| dc.relation | 1. World Health Organization. Noncommunicable Diseases Country Profiles 2018. World Health Organization. Geneva; 2018.
2. WHO. Definition of Palliative Care. http://www.who.int/cancer/palliative/definition/en/#. 2015. p. 2015.
3. Pastrana T, De Lima L, Pons JJ CC. Atlas de Cuidados Paliativos de Latinoamérica. Houston; 2013.
4. Arias-Rojas M, Carreño–Moreno S, Chaparro L. Incertidumbre ante la enfermedad crónica. Revisión integrativa. Rev Latinoam Bioética. 2019;19(36–1).
5. Garcia-Rueda N, Carvajal Valcarcel A, Saracibar-Razquin M, Arantzamendi Solabarrieta M. The experience of living with advanced-stage cancer: a thematic synthesis of the literature. Eur J Cancer Care (Engl). 2016 Jul;25(4):551–69.
6. Selman LE, Brighton LJ, Sinclair S, Karvinen I, Egan R, Speck P, et al. Patients’ and caregivers’ needs, experiences, preferences and research priorities in spiritual care: A focus group study across nine countries. Palliat Med. 2018;32(1):216–30.
7. Rocío L, Rojas EA, González MC, Carreño S, Diana C, Gómez O. Experiences of patient-family caregiver dyads in palliative care during hospital-to-home transition process. Int J Palliat Nurs [Internet]. 2017 Jul 2 [cited 2019 Oct 28];23(7):332–9. Available from: http://www.ncbi.nlm.nih.gov/pubmed/28756752
8. Sidani S, Braden CJ. Design, Evaluation, and Translating of Nursing Interventions. Oxford: Wiley-Blackwell; 2011.
9. Centeno C, Sitte T, de Lima L, Alsirafy S, Bruera E, Callaway M, et al. Documento de Posición Oficial sobre la Promoción Global de Cuidados Paliativos: Recomendaciones del Grupo Internacional Asesor PAL-LIFE de la Academia Pontificia de la Vida, Ciudad del Vaticano. J Palliat Med [Internet]. 2018 Sep 26;21(10):1398–407. Available from: https://doi.org/10.1089/jpm.2018.0387
10. World Health Organization. Global atlas of palliative care at the end of life. Ginebra; 2014.
11. Ministerio de la Protección Social, Instituto Nacional de Cancerología ESE. Modelo para el control del cáncer en Colombia. Bogotá; 2006.
12. Manjiani D, Paul DB, Kunnumpurath S, Kaye AD, Vadivelu N. Availability and utilization of opioids for pain management: global issues. Ochsner J. 2014;14(2):208–15.
13. Arias-Casais N, Garralda E, Rhee J, Lima L, Pons-Izquierdo J, Clark D, et al. EAPC atlas of palliative care in Europe 2019. EAPC Press. Vilvoorde; 2019.
14. Ministerio de salud y de la protección social. Ley Sandra Ceballos. Colombia: Diario Oficial 47.685 de abril 19 de 2010; 2010.
15. Social M de salud y de la protección. Ley Consuelo Devis Saavedra. Colombia: Diario Oficial No. 49.268 de 8 de septiembre de 2014; 2014.
16. Fernado Ruiz Gomez. Circular N°0023 del 20 de abril de 2016. Instrucciones respecto de la garantía de los derechos de los pacientes que requieran cuidados paliativos [Internet]. Bogotá; 2016. Available from: https://www.nuevalegislacion.com/files/susc/cdj/conc/circ_msps_23_16.pdf
17. Colombia necesita más Cuidados Paliativos | Blogs El Espectador [Internet]. [cited 2019 Oct 28]. Available from: https://blogs.elespectador.com/actualidad/relaciona2/colombia-necesita-mas-cuidados-paliativos
18. Salud M de, Cancerología IN de. Plan nacional para el control del cáncer en colombia 2012-2020. 2012;
19. Ministerio de Salud y Protección Social. Guía para la atención de pacientes en cuidado paliativo [Internet]. Bogotá; 2016 [cited 2019 Oct 28]. Available from: http://gpc.minsalud.gov.co/gpc_sites/Repositorio/Otros_conv/GPC_paliativo/Version_cortapaliativo2016_04_20.pdf
20. Dumitrescu L, van den Heuvel-Olaroiu M, van den Heuvel WJA. Changes in Symptoms and Pain Intensity of Cancer Patients After Enrollment in Palliative Care at Home. J Pain Symptom Manag. 2007; 34(5):488–96.
21. Tang ST. Predictors of the extent of agreement for quality of life assessments between terminally ill cancer patients and their primary family caregivers in Taiwan. Qual Life Res. 2006;15(3):391–404.
22. van der Meulen IC, de Leeuw JR, Gamel CJ, Hafsteinsdottir TB. Educational intervention for patients with head and neck cancer in the discharge phase. Eur J Oncol Nurs. 2013;17(2):220–7.
23. Van Lancker A, Velghe A, Van Hecke A, Verbrugghe M, Van Den Noortgate N, Grypdonck M, et al. Prevalence of Symptoms in older cancer patients receiving palliative care: a systematic review and Meta-Analysis. J Pain Symptom Manage. 2014;47(1):90–104.
24. Kotronoulas G, Wengstrom 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 Manage. 2013;45(3):579–94.
25. Printz C. Cancer caregivers still have many unmet needs. Cancer. 2011;117(7):1331.
26. Moore G, Collins A, Brand C, Gold M, Lethborg C, Murphy M, et al. Palliative and supportive care needs of patients with high-grade glioma and their carers: a systematic review of qualitative literature. Patient Educ Couns. 2013;91(2):141–53.
27. Alexander SC, Ladwig S, Norton SA, Gramling D, Davis JK, Metzger M, et al. Emotional distress and compassionate responses in palliative care decision-making consultations. J Palliat Med. 2014;17(5):579–84.
28. Bee PE, Barnes P, Luker KA. A systematic review of informal caregivers’ needs in providing home-based end-of-life care to people with cancer. J Clin Nurs. 2009;18(10):1379–93.
29. Harrison JD, Young JM, Auld S, Masya L, Solomon MJ, Butow PN. Quantifying postdischarge unmet supportive care needs of people with colorectal cancer: A clinical audit. Color Dis. 2011;13(12):1400–6.
30. Hudson PL, Aranda S, Kristjanson LJ. Meeting the supportive needs of family caregivers in palliative care: challenges for health professionals. J Palliat Med. 2004;7(1):19–25.
31. Ugur O, Elcigil A, Arslan D, Sonmez A. Responsibilities and difficulties of caregivers of cancer patients in home care. Asian Pac J Cancer Prev. 2014;15(2):725–9.
32. Booth S, Silvester S TC. Breathlessness in cancer and chronic obstructive pulmonary disease: using a qualitative approach to describe the experience of patients and carers. palliat Support care. 2003;1:337–44.
33. Probst S, Arber A, Trojan A, Faithfull S. Caring for a loved one with a malignant fungating wound. Support Care Cancer. 2012;20(12):3065–70.
34. Etkind SN, Bristowe K, Bailey K, Selman LE, Murtagh FE. How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data. Palliat Med. 2017;31(2):171–80.
35. Rocío L, Rojas EA, González MC, Carreño S, Diana C, Gómez O. Experiences of patient-family caregiver dyads in palliative care during hospital-to-home transition process. Int J Palliat Nurs. 2017 Jul 2;23(7):332–9.
36. Carrillo GM, Arias-Rojas M, Carreño SP, Gómez OJ, López R, Cárdenas DC. Looking for Control at the End of Life Through the Bond: A Grounded Theory on the Hospital Discharge Process in Palliative Care. J Hosp Palliat Nurs. 2018;20(3):296–303.
37. Sparla A, Flach-Vorgang S, Villalobos M, Krug K, Kamradt M, Coulibaly K, et al. Individual difficulties and resources - a qualitative analysis in patients with advanced lung cancer and their relatives. Patient Prefer Adherence. 2016;10:2021–9.
38. McMillan SC, Small BJ, Weitzner M, Schonwetter R, Tittle M, Moody L, et al. Impact of coping skills intervention with family caregivers of hospice patients with cancer. Cancer. 2006;106(1):214–22.
39. Holm M, Årestedt K, Öhlen J, Alvariza A. Variations in grief, anxiety, depression, and health among family caregivers before and after the death of a close person in the context of palliative home care. Death Stud. 2019;23:1–9.
40. Gotze H, Brahler E, Gansera L, Schnabel A, Gottschalk-Fleischer A, Kohler N. Anxiety, depression and quality of life in family caregivers of palliative cancer patients during home care and after the patient’s death. Eur J Cancer Care. 2018;27(2):e12606.
41. Becqué YN, Rietjens JAC, van Driel AG, van der Heide A, Witkamp E. Nursing interventions to support family caregivers in end-of-life care at home: A systematic narrative review. Int J Nurs Stud. 2019;97:28–39.
42. National Family Caregivers Association. Caregiving Statistics [Internet]. 2012 [cited 2019 Oct 28]. Available from: https://caregiveraction.org/who_are_family_caregivers/care_giving_statstics.cfm
43. National Hospice and Palliative Care Organization. Facts and figures hospice care in America [Internet]. 2018 [cited 2019 Oct 28]. Available from: https://39k5cm1a9u1968hg74aj3x51-wpengine.netdna-ssl.com/wp-content/uploads/2019/04/2017_Facts_Figures-2.pdf
44. Wang T, Molassiotis A, Chung BPM, Tan J-Y. Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review. BMC Palliat Care. 2018;17(1):96.
45. O’Connell B, Baker L, Prosser A. The educational needs of caregivers of stroke survivors in acute and community settings. J Neurosci Nurs. 2003;35(1):21–8.
46. Hudson PL, Remedios C, Thomas K. A systematic review of psychosocial interventions for family carers of palliative care patients. BMC Palliat Care. 2010;9:17.
47. Candy B, Jones L, Drake R, Leurent B, King M. Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane database Syst Rev. 2011;(6):CD007617.
48. Zhang Y. Uncertainty in Illness: Theory Review, Application, and Extension. Oncol Nurs Forum. 2017;44(6):645–9.
49. Northouse LL, Mood DW, Montie JE, Sandler HM, Forman JD, Hussain M, et al. Living with prostate cancer: patients’ and spouses’ psychosocial status and quality of life. J Clin Oncol. 2007;25(27):4171–7.
50. Byun E, Riegel B, Sommers M, Tkacs N, Evans L. Caregiving Immediately After Stroke: A Study of Uncertainty in Caregivers of Older Adults. J Neurosci Nurs. 2016;48(6):343–51.
51. Chaney JM, Gamwell KL, Baraldi AN, Ramsey RR, Cushing CC, Mullins AJ, et al. Parent Perceptions of Illness Uncertainty and Child Depressive Symptoms in Juvenile Rheumatic Diseases: Examining Caregiver Demand and Parent Distress as Mediators. J Pediatr Psychol. 2016;41(9):941–51.
52. Arias-Rojas M, Carreño–Moreno S, Posada C. Uncertainty in illness in family caregivers of palliative care patients and associated factors. Rev Latino-Am Enferm. 2019;27:e3200.
53. Kimbell B, Boyd K, Kendall M, Iredale J, Murray SA. Managing uncertainty in advanced liver disease: a qualitative, multiperspective, serial interview study. BMJ Open. 2015;5(11):e009241.
54. Hasson F, Kernohan WG, McLaughlin M, Waldron M, McLaughlin D, Chambers H, et al. An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease. Palliat Med. 2010;24(7):731–6.
55. Murray SA, Boyd K, Kendall M, Worth A, Benton TF, Clausen H. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their careers in the community. BMJ Br Med J. 2002;325(7370):929–32.
56. Rabow MW, Hauser JM, Adams J. Perspectives on care at the close of life. Supporting family caregivers at the end of life: “they don’t know what they don’t know.” JAMA J Am Med Assoc. 2004;291(4):483–91.
57. Benzar E, Hansen L, Kneitel AW, Fromme EK. Discharge planning for palliative care patients: a qualitative analysis. J Palliat Med. 2011;14(1):65–9.
58. Miller SC. Hospice and Palliative Care in Nursing Homes: Challenges and Opportunities for Enhanced Access. R I Med. 2014;98(4):26-9.
59. Collins A, McLachlan S-A, Philip J. How should we talk about palliative care, death and dying? A qualitative study exploring perspectives from caregivers of people with advanced cancer. Palliat Med. 2018;32(4):861–9.
60. Gardner DS. Cancer in a dyadic context: older couples’ negotiation of ambiguity and search for meaning at the end of life. J Soc Work End Life Palliat Care. 2008;4(2):135–59.
61. Garcia-Toyos N, Escudero-Carretero MJ, Sanz-Amores R, Guerra-De Hoyos J-A, Melchor-Rodriguez J-M, Tamayo-Velazquez M-I. Preferences of caregivers and patients regarding opioid analgesic use in terminal care. Pain Med. 2014 Apr;15(4):577–87.
62. Chi N-C, Demiris G. Family Caregivers’ Pain Management in End-of-Life Care: A Systematic Review. Am J Hosp Palliat Care. 2017 Jun;34(5):470–85.
63. Wennman-Larsen A, Tishelman C. Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers. Scand J Caring Sci. 2002;16(3):240–7.
64. Stajduhar KI, Funk L, Outcalt L. Family caregiver learning—how family caregivers learn to provide care at the end of life: A qualitative secondary analysis of four datasets. Palliat Med. 2013;27(7):657–64.
65. Rabow MW, Hauser JM, Adams J. Supporting family caregivers at the end of life: “they don’t know what they don’t know”. JAMA. 2004 Jan 28;291(4):483–91.
66. McIlfatrick S. Assessing palliative care needs: views of patients, informal carers and healthcare professionals. J Adv Nurs. 2007;57(1):77–86.
67. Hayle C, Coventry PA, Gomm S, Caress A-L. Understanding the experience of patients with chronic obstructive pulmonary disease who access specialist palliative care: A qualitative study. Palliat Med. 2013;27(9):861–8.
68. Hanratty B, Holmes L, Lowson E, Grande G, Addington-Hall J, Payne S, et al. Older adults’ experiences of transitions between care settings at the end of life in England: a qualitative interview study. J Pain Symptom Manage. 2012;44(1):74–83.
69. Holley APH, Gorawara-Bhat R, Dale W, Hemmerich J, Cox-Hayley D. Palliative Access Through Care at Home: Experiences with an Urban, Geriatric Home Palliative Care Program. J Am Geriatr Soc. 2009;57(10):1925–31.
70. Grimmer KA, Moss JR, Gill TK. Discharge planning quality from the carer perspective. Qual Life Res. 2000;9(9):1005–13.
71. Aujoulat I, Libion F, Bois H, Martin F, Deccache A. Communication difficulties of healthcare professionals and family caregivers of HIV infected patients. Patient Educ Couns. 2002 Jul;47(3):213–22.
72. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, Grambow S, Parker J, et al. Preparing for the end of life: Preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage. 2001;22(3):727–37.
73. Orrevall Y. Nutritional support at the end of life. Nutrition. 2015;31(4):615–6.
74. Murphy DJ, Burrows D, Santilli S, Kemp AW, Tenner S, Kreling B, et al. The influence of the probability of survival on patients’ preferences regarding cardiopulmonary resuscitation. N Engl J Med. 1994 Feb 24;330(8):545–9.
75. Lee H-TS, Melia KM, Yao C-A, Lin C-J, Chiu T-Y, Hu W-Y. Providing hospice home care to the terminally ill elderly people with cancer in Taiwan: family experiences and needs. Am J Hosp Palliat Care. 2014;31(6):628–35.
76. Phillips DL. Mechanisms linking social ties and support to physical and mental health. J Health Soc Behav. 2011;52(2):145–61.
77. Talley RC, Montgomery RJ V. Caregiving: A Developmental, Life-Long Perspective. In 2013. p. 3–10.
78. Strachan PH, Ross H, Rocker GM, Dodek PM, Heyland DK. Mind the gap: Opportunities for improving end-of-life care for patients with advanced heart failure. Can J Cardiol. 2009;25(11):635–40.
79. Haley WE, LaMonde LA, Han B, Narramore S, Schonwetter R. Family caregiving in hospice: effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. Hosp J. 2001;15(4):1–18.
80. LaValley SA. End-of-Life Caregiver Social Support Activation: The Roles of Hospice Clinicians and Professionals. Qual Health Res. 2018;28(1):87–97.
81. Rutkowski NA, Lebel S, Richardson K, Mutsaers B, Chasen M, Feldstain A. A little help from my friends: Social support in palliative rehabilitation. Curr Oncol. 2018;25(6):358–65.
82. Zavagli V, Raccichini M, Ercolani G, Franchini L, Varani S, Pannuti R. Care for Carers: an Investigation on Family Caregivers’ Needs, Tasks, and Experiences. Transl Med UniSa. 2019;19:54–9.
83. Arora NK, Finney Rutten LJ, Gustafson DH, Moser R, Hawkins RP. Perceived helpfulness and impact of social support provided by family, friends, and health care providers to women newly diagnosed with breast cancer. Psychooncology. 2007;16(5):474–86.
84. Cardoso F, Harbeck N, Mertz S, Fenech D. Evolving psychosocial, emotional, functional, and support needs of women with advanced breast cancer: Results from the Count Us, Know Us, Join Us and Here & Now surveys. Breast [Internet]. 2016 ;28:5–12.
85. Tallman K, Greenwald R, Reidenouer A, Pantel L. Living with advanced illness: longitudinal study of patient, family, and caregiver needs. Perm J. 2012;16(3):28–35.
86. Mishel MH. Theories of uncertainty in illness. In: Smith MJ, Patricia R. Liehr PDA, editors. Middle range theory for nursing. 3rd ed. New York: Springer Publishing Company; 2014. p. 53–86.
87. Mckechnie R, Macleod R, Keeling S. Facing uncertainty: The lived experience of palliative care. Palliat Support Care. 2007;5(04):367–76.
88. Kirk P, Kirk I, Kristjanson LJ. What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. BMJ. 2004;328(7452):1343.
89. Butow PN, Price MA, Bell ML, Webb PM, deFazio A, Friedlander M. Caring for women with ovarian cancer in the last year of life: a longitudinal study of caregiver quality of life, distress and unmet needs. Gynecol Oncol. 2014;132(3):690–7.
90. Ullrich A, Ascherfeld L, Marx G, Bokemeyer C, Bergelt C, Oechsle K. Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients. BMC Palliat Care. 2017;16(1):31.
91. Fortier MA, Batista ML, Wahi A, Kain A, Strom S, Sender LS. Illness uncertainty and quality of life in children with cancer. J Pediatr Hematol Oncol. 2013;35(5):366–70.
92. Buchbinder DK, Fortier MA, Osann K, Wilford J, Shen V, Torno L, et al. Quality of Life Among Parents of Adolescent and Young Adult Brain Tumor Survivors. J Pediatr Hematol Oncol. 2017;39(8):579–84.
93. Barahmand U, Haji A. The impact of intolerance of uncertainty, worry and irritability on quality of life in persons with epilepsy: irritability as mediator. Epilepsy Res. 2014;108(8):1335–44.
94. Molassiotis A, Wilson B, Blair S, Howe T, Cavet J. Living with multiple myeloma: experiences of patients and their informal caregivers. Support care cancer Off J Multinatl Assoc Support Care Cancer. 2011;19(1):101–11.
95. Kershaw TS, Mood DW, Newth G, Ronis DL, Sanda MG, Vaishampayan U, et al. Longitudinal analysis of a model to predict quality of life in prostate cancer patients and their spouses. Ann Behav Med. 2008;36(2):117–28.
96. Byun E, Riegel B, Sommers M, Tkacs N, Evans L. Caregiving Immediately After Stroke. J Neurosci Nurs. 2016;48(6):343–51.
97. Harkness K, Arthur H, McKelvie R. The Measurement of Uncertainty in Caregivers of Patients With Heart Failure. J Nurs Meas. 2013;21(1):23–42.
98. Northouse L, Kershaw T, Mood D, Schafenacker A. Effects of a family intervention on the quality of life of women with recurrent breast cancer and their family caregivers. Psychooncology. 2005;14(6):478–91.
99. Leow M, Chan S, Chan M. A pilot randomized, controlled trial of the effectiveness of a psychoeducational intervention on family caregivers of patients with advanced cancer. Oncol Nurs Forum. 2015;42(2):E63-72.
100. Dionne-Odom JN, Azuero A, Lyons KD, Hull JG, Tosteson T, Li Z, et al. Benefits of Early Versus Delayed Palliative Care to Informal Family Caregivers of Patients With Advanced Cancer: Outcomes From the ENABLE III Randomized Controlled Trial. J Clin Oncol. 2015;33(13):1446–52.
101. Fawcett J, Desanto-Madeya S. Contemporary Nursing Knowledge: Analysis and Evaluation of Nursing Models and Theories [Internet]. F. A. Davis Company; 2013. Available from: https://books.google.com.co/books?id=xpKktwAACAAJ
102. Quintero B. Ética del cuidado humano bajo los enfoques de Milton Mayeroff y Jean Watson. Cienc Soc. XXVI(1):16–22.
103. Ferrell BR, Kravitz K, Borneman T, Taratoot Friedmann E. Family Caregivers: A Qualitative Study to Better Understand the Quality-of-Life Concerns and Needs of This Population. Clin J Oncol Nurs. 2018;22(3):286–94.
104. Chaparro-Díaz L. ICT as a Social Support Mechanism for Family Caregivers of People with Chronic Illness: a Case Study. Aquichan. 2013;13(1)27-40.
105. Carrillo G, Barrera L, Herrera B, Carreño S, Chaparro L. Efecto del programa de habilidad de cuidado para cuidadores familiares de niños con cáncer. Rev Colomb Cancerol. 2014;18(1):18–26.
106. López León D, Rodríguez Calderón L, Carreño Moreno S, Cuenca I, Chaparro Díaz L. Cuidadores de pacientes en diálisis peritoneal: Experiencia de participar en un programa de habilidad de cuidado. Enferm Nefrol. 2015;18(3):189–95.
107. World Health Organization. National cancer control programmes policies and managerial guidelines - WHO 2002. Geneva; 2002.
108. Palliative Care Definition - International Association for Hospice & Palliative Care [Internet]. Available from: https://hospicecare.com/what-we-do/projects/consensus-based-definition-of-palliative-care/definition/
109. Hospice & Palliative Nurses Association. Public policy guiding principles [Internet]. [cited 2019 Oct 28]. Available from: https://advancingexpertcare.org/guiding-principles
110. Chaparro-Díaz L. Trascender en un “vínculo especial” de cuidado: el paso de lo evidente a lo intangible. Universidad Nacional de Colombia; 2009.
111. Kuo H-J, Jhang S-Y, Shun S-C. [Using the FOCUS Family Intervention in Caring for a Patient-Spouse Dyad With Advanced Colorectal Cancer]. Hu Li Za Zhi. 2017;64(3):98–104.
112. Harding R, List S, Epiphaniou E, Jones H. How can informal caregivers in cancer and palliative care be supported? An updated systematic literature review of interventions and their effectiveness. Palliat Med. 2012;26(1):7–22.
113. Whale Z. Head and neck cancer: an overview of literature. Kopf- und Halskrebs Eine Lit. 1998;2:99–105.
114. Beaver K, Twomey M, Witham G, Foy S, Luker KA. Meeting the information needs of women with breast cancer: Piloting a nurse-led intervention. Eur J Oncol Nurs. 2006;10(5):378–90.
115. Eades M, Chasen M, Bhargava R. Rehabilitation: Long-Term Physical and Functional Changes Following Treatment. Semin Oncol Nurs. 2009;25(3):222–30.
116. Baildam A, Keeling F, Noblet M, Thomson L, Bundred N, Hopwood P. Nurse led follow up clinics for women treated for primary breast cancer: A randomized controlled trial. Eur J Cancer. 2002;38:S136.
117. Fagermoen MS, Hamilton G. Patient information at discharge-A study of a combined approach. Patient Educ Couns. 2006;63(1–2):169–76.
118. Sekse RJT, Hunskår I, Ellingsen S. The nurse’s role in palliative care: A qualitative meta-synthesis. J Clin Nurs. 2018;27(1–2):e21–38.
119. Schaepe C, Campbell A-M, Bolmsjo I. A spider in the web: role of the palliative care nurse specialist in Uganda--an ethnographic field study. Am J Hosp Palliat Care. 2011;28(6):403–11.
120. Austin L, Luker K, Caress A, Hallett C. Palliative care: community nurses’ perceptions of quality. Qual Health Care. 2000;9(3):151–8.
121. Tornquist A, Andersson M, Edberg A-K. In search of legitimacy--registered nurses’ experience of providing palliative care in a municipal context. Scand J Caring Sci. 2013;27(3):651–8.
122. Arbour RB, Wiegand DL. Self-described nursing roles experienced during care of dying patients and their families: a phenomenological study. Intensive Crit care Nurs. 2014;30(4):211–8.
123. Raphael D, Waterworth S, Gott M. The role of practice nurses in providing palliative and end-of-life care to older patients with long-term conditions. Int J Palliat Nurs. 2014;20(8):373–9.
124. Ml Verschuur E, M Groot M, van der Sande R. Nurses’ perceptions of proactive palliative care: a Dutch focus group study. Int J Palliat Nurs. 2014;20(5):241–5.
125. Howell D, Hardy B, Boyd C, Ward C, Roman E, Johnson M. Community palliative care clinical nurse specialists: a descriptive study of nurse-patient interactions. Int J Palliat Nurs. 2014;20(5):246–53.
126. Mishel M. Uncertainty in illness. Image J Nurs Sch. 1988;20(4):225–32.
127. Oishi A, Murtagh FEM. The challenges of uncertainty and interprofessional collaboration in palliative care for non-cancer patients in the community: A systematic review of views from patients, carers and health-care professionals. Palliat Med. 2014;28(9):1081–98.
128. Karlsson M, Friberg F, Wallengren C, Ohlén J. Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment: a life-world phenomenological study. BMC Palliat Care. 2014;13(1):28.
129. Harding R, Epiphaniou E, Hamilton D, Bridger S, Robinson V, George R, et al. What are the perceived needs and challenges of informal caregivers in home cancer palliative care? Qualitative data to construct a feasible psycho-educational intervention. Support care cancer. 2012;20(9):1975–82.
130. Fishbain DA, Bruns D, Disorbio JM, Lewis JE, Gao J. Exploration of the illness uncertainty concept in acute and chronic pain patients vs community patients. Pain Med. 2010;11(5):658–69.
131. Neville KL. Uncertainty in illness. An integrative review. Orthopeadic nursing. 2003; 22: 206–14.
132. Greco V, Roger D. Uncertainty, stress, and health.Personality and individual differences. 2003;34(6):1057-1068.
133. McCormick KM. A concept analysis of uncertainty in illness. J Nurs Scholarsh. 2002;34:127–31.
134. Suarez-Acuña CE, Carvajal-Carrascal G, Serrano-Gómez ME. Psychometric properties of the parent́s perception uncertainty in illness scale, spanish version. Enferm intensiva.2019;29(4):149–57.
135. Gomez Palencia IP, Castillo Avila IY, Alvis Estrada LR. Incertidumbre en adultos diabéticos tipo 2 a partir de la teoría de Merle Mishel. Aquichan. 2015;15(2):210–8.
136. Ruydiaz Gómez KS, Fernández Aragón SP. Incertidumbre y apoyo social en gestantes con trastornos hipertensivos. Index Enferm. 2015;24(1–2):67-70.
137. Muñoz MonterrozaD. I, Cogollo JiménezR, Arteaga NoriegaA. Incertidumbre frente a la enfermedad en mujeres diagnosticadas con cáncer de seno. Revista Investigaciones Andina. 2018;36(20):11-22.
138. Montalvo-Prieto A, Fajardo H, Angulo T, Flórez D, Caffroni R, Fajardo Y. Condiciones sociodemográficas y nivel de incertidumbre en mujeres ante el diagnóstico de cáncer de mama. Hacia la Promoción la Salud. 2016;21(2):114–26.
139. Durán de Villalobos MM. Marco epistemológico de la enfermería. Aquichan; 2009; 2(1): 7-18.
140. Dorantes-Acosta E, Villasgas-Keever M, Zapata-Tarros M, Arias-Gomez J, Escamilla-Nuñez A, Miranda-Lora L, et al. Calidad de vida de niños Mexicanos con leucemia linfoblástica aguda atendidos por el seguro popular. Bol Med Hosp Infant Mex. 2012;69(3):242–54.
141. Sammarco A. Perceived social support, uncertainty, and quality of life of younger breast cancer survivors. Cancer Nurs. 2001 Jun;24(3):212–9.
142. Farias Queiroz D, Costa H, Zandonade E, Monteiros H. Quality of life of children and adolescents with cancer: revision of studies literature that used the pediatric Quality of life inventory TM. Invest Educ Enferm Invest Educ Enferm. 2015;33(2):343–54.
143. Schur S, Ebert-Vogel A, Amering M, Masel EK, Neubauer M, Schrott A, et al. Validation of the “Quality of Life in Life-Threatening Illness--Family Carer Version” (QOLLTI-F) in German-speaking carers of advanced cancer patients. Support care cancer Off J Multinatl Assoc Support Care Cancer. 2014 Oct;22(10):2783–91.
144. Padilla G V, Ferrell B, Grant MM, Rhiner M. Defining the content domain of quality of life for cancer patients with pain. Cancer Nurs. 1990;13(2):108–15.
145. Padilla G V., Grant MM, Ferrell B. Nursing research into quality of life. Qual Life Res. 1992;1(5):341–8.
146. O’Boyle CA, Waldron D. Quality of life issues in palliative medicine. J Neurol. 1997;244 Suppl:S18-25.
147. Bowen DJ, Kreuter M, Spring B, Cofta-Woerpel L, Linnan L, Weiner D, et al. How we design feasibility studies. Am J Prev Med. 2009;36(5):452–7.
148. Clayton M, Dean M, Mishel M. Theories of Uncertainty in Illness. In: Smith MJ, Liehr P, editors. Middle range theory for nursing. 4 Ed. New York: Springer Publishing Company; 2018. p. 49–82.
149. Mishel MH, Padilla G, Grant M, Sorenson DS. Uncertainty in Illness Theory. Nurs Res. 1991;40(4):236-240.
150. Henson LA, Higginson IJ, Daveson BA, Ellis-Smith C, Koffman J, Morgan M, et al. “I’ll be in a safe place”: a qualitative study of the decisions taken by people with advanced cancer to seek emergency department care. BMJ Open. 2016;6(11):e012134.
151. Teno JM, Casey VA, Welch LC, Edgman-Levitan S. Patient-focused, family-centered end-of-life medical care: views of the guidelines and bereaved family members. J Pain Symptom Manage. 2001;22(3):738–51.
152. Vahidi M, Mahdavi N, Asghari E, Ebrahimi H, Eivazi Ziaei J, Hosseinzadeh M, et al. Other Side of Breast Cancer: Factors Associated with Caregiver Burden. Asian Nurs Res. 201623;10(3):201–6.
153. Chiou C-P, Chung Y-C. Effectiveness of multimedia interactive patient education on knowledge, uncertainty and decision-making in patients with end-stage renal disease. J Clin Nurs. 2012;21(9–10):1223–31.
154. Collier A, Breaden K, Phillips JL, Agar M, Litster C, Currow DC. Caregivers’ perspectives on the use of long term oxygen therapy for the treatment of refractory breathlessness: a qualitative study. J Pain Symptom Manage. 2017;53(1):33-39.
155. Pelletier-Hibbert M, Sohi P. Sources of uncertainty and coping strategies used by family members of individuals living with end stage renal disease. Nephrol Nurs J. 2001 Aug;28(4):411–7.
156. Hudson PL, Trauer T, Lobb E, Zordan R, Williams A, Quinn K, et al. Supporting family caregivers of hospitalised palliative care patients: a psychoeducational group intervention. BMJ Support Palliat Care. 2012 Jun;2(2):115–20.
157. Waldrop DP, Kramer BJ, Skretny JA, Milch RA, Finn W. Final transitions: family caregiving at the end of life. J Palliat Med. 2005;8(3):623–38.
158. Germino BB, Mishel MH, Belyea M, Harris L, Ware A, Mohler J. Uncertainty in prostate cancer. Ethnic and family patterns. Cancer Pract. 1998;6(2):107–13.
159. Ling S-F, Chen M-L, Li C-Y, Chang W-C, Shen WC, Tang ST. Trajectory and influencing factors of depressive symptoms in family caregivers before and after the death of terminally ill patients with cancer. Oncol Nurs Forum. 2013;40(1):E32-40.
160. Borneman T, Sun V, Williams AC, Fujinami R, Del Ferraro C, Burhenn PS, et al. Support for Patients and Family Caregivers in Lung Cancer: Educational Components of an Interdisciplinary Palliative Care Intervention. J Hosp Palliat Nurs. 2015;17(4):309–18.
161. Sharkey T. The effects of uncertainty in families with children who are chronically ill. Home Healthc Nurse. 1995;13(4):37–42.
162. Richardson A, Wagland R, Foster R, Symons J, Davis C, Boyland L, et al. Uncertainty and anxiety in the cancer of unknown primary patient journey: a multiperspective qualitative study. BMJ Support Palliat Care. 2015;5(4):366–72.
163. Aoun SM, Deas K, Howting D, Lee G. Exploring the Support Needs of Family Caregivers of Patients with Brain Cancer Using the CSNAT: A Comparative Study with Other Cancer Groups. PLoS One. 2015;10(12):e0145106.
164. Sodowsky K. Spousal Caregiver Narratives and Credible Authority: Uncertainty in Illness of Spousal Caregivers. Qual Rep [Internet]. 2012 Jan 1;17.
165. Song L, Tyler C, Clayton MF, Rodgiriguez-Rassi E, Hill L, Bai J, et al. Patient and family communication during consultation visits: The effects of a decision aid for treatment decision-making for localized prostate cancer. Patient Educ Couns. 2017;100(2):267–75.
166. Finucane AM, Lugton J, Kennedy C, Spiller JA. The experiences of caregivers of patients with delirium, and their role in its management in palliative care settings: an integrative literature review. Psychooncology. 2017;26(3):291–300.
167. Mishel MH, Braden CJ. Finding meaning: antecedents of uncertainty in illness. Nurs Res. 1988;37(2):98-103,127.
168. Harris KA. The informational needs of patients with cancer and their families. Cancer Pract. 1998;6(1):39–46.
169. Rocker G, Young J, Donahue M, Farquhar M, Simpson C. Perspectives of patients, family caregivers and physicians about the use of opioids for refractory dyspnea in advanced chronic obstructive pulmonary disease. CMAJ. 2012 Jun;184(9):E497-504.
170. Bajwah S, Koffman J, Higginson IJ, Ross JR, Wells AU, Birring SS, et al. “I wish I knew more ...” the end-of-life planning and information needs for end-stage fibrotic interstitial lung disease: views of patients, carers and health professionals. BMJ Support Palliat Care. 2013 Mar;3(1):84–90.
171. Kendall M, Carduff E, Lloyd A, Kimbell B, Cavers D, Buckingham S, et al. Different Experiences and Goals in Different Advanced Diseases: Comparing Serial Interviews With Patients With Cancer, Organ Failure, or Frailty and Their Family and Professional Carers. J Pain Symptom Manage. 2015;50(2):216–24.
172. Van den Heuvel LA, Spruit MA, Schols JM, Hoving C, Wouters EF, Janssen DJ. Barriers and facilitators to end-of-life communication in advanced chronic organ failure. Int J Palliat Nurs. 2016 May;22(5):222–9.
173. Bristowe K, Carey I, Hopper A, Shouls S, Prentice W, Caulkin R, et al. Patient and carer experiences of clinical uncertainty and deterioration, in the face of limited reversibility: A comparative observational study of the AMBER care bundle. Palliat Med. 2015 Oct;29(9):797–807.
174. Wordingham SE, McIlvennan CK, Dionne-Odom JN, Swetz KM. Complex Care Options for Patients With Advanced Heart Failure Approaching End of Life. Curr Heart Fail Rep. 2016 Feb;13(1):20–9.
175. Ek K, Andershed B, Sahlberg-Blom E, Ternestedt B-M. “The unpredictable death”-The last year of life for patients with advanced COPD: Relatives’ stories. Palliat Support Care. 2015 Oct;13(5):1213–22.
176. Kang Y. Effect of uncertainty on depression in patients with newly diagnosed atrial fibrillation. Prog Cardiovasc Nurs. 2006;21(2):83–8.
177. Daneault S, Lussier V, Mongeau S, Yelle L, Cote A, Sicotte C, et al. Ultimate journey of the terminally ill: Ways and pathways of hope. Can Fam Physician. 2016 Aug;62(8):648–56.
178. Bjork M, Sundler AJ, Hallstrom I, Hammarlund K. Like being covered in a wet and dark blanket - Parents’ lived experiences of losing a child to cancer. Eur J Oncol Nurs. 2016;25:40–5.
179. Gil KM, Mishel MH, Belyea M, Germino B, Porter LS, Clayton M. Benefits of the Uncertainty Management Intervention for African American and White Older Breast Cancer Survivors: 20-Month Outcomes. Int J Behav Med [Internet]. 2006 Dec;13(4):286–94.
180. Germino BB, Mishel MH, Crandell J, Porter L, Blyler D, Jenerette C, et al. Outcomes of an uncertainty management intervention in younger African American and Caucasian breast cancer survivors. Oncol Nurs Forum. 2013 Jan;40(1):82–92.
181. Badger TA, Braden CJ, Mishel MH. Depression Burden, Self-Help Interventions, and Side Effect Experience in Women Receiving Treatment for Breast Cancer. Oncol Nurs Forum [Internet]. 2001 Apr;28(3):567–74.
182. Kazer MW, Bailey DEJ, Sanda M, Colberg J, Kelly WK. An Internet intervention for management of uncertainty during active surveillance for prostate cancer. Oncol Nurs Forum. 2011 Sep;38(5):561–8.
183. Amoako E, Skelly AH, Rossen EK. Outcomes of an intervention to reduce uncertainty among African American women with diabetes. West J Nurs Res. 2008 Dec;30(8):928–42.
184. Jiang X, He G. Effects of an uncertainty management intervention on uncertainty, anxiety, depression, and quality of life of chronic obstructive pulmonary disease outpatients. Res Nurs Health. 2012 Aug;35(4):409–18.
185. Brashers DE, Basinger ED, Rintamaki LS, Caughlin JP, Para M. Taking Control: The Efficacy and Durability of a Peer-Led Uncertainty Management Intervention for People Recently Diagnosed With HIV. Health Commun. 2017 Jan;32(1):11–21.
186. Mitchell ML, Courtney M. Reducing family members’ anxiety and uncertainty in illness around transfer from intensive care: an intervention study. Intensive Crit care Nurs. 2004 Aug;20(4):223–31.
187. Chan A, Tetzlaff J, Altman D, Laupacis A, Gotzsche P. Spirit 2013 statement: Defining standard protocol items for clinical trials. Ann Intern Med. 2013;158(3):200–7.
188. Friedman LM, Furberg C, DeMets DL, Reboussin D, Granger CB. Fundamentals of clinical trials. Springer; 2015.
189. Adams YJ, Kamp K, Liu CC, Stommel M, Thana K, Broome ME, et al. Revisiting the Quality of Reporting Randomized Controlled Trials in Nursing Literature. J Nurs Scholarsh an Off Publ Sigma Theta Tau Int Honor Soc Nurs. 2018 Mar;50(2):200–9.
190. Scheel IB, Hagen KB, Oxman AD. The unbearable lightness of healthcare policy making: a description of a process aimed at giving it some weight. J Epidemiol Community Heal. 2003;57(7):483–7.
191. Armstrong D, Winder R, Wallis R. Impediments to policy implementation: the offer of free installation of central heating to an elderly community has limited uptake. Public Health. 2006;120(2):161–6.
192. Rowland D, DiGuiseppi C, Roberts I, Curtis K, Roberts H, Ginnelly L, et al. Prevalence of working smoke alarms in local authority inner city housing: randomised controlled trial. Bmj. 2002;325(7371):998.
193. Bower P, Wilson S, Mathers N. how often do UK primary care trials face recruitment delays? Fam Pract. 2007;24(6):601–3.
194. McDonald AM, Knight RC, Campbell MK, Entwistle VA, Grant AM, Cook JA, et al. What influences recruitment to randomised controlled trials? A review of trials funded by two UK funding agencies. Trials. 2006;7(1):9.
195. Prescott RJ, Counsell CE, Gillespie WJ, Grant AM, Russell IT, Kiauka S, et al. Factors that limit the quality, number and progress of randomised controlled trials. Health Technol Assess. 1999;3(20):1.
196. Hui D, Glitza I, Chisholm G, Yennu S, Bruera E. Attrition rates, reasons, and predictive factors in supportive care and palliative oncology clinical trials. Cancer. 2013;119(5):1098–105.
197. Smith BA, Lee H-J, Lee JH, Choi M, Jones DE, Bausell RB, et al. Quality of reporting Randomized Controlled Trials (RCTs) in the nursing literature: Application of the Consolidated Standards of Reporting Trials (CONSORT). Nurs Outlook [Internet]. 2008 Jan 1;56(1):31-37.e3.
198. Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. Developing and Evaluating Complex Interventions: New Guidance. Med Res Counc [Internet]. 2008;1–39.
199. Browne RH. On the use of a pilot sample for sample size determination. Stat Med. 1995 Sep;14(17):1933–40.
200. Julious SA. Sample size of 12 per group rule of thumb for a pilot study. Pharm Stat J Appl Stat Pharm Ind. 2005;4(4):287–91.
201. Sim J, Lewis M. The size of a pilot study for a clinical trial should be calculated in relation to considerations of precision and efficiency. J Clin Epidemiol. 2012;65(3):301–8.
202. Teare MD, Dimairo M, Shephard N, Hayman A, Whitehead A, Walters SJ. Sample size requirements to estimate key design parameters from external pilot randomised controlled trials: a simulation study. Trials. 2014;15:264.
203. Hendrix CC, Abernethy A, Sloane R, Misuraca J, Moore J. A pilot study on the influence of an individualized and experiential training on cancer caregiver’s self-efficacy in home care and symptom management. Home Healthc Nurse. 2009 May;27(5):271–8.
204. Penner JL, Sabiston CM, Ducharme F, Cohen SR. P098 Home-based Physical Activity for Family Caregivers of People with Advanced Cancer: A Pilot Randomized Controlled Trial. J Pain Symptom Manage [Internet]. 2016;52(6):e89–90.
205. Bournique R. Randomizer for Clinical Trial Lite [Internet]. 2011. Available from: https://apps.apple.com/us/app/randomizer-for-clinical-trial-lite/id492195415
206. Penner J. Development and Pilot Testing of a Home Based Physical Activity Intervention for Family Caregivers of People with Advanced Cancer. McGill University; 2014.
207. Zou P, Dennis C-L, Lee R, Parry M. Dietary approach to stop hypertension with sodium reduction for Chinese Canadians (Dashna-CC): A pilot randomized controlled trial. J Nutr Health Aging [Internet]. 2016; Available from: https://doi.org/10.1007/s12603-016-0861-4
208. Mishel MH. Uncertainty in illness scales manual. Chape Hill, NC; 1997.
209. Arias-Rojas M, Carreño SP, López JR. Validación de la escala de incertidumbre ante la enfermedad en cuidadores de pacientes en cuidado paliativo. Med Paliativa. 2019;26(4):265-271.
210. Ferrell BR, Grant M, Chan J, Ahn C, Ferrell BA. The impact of cancer pain education on family caregivers of elderly patients. Oncol Nurs Forum. 1995 Sep;22(8):1211–8.
211. Barrera Ortiz L, Carrillo González GM, Chaparro Díaz L, Sánchez Herrera B, Vargas Rosero E, Patricia Carreño S. Validez de constructo y confiabilidad del instrumento calidad de vida versión familiar en español. Enfermería Glob. 2015;14(37):227–38.
212. Chaparro-Diaz L, Sánchez B, Carrillo-Gonzalez GM. Encuesta de caracterización del cuidado de la diada cuidadorfamiliar - persona con enfermedad crónica. Rev Cienc y Cuid [Internet]. 2015 Sep;11(2):31–45.
213. Hoffmann TC, Glasziou PP, Boutron I, Milne R, Perera R, Moher D, et al. Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. Bmj. 2014;348:g1687.
214. Krippendorff K. Content Analysis: An Introduction to Its Methodology. 2nd ed. Thousand Oaks: Sage; 2004. (Content Analysis: An Introduction to Its Methodology).
215. Guba E, Lincoln Y. Handbook of qualitative research. 1994. 105–117 p.
216. Consejo De Organizaciones Internacionales Cioms. Ethical Guidelines for Biomedical Research on Human Beings. Geneva; 2002.
217. Congreso de la República de Colombia. Ley 911 de 2004. Colombia: Diario Oficial No. 45.693; 2004.
218. Ministerio de Salud República de Colombia. Resolución N° 008430 [Internet]. Constitución Política de Colombia 1993 p. 12. Available from: http://www.unisabana.edu.co/fileadmin/Documentos/Investigacion/comite_de_etica/Res__8430_1993_-_Salud.pdf
219. Sampieri RH, Collado CF, Lucio PB. Metodología de la investigación [Internet]. McGraw-Hill Education; 2014. Available from: https://books.google.com.co/books?id=oLbjoQEACAAJ
220. Macleod R. Setting the context: what do we mean by psychosocial care in palliative care? In: Lloyd-Williams M, editor. Psychosocial issues in palliative care. 2nd ed. New York: Oxford University Press; 2008.
221. Andershed B. Relatives in end-of-life care--part 1: a systematic review of the literature the five last years, January 1999-February 2004. J Clin Nurs. 2006;15(9):1158–69.
222. Grande G, Stajduhar K, Aoun S, Toye C, Funk L, Addington-Hall J, et al. Supporting lay carers in end of life care: current gaps and future priorities. Palliat Med. 2009 Jun;23(4):339–44.
223. Harding R, Higginson IJ. What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliat Med. 2003 Jan;17(1):63–74.
224. Northouse LL, Walker J, Schafenacker A, Mood D, Mellon S, Galvin E, et al. A family-based program of care for women with recurrent breast cancer and their family members. Oncol Nurs Forum. 2002;29(10):1411–9.
225. Santacroce SJ. Support from health care providers and parental uncertainty during the diagnosis phase of perinatally acquired HIV infection. J Assoc Nurses AIDS Care. 2000;11(2):63–75.
226. Keefe FJ, Ahles TA, Sutton L, Dalton J, Baucom D, Pope MS, et al. Partner-guided cancer pain management at the end of life: a preliminary study. J Pain Symptom Manage. 2005 Mar;29(3):263–72.
227. Hudson PL, Aranda S, Hayman-White K. A Psycho-Educational Intervention for Family Caregivers of Patients Receiving Palliative Care: A Randomized Controlled Trial. J Pain Symptom Manage. 2016 Aug 22;30(4):329–41.
228. Walsh K, Jones L, Tookman A, Mason C, McLoughlin J, Blizard R, et al. Reducing emotional distress in people caring for patients receiving specialist palliative care. Randomised trial. Br J Psychiatry. 2007 Feb;190:142–7.
229. Harding R, Higginson IJ, Leam C, Donaldson N, Pearce A, George R, et al. Evaluation of a short-term group intervention for informal carers of patients attending a home palliative care service. J Pain Symptom Manage. 2004 May;27(5):396–408.
230. Carter PA. A brief behavioral sleep intervention for family caregivers of persons with cancer. Cancer Nurs. 2006;29(2):95–103.
231. Pampallona S, Bollini P. Palliative care in developing countries: why research is needed. J Pain Palliat Care Pharmacother. 2003;17(3–4):171–4.
232. Secretaría de Salud de México, Organización panamericana de la salud. Primera Reunión de Foro Regional de Salud Urbana de la Organización Panamericana de la Salud. Ciudad de México; 2008. p. 1–139.
233. De Arco O del C. Sobrecarga laboral en profesionales de enfermería de unidades de cuidado intensivo en instituciones hospitalarias de Cartagena de Indias, 2012. Universidad Nacional de Colombia; 2013.
234. Cárdenas MAS, Bermúdez GPF. Gestion clínica de programas de cuidado domiciliario. Rev CES Salud Pública [Internet]. 2016;7(2). Available from: http://revistas.ces.edu.co/index.php/ces_salud_publica/article/viewFile/4091/2689
235. LeBlanc TW, Lodato JE, Currow DC, Abernethy AP. Overcoming recruitment challenges in palliative care clinical trials. J Oncol Pract. 2013 Nov;9(6):277–82.
236. Stone PC, Gwilliam B, Keeley V, Todd C, Kelly LC, Barclay S. Factors affecting recruitment to an observational multicentre palliative care study. BMJ Support Palliat Care. 2013 Sep;3(3):318–23.
237. Paz Ruiz S, Clark D. Palliative care in Colombia. Prog Palliat Care. 2005;13(2):75–83.
238. Lancaster GA, Dodd S, Williamson PR. Design and analysis of pilot studies: recommendations for good practice. J Eval Clin Pract. 2004 May;10(2):307–12.
239. Duggleby W, Wright K, Williams A, Degner L, Cammer A, Holtslander L. Developing a living with hope program for caregivers of family members with advanced cancer. J Palliat Care. 2007;23(1):24–31.
240. Luker K, Cooke M, Dunn L, Lloyd-Williams M, Pilling M, Todd C. Development and evaluation of an intervention to support family caregivers of people with cancer to provide home-based care at the end of life: a feasibility study. Eur J Oncol Nurs. 2015 Apr;19(2):154–61.
241. Aoun S, Deas K, Toye C, Ewing G, Grande G, Stajduhar K. Supporting family caregivers to identify their own needs in end-of-life care: Qualitative findings from a stepped wedge cluster trial. Palliat Med. 2015 Jun;29(6):508–17.
242. Cárdenas-Corredor DC, Melenge-Díaz B, Pinilla J, Carrillo-González GM, Chaparro-Díaz L. Soporte social con el uso de las TIC para cuidadores de personas con enfermedad crónica: un estado del arte. Aquichan. 2010;10(3):204–13.
243. Steinhauser KE, Fitchett G, Handzo GF, Johnson KS, Koenig HG, Pargament KI, et al. State of the Science of Spirituality and Palliative Care Research Part I: Definitions, Measurement, and Outcomes. J Pain Symptom Manage. 2017 Sep;54(3):428–40.
244. Walczak A, Butow PN, Tattersall MHN, Davidson PM, Young J, Epstein RM, et al. Encouraging early discussion of life expectancy and end-of-life care: A randomised controlled trial of a nurse-led communication support program for patients and caregivers. Int J Nurs Stud. 2017 Feb;67:31–40.
245. Byun E, Riegel B, Sommers M, Tkacs N, Evans L. Effects of Uncertainty on Perceived and Physiological Stress in Caregivers of Stroke Survivors: A 6-Week Longitudinal Study. J Gerontol Nurs. 2017;43(11):30–40.
246. Arias-Rojas M, Carreño-Moreno S, Posada-López C. Incerteza dos cuidadores familiares na doença de pacientes sob cuidados paliativos e fatores associados. Rev Lat Am Enfermagem. 2019 Oct 14;27:e3200.
247. Christakis NA, Lamont EB. Extent and determinants of error in doctors’ prognoses in terminally ill patients: prospective cohort study. BMJ. 2000 Feb;320(7233):469–72.
248. Glare P, Virik K, Jones M, Hudson M, Eychmuller S, Simes J, et al. A systematic review of physicians’ survival predictions in terminally ill cancer patients. BMJ. 2003 Jul;327(7408):195–8.
249. Etkind SN, Koffman J. Approaches to managing uncertainty in people with life-limiting conditions: role of communication and palliative care. Postgrad Med J. 2016 Jul;92(1089):412–7.
250. Arias-Rojas M, Carreño–Moreno S. Cuidados paliativos en la persona con cáncer: guía práctica para cuidadores familiares. Bogotá: Graficas Ducal; 2019. p. 1–45.
251. Skaggs BG, Barron CR. Searching for meaning in negative events: concept analysis. J Adv Nurs. 2006 Mar;53(5):559–70.
252. Parry C. Embracing uncertainty: an exploration of the experiences of childhood cancer survivors. Qual Health Res. 2003 Feb;13(2):227–46.
253. Lemieux J, Goodwin PJ, Bordeleau LJ, Lauzier S, Theberge V. Quality-of-life measurement in randomized clinical trials in breast cancer: an updated systematic review (2001-2009). J Natl Cancer Inst. 2011 Feb;103(3):178–231.
254. Goodwin PJ, Black JT, Bordeleau LJ, Ganz PA. Health-related quality-of-life measurement in randomized clinical trials in breast cancer--taking stock. J Natl Cancer Inst. 2003 Feb;95(4):263–81.
255. Hudson P, Thomas T, Quinn K, Cockayne M, Braithwaite M. Teaching family carers about home-based palliative care: final results from a group education program. J Pain Symptom Manage. 2009 Aug;38(2):299–308.
256. Kwak J, Salmon JR, Acquaviva KD, Brandt K, Egan KA. Benefits of training family caregivers on experiences of closure during end-of-life care. J Pain Symptom Manage. 2007 Apr;33(4):434–45.
257. Cohen R, Leis AM, Kuhl D, Charbonneau C, Ritvo P, Ashbury FD. QOLLTI-F: measuring family carer quality of life. Palliat Med. 2006 Dec;20(8):755–67.
258. López Rangel R, Gómez Ramírez OJ. Experiencia del cuidador familiar de quien fallece por cáncer: un dolor del cual hay que aprender a sobreponerse. Aquichan. 2018;18(4):395–406. | |
