Main Article Content
caregiver needs, caregiver role, caregiver perception, qualitative assessment, caregiver educational programs
Background and aim of the work. In the advanced stages of Parkinson’s Disease, patients need complex care and support, especially at home, where they often receive assistance by familial caregivers. However, caregivers may be or feel unable to cope with their role and, despite the needs of caregivers are often assessed in the literature, their opinions and feelings about these needs are not widely explored yet. This study aimed at exploring the opinions and feelings about their educational needs and role of familial caregivers of Parkinson’s Disease patients. Methods. A qualitative study was conducted from October to December 2017 in a polyclinic of central Italy. Fourteen caregivers voluntarily participated in the study; semi-structured face-to-face interviews were conducted, and audio recorded until data saturation. Two investigators reviewed the transcribed notes, created Meaning Units, Sub-categories and finally the Categories with emerged themes. Results. The analysis of the 14 interviews generated three categories: supportiveness of healthcare educational programs; sense of inability to manage caregiver tasks; need for interaction with other familial caregivers. Conclusions. The caregivers declared their belief that healthcare educational courses can be useful in helping them live and understand the caregiving tasks and expressed their need to share their experiences with other caregivers. In fact, they often they felt abandoned and poorly trained for the patient’s management at the home. The clinical practice should allow healthcare professionals to meet the training and emotional needs of caregivers and create a trust relationship with them to make caregivers skilled in caring for patients.
2. Adler R, Mehta R. Catalyzing technology to support family caregiving. National Alliance for Caregiving 2014: 1-18.
3. Marabotto M, Raspo S, Gerardo B, Cena P, Bonetto M, Cappa G. [Prendersi cura del caregiver: valutazione del grado di soddisfacimento, dello stress]. Recenti Prog Med 2011; 102: 156-61.
4. Duggleby W, Williams A, Ghosh S, et al. Factors influencing changes in health related quality of life of caregivers of persons with multiple chronic conditions. Health Qual Life Outcomes 2016; 14: 81-9.
5. Mosley PE, Moodie R, Dissanayaka N. Caregiver Burden in Parkinson Disease: A Critical Review of Recent Literature. J Geriatr Psychiatry Neurol 2017; 30: 235-52.
6. Parkinson B, Lawrence M, McElhinney E, Booth J. Mindfulness for people with long-term conditions and their family caregivers: A systematic review. Complement Ther Clin Pract 2019; 34: 76-86.
7. Padovani C, Lopes MCL, Higahashi IH, Pelloso SM, Paiano M, Christophoro R. Being caregiver of people with Parkinson's Disease: experienced situations. Rev Bras Enferm 2018; 71: 2628-34.
8. Whitlatch CJ, Orsulic-Jeras S. Meeting the Informational, Educational, and Psychosocial Support Needs of Persons Living With Dementia and Their Family Caregivers. Gerontologist 2018; 58: S58-S73.
9. Lilly MB, Robinson CA, Holtzman S, Bottorff JL. Can we move beyond burden and burnout to support the health and wellness of family caregivers to persons with dementia? Evidence from British Columbia, Canada. Health Soc Care Community 2012; 20: 103-12.
10. Bhimani R. Understanding the Burden on Caregivers of People with Parkinson's: A Scoping Review of the Literature. Rehabil Res Pract 2014; 2014: 718527.
11. Cianfrocca C, Caponnetto V, Donati D, Lancia L, Tartaglini D, Di Stasio E. The effects of a multidisciplinary education course on the burden, health literacy and needs of family caregivers. Appl Nurs Res 2018; 44: 100-6.
12. Udow SJ, Hobson DE, Kleiner G, et al. Educational Needs and Considerations for a Visual Educational Tool to Discuss Parkinson's Disease. Mov Disord Clin Pract 2018; 5: 66-74.
13. Dorsey ER, Constantinescu R, Thompson JP, et al. Projected number of people with Parkinson disease in the most populous nations, 2005 through 2030. Neurology 2007; 68: 384-6.
14. Ashrafian S, Feizollahzadeh H, Rahmani A, Davoodi A. The Unmet Needs of the Family Caregivers of Patients with Cancer Visiting a Referral Hospital in Iran. Asia Pac J Oncol Nurs 2018; 5: 342-52.
15. Boersma I, Jones J, Coughlan C, et al. Palliative Care and Parkinson's Disease: Caregiver Perspectives. J Palliat Med 2017; 20: 930-8.
16. Eluvathingol JG, Portillo MC. [Needs and support networks of informal caregivers of people with Parkinson's disease: a literature review]. Rev enferm 2013; 36: 52-60.
17. Grun D, Pieri V, Vaillant M, Diederich NJ. Contributory Factors to Caregiver Burden in Parkinson Disease. J Am Med Dir Assoc 2016; 17: 626-32.
18. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007; 19: 349-57.
19. Francis JJ, Johnston M, Robertson C, et al. What is an adequate sample size? Operationalising data saturation for theory-based interview studies. Psychol Health 2010; 25: 1229-45.
20. Wray N, Markovic M, Manderson L. "Researcher saturation": the impact of data triangulation and intensive-research practices on the researcher and qualitative research process. Qual Health Res 2007; 17: 1392-402.
21. Elo S, Kyngäs H. The qualitative content analysis process. J Adv Nurs 2008; 62: 107-15.
22. Peterson K, Hahn H, Lee AJ, Madison CA, Atri A. In the Information Age, do dementia caregivers get the information they need? Semi-structured interviews to determine informal caregivers' education needs, barriers, and preferences. BMC Geriatr 2016; 16: 164-76.
23. Hsieh H-F, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res 2005; 15: 1277-88.
24. Krueger RA. Focus groups: A practical guide for applied research. Sage publications: California, united States; 2014.
25. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004; 24: 105-12.
26. Downe‐Wamboldt B. Content analysis: method, applications, and issues. Health Care Women Int 1992; 13: 313-21.
27. Kondracki NL, Wellman NS, Amundson DR. Content analysis: Review of methods and their applications in nutrition education. J Nutr Educ Behav 2002; 34: 224-30.
28. Greenwell K, Gray WK, van Wersch A, van Schaik P, Walker R. Predictors of the psychosocial impact of being a carer of people living with Parkinson's disease: a systematic review. Parkinsonism Relat Disord 2015; 21: 1-11.
29. A'Campo LE, Spliethoff-Kamminga NG, Macht M, Roos RA. Caregiver education in Parkinson's disease: formative evaluation of a standardized program in seven European countries. Qual Life Res 2010; 19: 55-64.
30. A'Campo LE, Wekking EM, Spliethoff-Kamminga NG, Le Cessie S, Roos RA. The benefits of a standardized patient education program for patients with Parkinson's disease and their caregivers. Parkinsonism Relat Disord 2010; 16: 89-95.
31. Secker D, Brown R. Cognitive behavioural therapy (CBT) for carers of patients with Parkinson’s disease: a preliminary randomised controlled trial. J Neurol Neurosurg Psychiatry 2005; 76: 491-7.
32. Simons G, Thompson SB, Smith Pasqualini MC. An innovative education programme for people with Parkinson's disease and their carers. Parkinsonism Relat Disord 2006; 12: 478-85.
33. Shah SP, Glenn GL, Hummel EM, et al. Caregiver tele-support group for Parkinson's disease: A pilot study. Geriatr Nurs 2015; 36: 207-11.
34. Katsuki F, Takeuchi H, Konishi M, et al. Pre-post changes in psychosocial functioning among relatives of patients with depressive disorders after Brief Multifamily Psychoeducation: a pilot study. BMC Psychiatry. 2011; 11: 56-62.
35. Bond KS, Jorm AF, Kitchener BA, Kelly CM, Chalmers KJ. Development of guidelines for family and non-professional helpers on assisting an older person who is developing cognitive impairment or has dementia: a Delphi expert consensus study. BMC Geriatr 2016; 16: 129-38.