Participant perspectives of a home-based palliative approach for people with severe multiple sclerosis: A qualitative study
| Autor: | Giovannetti, A. M., Borreani, C., Bianchi, E., Giordano, A., Cilia, S., Cipollari, S., Rossi, I., Cavallaro, C., Clerici, V. T., Rossetti, E., Stefanelli, M. C., Totis, A., Pappalardo, A., Occhipinti, G., Confalonieri, P., Veronese, S., Grasso, M. G., Patti, F., Zaratin, P., Battaglia, M. A., Solari, A., Amadeo, R., Ponzio, M., Lugaresi, A., Martino, G., Palmisano, L., Pagano, E., Radice, D., Farinotti, M., Ferrari, G., Rosato, R., Oliver, D. J., Pucci, E., Tesio, L., Pietrolongo, E., Giuntoli, M., Fittipaldo, A., Cugno, C., Causarano, R., Morino, P., Campanella, A., Mantegazza, R., Tucci, L., Ippoliti, F., Morone, G., Fusco, A., Cascio, V., Cimino, V., Zagari, F., Lopes de Carvalho, M. L., Motta, R., Onofrj, M., Da Col, D., Casale, G. |
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| Jazyk: | angličtina |
| Rok vydání: | 2018 |
| Předmět: |
Male
Genetics and Molecular Biology (all) Palliative care Medical Doctors Psychologists Team Role Inventories Health Care Providers medicine.medical_treatment Nurses Social Sciences lcsh:Medicine Referring Physician Severity of Illness Index Biochemistry law.invention 0302 clinical medicine Sociology Randomized controlled trial Biochemistry Genetics and Molecular Biology (all) Agricultural and Biological Sciences (all) law Medicine and Health Sciences Medical Personnel 030212 general & internal medicine Human Families lcsh:Science Aged 80 and over Multidisciplinary Rehabilitation Palliative Care Neurodegenerative Diseases Qualitative Studies Middle Aged Home Care Services Professions Neurology Research Design Female Psychology Research Article Adult Multiple Sclerosis Drug Research and Development Patients Immunology Research and Analysis Methods Autoimmune Diseases 03 medical and health sciences Nursing Physicians Intervention (counseling) medicine Humans Clinical Trials Aged Pharmacology lcsh:R Biology and Life Sciences Demyelinating Disorders Focus group Randomized Controlled Trials Health Care People and Places Population Groupings Clinical Immunology lcsh:Q Clinical Medicine 030217 neurology & neurosurgery Qualitative research |
| Zdroj: | PLoS ONE, Vol 13, Iss 7, p e0200532 (2018) PLoS ONE |
| Popis: | 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). |
| Databáze: | OpenAIRE |
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