Publications

  • List of references for the study

References

  1. Mateus C, Coloma J. Health economics and cost of illness in Parkinson’s disease. Eur Neurol Rev2013; 8: 6-9. http://doi.org/10.17925/ENR.2013.08.01.6
  2. European Parkinson’s Disease Association (EPDA). About Parkinson’s. http://www.epda.eu.com/about-parkinson-s/what-is-parkinson-s/ (2018) (accessed 23 June 2018).
  3. Jensen HAR, Strøbæk L, Ryd JT, Eriksen L, White ED, Flachs EM et al. Parkinson, Sygdomsbyrden i Danmark. 2016. Statens Institut for Folkesundhed, Syddansk Universitet. 
  4. Vossius C, Nilsen OB, Larsen JP. Parkinson’s disease and nursing home placement: the economic impact of the need for care. Eur J Neurol 2009; 16: 194-200. https://doi.org/10.1111/j.1468-1331.2008.02380.x
  5. Dorsey ER, Constantinescu R, Thompson JP, Biglan KM, Holloway RG, Kieburtz K, et al. Projected number of people with Parkinson disease in the most populous nations, 2005 through 2030. Neurology2007; 68: 384-386. DOI: 10.1212/01.wnl.0000247740.47667.03.
  6. Findley LJ. The economic impact of Parkinson´s disease. Parkinsonism Relat Disord 2007; 13: S8-S12. DOI: 10.1016/j.parkreldis.2007.06.003 
  7. Ministry of Health, Social Services and Equality & Spanish Parkinson Federation. The White Book of Parkinson in Spain. 2015. https://www.parkinsonasturias.org/archivos/778_987457595.pdf(accessed 14 March 2018).
  8. Prizer LP, Browner N. The Integrative Care of Parkinson’s Disease: A systematic Review. J Parkinsons Dis2012; 2: 79-86. DOI: 10.3233/JPD-2012-12075.
  9. Kang MY, Ellis-Hill C. How do people live life successfully with Parkinson’s disease?. J Clin Nurs 2015; 24: 2314-2322. DOI: 10.1111/jocn.12819.
  10. Soundy A, Stubbs B, Roskell C. The experience of Parkinson´s Disease: A systematic review and a meta-Ethnography. Sci World J2014; 1-19. http://dx.doi.org/10.1155/2014/613592
  11. Todorova A, Jenner P, Ray Chaudhuri K. Non-motor Parkinson’s: integral to motor Parkinson’s, yet often neglected. Pract Neurol 2014; 14: 310-322. http://dx.doi.org/10.1136/practneurol-2013-000741
  12. Chen JJ. Parkinson´s Disease: health-related quality of life, economic cost, and implications of early treatment. Am J Manag Care 2010; 4: S87-S93.
  13. Navarta-Sanchez MV, Senosiain Garcia JM, Riverol M, Ursua Sesma ME, Diaz de Cerio Ayesa S, Anaut Bravo S, et al. Factors influencing psychosocial adjustment and quality of life in Parkinson patients and informal caregivers. Qual Life Res 2016;25: 1959-1968. DOI: 10.1007/s11136-015-1220-3.
  14. Ambrosio L, Senosiain JM, Riverol M, Anaut S, Díaz Cerio S, Ursua ME, et al. Living with chronic illness in adults: a concept analysis. J Clin Nurs2015; 24: 2357-2367.
  15. Zaragoza A, Senosiain JM, Riverol M, Anaut S, Díaz de Cerio S, Ursua ME, et al. Elementos clave en el proceso de convivencia con la enfermedad de Parkinson de pacientes y familiares cuidadores. An Sist Sanit Navar 2014;37: 69-80.
  16. Navarta-Sánchez MV, Caparrós N, Fernández MR, Díaz De Cerio Ayesa S, Ursúa Sesma ME, Portillo MC. Core elements to understand and improve coping with Parkinson’s disease in patients and family carers: A focus group study. J Adv Nurs2017; 73: 2609-262. https://doi.org/10.1111/jan.13335
  17. Haahr A, Kirkevold M, Hall E, Østergaard K. Being in it together: Living with a partner receiving Deep Brain Stimulation for advanced Parkinson’s disease. J Adv Nurs2013; 69: 338-347.  
  18. Haahr A, Brincks J, Sørensen D. Everyday experiences and coping strategies of persons living with Parkinson’s disease; a systematic review protocol. JBI Database System Rev Implement Rep2017; 15:1288-1297.
  19. Haahr A, Østergaard K, Kirkevold M. It is hard work, but it is worth it: Patients and spouses’ experiences of a nursing intervention to promote adjustment to deep brain stimulation for Parkinson’s disease: A feasibility study. Adv Nurs Sci2018; 41:174-187.
  20. 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 Disord2015; 21: 1-11.
  21. Ambrosio L, Portillo MC, Rodriguez-Blazquez C, Martinez-Castrillo JC, Rodriguez-Violante M, Serrano-Duenas M, et al. Satisfaction with Life Scale (SLS-6): First validation study in Parkinson’s disease population. Parkinsonism Relat Disord2016; 25: 52-57. 
  22. Ambrosio L, Portillo MC, Rodriguez-Blazquez C, Rodriguez-Violante M, Martínez-Castrillo JC, Campos Arillo V, et al. Living with Chronic Illness Scale: International Validation of a New Self-Report Measure in Parkinson’s Disease. NPJ Parkinson’s Disease2016; 2: 1-6. DOI: 10.1038/npjparkd.2016.22
  23. Koetsenruijtr J, Vanlieshout J, Lionis C, Portillo MC, Vassilev I, Todorova E, et al. Social support and health in diabetes patients: an observational study in six European countries in an era of austerity. PLoS One2015; 25: 1-12. DOI:10.1371/journal.pone.0135079
  24. World Health Organisation. Global status report on noncommunicable diseases. 2014. http://apps.whol.int/iris/bitstream/10665/148114/1/9789241564854_eng.pdf(accessed 23 June 2018).
  25. World Health Organisation, Regional office for Europe. Action Plan for Implementation of the European Strategy for the Prevention and Control of Noncommunicable Diseases 2012–2016. 2011. http://www.euro.who.int/__data/assets/pdf_file/0019/170155/e96638.pdf(accessed 23 June 2018).
  26. Portillo MC, Regaira E, Pumar-Méndez MJ, Mujika A Vassilev I, Rogers A. Voluntary organizations and community groups as new partners in diabetes self-management and education: a critical interpretative synthesis. Diabet Educ2015; 41: 550-568. DOI:10.1177/0145721715594026 
  27. Portillo MC, Kennedy A, Todorova E, Regaira E, Wensing M, Foss C, et al. Interventions and working relationships of voluntary organisations for diabetes self-management: A cross-national study. Int J Nurs Stud. 2017; 70: 58-70. http://dx.doi.org/10.1016/j.ijnurstu.2017.02.001
  28. Nolte E, Knai C, Saltman RB. Assessing Chronic Disease Management in European Health Systems. Concepts and Approaches World Health Organisation, on Behalf of the European Observatory on Health Systems and Policies 2014. http://www.euro.who.int/en/publications/abstracts/assessing-chronic-disease-management-in-european-health-systems-concepts-and-approaches-2014/2015  (accessed 23 June 2018). 
  29. Peel C, Thomas S, Worth P. Developing an integrated care pathway: the process and its application to neurological conditions. Br J Neurosc Nurs2013; 9. https://doi.org/10.12968/bjnn.2013.9.6.292
  30. Yonga G. Integrated multisectoral approach to NCDs in Kenya. In: http://kapkenya.org/repository/CPDs/Conferences/Annual2012/INTEGRATEDMULTISECTORALAPPROACHTONCDsinkenya.pdf(accessed 23 June 2018).
  31. Schrijvers G, van Hoorn A, Huskes N. The care pathway: concepts and theories: an introduction. Int J Integ Care2012; 12: e192.
  32. Nuño R, Santo R, Toro N. Integrated care initiatives in the Spanish Health System. Int J Integ Care2012; 12:e35.
  33. Sundhedsstyrelsen. Forløbsprogrammer for kronisk sygdom – den generiske model. 2012. https://www.sst.dk/da/sygdom-og-behandling/kronisk-sygdom/forloebsprogrammer/den-generiske-model(accessed 23 June 2018)
  34. Norwegian Ministry of Health and Care Services. Public Health Report. Good health- a common responsibility. Meld.St.34 (2012–2013). Report to the Storting (White Paper) Summary. https://www.regjeringen.no/contentassets/ce1343f7c56f4e74ab2f631885f9e22e/en-gb/pdfs/stm201220130034000engpdfs.pdf(accessed 23 June 2018)
  35. Parekh AK, Goodman RA, Gordon C, Koh HK; and the HHS Interagency Workgroup on Multiple Chronic Conditions. Managing multiple chronic conditions: a strategic framework for improving health. Public Health Rep2011; 126: 460-471.
  36. Vassilev I, Rogers A, Sanders C, Kennedy A, Blickem C, Protheroe J,Morris R.Social networks, social capital and chronic illness self-management: a realist review. Chronic Illn2011; 7: 60-86.
  37. Jeffries M, Mathieson A, Kennedy A, Kirk S, Morris R, Blickem C, Vassilev I, Rogers A. Participation in voluntary and community organisations in the United Kingdom and the influences on the self-management of long-term conditions. Health Soc Care Community2015; 23: 252-261. 
  38. Blakeman T, Blickem C, Kennedy A, Reeves D, Bower P, Gaffney H, et al. Effect of information and telephone-guided access to community support for people with chronic kidney disease: randomised controlled trial. PLoS One2014; 9: e109135-e.
  39. World Health Organization. Discussion Paper: Intersectoral Action on Health: A path for policy-makers to implement effective and sustainable intersectoral action on health. Geneva: World Health Organization 2011. http://www.who. int/nmh/publications/ncds_policy_makers_to_implement_intersectoral_action.pdf (accessed 23 June 2018)
  40. World Health Organisation Regional office for Europe.Noncommunicable diseases prevention and control in the South-easter Europe Health Network. An analysis of intersectoral collaboration. 2012. http://www.euro.who.int/en/publications/abstracts/noncommunicable-diseases-prevention-and-control-in-the-south-eastern-europe-health-network.-an-analysis-of-intersectoral-collaboration-2012(accessed 23 June 2018).
  41. Eldridge SM, Chan CL, Campbell MJ, et al. CONSORT 2010 statement: extension to randomised pilot and feasibility trials. BMJ2016; 355: i5239-i5239. ISSN 0959-8138.
  42. Smith BE, Hendrick P, Bateman M, Moffatt F, Rathleff MS, Selfe J, et al. Study protocol: a mixed methods feasibility study for a loaded self-managed exercise programme for patellofemoral pain. Pilot Feasib Stud2017; 4: 1-10.
  43. Tickle-Degnen L. Nuts and bolts of conducting feasibility studies. Am J Occup Ther2013; 67: 171-176.
  44. Creswell JW, Plano Clark VL. Designing and Conducting Mixed Methods Research. 2nded. Thousand Oaks, CA: SAGE Publications; 2011.   
  45. Craig P, Petticrew M. Developing and evaluating complex interventions: Reflections on the 2008 MRC guidance. Int J Nurs Stud 2013; 50: 585-587.
  46. Moore G, Audrey S, Barker M, Bond L, Bonell C, Hardeman W, et al. Process evaluation of complex interventions: Medical Research Council guidance.BMJ2015; 350: h1258. 
  47. Aromataris E, Munn Z. Joanna Briggs Institute Reviewer’s Manual. The Joanna Briggs Institute 2017. https://reviewersmanual.joannabriggs.org/(accessed 23 June 2018).
  48. Saunders B, Sim J, Kingston T, Baker S, Waterfield J, Bartlam B, et al. Saturation in qualitative research: exploring its conceptualisation and operationalisation. Quality and Quantity2018; 52: 1983-1907. 
  49. Vaismoradi M, Tutunen H, Bondas T. Content analysis and thematical analysis: Implications for conducting a qualitative descriptive study. Nurs Health Sci2013; 15: 398-405. 
  50. Lincoln YS, Guba EG. Naturalistic Inquiry. Newbury Park, CA: SAGE Publications; 1985.
  51. Sim J, Lewis M. The size of a pilot study for a clinical trial shole calculation in relation to considerations of precision and efficiency. J Clin Epidemiol2012; 65: 301-308.
  52. Peto V, Jenkinson C, Fitzpatrick R, Greenhall R. The development and validation of a short measure of functioning and well being for individuals with Parkinson’s Disease. Qual Life Res1995; 4, 241-248. http://www.jstor.org/stable/4034492
  53. Morley D, Dummett S, Kelly L, Peters M, Dawson J, Fitzpatrick R, et al. The PDQ-Carer: development and validation of a summary index score. Parkinsonism Relat Disord2013; 19, 448-449. doi: 10.1016/j.parkreldis. 2012 
  54. Zimet GD, Dahlem NW, Zimet SG, Farley GK. The Multidimensional Scale of Perceived Social Support. J Pers Assess1988; 52: 30-41. https://doi.org/10.1207/s15327752jpa5201_2
  55. Diener E, Emmons RA, Larsen RJ, Griffin S. The Satisfaction With Life Scale. J Pers Assess 1985; 49: 71-75.
  56. Beck AT, Steer RA, Garbin MG. Psychometric properties of the Beck Depression Inventory: Twenty-five years of evaluation. Clin Psychol Rev1988; 8: 77-100. https://doi.org/10.1016/0272-7358(88)90050-5
  57. Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect2014; 17:637-650.
  58. Abma TA, Pittens CA, Visse M, Elberse JE, Broerse JE. Patient involvement in research programming and implementation: A responsive evaluation of the Dialogue Model for research agenda setting. Health Expect 2015; 18:2449-2464. DOI: 10.1111/hex.12213
  59. De Wit MP, Elberse JE, Broerse JE, Abma TA. Do not forget the professional-the value of the FIRST model for guiding the structural involvement of patients in rheumatology research. Health Expect 2015; 18:489-503.
  60. Soilemezi, D.,  Roberts, H. C.,  Navarta-Sánchez, M. V.,  Kunkel, D.,  Ewings, S.,  Reidy, C., &  Portillo, M. C.(2022).  Managing Parkinson’s during the COVID-19 pandemic: Perspectives from people living with Parkinson’s and health professionals. Journal of Clinical Nursing,  00,  1– 12. https://doi.org/10.1111/jocn.16367
  61. Soilemezi, D,  Palmar-Santos, A,  Navarta-Sánchez, MV, et al.  Understanding support systems for Parkinson’s disease management in community settings: a cross-national qualitative study. Health Expect. 2022; 1- 13. doi:10.1111/hex.13691
  62. Nielsen TL, Kruse NB, Haahr A, Hjelle EG, Bragstad LK, Palmar-Santos A, Navarta-Sánchez MV, Pedraz-Marcos A, Pires SB, Roberts HC, Portillo MC. Exploring health and social services in Denmark, Norway, Spain and the United Kingdom for the development of Parkinson’s care pathways. A document analysis. Health Soc Care Community. 2022 Nov;30(6):e3507-e3518. doi: 10.1111/hsc.13970. Epub 2022 Aug 17. PMID: 35975602.
  63. Navarta-Sánchez MV, Palmar-Santos A, Pedraz-Marcos A, Reidy C, Soilemezi D, Haahr A, Sørensen D, Smidt HR, Bragstad LK, Hjelle EG, Haavaag SB, Portillo MC. Perspectives of people with Parkinson’s disease and family carers about disease management in community settings: A cross-country qualitative study. J Clin Nurs. 2023 Feb 2. doi: 10.1111/jocn.16636. Epub ahead of print. PMID: 36732059.