scholarly journals Informational needs of family caregivers of people with intellectual disability who require palliative care: a two-phase integrative review of the literature

2019 ◽  
Vol 25 (1) ◽  
pp. 4-18 ◽  
Author(s):  
Laurie McKibben ◽  
Kevin Brazil ◽  
Peter Hudson ◽  
Dorry McLaughlin
Keyword(s):  
Palliative Care ◽  
Intellectual Disability ◽  
Family Caregivers ◽  
Integrative Review ◽  
Informational Needs ◽  
Review Of The Literature ◽  
Two Phase

Determining the informational needs of family caregivers of people with intellectual disability who require palliative care: A qualitative study

2020 ◽  
pp. 1-10
Author(s):  
Laurie McKibben ◽  
Kevin Brazil ◽  
Dorry McLaughlin ◽  
Peter Hudson
Keyword(s):  
Palliative Care ◽  
Intellectual Disability ◽  
Intellectual Disabilities ◽  
Family Caregivers ◽  
Family Caregiving ◽  
Information Needs ◽  
Logic Model ◽  
Informational Needs ◽  
Health And Social Care ◽  
People With Intellectual Disabilities

Abstract Objectives People with intellectual disabilities are living longer, and many require palliative care. There is a lack of evidence regarding information needs which may exist for their family caregivers. This study aimed to determine the informational needs of family caregivers of people with intellectual disabilities who require palliative care. Methods A qualitative, exploratory design was underpinned by the Transactional Model of Stress and Coping and the Transformative Paradigm. The study involved five Health and Social Care (HSC) Trusts and two Hospices in one region of the United Kingdom. Family caregivers (n = 10) participated in individual interviews. HSC professionals’ (n = 28) perceptions of informational needs were explored within focus groups (n = 6). Results Family caregivers reported information needs chiefly concerning the disease, financial entitlements, and practical support which could change over the disease trajectory. Findings evidence the expertise of long-term family caregivers, prior to the end of life. Palliative care and intellectual disability teams acknowledged their role to work in partnership and facilitate access to information. Recommendations were mapped onto a co-designed logic model. Significance of results New insights into the specific informational needs of this family caregiving population. A co-designed logic model presents these needs and how they may be addressed. Central co-ordinators have been advocated for these caregivers. This model could have international applicability for similar family carers, supporting people with other disabilities or cognitive impairment, and should be further explored.

scholarly journals Family caregivers: what do they need? An integrative review

2016 ◽  
Vol 50 (4) ◽  
pp. 675-682 ◽  
Author(s):  
Carla Sílvia Fernandes ◽  
Margareth Angelo
Keyword(s):  
Family Caregivers ◽  
Search Engine ◽  
Scientific Evidence ◽  
Integrative Review ◽  
Nursing Interventions ◽  
Review Of The Literature ◽  
Formal Support ◽  
Specific Search

Abstract OBJECTIVE Aimed to identify the main needs expressed by family caregivers in caring for adependent person. METHOD An integrative review of the literature in the period between 2010 and 2015 using specific search engine tools in the EBSCO and SCOPUSdatabases. RESULTS 11 articles were selected, and the analysis of the scientific evidence obtained allowed for organizing the results into five thematic areas:transition into care, being responsible for everything, the importance of support, access to formal support, communication and informationprocesses. CONCLUSION The results showed that caregivers have many needs in different areas, which should be addressed in nursing interventions.

Unique and Universal Barriers: Hospice Care for Aging Adults with Intellectual Disability

2012 ◽  
Vol 117 (6) ◽  
pp. 509-532 ◽  
Author(s):  
Sandra L. Friedman ◽  
David T. Helm ◽  
Ashley C. Woodman
Keyword(s):  
Palliative Care ◽  
Intellectual Disability ◽  
Hospice Care ◽  
Collaborative Approach ◽  
Review Of The Literature ◽  
Age Related ◽  
Care Workers ◽  
Multiple Challenges ◽  
Aging Adults ◽  
Hospice And Palliative Care

Abstract As life expectancy of people with intellectual disability (ID) has increased, there has been a concurrent increase in age-related illnesses and conditions similar to that of the general population. These circumstances result in people with ID dying from typical life-ending conditions, and thus, they require similar end-of-life services such as palliative and hospice care. Although there are notable barriers to hospice for all, people with ID face additional challenges in accessing the benefits of these services. This article presents a review of the literature on these issues, underscoring the multiple challenges and the importance of a more collaborative approach between hospice and palliative care workers with people with ID, their families, and other important stakeholders.

scholarly journals Arts Engagement Facilitated by Artists With Individuals With Life-limiting Illness: An Integrative Review of the Literature

2021 ◽  
Author(s):  
Jennifer Baxley Lee ◽  
Sonja McIlfatrick ◽  
Lisa Fitzpatrick
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Visual Arts ◽  
Well Being ◽  
Integrative Review ◽  
Future Research ◽  
Review Of The Literature ◽  
Knowledge Gaps ◽  
Arts Engagement ◽  
Eol Care

Abstract BackgroundLiving with life-limiting illness significantly impacts quality of life. A growing body of evidence suggests that arts engagement, facilitated by artists, promotes a sense of well-being and connection with others. However, much of the evidence is drawn from the use of the arts in broad health contexts or from creative arts therapies’ literature. This review aimed to systematically identify and synthesize existing evidence in order to reveal key knowledge gaps and to inform future research and practice. MethodsAn integrative review of the literature was conducted using a pre-defined, comprehensive search strategy. Databases searched included: PubMed inclusive of MEDLINE, CINAHL, PsycINFO, Scopus, Web of Science, and Embase. Search terms included variations on visual arts, literary arts, and performing arts; service users or patients; and palliative care or end-of-life care. The quality and rigor of articles were scored using Hawker and colleagues’ tool designed to systematically appraise disparate studies. Synthesis was conducted using a constant comparison method as outlined in the integrative review framework.ResultsEight reviewed studies explored literary, performing, and visual arts engagement in residential hospice, day hospice, and hospitals in England, the United States, France, and Canada. Seven of eight studies used qualitative methods and one study engaged in mixed methods. Patient perspectives were most commonly represented followed by health care professionals and family members. Creative writing, music, and visual art were predominant modalities whilst dance and theatre were underrepresented. Themes identified across studies associated arts engagement with 1) a sense of well-being, 2) a newly discovered, or re-framed, sense of self, 3) connection with others, 4) challenges associated with practice. ConclusionThis review synthesized current evidence and key knowledge gaps regarding artists' facilitation of arts engagement in palliative and end-of-life (EOL) care. It serves as a starting point in the consideration of next steps in standardizing professional practice and preparation for artists working in palliative and EOL care settings specifically. Recommendations for future research include exploring the value of collaboration between artists and palliative care teams when engaging with individuals living with life-limiting illness.

scholarly journals Palliative Care and Stroke: An Integrative Review of the Literature (S740)

2018 ◽  
Vol 55 (2) ◽  
pp. 678-679
Author(s):  
Kristen Overbaugh ◽  
Stephanie Molidor ◽  
Carole White ◽  
Deborah James
Keyword(s):  
Palliative Care ◽  
Integrative Review ◽  
Review Of The Literature

scholarly journals Physiotherapeutic performance in the context of palliative care: an integrative review of the literature

2021 ◽  
Vol 2 (1) ◽  
pp. 62-67
Author(s):  
Maria Carolina Falcão Carneiro de Albuquerque ◽  
Luciene Pereira Coelho de Azevedo ◽  
Bruna Rafaela Dornelas de Andrade Lima Monteiro
Keyword(s):  
Palliative Care ◽  
Integrative Review ◽  
Review Of The Literature

scholarly journals Trends in Pediatric Palliative Care Research (TPPCR) 2021; Issue #10: Commentary on Battista et al.

2021 ◽  
Author(s):  
Arun Ghoshal ◽  
- TPPCR
Keyword(s):  
Palliative Care ◽  
Young Adults ◽  
Advance Directives ◽  
Neuromuscular Disease ◽  
Adolescents And Young Adults ◽  
Integrative Review ◽  
Pediatric Palliative Care ◽  
Review Of The Literature ◽  
Care Research

This TPPCR commentary discusses the 2021 paper by Battista et al, “Advance Directives for Adolescents and Young Adults Living with Neuromuscular Disease: An Integrative Review of the Literature.” published in Journal of Hospice and Palliative Nursing.

scholarly journals Palliative Care in the Process of Human Terminality: Integrative review

10.3823/2396 ◽  
2017 ◽  
Vol 10 ◽  
Author(s):  
Emilie De Oliveira Costa ◽  
Patrícia Serpa de Souza Batista ◽  
Jessyka Cibelly Minervina da Costa Silva ◽  
Débora Rodrigues Alves de Lima ◽  
Priscilla De Freitas Farias ◽  
...  
Keyword(s):  
Palliative Care ◽  
Scientific Production ◽  
Integrative Review ◽  
Review Of The Literature ◽  
Terminal Patient ◽  
Online Journals ◽  
Health Field

Objectives: to characterize the scientific production on Palliative Care in the process of human terminality in the Health field, from 2007 to 2016. Methods: integrative review of the literature conducted in September and October 2016, available from the Virtual Health Library through the electronic databases: SciELO, LILACS and BDENF. The guiding question was: What is the characterization of the scientific production on Palliative Care in the process of the human terminality disseminated in online journals in the Health field, from 2007 to 2016? The study sample consisted of 27 publications related to the investigated topic, using the descriptors "palliative care and terminality". The analyzed data were grouped and presented in figures. Results: from the selected publications, two thematic categories emerged: Palliative care to the terminal patient with an emphasis on humanization and Assistance to the terminal patient in palliative  care. Conclusion: this review verified that the production is incipient, and that technical and humanized actions guide the practice of palliative care.  

scholarly journals Nursing diagnoses in oncology palliative care: integrative review

2019 ◽  
Vol 18 (3) ◽  
pp. 579-611
Author(s):  
Rosimere Ferreira Santana ◽  
Dayana Medeiros do Amaral Passareles ◽  
Antonia Rios Almeida
Keyword(s):  
Palliative Care ◽  
Clinical Reasoning ◽  
Web Of Science ◽  
Signs And Symptoms ◽  
Integrative Review ◽  
Review Of The Literature ◽  
Patients With Cancer ◽  
Nursing Diagnosis ◽  
Nursing Diagnoses

Objetivos: Identificar los diagnósticos de enfermería encontrados en cuidados paliativos oncológicos de acuerdo con la taxonomía de la NANDA-I.Métodos: Se trata de una revisión integrativa de la literatura en seis etapas, la búsqueda ocurrió en las bases: Medline, Scopus, Cinahl, Lilacs, Cochrane, Scielo y Web of Science, delimitado últimos 10 años, con los descriptores: "Diagnóstico de Enfermería", "Cuidados Paliativos en la fase Terminal de la Vida", "Enfermería Oncológica", en el período de Noviembre a Diciembre de 2017, fueron encontrados 120 artículos y seleccionados 10 artículos.Resultados: De acuerdo con la taxonomía de la NANDA-I se encontraron 32 diagnósticos de enfermería, demostrando la variabilidad y multiplicidad de diagnósticos identificados por enfermeros durante el control de signos y síntomas en cuidados paliativos.Conclusión: Al identificar una diversidad de diagnósticos de enfermería ocurridos en pacientes en cuidados paliativos oncológicos, se concluye que se hace necesaria la construcción de un diagnóstico de enfermería de síndrome, para optimizar el raciocinio clínico de los enfermeros en cuidados paliativos.   Objectives: To identify the nursing diagnoses found in oncological palliative care according to the NANDA-I taxonomy. Methods: It is an integrative review of the literature in six stages. The search was carried out at the following bases: Medline, Scopus, Cinahl, Lilacs, Cochrane, Scielo and Web of Science, delimited last ten years, with the descriptors: "Diagnosis of Nursing" "Palliative Care at the Terminal of Life", "Nursing Oncology", from November to December 2017, 120 articles were found and ten articles were selected. Results: According to the NANDA-I taxonomy, 32 nursing diagnoses were found, demonstrating the variability and multiplicity of diagnoses identified by nurses during the control of signs and symptoms in palliative care. Conclusion: When identifying a diversity of nursing diagnoses occurring in patients with cancer palliative care, it is concluded that it is necessary to construct a nursing diagnosis of the syndrome to optimize the clinical reasoning of nurses in palliative care. Objetivos: Identificar os diagnósticos de enfermagem encontrados em cuidados paliativos oncológicos de acordo com a taxonomia da NANDA-I.Métodos: Trata-se de uma revisão integrativa da literatura em seis etapas, a busca ocorreu nas bases: Medline, Scopus, Cinahl, Lilacs, Cochrane, Scielo e Web of Science, delimitado últimos 10 anos, com os descritores: “Diagnostico de Enfermagem”, “Cuidados Paliativos na Terminalidade da Vida”, “Enfermagem Oncológica”, no período de Novembro a Dezembro de 2017, foram encontrados 120 artigos e selecionados 10 artigos.Resultados: De acordo com a taxonomia da NANDA-I foram encontrados 32 diagnósticos de enfermagem, demonstrando a variabilidade e multiplicidade de diagnósticos identificados por enfermeiros durante o controle de sinais e sintomas em cuidados paliativos.Conclusão: Ao identificar uma diversidade de diagnósticos de enfermagem ocorrentes em pacientes em cuidados paliativos oncológicos, conclui-se que se faz necessário a construção de um diagnóstico de enfermagem de síndrome, para otimizar o raciocínio clínico dos enfermeiros em cuidados paliativos.

Sign in / Sign up

Export Citation Format

Share Document