5 results on '"Palmisano, Lucia"'
Search Results
2. Unmet needs of people with severe multiple sclerosis and their carers: qualitative findings for a home-based intervention.
- Author
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Borreani C, Bianchi E, Pietrolongo E, Rossi I, Cilia S, Giuntoli M, Giordano A, Confalonieri P, Lugaresi A, Patti F, Grasso MG, de Carvalho LL, Palmisano L, Zaratin P, Battaglia MA, and Solari A
- Subjects
- Adult, Aged, Aged, 80 and over, Caregivers psychology, Female, Humans, Male, Middle Aged, Multiple Sclerosis psychology, Palliative Care psychology, Palliative Care statistics & numerical data, Sexuality psychology, Young Adult, Caregivers statistics & numerical data, Home Care Services statistics & numerical data, Multiple Sclerosis therapy, Needs Assessment
- Abstract
Background: Few data on services for people with severe multiple sclerosis (MS) are available. The Palliative Network for Severely Affected Adults with MS in Italy (PeNSAMI) developed a home palliative care program for MS patients and carers, preceded by a literature review and qualitative study (here reported)., Objective: To identify unmet needs of people with severe MS living at home by qualitative research involving key stakeholders, and theorize broad areas of intervention to meet those needs., Method: Data were collected from: at least 10 personal interviews with adults with severe MS (primary/secondary progressive, EDSS≥8.0); three focus group meetings (FGs) of carers of people with severe MS; and two FGs of health professionals (HPs). Grounded theory guided the analysis of interview and FG transcripts, from which the areas of intervention were theorized., Results: Between October 2012 and May 2013, 22 MS patients, 30 carers and 18 HPs participated. Forty-eight needs themes were identified, grouped into 14 categories and four domains. Seven, highly interdependent intervention areas were theorized. Patients had difficulties expressing needs; experiences of burden and loneliness were prominent, chiefly in dysfunctional, less affluent families, and among parent carers. Needs differed across Italy with requirements for information and access to services highest in the South. All participants voiced a strong need for qualified personnel and care coordination in day-to-day home care. Personal hygiene emerged as crucial, as did the need for a supportive network and preservation of patient/carer roles within family and community., Conclusions: Unmet needs transcended medical issues and embraced organizational and psychosocial themes, as well as health policies. The high interdependence of the seven intervention areas theorized is in line with the multifaceted approach of palliative care. At variance with typical palliative contexts, coping with disability rather than end-of-life was a major concern of patients and carers.
- Published
- 2014
- Full Text
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3. Randomized controlled trial of a home-based palliative approach for people with severe multiple sclerosis
- Author
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Solari, Alessandra, Giordano, Andrea, Patti, Francesco, Grasso, Maria Grazia, Confalonieri, Paolo, Palmisano, Lucia, Ponzio, Michela, Borreani, Claudia, Rosato, Rosalba, Veronese, Simone, Zaratin, Paola, and Battaglia, Mario Alberto
- Subjects
Multiple sclerosis ,caregivers ,symptom burden ,palliative care ,quality of life ,randomized controlled trial - Published
- 2017
4. Randomized controlled trial of a home-based palliative approach for people with severe multiple sclerosis.
- Author
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Solari, Alessandra, Giordano, Andrea, Patti, Francesco, Grasso, Maria Grazia, Confalonieri, Paolo, Palmisano, Lucia, Ponzio, Michela, Borreani, Claudia, Rosato, Rosalba, Veronese, Simone, Zaratin, Paola, and Battaglia, Mario Alberto
- Subjects
PALLIATIVE treatment ,MULTIPLE sclerosis ,HEALTH outcome assessment ,QUALITY of life ,DYADS ,PATIENTS - Abstract
Background: Evidence on the efficacy of palliative care in persons with severe multiple sclerosis (MS) is scarce. Objective: To assess the efficacy of a home-based palliative approach (HPA) for adults with severe MS and their carers. Methods: Adults with severe MS-carer dyads were assigned (2:1 ratio) to either HPA or usual care (UC). At each center, a multi-professional team delivered the 6-month intervention. A blind examiner assessed dyads at baseline, 3 months, and 6 months. Primary outcome measures were Palliative care Outcome Scale-Symptoms-MS (POS-S-MS) and Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW, not assessed in severely cognitively compromised patients). Results: Of 78 dyads randomized, 76 (50 HPA, 26 UC) were analyzed. Symptom burden (POS-S-MS) significantly reduced in HPA group compared to UC (p = 0.047). Effect size was 0.20 at 3 months and 0.32 at 6 months, and statistical significance was borderline in per-protocol analysis (p = 0.062). Changes in SEIQoL-DW index did not differ in the two groups, as changes in secondary patient and carer outcomes. Conclusion: HPA slightly reduced symptoms burden. We found no evidence of HPA efficacy on patient quality of life and on secondary outcomes. [ABSTRACT FROM AUTHOR]
- Published
- 2018
- Full Text
- View/download PDF
5. Low quality of life and psychological wellbeing contrast with moderate perceived burden in carers of people with severe multiple sclerosis
- Author
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Giordano, A, Cimino, V, Campanella, A, Morone, G, Fusco, A, Farinotti, Palmisano, L, Confalonieri, P, Lugaresi, A, Grasso, Mg, Ponzio, M, Veronese, S, Patti, Francesco, Solari, A, on behalf of the, Pensami, Project, Giordano, Andrea, Cimino, Vincenzo, Campanella, Angela, Morone, Giovanni, Fusco, Augusto, Farinotti, Mariangela, Palmisano, Lucia, Confalonieri, Paolo, Lugaresi, Alessandra, Grasso, Maria Grazia, Ponzio, Michela, Veronese, Simone, Patti, Francesco, Solari, Alessandra, and PeNSAMI project
- Subjects
Male ,Palliative care ,health care facilities, manpower, and services ,Hospital Anxiety and Depression Scale ,Severity of Illness Index ,Outcome measure ,0302 clinical medicine ,Primary progressive multiple sclerosis ,Cost of Illness ,Surveys and Questionnaires ,Medicine ,030212 general & internal medicine ,Depression (differential diagnoses) ,health care economics and organizations ,Aged, 80 and over ,Secondary progressive multiple sclerosis ,Illness burden ,Middle Aged ,humanities ,Caregivers ,Neurology ,Spouse ,behavior and behavior mechanisms ,Anxiety ,Secondary progressive multiple sclerosi ,Female ,medicine.symptom ,Clinical psychology ,Adult ,Employment ,Quality of life ,Multiple Sclerosis ,03 medical and health sciences ,Young Adult ,Quality of life (healthcare) ,Humans ,Socioeconomic status ,Aged ,Psychiatric Status Rating Scales ,business.industry ,social sciences ,Caregiver ,Mood ,Cross-Sectional Studies ,Primary progressive multiple sclerosi ,Socioeconomic Factors ,Multivariate Analysis ,Linear Models ,Perception ,Neurology (clinical) ,business ,030217 neurology & neurosurgery - Abstract
Background: Few studies have investigated wellbeing and burden in carers of peoplewith severe multiple sclerosis (PwSMS). Objectives: To assess the impact of providing care to PwSMS, and explore variables associated with perceived carer burden. Methods: Cross-sectional assessment of health-related quality of life (HRQOL), mood symptoms (Hospital Anxiety and Depression Scale, HADS), and perceived carer burden (22-item Zarit Burden Interview, ZBI) in 78 PwSMS carers. Multivariate linear regression explored carer and PwSMS factors associated with ZBI score. Results: Carers (61%women, mean age 60.2 years, 53% spouse/partner) had significantly lower HRQOL (all SF-36 scales) than the norm, especially for Role Limitation Emotional/Physical, and Emotional Wellbeing. Sixty-eight percent had pathologic (≥8) Anxiety, and 44% had pathologic Depression scores on HADS. Nonetheless, perceived carer burdenwas only moderate (mean ZBI score 35.6, SD 14.3). High carer anxiety (p < 0.0001), low household income (p= 0.009), and living with the PwSMS (p= 0.02) were independent predictors of perceived burden. Conclusions: Caring for PwSMS has a detrimental effect on HRQOL and psychological wellbeing. High carer anxiety, loweconomic status, and living in predict higher burden. It is crucial to recognize PwSMS carers as full partners in the provision of care, and to respond to their own needs.
- Published
- 2016
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