Document Type : Original Article


1 Clinical Education Research Center, Shiraz University of Medical Sciences, Shiraz, Iran

2 Department of Health Education and Promotion, School of Health, Shiraz University of Medical Sciences, Shiraz, Iran


BACKGROUND: Taking care of patients with bipolar disorder (BD) makes critical challenges for
their informal caregivers (ICGs) and forces them to tolerate considerable burden. This qualitative
study explored the dimensions of ICGs’ care burden (CB) based on their own experiences and the
patients’ therapists.
MATERIALS AND METHODS: This is a qualitative study which was conducted based on conventional
content analysis through semistructured and in‑depth interviews. Purposive sampling was used to
select the participants including 13 ICGs and 14 therapists (2 psychiatrists, 10 psychiatric nurses,
and 2 clinical psychologists). Interviews were audiotaped, transcribed verbatim, and analyzed using
Graneheim’s 2004 principles.
RESULTS: Qualitative analyses yielded three major themes: “challenges associated with the nature
of BD,” “challenges related to the ICGs,” and “challenges related to interventions.” The categories of
the first theme entailed “individual‑oriented characteristics of BD” and “social‑oriented characteristics
of BD.” The categories of the second theme consisted of “social stigma,” “psychiatric problems and
helplessness of ICGs,” “financial costs related to providing cares,” and “insufficient self‑efficacy of
ICGs in cares provision.” The categories of the last theme included “educational interventions” and
“organizational interventions.”
CONCLUSIONS: This study showed that the burden of ICGs have individual, social, and
organizational aspects. Every one of them impacts the severity of their burden remarkably. The
depth of the therapists’ experiences has a significant role in designing the interventions to reduce
this burden. The present investigation emphasized the constitution of a comprehensive framework
related to all factors affecting burden in a developing country.


  1. Pakpour AH, Modabbernia A, Lin CY, Saffari M, Ahmadzad
    Asl M, Webb TL. Promoting medication adherence among
    patients with bipolar disorder: A multicenter randomized
    controlled trial of a multifaceted intervention. Psychol Med
    2. Bond K, Anderson IM. Psychoeducation for relapse prevention in
    bipolar disorder: A systematic review of efficacy in randomized
    controlled trials. Bipolar Disord 2015;17:349‑62.
    3. VallarinoM, Rapisarda F, ScottJ, VecchiT, BarbatoA, D’Avanzo B.
    Experiences of mental healthcare reported by individuals
    diagnosed with bipolar disorder: An Italian qualitative study.
    Community Ment Health J 2019;55:129‑36.
    4. Poole R, Smith D, Simpson S. Patients’ perspectives of
    the feasibility, acceptability and impact of a group‑based
    psychoeducation programme for bipolar disorder: A qualitative
    analysis. BMC Psychiatry 2015;15:184.
    5. Maassen EF, Regeer BJ, Regeer EJ, Bunders JF, Kupka RW. The
    challenges of living with bipolar disorder: A qualitative study
    of the implications for health care and research. Int J Bipolar
    Disord 2018;6:23.
    6. Ganguly KK, Chadda RK, Singh BT. Caregiver burden and coping
    in schizophrenia and bipolar disorder: A qualitative study. Am J
    Psychiatr 2010;13(2):126‑42.
    7. Pirkis J, Burgess P, Hardy J, Harris M, Slade T, Johnston A. Who
    cares? A profile of people who care for relatives with a mental
    disorder. Aust N Z J Psychiatry 2010;44:929‑37.
    8. Amir E. New developments for family caregivers in the context of
    mental health in Canada. Can J Commun Ment Health 2015;34:143‑9.
    9. Berk L, Jorm AF, Kelly CM, Dodd S, Berk M. Development
    of guidelines for caregivers of people with bipolar disorder:
    A Delphi expert consensus study. Bipolar Disord 2011;13:556‑70.
    10. Papastavrou E, Charalambous A, Tsangari H, Karayiannis G. The
    cost of caring: The relative with schizophrenia. Scand J Caring
    Sci 2010;24:817‑23.
    11. Möller‑Leimkühler AM, Wiesheu A. Caregiver burden in chronic
    mental illness: The role of patient and caregiver characteristics.
    Eur Arch Psychiatry Clin Neurosci 2012;262:157‑66.
    12. von Kardorff E, Soltaninejad A, Kamali M, Eslami Shahrbabaki M.
    Family caregiver burden in mental illnesses: The case of affective
    disorders and schizophrenia – A qualitative exploratory study.
    Nord J Psychiatry 2016;70:248‑54.
    13. Messer T, Lammers G, Müller‑Siecheneder F, Schmidt RF, Latifi S.
    Substance abuse in patients with bipolar disorder: A systematic
    review and meta‑analysis. Psychiatry Res 2017;253:338‑50.
    14. Aghakhani N, Lopez V, Cleary M. Experiences and perceived
    social support among iranian men on methadone maintenance
    therapy: A qualitative study. Issues Ment Health Nurs
    15. Wainwright LD, Glentworth D, Haddock G, Bentley R, Lobban F.
    What do relatives experience when supporting someone in early
    psychosis? Psychol Psychother 2015;88:105‑19.
    16. Graneheim UH, Lundman B. Qualitative content analysis in
    nursing research: Concepts, procedures and measures to achieve
    trustworthiness. Nurse Educ Today 2004;24:105‑12.
    17. Lee Mortensen G, Vinberg M, Lee Mortensen S ,
    Balslev Jørgensen M, Eberhard J. Bipolar patients’ quality of life
    in mixed states: A preliminary qualitative study. Psychopathology
    18. Hajda M, Prasko J, Latalova K, Hruby R, Ociskova M,
    Holubova M, et al. Unmet needs of bipolar disorder patients.
    Neuropsychiatr Dis Treat 2016;12:1561‑70.
  2. 19. Arun R, Inbakamal S, Tharyan A, Premkumar PS. Spousal
    caregiver burden and its relation with disability in schizophrenia.
    Indian J Psychol Med 2018;40:22‑8.
    20. Sajatovic M, Levin J, Fuentes‑Casiano E, Cassidy KA, Tatsuoka C,
    Jenkins JH. Illness experience and reasons for nonadherence
    among individuals with bipolar disorder who are poorly adherent
    with medication. Compr Psychiatry 2011;52:280‑7.
    21. Arias F, Szerman N, Vega P, Mesías B, Basurte I, Rentero D.
    Bipolar disorder and substance use disorders. Madrid study
    on the prevalence of dual disorders/pathology. Adicciones
    22. Blixen C, Perzynski AT, Bukach A, Howland M, Sajatovic M.
    Patients’ perceptions of barriers to self‑managing bipolar disorder:
    A qualitative study. Int J Soc Psychiatry 2016;62:635‑44.
    23. Granek L, Danan D, Bersudsky Y, Osher Y. Living with bipolar
    disorder: The impact on patients, spouses, and their marital
    relationship. Bipolar Disord 2016;18:192‑9.
    24. Lal S, Malla A, Marandola G, Thériault J, Tibbo P, Manchanda R,
    et al. “Worried about relapse”: Family members’ experiences and
    perspectives of relapse in first‑episode psychosis. Early Interv
    Psychiatry 2017;11:1‑6.
    25. BauerR, Spiessl H, Helmbrecht MJ. Burden, reward, and coping of
    adult offspring of patients with depression and bipolar disorder.
    Int J Bipolar Disord 2015;3:2.
    26. Omranifard V, Yari A, Kheirabadi GR, Rafizadeh M, Maracy MR,
    Sadri S. Effect of needsassessmentbased psycho education for
    families of patients with schizophrenia on quality of life of
    patients and their families: A controlled study. J Educ Health
    Promot 2014;3:125.
    27. Kumar P, Sharma N, Ghai S, Grover S. Perception about marriage
    among caregivers of patients with schizophrenia and bipolar
    disorder. Indian J Psychol Med 2019;41:440‑7.
    28. TaghvaA, FarsiZ, JavanmardY, AtashiA, HajebiA, NoorbalaAA.
    Strategies to reduce the stigma toward people with mental
    disorders in Iran: Stakeholders’ perspectives. BMC Psychiatry
    29. Bhugra D, Sartorius N, Fiorillo A, Evans‑Lacko S, Ventriglio A,
    Hermans MH, et al. EPA guidance on how to improve the image of
    psychiatry and of the psychiatrist. Eur Psychiatry 2015;30:423‑30.
    30. Saberi Zafarghandi M. Some of the challenges of mental health
    and addiction in Iran. Iran J Psychiatry Clin Psycho 2011;17:157‑61.
    31. Davis M, Balasubramanian BA, Waller E, Miller BF, Green LA,
    Cohen DJ. Integrating behavioral and physical health care in the
    real world: Early lessons from advancing care together. J Am
    Board Fam Med 2013;26:588‑602.
    32. Sajadi S, Raheb G, Maarefvand M, Alhosseini KA. Family
    problems associated with conduct disorder perceived by patients,
    families and professionals. J Educ Health Promot 2020;9:184.
    33. Bauer R, Gottfriedsen GU, Binder H, Dobmeier M, Cording C,
    Hajak G, et al. Burden of caregivers of patients with bipolar
    affective disorders. Am J Orthopsychiatry 2011;81:139‑48.
    34. Lobban F, Taylor K, Murray C, Jones S. Bipolar disorder is a
    two‑edged sword: A qualitative study to understand the positive
    edge. J Affect Disord 2012;141:204‑12.
    35. Chatzidamianos G, Lobban F, Jones S. A qualitative analysis
    of relatives’, health professionals’ and service users’ views on
    the involvement in care of relatives in Bipolar Disorder. BMC
    Psychiatry 2015;15:228.
    36. Maskill V, Crowe M, Luty S, Joyce P. Two sides of the same coin:
    Caring for a person with bipolar disorder. J Psychiatr Ment Health
    Nurs 2010;17:535‑42.
    37. Tamizi Z, Fallahi‑Khoshknab M, Dalvandi A ,
    Mohammadi‑Shahboulaghi F, Mohammadi E, Bakhshi E.
    Caregiving burden in family caregivers of patients with
    schizophrenia: Aqualitative study. JEduc Health Promot 2020;9:12.
    38. Tranvåg O, Kristoffersen K. Experience of being the spouse/
    cohabitant of a person with bipolar affective disorder:
    A cumulative process over time. Scand J Caring Sci 2008;22:5‑18.
    39. Rowe J. Great expectations: A systematic review of the literature
    on the role of family carers in severe mental illness, and their
    relationships and engagement with professionals. J Psychiatr
    Ment Health Nurs 2012;19:70‑82.
    40. Zhou Y, Rosenheck R, Mohamed S, Ou Y, Ning Y, He H.
    Comparison of burden among family members of patients
    diagnosed with schizophrenia and bipolar disorder in a large
    acute psychiatric hospital in China. BMC Psychiatry 2016;16:283.