Skip to main content
SpringerLink
Log in

Burden of caregiving amongst family caregivers of patients with eating disorders

  • Original Paper
  • Published:
Social Psychiatry and Psychiatric Epidemiology Aims and scope Submit manuscript

Abstract

Background

Eating disorders (EDs) in a close relative can be particularly stressful for family members.

Aims

To assess the perceived burden of caregivers of patients with EDs and to identify demographic and clinical variables that could predict this burden.

Method

We conducted a cross-sectional study involving 145 ED patients and 246 related caregivers. ED patients completed the Health-Related Quality of Life in ED-short form, the Hospital Anxiety and Depression Scale, and the Short Form-12. Caregivers completed the Involvement Evaluation Questionnaire-EU version, the Short Form-12, the Hospital Anxiety and Depression Scale, and the Anorectic Behaviour Observation Scale. Descriptive statistics, ANOVA, Chi-square, and Fisher’s exact test were applied to examine the inter-variable relationships.

Results

A high burden of caregiving was associated with being divorced (β = 14.23, SE = 3.88; p = 0.001), having a low level of education (β = 4.70, SE = 1.96; p = 0.02), having high levels of anxiety (β = 5.45, SE = 2.13; p = 0.01) or depression (β = 5.74, SE = 2.80; p = 0.04), and caring for a relative with a low physical quality of life (β = 5.91, SE = 1.78; p = 0.002).

Conclusions

Evaluating family caregivers of patients with ED for risk factors for increased caregiver burden and offering them assistance could reduce their perceived burden of caregiving.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. Treasure J (2010) How do families cope when a relative has an eating disorder? In: Treasure J, Schmidt U, MacDonald P (eds) The clinician’s guide to collaborative caring in eating disorders. The new Maudsley method. Routledge, East Sussex, pp 145–159

  2. Platt S (1985) Measuring the burden of psychiatric illness on the family: an evaluation of some rating scales. Psychol Med 15:383–393

    Article  PubMed  CAS  Google Scholar 

  3. Lowyck B, De HM, Peeters E, Wampers M, Gilis P, Peuskens J (2004) A study of the family burden of 150 family members of schizophrenic patients. Eur Psychiatry 19:395–401

    Article  PubMed  CAS  Google Scholar 

  4. Hoenig J, Hamilton MW (1966) The schizophrenic patient in the community and his effect on the household. Int J Soc Psychiatry 12:165–176

    Article  PubMed  CAS  Google Scholar 

  5. Baronet AM (1999) Factors associated with caregiver burden in mental illness: a critical review of the research literature. Clin Psychol Rev 19:819–841

    Article  PubMed  CAS  Google Scholar 

  6. Hunt CK (2003) Concepts in caregiver research. J Nurs Scholarsh 35:27–32

    Article  PubMed  Google Scholar 

  7. Schene AH (1990) Objective and subjective dimensions of family burden toward an integrative framework for research. Soc Psychiatry Psychiatr Epidemiol 25:289–297

    Article  PubMed  CAS  Google Scholar 

  8. Szmukler G (1996) From family “burden” to caregiving. Psychiatr Bull 20:449–451

    Article  Google Scholar 

  9. Schene AH, Tessler RC, Gamache GM (1994) Instruments measuring family or caregiver burden in severe mental-illness. Soc Psychiatry Psychiatr Epidemiol 29:228–240

    Article  PubMed  CAS  Google Scholar 

  10. Nijboer C, Tempelaar R, Triemstra M, Van den Bos G, Sanderman R (2001) The role of social and psychologic resources in caregiving of cancer patients. Cancer 91:1029–1039

    Article  PubMed  CAS  Google Scholar 

  11. Kramer B (1997) Gain in the caregiving experience: where are we? What next? Gerontologist 37:218–232

    Article  PubMed  CAS  Google Scholar 

  12. Noh S, Turner RJ (1987) Living with psychiatric patients: implications for the mental health of family members. Soc Sci Med 25:263–272

    Article  PubMed  CAS  Google Scholar 

  13. Birchwood M, Cochrane R (1990) Families coping with schizophrenia: coping styles, their origins and correlates. Psychol Med 20:857–865

    Article  PubMed  CAS  Google Scholar 

  14. Magliano L, Veltro F, Guarneri M, Marasco C (1995) Clinical and socio-demographic correlates of coping strategies in relatives of schizophrenic patients. Eur Psychiatry 10:155–158

    Article  PubMed  CAS  Google Scholar 

  15. Solomon P, Draine J (1995) Subjective burden among family members of mentally ill adults: relation to stress, coping, and adaptation. Am J Orthopsychiatry 65:419–427

    Article  PubMed  CAS  Google Scholar 

  16. Veltro F, Magliano L, Lobrace S, Morosini PL, Maj M (1994) Burden on key relatives of patients with schizophrenia vs neurotic disorders: a pilot study. Soc Psychiatry Psychiatr Epidemiol 29:66–70

    PubMed  CAS  Google Scholar 

  17. Roick C, Heider D, Toumi M, Angermeyer MC (2006) The impact of caregivers’ characteristics, patients’ conditions and regional differences on family burden in schizophrenia: a longitudinal analysis. Acta Psychiatr Scand 114:363–374

    Article  PubMed  CAS  Google Scholar 

  18. Foldemo A, Gullberg M, Ek AC, Bogren L (2005) Quality of life and burden in parents of outpatients with schizophrenia. Soc Psychiatry Psychiatr Epidemiol 40:133–138

    Article  PubMed  Google Scholar 

  19. van Wijngaarden B, Schene AH, Koeter M, Vazquez-Barquero JL, Knudsen HC, Lasalvia A, McCrone P (2000) Caregiving in schizophrenia: development, internal consistency and reliability of the involvement evaluation questionnaire—European version. EPSILON study 4. European Psychiatric Services: inputs linked to outcome domains and needs. Br J Psychiatr Suppl 39:21–27

    Article  Google Scholar 

  20. Gutiérrez-Maldonado J, Caqueo-Urizar A, Kavanagh DJ (2005) Burden of care and general health in families of patients with schizophrenia. Soc Psychiatry Psychiatr Epidemiol 40:899–904

    Article  PubMed  Google Scholar 

  21. Bullock R (2004) The needs of the caregiver in the long-term treatment of Alzheimer disease. Alzheimer Dis Assoc Disord 18:S17–S23

    Article  PubMed  Google Scholar 

  22. Stengler-Wenzke K, Kroll M, Matschinger H, Angermeyer MC (2006) Quality of life of relatives of patients with obsessive–compulsive disorder. Compr Psychiatr 47:523–527

    Article  Google Scholar 

  23. van Wijngaarden B, Schene AH, Koeter MWJ (2004) Family caregiving in depression: impact on caregivers’ daily life, distress, and help seeking. J Affect Disord 81:211–222

    Article  PubMed  Google Scholar 

  24. Reinares M, Vieta E, Colom F, Martínez-Arán A, Torrent C, Comes M, Goikolea JM, Benabarre A, Daban C, Sánchez-Moreno J (2006) What really matters to bipolar patients’ caregivers: sources of family burden. J Affect Disord 94:157–163

    Article  PubMed  CAS  Google Scholar 

  25. Buhse M (2008) Assessment of caregiver burden in families of persons with multiple sclerosis. J Neurosci Nurs 40:25–31

    Article  PubMed  Google Scholar 

  26. Spliethoff-Kamminga NGA, Zwinderman AH, Springer MP, Roos RAC (2003) A disease-specific psychosocial questionnaire for Parkinson’s disease caregivers. J Neurol 250:1162–1168

    Article  PubMed  Google Scholar 

  27. Baider L (2003) La familia del enfermo adulto. In: Die Trill M (ed) Psico-oncología. Ades, Madrid

  28. Rigby H, Gubitz G, Phillips H (2009) A systematic review of caregiver burden following stroke. Int J Stroke 4:285–292

    Article  PubMed  CAS  Google Scholar 

  29. Etters L, Goodall D, Harrison BE (2008) Caregiver burden among dementia patient caregivers: a review of the literature. J Am Acad Nurse Pract 20:423–428

    Article  PubMed  Google Scholar 

  30. Santonastaso P, Saccon D, Favaro A (1997) Burden and psychiatric symptoms on key relatives of patients with eating disorders: a preliminary study. Eat Weight Disord 2:44–48

    PubMed  CAS  Google Scholar 

  31. Treasure J, Murphy T, Szmukler G, Todd G, Gavan K, Joyce J (2001) The experience of caregiving for severe mental illness: a comparison between anorexia nervosa and psychosis. Soc Psychiatry Psychiatr Epidemiol 36:343–347

    Article  PubMed  CAS  Google Scholar 

  32. Graap H, Bleich S, Herbst F, Scherzinger C, Trostmann Y, Wancata J, de Zwaan M (2008) The needs of carers: a comparison between eating disorders and schizophrenia. Soc Psychiatry Psychiatr Epidemiol 43:800–807

    Article  PubMed  Google Scholar 

  33. Graap H, Bleich S, Herbst F, Trostmann Y, Wancata J, de Zwaan M (2008) The needs of carers of patients with anorexia and bulimia nervosa. Eur Eat Disord Rev 16:21–29

    Article  PubMed  Google Scholar 

  34. Sepúlveda AR, Lopez C, Todd G, Whitaker W, Treasure J (2008) An examination of the impact of “the Maudsley eating disorder collaborative care skills workshops” on the well being of carers. A pilot study. Soc Psychiatry Psychiatr Epidemiol 43:584–591

    Article  PubMed  Google Scholar 

  35. Zabala MJ, Macdonald P, Treasure J (2009) Appraisal of caregiving burden, expressed emotion and psychological distress in families of people with eating disorders: a systematic review. Eur Eat Disord Rev 17:338–349

    Article  PubMed  Google Scholar 

  36. Coomber K, King RM (2011) Coping strategies and social support as predictors and mediators of eating disorder carer burden and psychological distress. Soc Psychiatry Psychiatr Epidemiol. doi:10.1007/s00127-011-0384-6

    PubMed  Google Scholar 

  37. Haigh R, Treasure J (2003) Investigating the needs of carers in the area of eating disorders: development of the Carers’ Needs Assessment Measure (CaNAM). Eur Eat Disord Rev 11:125–141

    Article  Google Scholar 

  38. Turró-Garriga O, Soler-Cors O, Garre-Olmo J, López-Pousa S, Vilalta-Franch J, Monserrat-Vila S (2008) Distribución factorial de la carga en cuidadores de pacientes con enfermedad de Alzheimer. Rev Neurol 46:582–588

    PubMed  Google Scholar 

  39. Baumgarten M, Baltista RN, Infante-Rivard C, Itanely JA, Becker R, Gautier S (1992) The psychological and physical health of family members caring for an elderly person with dementia. J Clin Epidemiol 45:61–70

    Article  PubMed  CAS  Google Scholar 

  40. Burns A, Rabins P (2000) Carer burden in dementia. Int J Geriatr Psychiatry 15:9–13

    Article  Google Scholar 

  41. Donaldson C, Tarrier N, Burns A (1998) The impact of the symptoms of dementia on caregivers. Br J Psychiatr 170:62–68

    Article  Google Scholar 

  42. O’Rourke N, Tuokko HA (2004) Caregiver burden and depressive symptomatology: the association between constructs over time. Clin Gerontol 27:41–52

    Article  Google Scholar 

  43. American Psychiatric Association (1994) Diagnostic and statistical manual of mental disorders, 4th edn. American Psychiatric Association, Washington DC

  44. Perlick DA, Hohenstein JM, Clarkin JF, Kaczynski R, Rosenheck RA (2005) Use of mental health and primary care services by caregivers of patients with bipolar disorder: a preliminary study. Bipolar Disord 7:126–135

    Article  PubMed  Google Scholar 

  45. van Wijngaarden B, Schene AH, Koeter M, Vazquez-Barquero JL, Knudsen HC, Lasalvia A, McCrone P; Epsilon Study Group (2000) Caregiving in schizophrenia: development, internal consistency and reliability of the involvement evaluation questionnaire—European version. EPSILON Study 4. European Psychiatric Services: inputs linked to outcome domains and needs. Br J Psychiatry Suppl 39:21–27

    Google Scholar 

  46. Gandek B, Aaronson NK, Ware JE, Apolone G, Bjorner JB, Brazier JE, Bullinger M, Kaasa S, Leplege A, Prieto L, Sullivan M (1998) Cross-validation of item selection and scoring for the SF-12 Health Survey in nine countries: results from the IQOLA project. International quality of life assessment. J Clin Epidemiol 51:1171–1178

    Article  PubMed  CAS  Google Scholar 

  47. Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand 67:361–370

    Article  PubMed  CAS  Google Scholar 

  48. Quintana JM, Padierna A, Esteban C, Arostegui I, Bilbao A, Ruiz I (2003) Evaluation of the psychometric characteristics of the Spanish version of the Hospital Anxiety and Depression Scale. Acta Psychiatr Scand 107:216–221

    Article  PubMed  CAS  Google Scholar 

  49. Herrmann C (1997) International experiences with the hospital Anxiety and Depression Scale: a review of validation data and clinical results. J Psychosom Res 42:17–41

    Article  PubMed  CAS  Google Scholar 

  50. Vandereycken W (1992) Validity and reliability of the Anorectic Behavior Observation Scale for parents. Acta Psychiatr Scand 85:163–166

    Article  PubMed  CAS  Google Scholar 

  51. Instituto Nacional de la Salud (1995) Protocolo de trastornos del comportamiento alimentario. Instituto Nacional de la Salud, Madrid

    Google Scholar 

  52. Las Hayas C, Quintana JM, Padierna JA, Bilbao A, Munoz P, Francis CE (2007) Health-related quality of life for eating disorders questionnaire version-2 was responsive 1-year after initial assessment. J Clin Epidemiol 60:825–833

    Article  PubMed  Google Scholar 

  53. Las Hayas C, Quintana JM, Padierna JA, Bilbao A, Munoz P (2010) Use of rasch methodology to develop a short version of the health related quality of life for eating disorders questionnaire: a prospective study. Health Qual Life Outcomes 8:29

    Article  PubMed  Google Scholar 

  54. Guy W (1976) Early clinical drug evaluation (ECDEU) assessment manual. National Institute Mental Health, Rockville

    Google Scholar 

  55. Van Wijngaarden B, Koeter M, Knapp M, Tansella M, Thornicroft G, Vázquez-Barquero JL, Schene A (2009) Caring for people with depression or with schizoprenia: are the consequences different? Psychiatry Res 169:62–69

    Article  PubMed  Google Scholar 

  56. Winn S, Perkins S, Walwyn R, Schmidt U, Eisler I, Treasure J, Berelowitz M, Dodge L, Frost S, Jenkins M, Johnson-Sabine E, Keville S, Murphy R, Robinson P, Yi I (2007) Predictors of mental health problems and negative caregiving experiences in carers of adolescents with bulimia nervosa. Int J Eat Disord 40:171–178

    Article  PubMed  Google Scholar 

  57. Kyriacou O, Treasure J, Schmidt U (2008) Understanding how parents cope with living with someone with anorexia nervosa: modelling the factors that are associated with carer distress. Int J Eat Disord 41:233–242

    Article  PubMed  Google Scholar 

  58. Sepúlveda AR, Whitney J, Hankins M, Treasure J (2008) Development and validation of an Eating Disorders Symptom Impact Scale (EDSIS) for carers of people with eating disorders. Health Qual Life Outcomes 6:28

    Article  PubMed  Google Scholar 

  59. Whitney J, Haigh R, Weinman J, Treasure J (2007) Caring for people with eating disorders: factors associated with psychological distress and negative caregiving appraisals in carers of people with eating disorders. Br J Clin Psychol 46:413–428

    Article  PubMed  Google Scholar 

  60. Li J, Lambert CE, Lambert VA (2007) Predictors of family caregivers’ burden and quality of life when providing care for a family member with schizophrenia in the People’s Republic of China. Nurs Health Sci 9:192–198

    Article  PubMed  Google Scholar 

  61. Chakrabarti S, Gill S (2002) Coping and its correlates among caregivers of patients with bipolar disorder: a preliminary study. Bipolar Disord 4:50–60

    Article  PubMed  Google Scholar 

  62. Hooker K, Bowman S, Coehlo D, Lim S, Kaye J, Guariglia R, Li F (2002) Behavioral change in persons with dementia. J Gerontol Ser B Psychol Sci Soc Sci 57:453–460

    Article  Google Scholar 

  63. Miyamoto Y, Ito H, Otsuka T, Kurita H (2002) Caregiver burden in mobile and non-mobile demented patients: a comparative study. Int J Geriatr Psychiatry 17:765–773

    Article  PubMed  Google Scholar 

  64. Ohaeri JU (2001) Caregiver burden and psychotic patients’ perception of social support in a Nigerian setting. Soc Psychiatry Psychiatr Epidemiol 36:86–93

    Article  PubMed  CAS  Google Scholar 

  65. Wittmund B, Wilms HU, Mory C, Angermeyer MC (2002) Depressive disorders in spouses of mentally ill patients. Soc Psychiatry Psychiatr Epidemiol 37:177–182

    Article  PubMed  Google Scholar 

  66. Wolthaus JE, Dingemans PM, Schene AH, Linszen DH, Wiersma D, Van Den Bosch RJ, Cahn W, Hijman R (2002) Caregiver burden in recent-onset schizophrenia and spectrum disorders: the influence of symptoms and personality traits. J Nerv Ment Dis 190:241–247

    Article  PubMed  Google Scholar 

  67. Brodaty H, Donkin M (2009) Family caregivers of people with dementia. Dialogues Clin Neurosci 11:217–228

    PubMed  Google Scholar 

  68. Steele A, Maruyama N, Galynker I (2010) Psychiatric symptoms in caregivers of patients with bipolar disorder: a review. J Affect Disord 121:10–21

    Article  PubMed  Google Scholar 

  69. Epstein-Lubow G, Davis JD, Miller IW, Tremont G (2008) Persisting burden predicts depressive symptoms in dementia caregivers. J Geriatr Psychiatry Neurol 21:198–203

    Article  PubMed  Google Scholar 

  70. Martinez-Martin P, Arroyo S, Rojo-Abuin JM, Rodriguez-Blazquez C, Frades B, de Pedro CJ (2008) Burden, perceived health status, and mood among caregivers of Parkinson’s disease patients. Mov Disord 23:1673–1680

    Article  PubMed  Google Scholar 

  71. Okamoto K, Harasawa Y (2009) Predictor of increase in caregiver burden for disabled elderly at home. Arch Gerontol Geriatr 49:129–131

    Article  PubMed  Google Scholar 

  72. Chappell NL, Reid RC (2002) Burden and well-being among caregivers examining the difference. Gerontologist 42:772–780

    Article  PubMed  Google Scholar 

  73. Martín J, Padierna A, Aguirre U, Quintana JM, Las Hayas C, Muñoz P (2011) Quality of life among caregivers of patients with eating disorders. Qual Life Res. doi:10.1007/s11136-011-9873-z

    Google Scholar 

  74. Steffen AM, McKibbin C, Zeiss AM, Gallagher-Thompson D, Bandura A (2002) The revised scale for caregiving self-efficacy: reliability and validity studies. J Gerontol 57:74–86

    Google Scholar 

  75. Morosini P, Roncone R, Veltro F, Palomba U, Casachia M (1991) Routine assessment tools in psychiatry: a case of questionnaire of attitudes and burden. Ital J Psychiatry Behav Sci 1:95–101

    Google Scholar 

Download references

Acknowledgments

This study was partly funded by the Carlos III Health Institute (project PI06/0921 “The caring experience and its impact on the quality of life of ED patient caregivers. A follow-up study”, awarded to principal investigator Angel Padierna). We also thank the Research Committee of the Galdakao-Usansolo Hospital for the help in editing this article. The authors also acknowledge editorial assistance provided by Patrick Skerrett. Also, we are very grateful to the individuals with an ED and their caregivers who collaborated with us in our research.

Conflict of interest

None.

Author information

Authors and Affiliations

  1. Department of Psychiatry, Galdakao-Usansolo Hospital, Barrio Labeaga s/n, Galdakao, 48960, Bizkaia, Spain

    Angel Padierna

  2. CIBER de Epidemiología y Salud Pública (CIBERESP), Bizkaia, Spain

    Angel Padierna, Urko Aguirre, Nerea González & José Mª Quintana

  3. Research Unit, Galdakao-Usansolo Hospital, Barrio Labeaga s/n, Galdakao, 48960, Bizkaia, Spain

    Josune Martín, Urko Aguirre, Nerea González & José Mª Quintana

  4. Department of Psychiatry, Ortuella Mental Health Centre, Bizkaia, Spain

    Pedro Muñoz

Authors
  1. Angel Padierna
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Josune Martín
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Urko Aguirre
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Nerea González
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Pedro Muñoz
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. José Mª Quintana
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Josune Martín.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Padierna, A., Martín, J., Aguirre, U. et al. Burden of caregiving amongst family caregivers of patients with eating disorders. Soc Psychiatry Psychiatr Epidemiol 48, 151–161 (2013). https://doi.org/10.1007/s00127-012-0525-6

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00127-012-0525-6

Keywords

Search

Navigation