarily disbanded, which disadvantaged some participants. One participant also said that in lieu of face-to-face consultations and therapies, he was instead prescribed pharmaceutical drugs to treat his anxieties and depression, which he believed was not in his best interest.

QoL category 5: personal fulfilment and affective well-being

Opportunities for personal and professional development.

While the pandemic may have largely negatively impacted the lives of our participants, COVID-19 also provided new opportunities to some of our participants to reflect on their personal circumstances and pursue new personal development targets and ambitions. Other participants had also used the COVID-19 pandemic, and social isolation as a chance to improve social relations. Some of our participants also used the opportunity of working from home or on furlough to undertake career development activities or pursue career changes.

Affective well-being

Several of our participants mentioned that their religious beliefs had helped them cope with their anxieties, stress and fears. For some participants, volunteering also gave them a sense of purpose and helped them live through the pandemic. Many also reported that people had generally become more empathetic, kind and willing to support each other. Some participants also counted it as a blessing to have their family around and be able to spend time with them. However, some participants also reported negative affectivity, and shared about feeling sad at the prolonging of the pandemic or agonising about the future.

In this study we describe the lived experiences and QoL of adults living in the UK during the COVID-19 pandemic. Our findings expose the differential impact of the pandemic on people’s lives depending on their circumstances. Interviews revealed that economic impacts of the pandemic were not uniform for all participants, and while a few benefitted from increased income and greater work opportunities, others who were in low-paid jobs, and/or on part-time or temporary contracts faced job losses, or reduction in income. This finding is in line with previous research, which has reported how certain groups have borne the burden of economic constraints brought in by the pandemic. 26 27 Individuals from ethnic minority communities, migrants and single parents face multiple intersecting disadvantages, exacerbating their economic and financial difficulties during the pandemic. 27 28 Furthermore, food insecurity due to the closure of food banks and communal kitchens, increased expenses for food and heating, and difficulties in accessing social security experienced by some of our participants were also elucidated by other researchers. 29 30 It is very likely that these conditions may have worsened in recent times owing to the burgeoning cost of living crisis that the country is witnessing. However, the generations of entrenched intersecting inequalities based on ethnicity, gender, education, age and more that had led to the disproportionate impact of the pandemic on certain groups would continue to be exacerbated by these recent economic downturns. This indicates that recovery and rebuilding efforts after the pandemic have to be multisectoral (including health, education, housing, financial security, etc), coordinated and targeted at those most in need.

Our finding shows that participants felt most at risk if they or their family members had comorbid conditions like diabetes or hypertension. These findings gain significance in light of the fact that most of these comorbidities are proven risk factors for COVID-19, and the elevated prevalence of these conditions in some ethnic minority groups mean that they are at an increased risk of COVID-19 and adverse outcomes. 31 Along with this, it was also observed that for some of our ethnic minority participants, the awareness that they (or their family members) may be at increased risk because of their ethnicity or health condition increased their apprehensions and anxieties. Additionally, a large proportion of our ethnic minority participants worked in frontline roles, had large or multigenerational households and often occupied smaller dwelling units, which increase the chances of transmission and infection. 32

Along with disparities in health, our findings also indicate unmet health needs due to unavailability or cancellation of appointments. While the pandemic put additional pressure on the UK National Health Service and created massive backlogs and long delays for patients, 33 certain communities such as migrants and those living in deprived areas were known to be disproportionately affected by delays or gaps in access to healthcare services even before the pandemic. 34 Our findings corroborate the health inequalities experienced by minoritised and marginalised communities, and highlight the risk that they may present to healthcare with more severe illness due to these delays. To address these inequalities greater investments should also be made in preventive healthcare of communities at risk of developing diseases. Support and awareness campaigns on healthy diet, healthy lifestyle, early screening, etc, should be provided to vulnerable and isolated populations through local charities and organisations which are trusted by these communities.

Among our participants, vaccine hesitancy was observed in some ethnic minority and female participants. Research has shown that vaccine hesitancy is highest in the most deprived areas of the UK, and among ethnic minority communities, which is a cause of concern as these are groups which are most at risk from COVID-19 and experience health inequalities which pre-date the pandemic. 10 Low trust in the safety and efficacy of the vaccine has been found to have driven hesitancy among our participants, which is corroborated by evidence from previous studies. 35 Hence, targeted public health messaging dispelling fears and myths and engagement with communities through trusted organisations and leaders is needed to improve vaccination uptake as new waves and peaks of the pandemic continue to emerge.

Our data reveal that fear and worries were reported by almost all the participants, although the sources of these fears varied, with the most common being the well-being of loved ones. This finding corroborates with other studies examining ‘fear’ among people during the pandemic. 36 37 There are other domains of fear and worry as well that participants have experienced, such as fear of being ill themselves, worrying about finances and facing uncertainty. 36 While for most, these fears can be overcome or regulated, there is a chance that for some, these fears may have an impact on mental health and daily functioning. This is especially true for people with pre-existing mental health conditions, or those experiencing greater stressors or barriers to care, for example, asylum seekers and those experiencing domestic violence. 38 The inadequacy and gaps in mental health services and care during the pandemic, as reported by our participants, could worsen mental health. Hence, if mental health needs and improving services are not prioritised, the likelihood of a mental health epidemic is very real.

Social isolation due to physical distancing measures has been found to have a considerable impact on the quality of life of our participants. Such stressful situations combined with personal vulnerabilities and social conditions may have negatively impacted on interpersonal relationships as indicated by some of our participants. 39 Similarly, additional burden put on families by closure of schools, home-schooling and working from home have been shown to increase anxiety among parents and children, and disrupt family functioning. 40 Research has also shown that the burden of unpaid care work has been borne disproportionately by women during the pandemic, impacting their health and well-being. 41 Most of our female participants with school-aged children shared similar anxieties about managing home-schooling and household chores. Apart from this, the racial and religious discrimination faced by ethnic minority communities, both before and during the pandemic put additional strain on participants from these communities to protect themselves not just from the virus but also from the wider experiences of marginalisation and violence which were seen during the pandemic. 42

Personal and occupational fulfilment are important benchmarks in QoL 43 and are dependent on an individual’s spiritual fulfilment and social support. The strong association between better social support and affective well-being during crises indicates that individuals whose support systems are compromised are at higher risk of experiencing negative feelings. 44 It was also observed in our study that participants who had limited social support (eg, more isolated participants, including those who were experiencing domestic violence or asylum seekers) had difficulties in overcoming the adverse impacts of the pandemic, which overwhelmed them emotionally. This underscores that there are intersecting factors influencing the impact of pandemic on different individuals and groups and thus, coordinated and long-term efforts are required if we wish to build back society better and fairer.

Limitations

Our study has certain limitations, including our sampling frame. Our focus was on recruiting participants from a range of socioeconomic backgrounds, and particularly from certain ‘underserved’ groups such ethnic minorities and migrants. However, we did not identify participants from certain other ‘underserved’ groups including gender minorities or people with disability. Despite this limitation, we recruited a sample which is diverse in terms of ethnicity, educational and migration status, and social and economic conditions such as survivors of domestic violence, factory workers and asylum seekers. Our ethnically and socioeconomically diverse sample meant that our data provide insight into a range of pandemic experiences, and highlight the unique issues and concerns that each of these individuals and families had encountered. However, this also means that findings may not be generalisable, and larger quantitative studies are needed to validate the findings at a population-level. Moreover, the rapidly evolving situation around COVID-19 policies and vaccination may mean that some views expressed on this topic by the participants at the time of the interview may have changed. However, we believe other areas of life such as economic instability and increasing cost of living continue to be relevant and need further studies to ascertain the full impact.

Our findings demonstrate the multidimensional impact of the COVID-19 pandemic on people’s lives. This study brings to light the differential impact of the pandemic depending on people’s intersecting socioeconomic circumstances. The data reveal that most of the negative economic impacts have been borne by people in low-paid and insecure jobs. Similarly, adverse social and mental health impacts particularly affected people experiencing displacement, violence, pre-existing mental illnesses or isolation. Thus, these findings indicate that COVID-19 responses should take into account existing health, social and economic inequalities while designing recovery and rebuilding packages.

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Patient consent for publication.

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Ethics approval

Ethical approval for the study was granted by the Medicine and Biological Sciences Research Ethics Committee, University of Leicester, UK (Reference number 30058-cjg29-ls:healthsciences). All participants provided written formal consent to participate.

Acknowledgments

The authors would like to thank the participants for their time and inputs. We would also like to thank the organisations who supported us with participant recruitment. MP acknowledges support from a National Institute for Health Research (NIHR) Development and Skills Enhancement Award and also from the NIHR Leicester BRC and NIHR ARC East Midlands. LN acknowledges support from the Academy of Medical Sciences (SBF005/1047) outside of the submitted work. MG, JC, IQ, FW and AA-O’s research time was also supported by the UK-REACH project funded by the MRC-UK Research and Innovation (UKRI) and the Department of Health and Social Care through the NIHR (Grant Number: MR/V027549/1) outside of the submitted work. We would also like to thank the following organisations and individuals for their support in recruiting for this study: Leicester College, Leicester City of Sanctuary, Samworth Brothers Limited, Dr. Margaret Byron, Dr. Idil Osman, Mr. Riaz Khan, City Retreat Leicester, and Women 4 Change. Finally, we thank all our participants for taking part in our study.

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• Data supplement 1

LN and MP are joint senior authors.

Twitter @jonchaloner

Contributors MP: Conceptualisation; Funding Acquisition; Methodology Development; Writing-Review & Editing. LBN: Conceptualisation; Funding Acquisition; Methodology Development; Formal Analysis; Writing-Review & Editing. MG: Data Curation; Formal Analysis; Writing- Original draft and preparation; Writing-Review & Editing. JC: Formal Analysis; Writing- Original draft and preparation; Writing-Review & Editing. IQ: Formal Analysis; Writing- Original draft and preparation; Writing-Review & Editing. FW: Data Curation; Writing-Review & Editing. AAO: Formal Analysis; Writing-Review & Editing. HW: Writing-Review & Editing. MS: Conceptualisation; Methodology Development; Writing-Review & Editing. MP is responsible for the overall content as the guarantor.

Funding This study was sponsored by the Health Foundation, UK (Grant Number: 2583173).

Competing interests MP reports grants from Sanofi, grants and personal fees from Gilead Sciences and personal fees from QIAGEN, outside the submitted work. All other authors declare no conflict of interest.

Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Provenance and peer review Not commissioned; externally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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Life Experiences Throughout the Lifespan: What Do People Say (or Not) About Them?

• Published: 21 November 2017
• Volume 25 , pages 69–85, ( 2018 )

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• Vanessa Azevedo   ORCID: orcid.org/0000-0003-4850-258X 1 ,
• Carla Martins 1 &
• Ângela Maia 1  

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Life experiences have been a topic of interest for researchers and clinicians for decades. Current knowledge is rooted in two distinct approaches, i.e., personality psychology and psychosomatics. Whereas the first is interested in ordinary life stories of nonclinical individuals, based on a more qualitative, in-depth, and person-driven approach, psychosomatics stresses negative events, mainly in clinical samples, and presents a more quantitative, general, and construct-driven approach. Consequently, available evidence is dispersed and unrelated and many basic questions remain unanswered. This study aimed to explore occurrence, developmental stage, valence, and impact of life experiences and to analyze critical answering patterns (i.e., “I don’t remember,” missingness). Through a cross-sectional retrospective design, 394 adults from the community answered the Lifetime Experiences Scale, which covers 75 life experiences organized in eight domains (i.e., school, job, health, leisure, living conditions, adverse experiences, achievements, and people and relationships). Occurrence of life experiences varied greatly, and the mean number of experiences reported was approximately 30. Regarding developmental stage, most experiences were reported in just one stage—mainly adulthood—however, some could be considered chronic. Globally, life experiences tended to be clearly rated as positive or as negative; additionally, assessed experiences were mainly appraised as positive. Moreover, participants presented their experiences as significant, rating them as high impact. Overall, critical answering patterns were not very expressive: “I don’t remember” and missing answers were below 2 and 5%, respectively, in the majority of experiences. These findings offer several important new insights, suggesting that life experiences are mainly an idiosyncratic topic.

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This manuscript is part of a doctoral dissertation, which had the support of the Portuguese Foundation for Science and Technology (FCT), through the PhD grant with the reference SFRH/BD/76022/2011, funded by POPH-QREN-Typology 4.1-Advanced Training, reimbursed by the European Social Fund and national funds from State Budget. This study was conducted at Psychology Research Centre (UID/PSI/01662/2013), University of Minho, and supported by the Portuguese Foundation for Science and Technology and the Portuguese Ministry of Education and Science through national funds and co-financed by FEDER through COMPETE2020 under the PT2020 Partnership Agreement (POCI-01-0145-FEDER-007653).

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Azevedo, V., Martins, C. & Maia, Â. Life Experiences Throughout the Lifespan: What Do People Say (or Not) About Them?. J Adult Dev 25 , 69–85 (2018). https://doi.org/10.1007/s10804-017-9277-6

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Research Design Review

A discussion of qualitative & quantitative research design, navigating narrative research & the depths of the lived experience.

The following is a modified excerpt from Applied Qualitative Research Design: A Total Quality Framework Approach (Roller & Lavrakas, 2015, pp. 298-300).

The belief in narrative research is that it is the narrated story—whether told orally, via some form of text or documents, and/or through the use of visual data (e.g., photographs, video, drawings)—that allows researchers to learn about individuals, society, and history, and that, indeed, “narrative inquiry [is] the study of experience as story” (Clandinin, Pushor, & Orr, 2007, p. 22).

For the most part, there are three (not mutually exclusive) ways to consider narrative inquiry, by the type of:

• Narrative being studied: for example, life history, life story, biography, autobiography, or autoethnography.
• Analytical approach used by the researcher: for example, thematic, structural, dialogical/performance, or visual (Riessman, 2008).
• Scholarly discipline applied to the research: for example, psychology, sociology, or education.

The variations of narrative research across fields of study demonstrate that there is no one way to think about narrative inquiry and, indeed, the three delineated types of approaches—narrative, analytical, and discipline—are often co-mingled. For example, various factions of psychology have embraced the use of narrative: with heroin addicts to understand “how individuals phenomenologically wrestle with decisions at crucial transition points in their lives” (Singer, 2013, p. 46); in identity research, by which people’s life stories can be analyzed from multiple perspectives, including the “small stories” within the “big stories” (Bamberg & Georgakopoulou, 2008), as well as the conditions that shape their stories and how the stories shape their life experiences (Esteban-Guitart, 2012); and to explore the connection between social stigma (e.g., not being accepted, being the target of discrimination) and intimacy in same-sex relationships (Frost, 2013).

Sociologists such as Cederberg (2014) have considered the biographical narratives of migrants and how public discourse potentially molds these narratives of their lived experiences. And Luttrell (2003), also a sociologist, elicited visual and performance narratives from pregnant teenagers who were better able to express their life stories in these less structured approaches than in response to conventional narrative interviews, explaining that “the more I stayed out of their way, the more the girls would talk and free associate while doing these self-representations activities. For me, this meant giving up my more immediate desire to ask questions, make sense of, or put order into the girls’ creative expression or their conversations” (p. 150).

Scholars from many other disciplines are also using narrative research. For example, educational researchers such as Clandinin and Connelly (1998) used “narrative histories” to study school reform by investigating the school as a “living place” where “teachers and the principal come to the landscape living and telling a complex set of interwoven stories of themselves as teachers, of children in this school, of the community” (p. 160). Austin and Carpenter (2008) used narrative research with mothers of children who are “disruptive” in the classroom (i.e., who have attention-deficit/hyperactivity disorder) to explore the “harsh and judgmental treatment” these mothers experience “from medical professionals, teachers, friends and family” (p. 379).

Examples of the anthropological uses of narrative include such work as the analysis of the narrative elements in Eskimo folktales (Colby, 1973), and the use of historical narratives as “cultural tools” to examine the presentation of events in post-Soviet Russian textbooks (Wertsch, 2000). Communication and health care researchers have explored “illness narratives” by way of online conversations among people suffering from drug addiction in order to understand their life experiences and the effectiveness of online support (Jodlowski, Sharf, Nguyen, Haidet, & Woodard, 2007). Scholars in social work have demonstrated the challenges and benefits of conducting narrative research with marginalized segments of the population, such as teenage mothers (Harlow, 2009), young people from the child welfare system (Martin, 1998), and heterosexual serodiscordant couples (Poindexter, 2003). And, social scientists engaged in performance studies, such as Madison (2003), have used the performing arts to communicate the stories of significant political moments in history.

Navigating the waters of narrative research is a rewarding experience that takes the researcher into the uncharted depths of human behavior and attitudes to exact meaning and bring about change for the social good.

* The critical role that storytelling plays in research methods is also discussed in this Research Design Review article.

Austin, H., & Carpenter, L. (2008). Troubled, troublesome, troubling mothers: The dilemma of difference in women’s personal motherhood narratives. Narrative Inquiry , 18 (2), 378–392.

Bamberg, M., & Georgakopoulou, A. (2008). Small stories as a new perspective in narrative and identity analysis. Text & Talk , 28 (3), 377–396.

Cederberg, M. (2014). Public discourses and migrant stories of integration and inequality: Language and power in biographical narratives. Sociology , 48 (1), 133–149.

Clandinin, D. J., & Connelly, F. M. (1998). Stories to live by: Narrative understandings of school reform. Curriculum Inquiry , 28 (2), 149–164.

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