Experiences of informal care to the person with dyspnea at home

Authors

Filipe Ferreira ENI – Empresário em Nome Individual
Esmeralda Barreira Instituto Português de Oncologia do Porto Francisco Gentil, Porto; Universidade Fernando Pessoa

Keywords:

Informal caregivers, Dyspnoea, Homecare, Cancer

Abstract

Dyspnoea affects life quality of the patient and its family due to the impairment of communication and every day activities, anxiety and even panic. Most patients with cancer suffer dyspnoea episodes resulting from the primary disease, metastasis or even from treatment. During these phases, patients at home need informal caregivers to assist then in their activities. The
present descriptive exploratory study, includes the participation of 14 informal caregivers of cancer patients with dyspnoea. The results showed that caregivers reduce their social activities and present dichotomous feelings of both comfort and sadness. During acute episodes of dyspnoea apathy and despair are the predominant experiences reported by these caregivers.

Downloads

Download data is not yet available.

References

American Thoracic Society. (1999). Dyspnea. Mechanisms, assessment, and management: A consensus statement. American Journal of Respiratory and Critical Care medicine, 159, 321-340.

Bardin, L. (2016). Análise de Conteúdo. Lisboa, Edições 70.

Borg, G. (1982). Psychophysical bases of perceived exertion. Medicine & Science in Sports & Exercise, n.º 14, pp. 377-381.

Breaden, K. (2011). Recent advances in the management of Breathlessness. Indian Journal of Palliative Care, Supplement, pp. s39-s32.

Cachia, E.& Ahmedzai S. H. (2008). Breathlessness in cancer patient. European Journal of Cancer, vol. 44, pp. 1116-1123.

Cairns, L. (2012). Managing breathelessness in patients with lung cancer. Nursing Standard, 27 (13) pp. 44-49.

Caldeira, L. F. (2009). Sobrecarga do cuidador informal de idosos dependentes no Conselho de Ribeira Grande. [Em linha]. Disponível em

<https://repositorio-aberto.up.pt/bitstream/10216/19131/2/ESCx.pdf> [Consultado em 18/05/2018].

Clemens, K. E., Quednau, I., & Klaschik, E., (2008). Is there a Higher risk os respiratory depression in opioid – naïve palliative care patients during symptomatic therapy of dyspnea with strong opioids? Journal of Palliative Medicine, vol.11 n.º 2.

Cruz, D. C., Loureiro, H. A., Silva, M. A., & Fernandes, M. M., (2010). As vivencias do cuidador informal do idoso dependente. Revista Científica da Unidade de Investigação em Ciências da Saúde: Domínio de Enfermagem, 3 (2), pp.127-136.

Currow, David C., Higginson, I. J., & Johnson, M. J. (2013). Breathlessness – current and emerging mechanisms, measurement and management: A discussion from na European Association of Palliative Care workshop, Journal of Palliative Medicine, pp. 932-938.

Dose, A.M., Carey, E. C., Rhudy, L. M., Chiu, Y., Frimannsdottir, K., Ottenber, A. L., & Koenig, B. A. (2015). Dying in the hospital: perspectives of family members. Journal of Palliative Care, 31 (1), pp. 13-20.

Duan, J., Fu, J., Gao, H., Chen, C., Fu, J., Shi, X. & Liu, X. (2015). Factor analysis of the caregiver quality of life index-cancer (CQOLC) scale for Chinese cancer caregivers: a preliminary reliability and validity study of the CQOLC. Chinese Version, Journal Plos One. Vol.10, p.1371.

Fortin, M. (2009b). Fundamentos e etapas do processo de investigação. Loures, Lusociência.

Hill, M. e Hill, A (2016). Investigação por questionário. 2ª edição, 6ª impressão, Lisboa, Edições Silabo.

Hudson, P., Trauer T., Kelly B., O´Connor M., Thomas K., Zordan R., & Summers M., (2015). Reducing the psychological distress of family caregivers of home based palliative care patients: longer term effects from a randomised controlled trial. Psycho-Oncology, 24(1), pp. 19-24.

International Council Of Nurses (2015). CIPE, Classificação Internacional para a prática de enfermagem, versão 2015, Lisboa, Ordem dos Enfermeiros.

Janse, B., Hujjsman, R., Kuyper, R. D. M. & Fabbricotti, I. N. (2014). The effects of an integrated care intervention for the frail elderly on informal caregivers: a quasiexperimental study. BMC Geriatrics, Vol.14, pp.58-70.

Joyce, M. M. (2010). Dyspnea In C.G. Brown, A guide to oncology symptom management. Pittsburgh, PA: Oncology Nursing Society, p. 199-223.

Kirby, E., Good, A. B. P., Wootton, J. & Admas, J., (2014). Families and the transation to specialist palliative care. Mortality, Vol.19, pp. 323-341.

Marciniuk, D., Goodridge, D., Hernandez, P., Rocker, G., Balter, M., Bailey, P., Ford, G., Bourbeau, J., O’Donnell, D. E., Maltais, F., Mularski, R. A., Cave, A. J., Mayers, I., Kennedy, V., Oliver, T. K., Brown, C., & Canadian Thoracic Society COPD Committee Dyspnea Expert Working Group (2011). Managing dyspnea in patines with advances chronic obstructive pulmonar disease: A Canadian Thoracic Society clinical practice guideline. Canadian Respiratory Journal , vol. 18, pp. 1-10.

Miravitlles, M., Longobardo, L. M. P., Moreno, J. O., & Vega, A. H., (2015). Caregivers´burden in patients with COPD. Internacional Journal of COPD: 10. pp. 347-356.

Putting Evidence into Practice - Transpondo a Evidência para a Prática (PEP), (2012). Associação Enfermagem Oncológica Portuguesa. Adaptado para os Recursos Euro-PEP de www.ons.org/Research/PEP.

Sarmento, E., Pinto, P., & Monteiro, S., (2010). Cuidar do Idoso, dificuldades dos familiares. Coimbra: Formasau.

Sequeira, C. (2018). Cuidar de Idosos com Dependência Física e Mental, 2ª edição. Lisboa, Lidel Edições.

Soares, Maria S. R. (2012). A pessoa com oxigenoterapia de longa duração. Estudo sobre o modelo de cuidados de enfermagem em contexto domiciliário. Tese de doutoramento apresentada a Universidade Católica Portuguesa, Instituto de Ciências da Saúde. Porto.

Streubert, H. J. & Carpenter, D. R. (2006). Investigação qualitativa em enfermagem: Avançando o imperativo humanista. Loures, Lusiciência.

Viola, R., Kiteley, C., Lloyd, N.S., Mackay, J.A., Wilson, J., & Wong, R.K. (2008). The management of dyspnea in cancer patients: a systematic review. Support Care Center, vol. 16, pp. 329-337.

Downloads

PDF (Português (Portugal))

Published

2020-06-15

How to Cite

Ferreira F, Barreira E. Experiences of informal care to the person with dyspnea at home. Onco.News [Internet]. 2020 Jun. 15 [cited 2024 Nov. 23];(40):6-10. Available from: https://onco.news/index.php/journal/article/view/28