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The grounded theory developed by Santana-Medina and Rodríguez-Suárez on the home care needs of pediatric palliative patients in Spain clearly discusses on how a home environment meets appropriate conditions for palliative care.<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">1</span></a> In the light of the current evidence, we discuss our experience from India, in a similar context where neuro-palliative care delivery is provided.</p><p id="par0010" class="elsevierStylePara elsevierViewall">Neuro-palliative nursing is the intersection between neuroscience nursing and palliative care nursing, where the focus is to alleviate suffering for patients and families with chronic neurological illnesses. Nursing care for chronic and progressive neurological diseases is being given in multiple settings and in varying degrees in the country. However, we have a dedicated neuro-palliative care team in a tertiary care setting which is comprised of a multidisciplinary team. This ensures that care is comprehensive and the organization, planning and experience of the process is greater than the sum of the individual team member contribution to patient care.<a class="elsevierStyleCrossRef" href="#bib0010"><span class="elsevierStyleSup">2</span></a></p><p id="par0015" class="elsevierStylePara elsevierViewall">Home-based palliative care is one of the modes of service delivery that we use for patients who are unable to visit the hospital. This allows better understanding of the complex challenges faced by patients, carers, and their coping and family dynamics. The symptom burden in patients receiving neuropalliative services is huge. In addition to the physical symptoms, the supportive care team addresses the ‘total pain’ of the illness; including physical, psychosocial, and spiritual pain. Addressing such holistic needs in a home setting improves the sense of privacy and comfort for patient, increases caregiver satisfaction and makes care delivery more cost-effective.<a class="elsevierStyleCrossRef" href="#bib0015"><span class="elsevierStyleSup">3</span></a></p><p id="par0020" class="elsevierStylePara elsevierViewall">The need for nursing care-pathways for patients with neuro-palliative needs is felt as a clinical and research priority. As neuropalliative nursing is a growing domain, developing and testing protocols and strategies that can direct nursing interventions is essential to advance empirical evidence in this field. This is very much in congruence with the current scholarly opinion.<a class="elsevierStyleCrossRef" href="#bib0020"><span class="elsevierStyleSup">4</span></a></p><p id="par0025" class="elsevierStylePara elsevierViewall">Another important reflection we had, was on the chances of loss of engagement with chronic neurological patients in the course of their illness owing to the cognitive decline or communication difficulties that they experience during the course of illness. Hence relational engagement is critical for nursing practice with this subset of patients.<a class="elsevierStyleCrossRef" href="#bib0020"><span class="elsevierStyleSup">4</span></a> Yet another observation was the need for inter-professional education in palliative care settings. As palliative care is fundamentally multidisciplinary, inter-professional education can help neuro-palliative nurses in integrating systems and building collaborative partnerships thereby contributing to improved patient outcomes.<a class="elsevierStyleCrossRef" href="#bib0025"><span class="elsevierStyleSup">5</span></a></p><p id="par0030" class="elsevierStylePara elsevierViewall">Neuropalliative nursing is witnessing growth as a specialty. It is demanding as well as rewarding at the same time. Even though nursing has palliative care principles at its core, to keep up to the demands of this specialty, there is a need to re-orient our focus and re-define our scope of practice.</p><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0005">Funding</span><p id="par0035" class="elsevierStylePara elsevierViewall">The project leading to this write up was funded by <span class="elsevierStyleGrantSponsor" id="gs0005">Cipla Foundation</span>.</p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0010">Conflict of interest</span><p id="par0040" class="elsevierStylePara elsevierViewall">The authors have no conflicts of interest to declare.</p></span></span>" "textoCompletoSecciones" => array:1 [ "secciones" => array:4 [ 0 => array:2 [ "identificador" => "sec0005" "titulo" => "Funding" ] 1 => array:2 [ "identificador" => "sec0010" "titulo" => "Conflict of interest" ] 2 => array:2 [ "identificador" => "xack745663" "titulo" => "Acknowledgement" ] 3 => array:1 [ "titulo" => "References" ] ] ] "pdfFichero" => "main.pdf" "tienePdf" => true "bibliografia" => array:2 [ "titulo" => "References" "seccion" => array:1 [ 0 => array:2 [ "identificador" => "bibs0005" "bibliografiaReferencia" => array:5 [ 0 => array:3 [ "identificador" => "bib0005" "etiqueta" => "1" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Home care needs of paediatric palliative patients perceived by professionals: a grounded theory" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:2 [ 0 => "J. Santana-Medina" 1 => "C.A. Rodríguez-Suárez" ] ] ] ] ] "host" => array:1 [ 0 => array:2 [ "doi" => "10.1016/j.enfcle.2023.01.001" "Revista" => array:6 [ "tituloSerie" => "Enferm Clin (Engl Ed)" "fecha" => "2023" "volumen" => "33" "paginaInicial" => "184" "paginaFinal" => "194" "link" => array:1 [ 0 => array:2 [ "url" => "https://www.ncbi.nlm.nih.gov/pubmed/37023962" "web" => "Medline" ] ] ] ] ] ] ] ] 1 => array:3 [ "identificador" => "bib0010" "etiqueta" => "2" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "The neuropalliative multidisciplinary team-members and their roles" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:3 [ 0 => "F. Brennan" 1 => "M.D. Gardiner" 2 => "M. Narasimhan" ] ] ] ] ] "host" => array:1 [ 0 => array:2 [ "doi" => "10.1016/B978-0-323-85029-2.00010-5" "Revista" => array:6 [ "tituloSerie" => "Handb Clin Neurol" "fecha" => "2022" "volumen" => "190" "paginaInicial" => "33" "paginaFinal" => "59" "link" => array:1 [ 0 => array:2 [ "url" => "https://www.ncbi.nlm.nih.gov/pubmed/36055719" "web" => "Medline" ] ] ] ] ] ] ] ] 2 => array:3 [ "identificador" => "bib0015" "etiqueta" => "3" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Home based palliative care: known benefits and future directions" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:4 [ 0 => "B. Roberts" 1 => "M. Robertson" 2 => "E.I. Ojukwu" 3 => "D.S. Wu" ] ] ] ] ] "host" => array:1 [ 0 => array:2 [ "doi" => "10.1007/s13670-021-00372-8" "Revista" => array:6 [ "tituloSerie" => "Curr Geriatr Rep" "fecha" => "2021" "volumen" => "10" "paginaInicial" => "141" "paginaFinal" => "147" "link" => array:1 [ 0 => array:2 [ "url" => "https://www.ncbi.nlm.nih.gov/pubmed/34849331" "web" => "Medline" ] ] ] ] ] ] ] ] 3 => array:3 [ "identificador" => "bib0020" "etiqueta" => "4" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Neuropalliative care: an integrative review of the nursing literature" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:2 [ 0 => "M. Sofronas" 1 => "D.K. Wright" ] ] ] ] ] "host" => array:1 [ 0 => array:2 [ "doi" => "10.1016/j.ijnurstu.2021.103879" "Revista" => array:3 [ "tituloSerie" => "Int J Nurs Stud" "fecha" => "2021" "volumen" => "117" ] ] ] ] ] ] 4 => array:3 [ "identificador" => "bib0025" "etiqueta" => "5" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Impact of palliative and end of life care interprofessional education for pre-licensure healthcare students: an integrated review" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:4 [ 0 => "Y.R.N. Kukimoto" 1 => "K.P.T. Maeda" 2 => "N.R.N. Yasui" 3 => "M.O.T. Nakamura" ] ] ] ] ] "host" => array:1 [ 0 => array:2 [ "doi" => "10.1177/10499091221108344" "Revista" => array:6 [ "tituloSerie" => "Am J Hosp Palliat Care" "fecha" => "2023" "volumen" => "40" "paginaInicial" => "202" "paginaFinal" => "215" "link" => array:1 [ 0 => array:2 [ "url" => "https://www.ncbi.nlm.nih.gov/pubmed/35711094" "web" => "Medline" ] ] ] ] ] ] ] ] ] ] ] ] "agradecimientos" => array:1 [ 0 => array:4 [ "identificador" => "xack745663" "titulo" => "Acknowledgement" "texto" => "<p id="par0045" class="elsevierStylePara elsevierViewall">The authors would like to thank Cipla Foundation for funding the project.</p>" "vista" => "all" ] ] ] "idiomaDefecto" => "en" "url" => "/24451479/0000003400000002/v2_202405191950/S2445147923000589/v2_202405191950/en/main.assets" "Apartado" => array:4 [ "identificador" => "63167" "tipo" => "SECCION" "en" => array:2 [ "titulo" => "Letters to the Editor" "idiomaDefecto" => true ] "idiomaDefecto" => "en" ] "PDF" => "https://static.elsevier.es/multimedia/24451479/0000003400000002/v2_202405191950/S2445147923000589/v2_202405191950/en/main.pdf?idApp=UINPBA00004N&text.app=https://www.elsevier.es/" "EPUB" => "https://multimedia.elsevier.es/PublicationsMultimediaV1/item/epub/S2445147923000589?idApp=UINPBA00004N" ]
Journal Information
Vol. 34. Issue 2.
Pages 141-142 (March - April 2024)
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Vol. 34. Issue 2.
Pages 141-142 (March - April 2024)
Letter to the Editor
Neuropalliative nursing and home care model: Experience and evidence
Enfermería neuropaliativa y modelo de cuidados domiciliarios: experiencia y evidencia
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5
a College of Nursing, National Institute of Mental Health and Neurosciences, Bangalore, India
b Neuropalliative and Supportive Care Project, Department of Neurology, National Institute of Mental Health and Neurosciences, Bangalore, India
c Department of Psychiatric Social Work, National Instituteof Mental Health and Neurosciences, Bangalore, India
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