ENTRAR            

Artículos

Investigación en Enfermería: Imagen y desarrollo [Inv Enf] 2016 jul-dic; 18(2): 43-60  Recibido: 20/3/2015 Aceptado: 4/12/2015

La carga del cuidado en la enfermedad crónica en la díada cuidador familiar-receptor del cuidado   Olivia Lorena Chaparro Díaz,1 Gloria Mabel Carrillo González,2 Beatriz Sánchez Herrera3 (1) Master in Science of Nursing. Profesora titular de la Facultad de Enfermería, Universidad Nacional de Colombia. (2) Doctora en Enfermería. Profesora asociada de la Facultad de Enfermería, Universidad Nacional de Colombia. (3) Magíster en Enfermería. Profesora asociada de la Facultad de Enfermería, Universidad Nacional de Colombia

Resumen

Objetivo. Analizar  la forma en que se aborda y  mide  la carga del cuidado en la enfermedad crónica no transmisible (ECNT) en  las diadas compuestas por el cuidador familiar y el receptor del cuidado (D CF-R). Método. Revisión sistemática de literatura  en las bases de datos CINAHL, Ovid, Scielo, Medline y PsycInfo, bajo los descriptores diada, cuidador familiar, carga, costo de la enfermedad y enfermedad crónica cruzándolas con los descriptores valoración, medición y evaluación, con su traducción al inglés,  los estudios se clasificaron y analizaron según la conceptualización de la diadas cuidador familiar-receptor del cuidado  su interacción,  sus componentes, e indicadores de medición. Resultados. El análisis permitió establecer seis categorías de instrumentos de medición según la forma en que la díada cuidador familiar-receptor del cuidado, su interacción y sus componentes son abordados: (1) las que consideran al grupo familiar como contexto de la díada (2) las que ven a las personas con enfermedad crónica como integrantes de la díada (3) las que ven a los cuidadores familiares como integrantes e informantes de la díada,  (4) las que analizan la perspectiva de los pacientes y la de su grupo familiar como una mirada interna y externa de la díada; (5) las que toman a la díada propiamente dicha y (6) las que analizan la perspectiva del cuidador externo a la díada. Conclusión. Es ampliamente aceptado que el fenómeno de la carga de la ECNT afecta a la  díada cuidador familiar-receptor del cuidado, sin embargo, el enfoque con el que se reconoce a la  diada  modifica de manera importante su valoración.  Comprender esta diferencia es necesario para la elaboración de propuestas de disminución de la carga del cuidado de la enfermedad crónica que a su vez mejoren el bienestar de las díadas.
Palabras clave: Costo de la enfermedad/ Cuidadores/ Enfermedad crónica/ Personas con discapacidad/ Cuestionarios.
 

Abstract
The responsibility of caregiving in chronic disease in the dyad family carer - care recipient

Objective: To analyze how the responsibility of caregiving for chronic non-communicable disease (NCD) is addressed and measured in the dyad comprised by the family caregiver and care receiver. Method: Integrative review of literature on the data base CIN AHL, Ovid, SciELO , Medline and PsycIN FO. Studies were classified and analyzed according to the conceptualization of the dyad family carer - care recipient, their interaction, their components and measurement indicators. Results: The analysis establishes six categories of instruments: (1) the ones that consider the family as the context of the dyad, (2) the ones that see people with chronic disease as members of the dyad, (3) those who see family caregivers as members and informers of the dyad, (4) those who analyze the perspective of patients and their family as an internal and external view of the dyad, (5) the ones that take the dyad itself, and (6) those who analyze the perspective of the external- to- the dyad caregiver. Conclusion: It is widely accepted that the phenomenon of the responsibility of NCDs affect the dyad family caregivercare receiver; But the approach with which it is recognized significantly modifies its valuation. Understanding this difference is necessary to develop proposals for reducing the burden of chronic disease care which in turn improve the welfare of dyads.
Key-words: Care costs/ Caregivers/ Chronic disease/ Patients/ Family relationships/ Questionnaires.
 

Resumo
A carga do cuidado em doenças crônicas na díade cuidador familiar-receptor do cuidado

Objetivo: Analisar como é abordada e medida a carga do cuidado nas doenças crônicas não transmissíveis (DCNT ) na díade composta pelo cuidador familiar e o receptor do cuidado. Método: Revista integrativa de literatura nas bases de dados CIN AHL, Ovid, SciELO , Medline e PsycInfo. Os estudos foram classificados e analisados segundo a conceituação da díade cuidado familiar-receptor do cuidado, sua interação, componentes e indicadores de aferição. Resultados: A análise estabelece seis categorias de instrumentos: 1) das pessoas que acham o grupo familiar como contexto da díade, 2) das que veem o pessoal com doença crônica como integrantes da díade, 3) das que veem os cuidadores familiares como integrantes e informantes da díade, 4) as que analisam a perspectiva dos pacientes e do seu grupo familiar como um olhar interno e externo da díade, 5) as que pegam a díade propriamente tal e 6) as que analisam a perspectiva do cuidador externo à díade. Conclusão: É amplamente aceito que o fenómeno da carga da DCNT afeta à díade cuidador familiar-receptor do cuidado; mas o enfoque com que se reconhece modifica grandemente a sua valoração. Compreender esta diferença é preciso para elaborar propostas de diminuição da carga do cuidado da doença crônica que, por sua vez, melhorem o bem-estar das díades.
Palavras chave: Custo do cuidado/ Cuidadores/ Doença crônica/ Pacientes/ Relações familiares/ Inquéritos.
 

Referencias

1. Sadavoy J, Wesson V. Refining dementia intervention: the caregiverpatient dyad as the unit of care. CMAJ. 2012;2:5-10.

2. Checton MG, Magsamen-Conrad K, Venetis MK, Greene K. A dyadic approach applying a developmental-conceptual model to couples coping with chronic illness. Health Educ Behav. 2015;42(2):257-67.

3. Chaparro Díaz L. Trascender en un �vínculo especial� de cuidado: el paso de lo evidente a lo intangible. Bogotá: Universidad Nacional de Colombia; 2009.

4. Kotronoulas G, Wengström Y, Kearney N. Sleep and sleep-wake disturbances in care recipient-caregiver dyads in the context of a chronic illness: a critical review of the literature. J Pain Symptom Manag. 2013;45(3):579-94.

5. Chaparro Díaz L. O vínculo especial de cuidado: construção de uma teoria fundamentada. Av Enferm. 2010;28(2):123-33.

6. Chaparro L. Cómo se constituye el �vínculo especial� de cuidado entre la persona con enfermedad crónica y el cuidador familiar. Aquichan. 2011;11(1):7-22.

7. Dehn L, Korn-Merker E, Pfäfflin M, Ravens-Sieberer U, May T. The Impact on Family Scale: Psychometric analysis of long and short forms in parents of children with epilepsy. Epilepsy Behav. 2014;32:21-6.

8. Werner H, Latal B, Valsangiacomo Buechel E, Beck I, Landolt MA. The impact of an infant's severe congenital heart disease on the family: a prospective cohort study. Congenit Heart Dis. 2014;9(3):203-10.

9. Mansfield AK, Keitner GI , Dealy J. The family assessment device: An update. Family Process. 2014.

10. Staccini L, Tomba E, Grandi S, Keitner GI. The evaluation of family functioning by the family assessment device: A systematic review of studies in adult clinical populations. Family Process. 2014.

11. Poulshock SW, Deimling GT . Families caring for elders in residence: Issues in the measurement of burden. J Gerontol. 1984;39(2):230-9.

12. Greeff AP, Van der Walt K-J. Resilience in families with an autistic child. Educ Train Autism Dev Disabil. 2010:347-55.

13. Nabors LA, Kichler JC, Brassell A, Thakkar S, Bartz J, Pangallo J, et al. Factors related to caregiver state anxiety and coping with a child�s chronic illness. Fam Syst Health. 2013;31(2):171.

14. Hua J, Wu Z-C, Gu G, Meng W. [Assessment on the validity and reliability of Family Environment Scale on Motor Development for Urban Pre-school Children]. Zhonghua liu xing bing xue za zhi=Zhonghua liuxingbingxue zazhi. 2012;33(5):464-9.

15. Bass DM, Bowman K. The transition from caregiving to bereavement: The relationship of care-related strain and adjustment to death. Gerontologist. 1990;30(1):35-42.

16. Sanjo M, Morita T, Miyashita M, Shiozaki M, Sato K, Hirai K, et al. Caregiving Consequences Inventory: a measure for evaluating caregiving consequences from the bereaved family member's perspective. PsychoOncology. 2009;18(6):657-66.

17. Simmons LA. Self-perceived burden in cancer patients: validation of the Self-perceived Burden Scale. Cancer Nurs. 2007;30(5):405-11.

18. Kowal J, Wilson KG, McWilliams LA, Péloquin K, Duong D. Selfperceived burden in chronic pain: relevance, prevalence, and predictors. Pain. 2012;153(8):1735-41.

19. Cousineau N, McDowell I, Hotz S, Hébert P. Measuring chronic patients� feelings of being a burden to their caregivers: development and preliminary validation of a scale. Med Care. 2003;41(1):110-8.

20. Bachner YG, O�Rourke N, Ayalon L, Bédard M. Comparison of caregiver responses to English and Hebrew language versions of an abridged Zarit Burden Interview. Aging Ment Health. 2011;15(3):370-5.

21. Brink P, Stones M, Smith TF. Confirmatory factor analysis of the burden interview of the caregivers of terminally ill home care clients. J Palliat Med. 2012;15(9):967-70.

22. Chattat R, Cortesi V, Izzicupo F, Del Re ML, Sgarbi C, Fabbo A, et al. The Italian version of the Zarit Burden Interview: a validation study. Int Psychogeriatr. 2011;23(05):797-805.

23. Merino-Soto C, Angulo-Ramos M. Validación en Chile de la escala de sobrecarga del cuidador de Zarit en sus versiones original y abreviada: corrección. Rev Méd Chile. 2013;141(8):1083-4.

24. Folkman S, Lazarus RS . An analysis of coping in a middle-aged community sample. J Health Soc Beh. 1980:219-39.

25. Vitaliano PP, Russo J, Carr JE, Maiuro RD , Becker J. The ways of coping checklist: Revision and psychometric properties. Multivariate Behav Res. 1985;20(1):3-26.

26. Menezes AR, Lavie CJ, DeSchutter A, Milani RV. Gender, race and cardiac rehabilitation in the United States: Is there a difference in care? Am J Med Sci. 2014;348(2):146-52.

27. Boots L, Vugt M, Knippenberg R, Kempen G, Verhey F. A systematic review of Internet based supportive interventions for caregivers of patients with dementia. Int J Geriatr Psychiatr. 2014;29(4):331-44.

28. Nogales-González C, Losada A, Romero-Moreno R. Confirmatory factor analysis of the Spanish version of the revised memory and behavior problems checklist. Int Psychogeriatr. 2014:1-10.

29. Wang Q, Jiang F, Chen S, Tang S. Memory and behavior-related problems of patients with neurocognitive disorders and the attitudes of their caregivers. Family Medicine and Community Health. 2013;1(4):23-30.

30. Teri L, Truax P, Logsdon R, Uomoto J, Zarit S, Vitaliano PP. Assessment of behavioral problems in dementia: the revised memory and behavior problems checklist. Psychol Aging. 1992;7(4):622.

31. Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress. J Health Soc Behav. 1983:385-96.

32. Lee E-H. Review of the psychometric evidence of the perceived stress scale. Asian Nurs Res. 2012;6(4):121-7.

33. Kruithof WJ, Post MW, Visser-Meily JM. Measuring negative and positive caregiving experiences: A psychometric analysis of the Caregiver Strain Index Expanded. Clin Rehabil. 2015: feb 4.

34. Montgomery RJ, Gonyea JG, Hooyman NR . Caregiving and the experience of subjective and objective burden. Fam Relat. 1985:19-26.

35. Kosberg JI, Cairl RE. The cost of care index: A case management tool for screening informal care providers. Gerontologist. 1986;26(3):273-8.

36. Derogatis L. The Derogatis Stress Profile (DS P): quantification of psychological stress. Adv Psychosom Med. 1986;17:30-54.

37. Hansell P, Hughes C, Caliandro G, Russo P, Budin W, Hartman B, et al. Stress and social support in older caregivers of children with HIV/ AIDS : An intervention model. En: Invisible caregivers: Older adults raising children in the wake of HIV/AIDS . New York: Columbia University Press; 2002. p. 113-30.

38. Wells Y, Jorm A. Evaluation of a special nursing home unit for dementia sufferers: a randomised controlled comparison with community care. Aust N Z J Psychiatry. 1987;21(4):524-31.

39. Bindoff HP, Clifford CA, Young JL. Caregivers of family members with dementia and disability: A comparative study of wellbeing. J Fam Stud. 1997;3(2):183-95.

40. Novak M, Guest C. Application of a multidimensional caregiver burden inventory. Gerontologist. 1989;29(6):798-803.

41. Caserta MS, Lund DA, Wright SD . Exploring the Caregiver Burden Inventory (CBI): further evidence for a multidimensional view of burden. Int J Aging Hum Dev. 1996;43(1):21-34.

42. Chou K-R, Jiann-Chyun L, Chu H. The reliability and validity of the Chinese version of the caregiver burden inventory. Nurs Res. 2002;51(5):324-31.

43. Lawton MP, Kleban MH, Moss M, Rovine M, Glicksman A. Measuring caregiving appraisal. J Gerontol. 1989;44(3):P61-P71.

44. Hughes CB, Caliandro G. Effects of social support, stress, and level of illness on caregiving of children with AIDS . J Pediatr Nurs. 1996;11(6):347-58.

45. Sevick MA, Sereika S, Hoffman LA, Matthews JT, Chen GJ. A confirmatory factor analysis of the caregiving appraisal scale for caregivers of home-based ventilator-assisted individuals. Heart & Lung. 1997;26(6):430-8.

46. Struchen MA, Atchison TB, Roebuck TM, Caroselli JS, Sander AM. A multidimensional measure of caregiving appraisal: validation of the Caregiver Appraisal Scale in traumatic brain injury. J Head Trauma Rehabil. 2002;17(2):132-54.

47. Oberst MT, Thomas SE, Gass KA, Ward SE. Caregiving demands and appraisal of stress among family caregivers. Cancer Nurs. 1989;12(4):209-15.

48. Carey PJ, Oberst MT, McCubbin MA, Hughes SH, editors. Appraisal and caregiving burden in family members caring for patients receiving chemotherapy. Oncol Nurs Forum; 1990 Nov-Dec;18(8):1341-8.

49. Kinney JM, Stephens MAP. Caregiving Hassles Scale: Assessing the daily hassles of caring for a family member with dementia. Gerontologist. 1989;29(3):328-32.

50. Motenko AK. The frustrations, gratifications, and well-being of dementia caregivers. Gerontologist. 1989;29(2):166-72.

51. Pearlin LI , Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process: An overview of concepts and their measures. Gerontologist. 1990;30(5):583-94.

52. Kyriacou O, Treasure J, Schmidt U. Understanding how parents cope with living with someone with anorexia nervosa: Modelling the factors that are associated with carer distress. Int J Eat Disord. 2008;41(3):233-42.

53. Stommel M, Given CW, Given B. Depression as an overriding variable explaining caregiver burdens. J Aging Health. 1990;2(1):81-102.

54. Gupta R. The revised caregiver burden scale: A preliminary evaluation. Res Social Work Prac. 1999;9(4):508-20.

55. Goodman CC. Perceived social support for caregiving: Measuring the benefit of self-help/support group participation. J Gerontol Social Work. 1991.

56. Strawbridge WJ, Wallhagen MI. Impact of family conflict on adult child caregivers. Gerontologist. 1991;31(6):770-7.

57. Vitaliano PP, Russo J, Young HM, Becker J, Maiuro RD . The screen for caregiver burden. Gerontologist. 1991;31(1):76-83.

58. Archbold P, Stewart B, Greenlick M, Harvath T. The clinical assessment of mutuality and preparedness in family caregivers to frail older people. En: Key aspects of elder care: Managing falls, incontinence, and cognitive impairment. New York: Springer; 1992. p. 328-39.

59. Orbell S, Hopkins N, Gillies B. Measuring the impact of informal caring. J Community Appl Soc. 1993;3(2):149-63.

60. Given CW, Given B, Stommel M, Collins C, King S, Franklin S. The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health. 1992;15(4):271-83.

61. Gerritsen J, Van der Ende P. The development of a care-giving burden scale. Age Ageing. 1994;23(6):483-91.

62. Denney JE. Development and validation of the caregiving self-efficacy scale. New York: University of Missouri-Columbia; 1992.

63. Stull DE, Kosloski K, Kercher K. Caregiver burden and generic wellbeing: opposite sides of the same coin? Gerontologist. 1994;34(1):88-94.

64. Sugihara Y, Sugisawa H, Nakatani Y, Hougham GW. Longitudinal changes in the well-being of Japanese caregivers: Variations across kin relationships. J Gerontol B Psychol Sci Soc Sci. 2004;59(4):P177-P84.

65. England M, Roberts BL. Theoretical and psychometric analysis of caregiver strain. Res Nurs Health. 1996;19(6):499-510.

66. Vernooij-Dassen MJ, Persoon JM, Felling AJ. Predictors of sense of competence in caregivers of demented persons. Soc Sci Med. 1996;43(1):41-9.

67. Vernooij-Dassen M, Felling A, Brummelkamp E, Dauzenberg M, Van Den Bos G, Grol R. Assessment of caregiver's competence in dealing with the burden of caregiving for a dementia patient: a Short Sense of Competence Questionnaire (SSCQ) suitable for clinical practice. J Am Geriatr Soc. 1999;47(2):256-7.

68. Jansen AP, van Hout HP, van Marwijk HW, Nijpels G, Gundy C, Vernooij- Dassen MJ, et al. Sense of competence questionnaire among informal caregivers of older adults with dementia symptoms: a psychometric evaluation. Clin Pract Epidemiol Ment Health. 2007;3(1):11.

69. Stull D. The Multidimensional Caregiver Strain Index (MCSI ). Its measurement and structure. J Clin Geropsychol. 1996;2(3):175-96.

70. Factor S, Weiner W, Factor S, Weiner W. Parkinson's disease: diagnosis & clinical management. New York: Demos Medical Publishing; 2007.

71. Elmståhl S, Malmberg B, Annerstedt L. Caregiver's burden of patients 3 years after stroke assessed by a novel caregiver burden scale. Arch Phys Med Rehabil. 1996;77(2):177-82.

72. Belasco A, Barbosa D, Bettencourt AR, Diccini S, Sesso R. Quality of life of family caregivers of elderly patients on hemodialysis and peritoneal dialysis. American Journal of Kidney Diseases. 2006;48(6):955-63.

73. Davis KL, Marin DB, Kane R, Patrick D, Peskind ER, Raskind MA, et al. The Caregiver Activity Survey (CAS): development and validation of a new measure for caregivers of persons with Alzheimer's disease. Int J Geriatr Psychiatry. 1997;12(10):978-88.

74. Schofield HL, Murphy B, Herrman H, Bloch S, Singh B. Family caregiving: measurement of emotional well-being and various aspects of the caregiving role. Psychol Med. 1997;27(03):647-57.

75. Fulton Picot SJ, Youngblut J, Zeller R. Development and testing of a measure of perceived caregiver rewards in adults. J Nurs Meas. 1997;5(1):33-52.

76. Kaufer DI, Cummings JL, Christine D, Bray T, Castellon S, Masterman D, et al. Assessing the impact of neuropsychiatric symptoms in Alzheimer's disease: the Neuropsychiatric Inventory Caregiver Distress Scale. J Am Geriatr Soc. 1998 Feb;46(2):210-5.

77. Kaufer DI, Cummings JL, Ketchel P, Smith V, MacMillan A, Shelley T, et al. Validation of the NPI-Q, a brief clinical form of the Neuropsychiatric Inventory. The J Neuropsychiatry Clin Neurosci. 2000;12(2):233-9.

78. Bakas T, Champion V. Development and psychometric testing of the Bakas Caregiving Outcomes Scale. Nurs Res. 1999;48(5):250-9.

79. Farran CJ, Miller BH, Kaufman JE, Donner E, Fogg L. Finding meaning through caregiving: Development of an instrument for family caregivers of persons with Alzheimer's disease. J Clin Psychol. 1999;55(9):1107-25.

80. Matsuda O. Reliability and validity of the subjective burden scale in family caregivers of elderly relatives with dementia. Int Psychogeriatr. 1999;11(2):159-70.

81. Zeiss AM, Gallagher-Thompson D, Lovett S, Rose J, McKibbin C. Selfefficacy as a mediator of caregiver coping: Development and testing of an assessment model. J Clin Geropsychol. 1999;5(3):221-30.

82. Miyashita M, Yamaguchi A, Kayama M, Narita Y, Kawada N, Akiyama M, et al. Validation of the Burden Index of Caregivers (BIC), a multidimensional short care burden scale from Japan. Health Qual Life Outcomes. 2006;4(1):52.

83. McPherson CJ, Wilson KG, Brajtman S, Lobchuk M. Self-perceived burden to others: patient and family caregiver correlates. J Palliat Care. 2007;23(3):135.

84. Covinsky KE, Goldman L, Cook EF, Oye R, Desbiens N, Reding D, et al. The impact of serious illness on patients' families. JAMA. 1994;272(23):1839-44.

85. Montorio Cerrato I, Fernández de Trocóniz MI, López López A, Sánchez Colodrón M. La entrevista de carga del cuidador: utilidad y validez del concepto de carga. Anales de Psicología. 1998;14(2):229-48.

86. Given CW, Stommel M, Given B, Osuch J, Kurtz ME, Kurtz J. The influence of cancer patients' symptoms and functional states on patients' depression and family caregivers' reaction and depression. Health Psychol. 1993;12(4):277.

87. Fredman L, Daly M. Patient-caregiver functional unit scale: a new scale to assess the patient-caregiver dyad. Fam Med. 1997;29(9):658-65.

88. Ferrari JR, Mccown W, Pantano J. Experiencing Satisfaction and Stress as an Aids Care Provider The AIDS Caregiver Scale. Eval Health Prof. 1993;16(3):295-310.