Human relationships in patients’ end-of-life: a qualitative study in a hospice ward

Monaco, Marika Lo; Bocchio, Raffaella Mallaci; Natoli, G; Scibetta, Salvatore; Bongiorno, Teresa; Argano, Christiano; Corrao, Salvatore

doi:10.1007/s11739-019-02254-6

Cited by 6 publications

(4 citation statements)

References 13 publications

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“…Member checking was performed and all the participants agreed with the data analysis. The analysis did not include the first pilot interview (Lo Monaco et al, 2020).…”

Section: Discussionmentioning

confidence: 99%

The lived experience of mothers living with fibromyalgia syndrome: A phenomenological inquiry

Lo Monaco,

Alblooshi,

Mallaci Bocchio

et al. 2024

Musculoskeletal Care

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IntroductionFibromyalgia syndrome (FMS) is a complex chronic pain condition that negatively impacts women's daily lives, particularly their roles as mothers and wives. A phenomenological qualitative study was conducted to explore the lived experiences of motherhood and daily life among women diagnosed with fibromyalgia.MethodsA sample of 10 women affected by FMS was recruited between January and February 2020. Participants were interviewed in a face‐to‐face, in‐depth interview using a semi‐structured interview guide. Data were collected until saturation, and Colaizzi's method was used to analyse data.ResultsThis qualitative analysis identified five themes: A trauma preceding diagnosis, Pervasive feelings of misunderstanding, A struggle to maintain strength among limitations, Challenges in fulfilling maternal roles, and Persistent sexual discomfort. The latter two themes emerged as the most prominent.ConclusionThese findings highlight the significant impact of fibromyalgia on women's family lives and suggest the need for a more comprehensive care programme.

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“…Member checking was performed and all the participants agreed with the data analysis. The analysis did not include the first pilot interview (Lo Monaco et al, 2020).…”

Section: Discussionmentioning

confidence: 99%

The lived experience of mothers living with fibromyalgia syndrome: A phenomenological inquiry

Lo Monaco,

Alblooshi,

Mallaci Bocchio

et al. 2024

Musculoskeletal Care

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“…O estudo de Monaco et al 25 , que teve como objetivo explorar as necessidades internas de pacientes em cuidados paliativos que viviam em um hospice, verificou que as relações humanas representaram uma chave fundamental no final da vida dos pacientes, especialmente os relacionamentos familiares. Embora os pacientes tivessem tudo no hospice, seus principais pensamentos estavam sempre voltados para as relações humanas 25 . No presente estudo, a maioria dos pacientes não relatou dificuldade na categoria relacionamentos familiares (66,67%).…”

Section: Discussionunclassified

Utilização da Classificação Internacional de Funcionalidade, Incapacidade e Saúde em Pacientes com Câncer Avançado em Cuidados Paliativos

Carvalho

Lucena

Portela

2023

Rev. Bras. Cancerol.

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Introdução: Os princípios e diretrizes que regem os cuidados paliativos afirmam que é imprescindível a avaliação abrangente do paciente e que, além disso, é importante perceber o indivíduo em todas as suas dimensões. Corroborando esses princípios, a Classificação Internacional de Funcionalidade, Incapacidade e Saúde (CIF) é um instrumento que possibilita uma abordagem biopsicossocial. Objetivo: Avaliar a funcionalidade, os sintomas e os aspectos sociais e ambientais de pacientes oncológicos sob cuidados paliativos a partir de um checklist baseado na CIF. Método: Estudo quantitativo, observacional e transversal. Um checklist baseado na CIF com 14 categorias foi desenvolvido pelos pesquisadores previamente tendo como referência os principais instrumentos de avaliação comumente utilizados em cuidados paliativos. Pacientes internados em uma enfermaria de cuidados paliativos, diagnosticados com câncer e com escores de PPS (Palliative Performace Scale) igual ou superior a 30% foram submetidos à avaliação a partir do checklist baseado na CIF. Resultados: Participaram do estudo 21 pacientes com diferentes diagnósticos de câncer. Mais de 50% dos pacientes relataram dificuldade ligeira, moderada, grave ou completa em sete categorias do componente atividade e participação. No componente funções do corpo, mais de 50% dos pacientes relataram deficiência ligeira, moderada, grave ou completa em duas categorias. Conclusão: O checklist baseado na CIF pode proporcionar uma avaliação que considera as diferentes dimensões de saúde, sob um olhar físico, biológico e psicossocial.

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“…Several studies [ 22 ] showed that disability was not only declining in people’s ability to live but also amplified an individual’s fear of death. Extra care and financial burden on families due to disability can also deepen depression and other negative emotions among the elderly [ 22 , 23 ], which are important risk factors for occurring adverse events. Therefore, many people are afraid of living with disability, especially the disabled for a long time pre-death, rather than death itself.…”

Section: Discussionmentioning

confidence: 99%

Disability and the risk of subsequent mortality in elderly: a 12-year longitudinal population-based study

Yang

Liu

et al. 2021

BMC Geriatr

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Background Assessment the impact of disability on mortality among the elderly is vital to healthy ageing. The present study aimed to assess the long-term influence of disability on death in the elderly based on a longitudinal study. Method This study used the Chinese Longitudinal Healthy Longevity Study (CLHLS) data from 2002 to 2014, including 13,666 participants aged 65 years and older in analyses. The Katz ADL index was used to assess disability status and levels. Cumulative mortality rates were estimated by the Kaplan-Meier method. Cox proportional hazards models were conducted to estimate associations between disability and all-cause mortality for overall participants, two age groups as well as specific chronic disease groups. All reported results were adjusted by survey weights to account for the complex survey design. Results During the 12-year follow-up, the death density was 6.01 per 100 person-years. The 3-years’ cumulative mortality rate of nondisabled elderly was 11.9% (95%CI: 10.9, 12.9%). As the level of disability increased, the cumulative mortality rate was from 28.1% (95%CI: 23.0, 33.1%) to 77.6% (95%CI: 63.8, 91.4%). Compared with non-disabled elderly, the multiple-adjusted hazard ratio of death due to disability was 1.68 (95% CI: 1.48, 1.90). The hazard ratios varied from 1.44 (95%CI: 1.23, 1.67) to 4.45 (95%CI: 2.69, 7.38) after classifying the disability levels. The hazard ratios of death in the young-old group (65–79 years) were higher than the old-old group (80 years and over) in both level B (HR = 1.58, 95%CI: 1.25, 2.00 vs. HR = 1.22, 95%CI: 1.06, 1.39, P = 0.029) and level G (HR = 24.09, 95%CI: 10.83, 53.60 vs. HR = 2.56, 95%CI: 1.75, 3.74, P < 0.001). For patients with hypertension, diabetes, heart disease, cerebrovascular disease as well as dementia, disability increases their relative risk of mortality by 1.64 (95%CI: 1.40, 1.93), 2.85 (95%CI: 1.46, 5.58), 1.45 (95%CI: 1.02, 2.05), 2.13 (95%CI: 1.54, 2.93) and 3.56 (95%CI: 1.22, 10.38) times, respectively. Conclusions Disability increases the risk of all-cause death in the elderly, especially those with chronic diseases and the young-old group. Further studies are needed to better understand how to effectively prevent disability in the older population.

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Human relationships in patients’ end-of-life: a qualitative study in a hospice ward

Cited by 6 publications

References 13 publications

The lived experience of mothers living with fibromyalgia syndrome: A phenomenological inquiry

The lived experience of mothers living with fibromyalgia syndrome: A phenomenological inquiry

Utilização da Classificação Internacional de Funcionalidade, Incapacidade e Saúde em Pacientes com Câncer Avançado em Cuidados Paliativos

Disability and the risk of subsequent mortality in elderly: a 12-year longitudinal population-based study

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