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1.
Am J Hosp Palliat Care ; 36(9): 815-819, 2019 Sep.
Article En | MEDLINE | ID: mdl-30754984

BACKGROUND: Oral problems are frequent in palliative care and can cause disabling symptoms such as orofacial pain, dysgeusia, and xerostomia. Even if oral care is an essential aspect of nursing, it is often not considered as a priority, especially when various complex patients' needs have to be managed. OBJECTIVE: The aim of this study was to describe oral conditions and evaluate the impact of standard oral care on symptom control and patient's perceived comfort in a sample of terminally ill patients. METHOD: A prospective cohort study was carried out among 415 patients who were admitted to hospice. Patients were recruited before undergoing standard assisted procedure for oral hygiene care. Oral cavity condition, symptoms, and comfort were assessed at the recruitment (T0) and after 3 days (T2). RESULTS: Seventy-five eligible patients were recruited. The Oral Assessment Guide score was significantly decreased after oral standard care (P value <.0001). The average time spent by nursing staff for oral hygiene care was 5.3 minutes. Dysgeusia and xerostomia were significantly decreased after oral standard care (P = .02 and P = .03). Patients reported a high level of comfort (86.6%) after the procedures for oral hygiene care. CONCLUSION: Patients admitted to hospice had frequent alterations in oral cavity with partial loss of its functions that can compromise their quality of life. Standard procedures for oral hygiene care are simple and fast to perform, and they may improve oral cavity conditions, symptoms control, and patients' comfort.


Hospice Care/organization & administration , Oral Hygiene/nursing , Aged , Aged, 80 and over , Dysgeusia/prevention & control , Female , Humans , Male , Middle Aged , Mouth Diseases/prevention & control , Palliative Care/organization & administration , Prospective Studies , Quality of Life , Time Factors
2.
PLoS One ; 13(7): e0200532, 2018.
Article En | MEDLINE | ID: mdl-30001423

BACKGROUND: We performed a qualitative study to investigate the experiences of participants in a multicentre randomized controlled trial on a home-based palliative approach (HPA) for adults with severe multiple sclerosis (MS) and their caregivers. Our aim was to explore the strengths and challenges of the intervention, and circumstances that may have influenced its efficacy. METHODS: Participants to the qualitative study were the patients, their caregivers, patient referring physicians, and the teams who delivered the HPA intervention. We performed semi-structured one-on-one interviews with 12 patients and 15 informal caregivers chosen using a maximum variation strategy, two focus group meetings with patient referring physicians (4 participants each), and one with the HPA teams (9 participants). RESULTS: From data analysis (framework method) 38 sub-categories emerged, which were grouped into 10 categories and 3 themes: 'expectations,' 'met and unmet needs', and 'barriers'. Intervention benefits were improved control of symptoms and reduced sense of isolation of the patient-caregiver dyads. Limitations were: factors related to experimental design (difficulty of dyads in identifying examiner and team roles, additional burden for caregivers); team issues (insufficient team building /supervision, competing priorities); limitations of the intervention itself (insufficient length, lack of rehabilitation input); and external factors (resource limitations, under-responsive services/professionals). The referring physician focus groups provided little experiential data. CONCLUSIONS: The HPA reduced patient symptoms and sense of isolation in patients and caregivers. The indirect role of the HPA teams, and insufficient length of the intervention were key limitations. The experimental design imposed additional burdens on the dyads. Key barriers were the paucity of available services, the demanding administrative procedures, and lack of networking facilities. These findings suggest that two major requirements are necessary for home palliative care to be effective in this patient population: HPA teams well-connected with MS rehabilitation services, and care delivered over the long-term, with variable intensity. TRIAL REGISTRATION: Current Controlled Trials ISRCTN73082124 (Registered 19/06/2014).


Home Care Services , Multiple Sclerosis/therapy , Palliative Care , Severity of Illness Index , Adult , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Patients
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