Participant perspectives of a home-based palliative approach for people with severe multiple sclerosis: A qualitative study

Giovannetti, Ambra Mara; Borreani, Claudia; Bianchi, Elisabetta; Giordano, Andrea; Cilia, Sabina; Cipollari, Susanna; Rossi, Ilaria; Cavallaro, C; Clerici, Valentina Torri; Rossetti, E; Stefanelli, Maria Consiglia; Totis, Amadio; Pappalardo, A; Occhipinti, Gina; Veronese, Simone; Grasso, Maria Grazia; Patti, Francesco; Zaratin, Paola; Battaglia, Mario Alberto; Solari, Alessandra

doi:10.1371/journal.pone.0200532

Cited by 9 publications

(7 citation statements)

References 18 publications

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“…However, within the findings, a number of papers highlighted the complexities of managing information and addressing end-of-life care and decision-making within a family network, for example disagreements between relatives over the correct course of action, attempts to shield children from potentially distressing information, and ambiguity over the role of non-spousal carers. 6 , 23 , 24 , 26 , 37 , 40 , 61 , 62 , 66 This suggests a potential need for further research into the experience of different types of carers at end-of-life, as well as the interactions between different individuals within families and other networks providing informal care.…”

Section: Discussionmentioning

confidence: 99%

End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

et al. 2020

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Background: Family and friends are key providers of care for people living with a long-term neurological condition. Neurological conditions are a significant global contributor to disability and premature death. However, previous research suggests carers often struggle to access appropriate support at end of life. Aims: This review sought to synthesise qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with neurological conditions. Design: This was a meta-ethnographic synthesis of 38 qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with long-term neurological conditions. Data Sources: Qualitative articles published after January 2010 in English, addressing carers of people with long-term neurological conditions with regard to palliative care, end of life and/or bereavement. Papers were excluded if it was not possible to separately assess the views of carers. Quality appraisal was not undertaken, but consideration was given to research context. Results: Across the papers, five key themes were identified: the future (un)certainties in the progression of life-limiting neurological conditions; an information paradox of not receiving the right information at the right time; access to support; carers’ roles in decision making around end of life; and maintaining continuity while facing change and disruption in day-to-day living. Conclusions: Given the broad agreement on the challenges faced by carers of people living with long-term neurological conditions, future research should consider opportunities to improve information and support for this group, and the development and evaluation of practical models of service delivery.

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Section: Discussionmentioning

confidence: 99%

End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

et al. 2020

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“…also had qualitative components that were used to explore stakeholders' views and experiences of HSPC [Bajwah et al,72 Farquhar et al,75,76 Hopp et al, 93 Veron et al 187 (linked to Janssens et al 123 ), Lowther et al 100 (linked to Lowther et al 97 ), Maloney et al 132 (linked to Bakitas et al 129 ), Giovannetti et al 127 (linked to Solari et al 126 ), Talabani et al 122 (linked to Brännström et al 118 ) and Wallen et al 170 ] (see Report Supplementary Material 1,table 12). The number of patients interviewed by Wallen et al 170 was unclear.…”

Section: Quality Of the Evidencementioning

confidence: 99%

“…Four studies had HSPC models that involved service provision across multiple settings [Farquhar et al,75,76 Maloney et al 132 (linked to Bakitas et al 129 ) and Wallen et al 170 ], and another four used hospital outreach services [Bajwah et al,72 Talabani et al 122 (linked to Brännström et al 118 ), Veron et al 187 (linked to Janssens et al 123 ) and Giovannetti et al 127 (linked to Solari et al 126 )]. Only Lowther et al 100 (linked to Lowther et al 97 ) used an outpatient HSPC model, whereas Hopp et al 93 used an inpatient consult model.…”

Section: Quality Of the Evidencementioning

confidence: 99%

“…Four studies used framework analysis 72,75,76,127 and three studies used thematic analyses 130,132,171 as their analyses methods. Three studies described the use of content analysis/thematic content analysis; 100,122,187 this was unclear in Hopp et al 93 Semistructured interviews were carried out in all the studies except Slota et al 171 and Hopp et al 93 The method of data collection in Slota et al 171 was open-ended, qualitative questions on a questionnaire, whereas Hopp et al 93 involved qualitatively reviewing clinical records.…”

Section: Quality Of the Evidencementioning

confidence: 99%

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Hospital-based specialist palliative care compared with usual care for adults with advanced illness and their caregivers: a systematic review

Oluyase

Higginson

et al. 2021

Health Serv Deliv Res

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Background Most deaths still take place in hospital; cost-effective commissioning of end-of-life resources is a priority. This review provides clarity on the effectiveness of hospital-based specialist palliative care. Objectives The objectives were to assess the effectiveness and cost-effectiveness of hospital-based specialist palliative care. Population Adult patients with advanced illnesses and their unpaid caregivers. Intervention Hospital-based specialist palliative care. Comparators Inpatient or outpatient hospital care without specialist palliative care input at the point of entry to the study, or community care or hospice care provided outside the hospital setting (usual care). Primary outcomes Patient health-related quality of life and symptom burden. Data sources Six databases (The Cochrane Library, MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO and CareSearch), clinical trial registers, reference lists and systematic reviews were searched to August 2019. Review methods Two independent reviewers screened, data extracted and assessed methodological quality. Meta-analysis was carried out using RevMan (The Cochrane Collaboration, The Nordic Cochrane Centre, Copenhagen, Denmark), with separate synthesis of qualitative data. Results Forty-two randomised controlled trials involving 7779 participants (6678 patients and 1101 unpaid caregivers) were included. Diagnoses of participants were as follows: cancer, 21 studies; non-cancer, 14 studies; and mixed cancer and non-cancer, seven studies. Hospital-based specialist palliative care was offered in the following models: ward based (one study), inpatient consult (10 studies), outpatient (six studies), hospital at home or hospital outreach (five studies) and multiple settings that included hospital (20 studies). Meta-analyses demonstrated significant improvement favouring hospital-based specialist palliative care over usual care in patient health-related quality of life (10 studies, standardised mean difference 0.26, 95% confidence interval 0.15 to 0.37; I 2 = 3%) and patient satisfaction with care (two studies, standardised mean difference 0.36, 95% confidence interval 0.14 to 0.57; I 2 = 0%), a significant reduction in patient symptom burden (six studies, standardised mean difference –0.26, 95% confidence interval –0.41 to –0.12; I 2 = 0%) and patient depression (eight studies, standardised mean difference –0.22, 95% confidence interval –0.34 to –0.10; I 2 = 0%), and a significant increase in the chances of patients dying in their preferred place (measured by number of patients with home death) (seven studies, odds ratio 1.63, 95% confidence interval 1.23 to 2.16; I 2 = 0%). There were non-significant improvements in pain (four studies, standardised mean difference –0.16, 95% confidence interval –0.33 to 0.01; I 2 = 0%) and patient anxiety (five studies, mean difference –0.63, 95% confidence interval –2.22 to 0.96; I 2 = 76%). Hospital-based specialist palliative care showed no evidence of causing serious harm. The evidence on mortality/survival and cost-effectiveness was inconclusive. Qualitative studies (10 studies, 322 participants) suggested that hospital-based specialist palliative care was beneficial as it ensured personalised and holistic care for patients and their families, while also fostering open communication, shared decision-making and respectful and compassionate care. Limitation In almost half of the included randomised controlled trials, there was palliative care involvement in the control group. Conclusions Hospital-based specialist palliative care may offer benefits for person-centred outcomes including health-related quality of life, symptom burden, patient depression and satisfaction with care, while also increasing the chances of patients dying in their preferred place (measured by home death) with little evidence of harm. Future work More studies are needed of populations with non-malignant diseases, different models of hospital-based specialist palliative care, and cost-effectiveness. Study registration This study is registered as PROSPERO CRD42017083205. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 12. See the NIHR Journals Library website for further project information.

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“…Ten publications on PC interventions were found: two described a qualitative study assessing the experiences of nine MS patients participating in a PC daycare programme 29,30 and eight described three RCTs. [18][19][20][31][32][33][34][35] The characteristics of the RCTs, and participants, are reported in Table 1.…”

Section: General and Specialist Palliative Care (Clinical Questions 1mentioning

confidence: 99%

EAN guideline on palliative care of people with severe, progressive multiple sclerosis

Solari

Giordano

Sastre‐Garriga

et al. 2020

Euro J of Neurology

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Participant perspectives of a home-based palliative approach for people with severe multiple sclerosis: A qualitative study

Cited by 9 publications

References 18 publications

End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

Hospital-based specialist palliative care compared with usual care for adults with advanced illness and their caregivers: a systematic review

EAN guideline on palliative care of people with severe, progressive multiple sclerosis

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