Home-based palliative care: A systematic literature review of the self-reported unmet needs of patients and carers

Ventura, Adriana D; Burney, Susan; Brooker, Joanne; Fletcher, Jane; Ricciardelli, Lina A.

doi:10.1177/0269216313511141

Cited by 156 publications

(168 citation statements)

References 34 publications

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“…In addition, improvement seemed to be needed for the MT dimension, including symptom relief and medical care, and SC dimension, including meaningfulness, continuity and planning, and cooperation of care services. Previous research supports the need for improvement in similar care areas for people living at home [34, 71–73], apart from the care area meaningfulness. Help living a meaningful life have been described to include maintenance of self-worth, being with people who are important for patients, participate in meaningful activities and having hope for the future [14].…”

Section: Discussionmentioning

confidence: 88%

Patients’ perceptions of palliative care quality in hospice inpatient care, hospice day care, palliative units in nursing homes, and home care: a cross-sectional study

Sandsdalen

Grøndahl

Hov³

et al. 2016

BMC Palliat Care

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BackgroundPatients’ perceptions of care quality within and across settings are important for the further development of palliative care. The aim was to investigate patients’ perceptions of palliative care quality within settings, including perceptions of care received and their subjective importance, and contrast palliative care quality across settings.MethodA cross-sectional study including 191 patients in late palliative phase (73 % response rate) admitted to hospice inpatient care, hospice day care, palliative units in nursing homes, and home care was conducted, using the Quality from the Patients’ Perspective instrument-palliative care (QPP-PC). QPP-PC comprises four dimensions and 12 factors; “medical–technical competence” (MT) (2 factors), “physical–technical conditions” (PT) (one factor), “identity–orientation approach” (ID) (4 factors), “sociocultural atmosphere” (SC) (5 factors), and three single items (S); medical care, personal hygiene and atmosphere. Data were analysed using paired-samples t-test and analysis of covariance while controlling for differences in patient characteristics.ResultsPatients’ perceptions of care received within settings showed high scores for the factors and single items “honesty” (ID) and “atmosphere” (S) in all settings and low scores for “exhaustion” (MT) in three out of four settings. Patients’ perceptions of importance scored high for “medical care” (S), “honesty” (ID), “respect and empathy” (ID) and “atmosphere” (S) in all settings. No aspects of care scored low in all settings. Importance scored higher than perceptions of care received, in particular for receiving information. Patients’ perceptions of care across settings differed, with highest scores in hospice inpatient care for the dimensions; ID, SC, and “medical care” (S), the SC and “atmosphere” (S) for hospice day care, and “medical care” (S) for palliative units in nursing homes. There were no differences in subjective importance across settings.ConclusionStrengths of services related to identity–orientation approach and a pleasant and safe atmosphere. Key areas for improvement related to receiving information. Perceptions of subjective importance did not differ across settings, but perceptions of care received scored higher in more care areas for hospice inpatient care, than in other settings. Further studies are needed to support these findings, to investigate why perceptions of care differ across settings and to highlight what can be learned from settings receiving high scores.

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Section: Discussionmentioning

confidence: 88%

Patients’ perceptions of palliative care quality in hospice inpatient care, hospice day care, palliative units in nursing homes, and home care: a cross-sectional study

Sandsdalen

Grøndahl

Hov³

et al. 2016

BMC Palliat Care

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“…By being present and by actively engaging in caregiver support, the multidisciplinary team can make a significant difference in caregivers' lives (Northfield and Nebauer, 2010). Engaging in open and personalised communication (Given et al, 2001;Northfield and Nebauer, 2010), considering the spectrum of family members' needs as they develop and change (Ventura et al, 2014), and carefully evaluating caregiver experiences are vital steps to ensure that interventions to tackle increasing burden are provided in a timely manner. Health professionals can encourage family carers to request assistance from 'support persons' such as other family members or friends whenever they feel overwhelmed in their roles (Given et al, 2001).…”

Section: Discussionmentioning

confidence: 99%

Effects of patient and personal demographic, clinical and psychosocial characteristics on the burden of family members caring for patients with advanced cancer in Greece

Govina¹,

Kotronoulas²,

Mystakidou³

et al. 2015

European Journal of Oncology Nursing

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“…No entanto, à semelhança de outros estudos (Ventura, Burney, Brooker, Fletcher, & Ricciardelli, 2014), quando avaliada a satisfação dessas mesmas necessidades pelos profissionais de saúde, verificou-se que os familiares de doentes no domicílio reportam uma menor satisfação das necessidades psicossociais (comunicação, esperança, ajuda nos cuidados) por comparação com as necessidades físicas do doente que, na maioria das vezes, são satisfeitas. Importa sublinhar que, particularmente no contexto domiciliário, a família do doente tende a ser vista como parceira na prestação de cuidados ao doente (Grande et al, 2009).…”

Section: Discussão Dos Resultadosunclassified

Cuidados paliativos oncológicos em contexto de internamento e domiciliário: Necessidades, morbilidade psicológica e luto antecipatório nos familiares do doente terminal e impacto na qualidade de vida familiar

Areia

Major

Gaspar³

et al. 2017

Psychologica

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A navegação consulta e descarregamento dos títulos inseridos nas Bibliotecas Digitais UC Digitalis, UC Pombalina e UC Impactum, pressupõem a aceitação plena e sem reservas dos Termos e Condições de Uso destas Bibliotecas Digitais, disponíveis em https://digitalis.uc.pt/pt-pt/termos.Conforme exposto nos referidos Termos e Condições de Uso, o descarregamento de títulos de acesso restrito requer uma licença válida de autorização devendo o utilizador aceder ao(s) documento(s) a partir de um endereço de IP da instituição detentora da supramencionada licença.Ao utilizador é apenas permitido o descarregamento para uso pessoal, pelo que o emprego do(s) título(s) descarregado(s) para outro fim, designadamente comercial, carece de autorização do respetivo autor ou editor da obra. Na medida em que todas as obras da UC Digitalis se encontram protegidas pelo Código do Direito de Autor e Direitos Conexos e demais legislação aplicável, toda a cópia, parcial ou total, deste documento, nos casos em que é legalmente admitida, deverá conter ou fazer-se acompanhar por este aviso. Palliative oncology in hospice and home care: Needs, psychological morbidity and anticipatory grief on patient's relatives and impact on family quality of life Cuidados paliativos oncológicos em contexto de internamento AbstractTerminal cancer has a profound impact on family and its' elements. Therefore, palliative care foresees a family support. However, there are not many studies that aim to determine the family needs within palliative care. The present study aims to determine family needs, psychological morbidity and anticipatory grief of terminal patients' relatives, distinguishing two care contexts (hospice and home care), and examine the influence of unmet needs, anticipatory grief, psychological morbidity and care setting on the perceived family quality of life. For such, an exploratory study was conducted with a sample of 40 terminal cancer patients' relatives in palliative care. It was found that psychosocial needs are lesser satisfied in 1 Bolseira de Doutoramento FCT: SFRH/BD/86178/2012,

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Home-based palliative care: A systematic literature review of the self-reported unmet needs of patients and carers

Cited by 156 publications

References 34 publications

Patients’ perceptions of palliative care quality in hospice inpatient care, hospice day care, palliative units in nursing homes, and home care: a cross-sectional study

Patients’ perceptions of palliative care quality in hospice inpatient care, hospice day care, palliative units in nursing homes, and home care: a cross-sectional study

Effects of patient and personal demographic, clinical and psychosocial characteristics on the burden of family members caring for patients with advanced cancer in Greece

Cuidados paliativos oncológicos em contexto de internamento e domiciliário: Necessidades, morbilidade psicológica e luto antecipatório nos familiares do doente terminal e impacto na qualidade de vida familiar

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