3
SEEO

SEEO

JULIO 2019 N° 1 Volumen 2

The needs of family members in long-term cancer survivorship

Section: Original

Authors

Beatriz Cavallar Oriol1, Cristina García-Vivar2,3

Abstract

Introduction: Cancer is a family experience in which survivors and their families experience changes in the short and long term, especially in the emotional sphere. Concerns about recurrence or the uncertainty of the future generate significant levels of stress in the family. Despite this, there is little research on the needs of family members in cancer survival.

Aims: To identify and describe the needs of family members of cancer survivors in the long-term survival.

Methods: Narrative review with systematic methodology of article selection in four databases (PubMed, Cinhal, PsycINFO y Cochrane Library) published between December 2015 and March 2018 was conducted in addition to manual review of 10 of the most important journals in the field of oncology. The fifteen articles that met the selection criteria were analysed and the quality of these was also assessed.

Results: The family members, referred to as "secondary survivors" have specific needs that should be addressed by health professionals. These needs were classified into the following four categories: emotional and spiritual support, information, care management of the survivor, and the need for attention to the family members themselves.

Conclusions: This review compiles evidence that shows that the family should be viewed as the unit of care in the long-term cancer survivorship. Furthermore, it provides a starting point for the development of new clinical practice guidelines that promote family assessment and intervention, not only in the initial phases of cancer diagnosis and treatment, but also in the long-term cancer survivorship.

Versión en Español

Título:

Necesidades de los familiares en la etapa de larga supervivencia de cáncer

Artículo completo no disponible en este idioma / Full article is not available in this language

Bibliography

  1. Organización Mundial de la Salud [sede Web]. OMS, 2014 [acceso marzo de 2016] Véronique Terrasse. Informe Mundial sobre
  2. el Cáncer 2014. Disponible en: http://www.who.int/mediacentre/news/re leases/2014/cancer-report-20140203/es/
  3.  Siegel RL, Miller KD, Jemal A. Cancer Statistics, 2016. Cancer J Clin. 2016; 66(1): 7-30. doi: 10.3322/caac.21332.
  4.  Alba E, Jesús Cruz J, Barón F, Rodríguez C.A, Blasco A, Escobar Y, Virizuela J.A, Feliú J, Espinosa J. Monográfico SEOM de largos supervivientes de Cáncer, 1ª parte. [monografía en Internet]. Madrid: Sociedad Española de Oncología Médica; 2012. [acceso marzo de 2016]. Disponible en: http://www.seom.org/seomcms/images/st ories/recursos/infopublico/publicaciones/ MONOGRAFICO_SEOM_LARGOS_SUPERVI VIENTES_I.pdf
  5.  Sociedad Española de Enfermería Oncológica [sede Web]. Barcelona: seeo.org; 2009-2017. [acceso noviembre de 2017]. Disponible en: https://www.seeo.org/
  6.  Arrigui E, Jovell AJ. Después del cáncer. Experiencias y necesidades de personas que han superado la enfermedad y de sus familiares [monografía en Internet]. Barcelona: Fundació Josep Laporte; 2011. [acceso marzo de 2016]. Disponible en: http://www.seom.org/es/informacion- sobre-el-cancer/publicaciones/103457- despues-del-cancer-experiencias-y- necesidades-de-personas-que-han- superado-la-enfermedad-y-de-sus- familiares
  7.  Barragan B, Jovell AJ. Informe sobre las necesidades de los supervivientes de cáncer [monografía en Internet]. Grupo español de pacientes con cáncer; 2012. [acceso marzo de     2016]. Disponible en: http://www.gepac.es/images/stories/infor me_supervivientes_web.pdf
  8.  Marzorati C, Riva S, Pravettoni G. Who Is a Cancer Survivor? A Systematic Review of Published Definitions. J Cancer Educ. 2016. doi: 10.1007/s13187-016-0997-2.
  9.  Bowman KF, Rose JH, Deimling GT. Appraisal of the cancer experience by family members and survivors in long-term survivorship. Psycho-Oncology. 2006; 15: 834–45.
  10.  Sklenarova H, Krumpelmann A, Haun MW, Friederich HC, Huber J, Hartmann M. When Do We Need to Care About the Caregiver? Supportive Care Needs, Anxiety, and Depression Among Informal Caregivers of
  11.  Patients With Cancer and Cancer Survivors. Cancer. 2015; 121: 1513-19. doi: 10.1002/cncr.29223.
  12.  Bishop MM, Curbow BA, Srpinger SH, Lee JA, Wingard JR. Comparison of lasting life changes after cancer and BMT: perspectives of long-term survivors and spouses. Psychooncology. 2011; 20(9): 926- 34. doi: 10.1002/pon.1812.
  13.  Adams E, Boulton M, Rose PW, Lund S, Richardson A, Wilson S, et al. A qualitative study exploring the experience of the partners of cancer survivors and their views on the role of primary care. Support Care Center. 2012; 20(11): 2785-94. doi: 10.1007/s00520-012-1400-4.
  14.  Matthews BA. Role and gender differences in cancer- related distress: a comparison of survivor and caregiver self- reports. Oncol Nurs Forum. 2003; 30(3):493-99.
  15. Girgis A, Lambert S, Lecathelinais C. The supportive care needs survey for partn ers and caregivers of cancer survivors: development and psychometric evaluation. Psychooncology. 2011 ; 20(4): 387-93. doi: 10.1002/pon.1740.
  16.  a systematic review and meta-analysis. Lancet Oncol. 2013; 14(8): 721-32. doi: 10.1016/S1470-2045(13)70244-4.
  17.  Lambert SD, Girgis A, Lecathelinais C, Stacey F. Walking a mile in their shoes: anxiety and depression among partners and caregi vers of cancer survivors at 6 and 12 months post-diagnosis. Support Care Cancer. 2013; 21(1): 75-85. doi: 10.1007/s00520-012-1495-7.
  18.  Lambert SD, Harrison JD, Smith E, Bonevski B, Carey M, Lawsin C et al. The unmet needs of partners and caregivers of adults diagnosed with cancer: a systematic review. BMJ Support Palliat Care. 2012; 2: 224-30. doi: 10.1136/bmjspcare-2012-000226.
  19.  Girgis A, Lambert SD, McElduff P, Bonevski B, Lecathelinais C, Boyes A et al. Some things change, some things stay the same: a longitudinal analysis of cancer caregivers' unmet supportive care needs. Psychooncology. 2013; 22(7), 1557-64. doi:10.1002/pon.3166.
  20. Tolbert E, Bowie J, Snyder C, Bantung E, Smith K. A qualitative exploration for the experiences, needs, and roles of caregivers during and after cancer treatment: “That’s what I say. I’m a relative survivor”. J Cancer Surviv. 2018; 12(1): 134-44. doi: 10.1007/s11764-017-0652-x.
  21.  Santin O, Treanor C, Mills M, Donnelly M. The health status and health service needs of primary caregivers of cancer survivors: a mixed methods approach. Eur J Cancer Care. 2014; 23(3): 333-39.
  22.  Kim Y, Spillers RL, Hall DL. Quality of life of family caregivers 5 years after a relative’s cancer diagnosis: follow-up of the national quality of life survey for caregivers. Psychooncology. 2012; 21(3): 273-81. doi: 10.1002/pon.1888.
  23.  Turner D, Adams E, Boulton M, Harrison S, Khan N, Rose P et al. Partners and close family members of long-term cancer survivors: health status, psychosocial well- being and unmet supportive care needs. Psychooncology. 2013; 22(1): 12-9. doi: 10.1002/pon.2050.
  24.  Hodgkinson K, Butow P, Hunt GE, Wyse R, Hobbs KM, Wain G. Life after cancer: couple’s and partner’s psychological adjustment and supportive care needs. Support Care Cancer. 2007; 15(4): 405-15.
  25.  Campbell SH, Sanson-Fisher R, Taylor- Brown J, Hayward L, Wang XS, Turner D. The Cancer Support Person’s Unmet Needs Survey: psychometric properties. Cancer. 2009; 115(14): 3351-59. doi: 10.1002/cncr.24386.
  26.  Kim Y, Spillers RL. Quality of life of family caregivers at 2 years after a relative's cancer diagnosis. Psychooncology. 2010; 19(4): 431-40. doi: 10.1002/pon.1576.
  27.  Kim Y, Kashy DA, Spillers RL, Evans TV. Needs assessment of family caregivers of cancer survivors: three cohorts comparison. Psychooncology. 2010; 19(6): 573-82. doi: 10.1002/pon.1597.
  28. Mellon S, Northouse LL, Weiss LK. A population-based study of the quality of life of cancer survivors and their family caregivers. Cancer Nurs. 2006; 29(2): 120- 31.
  29.  Balfe M, O’Brien K, Timmons A, Butow P, O’Sullivan E, Gooberman-Hill R et al. The unmet supportive care needs of long-term head and neck cancer caregivers in the extended survivorship period. J Clin Nurs. 2016; 25(11-12): 1576-86. doi: 10.1111/jocn.13140.
  30.  Harden J, Sanda MG, Wei JT, Yarandi HN, Hembroff L, Hardy J, & Northouse L. Survivorship after prostate cancer treatment: spouses quality of life at 36 months. Oncol Nurs Forum. 2013; 40(6): 567-73. doi: 10.1188/13.ONF.567-573.
  31.  Hodgkinson K, Butow P, Hobbs KM, Hunt GE, Lo SK, Wain G. Assessing unmet supportive care needs in partners of cancer survivors: the development and evaluation of the Cancer Survivor’s Partners Unmet Needs Measure (CaSPUN). Psychooncology. 2006; 16(9): 805-13. doi: 10.1002/pon.1138.
  32.  of the support person's unmet needs survey--short form. Eur J Cancer. 2013; 23(2): 255-62. doi: 10.1111/ecc.12138.
  33.  Lambert S, Girgis A, Descallar J, Levesque JV, Jones B. Trajectories of mental and physical functioning among spouse caregivers of cancer survivors over the first years following the diagnosis. Patient Educ Couns. 2017; 100(6): 1213-21. doi: 10.1016/j.pec.2016.12.031.
  34.  Borrás Andrés JM. Estrategia en Cáncer del Sistema Nacional de Salud, 2010 [monografía en Internet]. Madrid: Ministerio de Sanidad y Política Social; 2010. [acceso mayo de 2016]. Disponible en: http://www.msssi.gob.es/organizacion/sns/planCalidadSNS/pdf/ActualizacionEstrateg iaCancer.pdf
  35. Instituto Nacional del Cáncer (NIH). Una transición difícil: los planes para supervivientes de cáncer se afianzan con lentitud. 2012. [acceso mayo de 2017]. Disponible en: http://www.cancer.gov/espanol/cancer/so brellevar/investigacion/planes- supervivencia.
  36.  Nekhlyudov L, Ganz PA, Arora NK, Rowland JH. Going Beyond Being Lost in Transition: A Decade of Progress in Cancer Survivorship. J Clin Oncol. 2017 20;35(18):1978-81. doi: 10.1200/JCO.2016.72.13
  37.  Departamento de Salud del Gobierno Vasco. Plan Oncológico de Euskadi 2018- 2023. Vitoria: Departamento de Salud, Osakidetza; 2018.
  38.  Corcoran S, Dunne M, McCabe MS. The Role of Advanced Practice Nurses in Cancer Survivorship Care. Semin Oncol Nurs. 2015;31(4):338-347. doi:10.1016/j.soncn.2015.08.009
  39.  Luctkar-Flude M, Aiken A, McColl MA, Tranmer J. A comprehensive framework and key guideline recommendations for the provision of evidence-based breast cancer survivorship care within the primary care setting. Fam Pract. 2015;32(2):129-140. doi:10.1093/fampra/cmu082