The lived experience of caring for someone with bipolar disorder: A qualitative study

The study addresses the question: what are the lived experiences, coping strategies, and support needs of informal carers of individuals with bipolar disorder (BD), and how do these needs vary across phases of the illness? In Australia, approximately 1.3% of the population will experience BD, a cyclical condition marked by episodes of mania/hypomania and depression, which burdens not only those diagnosed but also their informal carers’ mental and physical health. Prior work indicates high distress and burden among carers of serious mental illnesses, yet research specifically focused on carers of people with BD—particularly in Australia—remains limited. Unique stressors in BD (e.g., impulsive spending, risky behaviors, suicidality, hospitalizations, relational strain) suggest carers face distinctive challenges that can fluctuate with symptom phases. This study aims to (1) gain insight into carers’ experiences, including warning signs, coping, lifestyle factors, and changing stressors across illness phases, and (2) understand what information and support carers need to care for themselves and their loved ones.

Existing literature often examines carers of people with mental illness broadly, with limited BD-specific focus and scant Australian data. Carers of schizophrenia and serious mental illness report emotional, financial, physical and social impacts, isolation, stigma, and exclusion from decision-making. International BD-focused qualitative studies suggest carer inclusion requires systemic and policy changes, while carer burden is influenced by individual, social, and organizational factors. In BD, manic-phase behaviors (e.g., impulsive spending, substance use, risky behavior, sexual indiscretions) and depressive/mixed phases with elevated suicidality create unique burdens. Stigma toward BD exacerbates carer distress and reduces social support and coping effectiveness, with caregiver burden predicting carer depressive symptoms. Psychoeducation for carers shows some benefits post-treatment, but questions remain about longevity and best delivery modes; mHealth and online approaches may help, yet online CBT tailored for carers of people with BD is lacking. Overall, evidence underscores the need for condition-focused, carer-tailored supports and improved inclusion of carers in care processes.

Design and ethics: Qualitative phenomenological study within a wider mixed-methods project; approved by the University of Newcastle HREC (H-2020-0436). Recruitment and sampling: Purposive recruitment via social media (Facebook); participants from the wider REDCap survey who consented to interview. Eligibility: adults (≥18) in Australia, main informal carers of someone with DSM-5 BD; excluded if insufficient English. Participants: 17 consented; 15 completed interviews (2 non-responders). Procedures: Semi-structured telephone interviews conducted by the lead author (female, second-year Clinical Psychology Masters student with prior qualitative interview experience). Interviews: 21–49 minutes (mean ~34 min), audio-recorded with consent, transcribed verbatim by Outscribe under confidentiality. Participants could review/edit transcripts; they received a $20 AUD digital gift card. Interview guide: 17 open-ended questions covering background, caring experiences, coping, support, information needs, and program development; based on a modified Orford et al. stress–strain–coping–support approach; narrative prompts used with flexible order. Data management and analysis: Reflexive thematic analysis per Braun & Clarke. Researchers (BS, TH, FKL) independently familiarized with data and coded five transcripts each, discussed patterns and engaged in bracketing to set aside presuppositions. BS coded all transcripts in NVivo; iterative discussions finalized and named themes/subthemes; themes collated on MIRO; supervision and reflective journaling guided meaning-making. Saturation considerations were discussed; additional interviews were conducted if novel themes emerged.

Five themes emerged: 1) Separation of the person and the disorder: 13 participants emphasized distinguishing loved one from illness-related behaviors to preserve empathy and relationship quality; setting boundaries and removing oneself when needed were important, though grief/confusion about what was 'illness vs. person' was common. 2) Carer health and coping strategies: All participants reported detriments to mental health (anxiety, depression, stress, fatigue) and physical health (changes in diet, weight, exercise; some increased substance use). Eight sought psychological or pharmacological support. Nine highlighted self-care strategies (nature, exercise, socializing, creative hobbies, yoga/meditation) and enforcing boundaries as protective over time. 3) Unpredictability and variability of symptoms: All described BD as a rollercoaster with hard-to-manage symptoms (violence/irritability/anger, suicidal ideation, sexual indiscretions, excessive spending, absconding). Eight reported alcohol/other drug issues in the person with BD; many faced repeated hospitalizations. Eleven noted relationship impacts; four reported stress due to sexual indiscretions; nine reported significant financial strain. Carers often felt hypervigilant and anxious; communication skills helped manage unpredictability. Some reported increased empathy/compassion/patience and appreciated positive traits (e.g., creativity). 4) Carer disillusionment and silencing: Carers felt invisible, excluded from decision-making, and unsupported by healthcare; advice often focused solely on the patient without regard for family systems. Missed opportunities for provider check-ins were common. Stigma drove silence and isolation; 13 discussed feeling ‘invisible’ or not discussing experiences. Role reversals occurred for some children caring for parents. Ten referenced stigma affecting both carers and those with BD. 5) Story sharing and support needs: Participants endorsed needs for peer support (preferably BD-specific), practical information (medication, emergencies, BD types/symptoms, communication with children, financial tips), coping and psychological skills (stress management, responding to crises, self-care, boundary-setting). Fourteen wanted coping and psychological strategies included in support; many had to self-educate online. Affordability and accessibility were major concerns; some advocated for policy change and wished to help other carers.

The findings illuminate the chronic, cyclical, and unpredictable nature of BD-related stressors for carers and how these distinct challenges heighten burden, hypervigilance, and anxiety. The study addresses the research aims by detailing carers’ experiences across illness phases, identifying key coping strategies (self-care, boundaries, communication), and specifying practical and psychosocial support needs. Stigma surrounding BD contributes significantly to carer silence and reluctance to seek help, magnifying isolation compared with carers of less-stigmatized conditions. Implications include the importance of tailored, condition-specific resources, integrating carers into treatment planning and decision-making, and adopting a family/system perspective in clinical recommendations. The narrative, story-sharing element appeared inherently supportive, suggesting the value of peer components in future interventions. Given evidence for web-based approaches and online psychoeducation, developing accessible, affordable, and BD-specific online supports (including CBT skills for carers) and peer forums could help address gaps, while also recognizing that many carers prefer primary care pathways for their own mental health needs.

This qualitative study contributes nuanced insights into the complexity of caring for someone with BD, emphasizing the pervasive unpredictability of symptoms and the resulting hypervigilance, anxiety, and exhaustion among carers. It identifies widespread stigma and carers’ disillusionment with current systems, as well as clear preferences for increased inclusion, practical information, psychosocial skills training, and peer support delivered through both online and in-person modalities. Future research should refine and evaluate tailored, condition-specific interventions (including online CBT/skills-based programs for carers), explore delivery models that facilitate carer inclusion in care, and investigate subgroup-specific needs (e.g., partners versus children) to optimize support effectiveness.

The study excluded individuals unable to read English, limiting cultural and linguistic generalizability. The sample is Australian-only and included no participants identifying as Aboriginal or Torres Strait Islander, further restricting applicability across cultures and contexts.