Universidade de Aveiro 2015
Departamento de Economia, Gestão e Engenharia Industrial
NINA KATARZYNA
SZCZYGIEL
CONSEGUIMOS? DE PARCERIAS
INTERSECTORIAIS À QUALIDADE DE VIDA E
SATISFAÇÃO DO UTENTE, VIA PRESTAÇÃO DE
CUIDADOS CENTRADOS NO DOENTE
YES, WE CAN? FROM INTERSECTORAL
PARTNERSHIPS TO QUALITY OF LIFE AND USER
SATISFACTION THROUGH PATIENT-CENTERED
CARE PROVISION
Universidade de Aveiro 2015
Departamento de Economia, Gestão e Engenharia Industrial
NINA KATARZYNA
SZCZYGIEL
CONSEGUIMOS? DE PARCERIAS
INTERSECTORIAIS À QUALIDADE DE VIDA E
SATISFAÇÃO DO UTENTE, VIA PRESTAÇÃO DE
CUIDADOS CENTRADOS NO DOENTE
YES, WE CAN? FROM INTERSECTORAL
PARTNERSHIPS TO QUALITY OF LIFE AND USER
SATISFACTION THROUGH PATIENT-CENTERED
CARE PROVISION
Tese apresentada à Universidade de Aveiro para cumprimento dos requisitos necessários à obtenção do grau de Doutor em Gestão Industrial, realizada sob a orientação científica da Professora Doutora Silvina Maria Vagos Santana, Professora Associada com Agregação do Departamento de Economia, Gestão e Engenharia Industrial da Universidade de Aveiro.
Apoio financeiro da FCT e do FSE no âmbito do III Quadro Comunitário de Apoio
I dedicate this thesis to two persons who have shaped me the most as a person I am today: my Mother and my Grandmother Teresa. Principles and values you have passed me have been guiding me through life, and your faith and endless support are always on my mind permanently encouraging me to grow. I owe you everything.
o júri
presidente Prof. Doutor Armando da Costa Duarte
Professor Catedrático, Universidade de Aveiro
Prof. Doutor Nelson Fernando Pacheco da Rocha Professor Catedrático, Universidade de Aveiro
Prof. Doutora Silvina Maria Vagos Santana
Professora Associada com Agregação, Universidade de Aveiro (Orientadora)
Prof. Doutora Maria Bujnowska-Fedak
Professora Auxiliar, Department of Family Medicine, Wroclaw Medical University
Prof. Doutora Sandra Maria Correia Loureiro
Professora Auxiliar, Instituto Superior de Ciências do Trabalho e da Empresa, Instituto Universitário de Lisboa
Prof. Doutora Lara Noronha Ferreira
Acknowledgements Working on the PhD has been a wonderful, but often a demanding experience. This thesis would not be possible without collaboration of several persons to whom I would like to express my deepest gratitude.
First and foremost, to Silvina Santana, my advisor, colleague and mentor, thank to whom my passion for research started, who inspires me every day and makes me believe I can go further.
Special thanks to all colleagues and friends from the Department of Economics, Management and Industrial Engineering, and from other organic units of the University of Aveiro. Their academic support, friendship and personal cheering have been very much appreciated.
My thankfulness is extended to the HOMECARE project team, professionals from the Stroke Unit of the Hospital Infante D. Pedro in Aveiro: José Rente, MD, Chief Neurologist and Conceição Neves, Chief Nurse; professionals working with patients after discharge: Margarida Cerveira, Joana Freitas, Francisco Martins, Sílvia Pinto, Liliana Cardoso, and case managers: Patrícia Redondo, Marta Viana and Mariana Ribeiro. I am indebted to Patrícia, Marta and Mariana for long time spent during journeys to follow-up visits to patients, thank to which I saw the country I thought I knew through other eyes.
I would like to thank entities providing care and assistance to stroke survivors and contributed significantly to this work, particularly their representatives who received me so kindly: Júlia Oliveira, MD, from the Hospital Dr. Francisco Zagalo de Ovar, Dulcínia Sereno, Councilperson of Câmara Municipal de Vagos, Susana Fernandes, Director of Centro Social e Paroquial de Santo André de Esgueira, Carlos Alberto Nunes Pires, Commander of Associação Humanitária de Bombeiros Voluntários de Aveiro-Velhos, Sandra Rodrigues, MD, from Centro Hospitalar Baixo Vouga, LaSalette Matos, MD, from Unidade de Saúde Familiar Leme, Álvaro Bebiano, Director of Clínica de Medicina Reabilitação Física Dr. Mário Jorge S. Silva, Lda, Paula Sousa, MD, Director of Casa de Repouso Dr. António Breda e Lea Breda, Gina Barbosa from Santa Casa de Misericórdia de Aveiro and Luís Fernando Dias de Oliveira, President of Junta de Freguesia de Calvão.
To persons who provided me support with data collection at different stages of my work, particularly Ana Cristina Quadros, responsible for Social Services in the Hospital Infante D. Pedro, Maria João Gaiato from Imprensa Nacional, Casa da Moeda S.A., and Madalena Pinheiro, Jeanette Conceição and Joana Pereira from Biblioteca Municipal de Aveiro.
I am especially grateful to all patients taking part in the study without whom this thesis would not be possible.
I wish to acknowledge the support of the Portuguese Foundation for Science and Technology (FCT - Fundação para a Ciência e a Tecnologia) with grant SFRH/BD/69892/2010.
They say your home is where your heart is andI feel blessed because my heart is in two countries at the same time. For their unconditional love and care, I will never pay my debt to my parents, my biggest fan - beloved grandma Teresa, to my brother Michał and Ania, and to Francisco. My life would also not be complete without my friends.
palavras-chave parcerias intersectoriais, colaboração, acidente vascular cerebral, qualidade de serviço, satisfação do utente, Careperf, qualidade de vida, análise das redes
resumo A Organização Mundial de Saúde reportou que 15 milhões de pessoas sofrem um acidente vascular cerebral anualmente, em todo o mundo. Portugal não é excepção na tendência global, sendo o AVC a causa principal de morte no país. Os sobreviventes com frequência experienciam morbidade, incapacidades várias e dependência nas actividades da vida diária, com enormes custos para o indivíduo, a família e a sociedade. Foi estimado que, no Reino Unido, os custos anuais diretos do AVC rondam os 4 biliões de libras, não tendo sido encontrados números referentes à situação em Portugal. O AVC, devido à sua prevalência e incidência, é pois um exemplo claro de como a realidade actual coloca os decisores sob enorme pressão, quando organizam e gerem os cuidados prestados à população, dadas as actuais limitações orçamentais, de forma a lidar com aspectos de saúde que passaram a estar bem para lá daquilo com que o sector da saúde pode lidar sozinho.
É consensual que a taxa de sobrevivência nestas situações não é um indicador suficiente para a qualidade dos cuidados prestados. No caso do AVC, a qualidade de vida depois da fase aguda pode tornar-se um enorme problema, requerendo normalmente cuidados de saúde e sociais de longo prazo e outro tipo de assistência, e com o apoio social informal representando não só uma parte muito importante do cuidado prestado mas também um contributo enorme para o bem-estar do sobrevivente. Esta crescente necessidade por serviços complexos e multidisciplinares coloca a questão da qualidade de cuidado global e da satisfação do utente que os experiencia de forma ainda mais premente. A comunidade internacional tem vindo a reconhecer, de forma crescente, a importância e o potencial das parcerias intersectoriais na produção de mudança estrutuctural e social sustentadas como elemento fundamental de estratégias de saúde e sociais. A necessidade urgente de colaboração entre uma ampla variedade e diversidade de entidades que prestam serviços de assistência em Portugal, por norma muito fragmentados, implica uma perspectiva multi-dimensão, multi-entidade e inter-sector. Um ambiente colaborativo pode ser encarado como uma rede de relacionamentos organizacionais entre prestadores de serviços, sendo que as entidades de saúde e sociais parecem hoje estar, por natureza, embutidas na perspectiva de rede, dado representarem relações complexas de trabalho e pessoais.
Esta tese tem como objetivo estudar a acção colaborativa intersectorial disponível para doentes que sofreram um AVC em Portugal. Mais concretamente, pretende-se avaliar o impacto das parcerias existentes sobre a qualidade de vida dos doentes, a qualidade percebida do serviço experienciado e a satisfação com os serviços prestados, e analisar a realidade colaborativa no
O estudo representa o primeiro esforço nesta área, não tendo sido encontrado qualquer outro semelhante publicado, o que torna este trabalho ainda mais relevante nas circunstâncias actuais, pelos contributos teóricos e práticos que proporciona.
keywords intersectoral partnerships, collaboration, stroke, service quality, user satisfaction, Careperf, quality of life, network analysis
abstract The World Health Organization reports that 15 million people experience cerebrovascular accident annually worldwide, of which 5 million die. Portugal is not an exception in the global tendency, with stroke constituting the principal cause of death.
Survivors frequently experience morbidity, disability and dependency in activities of daily living, representing huge costs to individual, family and society. The UK data estimate the annual direct cost of stroke care to around £4 billion, with no data of that type found with respect to Portugal. Stroke, due to its prevalence and incidence, is hence a clear example on how today’s reality puts policy makers under enormous pressure to organize and manage care of the population, given current budget limitations in order to deal with aspects of health that have moved well beyond of what the health sector can handle alone.
It is consensual that a survival rate is not a sufficient outcome indicator of quality of care. In case of stroke patients, quality of life after the acute phase may become a huge problem, commonly requiring long-term health and social care, and other assistance, and informal social support which represents both, relevant caregiving patterns and an enormous contribution to a person well-being. This increasing demand for complex, multidisciplinary care services raises a question on their quality and user satisfaction. Nevertheless, a few have deliberated these concepts within a multiple-setting which is turning vital to guarantee and improve coordination and continuity of care.
International community has increasingly recognized the importance and potential of intersectoral partnerships in producing sustainable structural and social change as a fundamental element of health and social strategy. A pressing need for collaboration between a broad range and diversity of entities providing mostly fragmented care services in Portugal entails a multidimensional, multi-stakeholder and cross-sector perspective. Collaborative environment can be approached as a network of organizational relationships between service providers and health and social care entities seem today to be by nature embedded in the network perspective as they represent business and personal relationships.
This thesis aims to investigate the status of intersectoral collaborative action for stroke patients in Portugal. Particularly, its objective is to evaluate the impact of existing partnerships on patients’ quality of life, perceived service quality and satisfaction from care, support and assistance services they experienced, and to analyze ways they function in the Portuguese context.
To our knowledge, no study of this type has ever been developed, making this work relevant under current circumstances, and for the theoretical and practical
TABLE OF CONTENTS
TABLE OF CONTENTS……….... xix
LIST OF TABLES………... xxv
LIST OF FIGURES………... xxxi
LIST OF ABBREVIATIONS AND ACRONYMS………... xxxv
INTRODUCTION……….. 37
PART ONE………. 53
CHAPTER ONE: APPROACHING PARTNERSHIPS THROUGH THE INTERSECTORAL DIMENSION………. 55
1.1. Collaboration concept and rationale………... 56
1.2. Forms of collaborative linkages……….. 59
1.2.1. Coalition……….. 60 1.2.2. Alliance………... 61 1.2.3. Cooperation………... 61 1.2.4. Coordination……… 62 1.2.5. Collaboration………... 63 1.2.6. Partnership……….. 69 1.2.7. Integration………... 79 1.2.8. Intersectoral partnership………... 80
1.3. Public-private partnerships versus intersectoral collaborations………... 83
1.4. Collaboration intensity continuum………... 87
1.5. Sectoral approach to the economy………... 95
1.6. Determinants of partnerships……… 101
1.7. Evaluating performance of a partnership……….. 111
1.8. Intersectoral partnerships in international documents……….. 126
1.9. Intersectoriality in health and social care in Portugal……….. 132
1.9.1. Systematic review of the Portuguese legislation on intersectoral action………….. 134
1.10. Summary and conclusions………. 148
CHAPTER TWO: APPROACHING INTERSECTORAL PARTNERSHIPS THROUGH THE LENS OF THE NETWORK THEORY……….. 151
2.1. Network concept and the network theory………. 151
2.4. Characteristics of networks……….. 162
2.5. Typology of networks and types of actors……… 165
2.6. Networks in organizational context and their potential for health and social care…….. 167
2.7. Summary and conclusions……… 170
CHAPTER THREE: PERCEIVED SERVICE QUALITY AND USER SATISFACTION... 173
3.1. Conceptualization of services………... 173
3.2. Concepts of service quality and satisfaction………... 175
3.2.1. Service quality notion………... 175
3.2.2. Models of service quality……….. 177
3.2.3. Instruments measuring service quality………. 188
3.2.3.1. SERVQUAL………... 188
3.2.3.2. SERVPERF……… 190
3.2.4. Concept of satisfaction………. 191
3.2.5. Relation between service quality and satisfaction……… 193
3.2.6. Service quality in health care………... 195
3.3. Summary and conclusions……… 199
CHAPTER FOUR: QUALITY OF LIFE AFTER CEREBROVASCULAR ACCIDENT…. 201 4.1. Historical background……….. 202
4.2. Quality of life notion………... 203
4.3. Quality of life versus health-related quality of life……….. 204
4.4. General aspects of quality of life……….. 206
4.5. Factors influencing quality of life after cerebrovascular accident…………... 208
4.6. Measurement of quality of life………. 209
4.6.1. Generic measures………... 211
4.6.2. Disease-specific measures……… 212
4.7. Measurement of quality of life in patients after cerebrovascular accident…... 212
4.7.1. Generic measures……….. 213
4.7.2. Stroke-specific measures of quality of life………... 218
4.7.3. Challenges to quality of life measurement in stroke patients………... 221
4.8. Summary and conclusions……… 222
PART TWO………. 223
CHAPTER FIVE: METHODOLOGY………. 225
5.1. Methodological issues……….. 225
5.3. Research framework and design………... 229
5.3.1. Contextualization of the study………... 231
5.3.2. Literature search strategy………... 235
5.4. Methods………... 237
5.4.1. Patients’ study………... 237
5.4.1.1. Expectations sheet……….. 239
5.4.1.2. Experiences sheet……… 240
5.4.1.3. Stroke Specific Quality of Life Scale………. 240
5.4.1.4. Careperf measure of service quality………... 244
5.4.1.5. Lubben Social Network Scale-18……….. 247
5.4.1.6. Interview with stroke patients……… 248
5.4.2. Entities’ study………... 252
5.4.2.1. Collaboration intensity within the care network for stroke patients………... 253
5.4.2.2. Interviews with key informants of care and assistance providers for stroke patients……… 254
5.5. Data collection……….. 258
5.5.1. General orientations………... 260
5.5.2. Data collection schedule………... 260
5.6. Data processing and analysis……… 263
5.7. Summary and conclusions……… 275
CHAPTER SIX: RESULTS OF THE EMPIRICAL STUDY: THE NETWORK OF CARE IN THE EYES OF USERS……….. 277
6.1. Characteristics of patients………... 277
6.2. Patients’ expectations and experiences with care………... 280
6.2.1. Patients’ expectations at discharge from the stroke unit……….. 280
6.2.1.1. Expectations of contacts with care and support entities……… 281
6.2.1.2. Expectations of support and general vision of the care system………. 284
6.2.2. Patients’ experiences six months after discharge from the stroke unit………. 285
6.2.2.1. Care and support entities effectively contacted by patients……… 285
6.2.2.2. Patients’ contacts with the care system by entity and care system type……. 287
6.2.3. Confrontation between patients’ expectations and experiences with contacts with care and support entities………... 289
6.3. Perceived service quality and satisfaction with care services……….. 300
6.3.1. Careperf service quality measure………... 300
6.3.2.1. Service quality of the hospital……… 312 6.3.2.2. Service quality of rehabilitation units………. 313 6.3.2.3. Service quality of health centers……… 315 6.3.2.4. Service quality of physiotherapy clinics ……… 317 6.3.3. Service quality in stroke support and in care entities assessed qualitatively……… 317 6.3.3.1. Service quality of first aid………... 318 6.3.3.2. Service quality of fire departments………. 321 6.3.3.3. Service quality of Private Institutions of Social Solidarity………. 323 6.3.3.4. Service quality of charitable institutions……… 324 6.3.3.5. Service quality of the Church………. 325 6.3.3.6. Service quality of city councils………... 326 6.3.3.7. Service quality of parish councils………... 326 6.3.3.8. Service quality of the Social Security……… 326 6.3.3.9. General assessment of care provision after discharge……… 327 6.3.4. Satisfaction with stroke support and care services………... 331 6.3.4.1. Satisfaction with hospital services………. 332 6.3.4.2. Satisfaction with rehabilitation units services……… 334 6.3.4.3. Satisfaction with health centers services………... 334 6.3.4.4. Satisfaction with physiotherapy clinics services……… 336 6.3.4.5. Satisfaction with fire departments services……… 336 6.3.4.6. Satisfaction with Private Institutions of Social Solidarity services………… 337 6.3.4.7. Satisfaction with charitable institutions services……… 337 6.3.4.8. Satisfaction with the Church……….. 338 6.3.4.9. Satisfaction with city councils services……….. 338 6.3.4.10. Satisfaction with parish councils services……… 338 6.3.4.11. Satisfaction with the Social Security services………. 338 6.3.4.12. Overall satisfaction with the care system……….... 338 6.3.5. Service quality and satisfaction with the system versus perceived health status….. 342 6.3.6. Regression analyses……….. 343 6.4. Quality of life and informal support for stroke patients………... 346 6.4.1. Quality of life after cerebrovascular accident………... 346 6.4.2. Quality of life in the 2nd and 6th month after discharge……….. 347 6.4.3. Informal network of care and perceptions of its importance in post-stroke
recovery……… 353 6.4.3.1. Relation between informal social support and the quantity of interactions
6.4.3.2. Health status of patients and received informal social support……... 359 6.4.3.2.1. Dimensions of the Lubben Social Network Scale-18 verified in
the Portuguese stroke patients………... 361 6.4.4. Patients’ quality of life and received social support………. 365 CHAPTER SEVEN: RESULTS OF THE EMPIRICAL STUDY: THE NETWORK OF CARE IN THE EYES OF SERVICE PROVIDERS……… 371 7.1. Entities in the network of care………... 371 7.2. Categorization………... 373 7.2.1. Macro Level………... 373 7.2.2. Meso Level………... 375 7.2.3. Micro Level………... 379 7.3. Care providers’ perceptions of collaboration………... 381 7.3.1. Macro Level……….. 382 7.3.2. Meso Level……… 383 7.3.2.1. Meso Level - Organizational Collaboration………... 384 7.3.2.2. Meso Level - Professional Collaboration………... 388 7.3.3. Micro Level……….. 392 7.4. Appraisal of collaboration from health and not directly health care-related providers
– a comparison study ……….. 394 7.4.1. Macro Level………... 394 7.4.2. Meso Level………... 396 7.4.3. Micro Level……….. 402 7.5. Collaboration intensity between care and support providers for stroke patients………. 404 CHAPTER EIGHT: DISCUSSION AND CONCLUSIONS……….. 427 8.1. Discussion of the results………... 427 8.1.1. Phase one……….. 428 8.1.2. Phase two……….. 449 8.2. Limitations and suggestions for future research………... 460 8.2.1. Limitations of the study……… 461 8.2.2. Suggestions for future research……… 464 REFERENCES………. 467 APPENDICES……….. 511 APPENDICE 1: Socio-demographic profile……… 513
APPENDICE 3: Patients’ experiences………. 525 APPENDICE 4: SERVPERF items applied to the present study………. 527 APPENDICE 5: Careperf service quality measure………... 529 APPENDICE 6: Stroke-Specific Quality of Life Scale………... 539 APPENDICE 7: SS-QoL quality of life scale adapted to the Portuguese language…… 543 APPENDICE 8: Lubben Social Network Scale-18………... 557 APPENDICE 9: Guide of the interview with patients………. 561 APPENDICE 10: Guide of the interview with care and support providers……….. 575 APPENDICE 11: Complete codification system of the interviews with patients... 581 APPENDICE 12: Health and social care systems in Portugal………... 583
LIST OF TABLES
Table 1. Models of medicine and public health collaboration as identified by Martin-Misener and Valaitis (2008)………. 67 Table 2. Illustrative partnership efforts as defined by their structural relationship according to Bartel,
Igras and Chamberlain (2007)………. 73 Table 3. Stages in the partnership process according to Wilson and Charleton (1997)………. 76 Table 4. Stages and characteristics of partnerships according to Greenwald (2008)………... 77 Table 5. Challenges to civil society according to Brown and Kalegaonkar (1999)………... 99 Table 6. Public participation in different types of partnerships according to Sullivan and Skelcher
(2002)……… 100 Table 7. Framing of participation techniques according to Williams et al. (2006)………. 101 Table 8. Drivers and barriers to integrated working according to Stewart, Petch and Curtice (2003)... 106 Table 9. Calculus of interorganizational collaboration according to Alter and Hage (1993)…………. 108 Table 10. Factors influencing the success of collaboration as defined by Mattessich, Murray-Close
and Monsey (1994)……… 108 Table 11. Barriers to coordination according to Hudson et al. (1997)………... 109 Table 12. Factors supporting or hindering joint working in health and social care according to
Cameron and Lart (2003)………... 110 Table 13. Components of a holistic perspective for partnership evaluation according to Hudson
(2006)………. 114 Table 14. An illustration of ‘healthy partnership’………. 122 Table 15. Results of the search for keywords associated with collaboration in Diário da República... 134 Table 16. Results of the search for keywords associated with collaboration and the expression
‘intersectoral’ in Diário da República ………... 135 Table 17. Results of the search for the expression ‘intersectoral cooperation’ in Diário da
República in the 1st and the 2nd Series ……… 136 Table 18. Results of the search for the expression ‘intersectoral coordination’ in Diário da
República in the 1st and the 2nd Series ……….... 138 Table 19. Results of the search for the expression ‘intersectoral collaboration’ in Diário da
República in the 1st and the 2nd Series………. 140 Table 20. Results of the search for the expression ‘intersectoral partnership’ in Diário da
República in the 1st and the 2nd Series ……… 141 Table 21. Results of the search for the expression ‘intersectoral articulation’ in Diário da
República in the 1st and the 2nd Series …………... 142 Table 22. Results of the search for the expression ‘intersectoral strategic program’ in Diário da
República in the 1st and the 2nd Series ………... 144 Table 23. Network levels according to Hill (2002)………... 153 Table 24. Network analysis principles, assumptions and methodological issues……….. 156 Table 25. A typology of ties studied in social network analysis………... 158 Table 26. Topics studied within social network analysis and involved researchers ………. 161 Table 27. Essential network properties………... 164 Table 28. Characteristics of physical goods and services according to Grönroos (2000)………. 174 Table 29. Definitions of quality of care collected by Legido-Quigley et al. (2008)……….. 195 Table 30. Dimensions of quality of care as determined by selected authors ………... 196 Table 31. Strengths and weaknesses of available measures of quality of life in clinical trials
according to Guyatt, Feeny and Patric (1993)………... 212 Table 32. Comparison of quantitative and qualitative research methods……….. 227 Table 33. Private Institutions of Social Solidarity registered in the Portuguese Social Security and
their forms ………... 233 Table 34. The SS-QoL response key set………... 242 Table 35. Answer key for the LSNS-18………. 247 Table 36. Socio-demographic profile of patients (1)………. 278 Table 37. Socio-demographic profile of patients (2)………. 279 Table 38. Stroke patients’ expectations of contacts with institutions at discharge from the stroke
unit………... 282 Table 39. Spearman correlation ranks between institutions……….. 283 Table 40. Contacts effectively established by patients with care and support providing institutions… 286 Table 41. Expectations of informal or formal support from a caregiver confronted with actually
received care……….. 292 Table 42. Impact of gender on patients’ interaction with a health center……….. 293 Table 43. Impact of age on patients’ interaction with a health center………... 293 Table 44. Impact of education level on patients’ interaction with a health center………. 294 Table 45. Impact of a type of caregiver after stroke on patients’ interaction with a health center…… 294
Table 46. Impact of education level on patients’ interaction with one physiotherapy clinic…………. 295 Table 47. Impact of having care after stroke on patients’ interaction with one physiotherapy clinic… 295 Table 48. Impact of a type of caregiver after stroke on patients’ interaction with one physiotherapy
clinic………... 295 Table 49. Impact of civil status on patients’ interaction with a fire department………... 296 Table 50. Impact of having care after stroke on patients’ interaction with a fire department………... 296 Table 51. Impact of age on patients’ interaction with IPSS……….. 297 Table 52. Impact of education level on patients’ interaction with IPSS………... 297 Table 53. Impact of having care after stroke on patients’ interaction with IPSS………... 297 Table 54. Impact of age on patients’ interaction with a private caregiver………. 298 Table 55. Impact of gender on patients’ interaction with a private caregiver………... 298 Table 56. Impact of care after stroke on patients’ interaction with one rehabilitation unit………... 299 Table 57. Impact of a caregiver type after stroke on patients’ interaction with one rehabilitation unit. 299 Table 58. Impact of civil status on patients’ interaction with the Social Security………... 300 Table 59. Impact of housing situation on patients’ interaction with the Social Security……….. 300 Table 60. Reliability and PCA results for the Tangibles dimension………. 303 Table 61. Reliability and PCA results for the Reliability dimension ………... 304 Table 62. Reliability and PCA results for the Responsiveness dimension ………... 305 Table 63. Reliability and PCA results for the Assurance dimension ……… 305 Table 64. Reliability and PCA results for the Empathy dimension ……….. 306 Table 65. Reliability and PCA results for the Communication dimension ……….. 306 Table 66. Reliability and PCA results for the Privacy dimension………. 307 Table 67. Confirmatory model fit indices……….. 309 Table 68. Confirmatory model coefficient statistics ………. 309 Table 69. Statistics of all items proposed for the Careperf measure reached in the hospital setting…. 310 Table 70. Results of the individual dimensions of the Careperf measure applied for hospital services 312 Table 71. Results of individual dimensions of the Careperf measure applied to the RNCCI
convalescence, and medium and long-term units ………. 314 Table 72. Results of individual dimensions of the Careperf measure applied to health centers in the
district of Aveiro ………... 316 Table 73. Results of individual dimensions of the Careperf measure applied to physiotherapy clinics
Table 74. Partial codification system and representative citations from the interviews with patients... 329 Table 75. Descriptive statistics of variables related to satisfaction with services of support and care
providers ……… 331 Table 76. Satisfaction with the care system and intensity of contact with the hospital………. 340 Table 77. Satisfaction with the care system and intensity of contact with a health center……… 340 Table 78. Satisfaction with the care system and intensity of contact with a fire department………… 340 Table 79. Satisfaction with the care system and intensity of contact with a Private Institution of
Social Solidarity………. 341 Table 80. Satisfaction with the care system and intensity of contact with the Social Security………. 341 Table 81. Satisfaction with the care system and intensity of contact with physiotherapy clinics……. 342 Table 82. Correlations between perceived quality of the care system, satisfaction with the system as
a whole and a number of institutions contacted by the patient……….. 342 Table 83. Descriptive statistics and the correlation matrix ………... 344 Table 84. Multivariate logistic regression models results ……… 346 Table 85. Differences between patients’ quality of life after stroke in the second and the sixth month
after discharge………... 347 Table 86. One-Way Repeated Measures ANOVA for comparing quality of life by gender……... 348 Table 87. One-Way Repeated Measures ANOVA for comparing quality of life by age……….. 349 Table 88. One-Way Repeated Measures ANOVA for comparing quality of life by housing situation. 350 Table 89. One-Way Repeated Measures ANOVA for comparing quality of life by civil status... 351 Table 90. One-Way Repeated Measures ANOVA for comparing quality of life by professional
situation……….. 352 Table 91. Differences between groups in the subscales of the LSNS-18……….. 353 Table 92. Significant differences between groups in overall support in the LSNS-18... 355 Table 93. Differences between groups in the assessment of perceived quality of social support
received from family, neighbors and friends ………... 356 Table 94. Relation between availability of social support and patients’ assessment of that support…. 357 Table 95. Interview categories and subcategories with representative quotations within the topic
‘Perceived Social Support’…... 358 Table 96. Correlation between the type of informal support and a number of institutions contacted
by patients……….. 359 Table 97. Partial codification system and representative citations from the interviews with patients
within the topic ‘Assessment of Current Health Status’……… 359 Table 98. Factors associated to social support ………... 362 Table 99. Statistics of all items of the Lubben Social Network Scale-18 applied to Portuguese stroke
survivors ……… 364 Table 100. Differences observed in quality of life dimensions between the 6th and the 2nd
month of the study among groups of patients with very high and very low support
from family………. 367 Table 101. Differences observed in quality of life dimensions between the 6th and the 2nd
month of the study among groups of patients with very high and very low support
from neighbors……….... 368 Table 102. Differences observed in quality of life dimensions between the 6th and the 2nd
month of the study among groups of patients with very high and very low support
from friends………... 369 Table 103. Differences observed in quality of life dimensions between the 6th and the 2nd
month of the study among groups of patients with overall very high and very
low support……….. 369 Table 104. Sample description from the interviews with care and support entities……….. 372 Table 105. The main categorical system for institutional analysis……… 373 Table 106. An example of the data coding of the categorization matrix template – Macro Level…... 374 Table 107. An example of the data coding of the categorization matrix template – Meso Level….... 378 Table 108. An example of the data coding of the categorization matrix template – Micro Level…… 380 Table 109. Macro Level and System Integration – frequency table………. 382 Table 110. Meso Level and Organizational Collaboration – Collaboration perception – frequency
table………. 384 Table 111. Meso Level and Organizational Collaboration – Characteristics of collaboration
– frequency table………. 386 Table 112. Meso Level and Professional Collaboration - frequency table………... 388 Table 113. Meso Level and Professional Collaboration - Service quality of care providers
– frequency table………. 390 Table 114. Micro Level and Clinical Collaboration – frequency table………... 392 Table 115. Graph metrics for the global structure of collaboration between providers of care and
Table 116. Graph metrics for the structure of collaboration of the intensity of 2-5 between
providers of care and support for stroke patients………... 407 Table 117. Graph metrics for the structure of collaboration of the intensity of 3-5 between
providers of care and support for stroke patients……… 410 Table 118. Collaboration strength per most connected municipalities in the network
configuration with collaboration of intensity 3 to 5……… 415 Table 119. Graph metrics for the structure of collaboration of the intensity of 4-5 between
providers of care and support for stroke patients……… 418 Table 120. Four highest degree nodes at the collaboration intensity level of 4 and 5……….. 423
LIST OF FIGURES
Figure 1. Key types of public-private partnerships and collaborations in the health sector of Nikolic and Maikisch (2006)………. 87 Figure 2. Model of partnership behavior of Pratt, Gordon and Plampling (1999)……….. 89 Figure 3. Transversal system of partnership evolution classification of Gajda (2004)………... 89 Figure 4. Organizational affiliation continuum according to Eilbert and Lafronza (2005)…... 91 Figure 5. Features of collaborative endeavors according to Horwath and Morrison (2007)………... 92 Figure 6. The collaboration continuum according to Austin (2000)………... 93 Figure 7. Stages of collaboration models according to Frey et al. (2006)……… 94 Figure 8. Constituents of collaboration according to Horwath and Morrison (2007)………... 102 Figure 9. A simple configuration of a network………. 152 Figure 10. A group of relationships in a network………... 152 Figure 11. A complex network of relationships……… 152 Figure 12. Collaboration within and between sectoral boundaries on a basis of the network
approach……….. 168 Figure 13. Grönroos’s (1984) model of service quality……… 178 Figure 14. 4Q model of offering quality of Gummesson (1987)………... 179 Figure 15. Grönroos-Gummesson model of quality (1990)………. 180 Figure 16. GAP analysis quality model of Parasuraman, Zeithaml and Berry (1985)………. 181 Figure 17. Extended model of service quality of Zeithaml, Berry and Parasuraman (1988)………... 183 Figure 18. Value and attitude in negative disconfirmation – Mattsson’s (1992) model of service
quality……….. 184 Figure 19. Attribute based and overall affect models of Dabholkar (1996)………... 184 Figure 20. Satisfaction service quality model of Spreng and Mackoy (1996)………. 185 Figure 21. PCP attribute model of Philip and Hazlett (1997)……….. 186 Figure 22. Model of service quality, customer value and customer satisfaction of Oh (1999)... 187 Figure 23. The internal service quality model of Frost and Kumar (2000)………... 188 Figure 24. Model of quality in health care of Wilde et al. (1993)……….... 198 Figure 25. Five levels of collaboration and their features according to Frey et al. (2006)………….. 254 Figure 26. Conceptual framework for integrated care based on integrated functions of primary
care of Valentijn et al. (2013)………. 257 Figure 27. Study components and their duration………... 260 Figure 28. Data collection schedule………... 261
Figure 30. Entities expected to be contacted by patients within the following six months as
perceived at discharge from the stroke unit……… 283 Figure 31. Comparison between expectations at discharge and experiences in the six-month
follow-up of respondents of the study……….... 289 Figure 32. Confirmatory model for the Careperf instrument ……….. 308 Figure 33. Means of factors associated to service quality in the hospital setting measured by the
Careperf……….. 311 Figure 34. Assessment of overall service quality provided by the hospital………. 313 Figure 35. Assessment of overall service quality provided by convalescence units……… 315 Figure 36. Assessment of overall service quality provided by health centers………. 316 Figure 37. Satisfaction with hospital services perceived by patients………... 332 Figure 38. Satisfaction with convalesce units services perceived by patients………. 334 Figure 39. Satisfaction with health centers services perceived by patients………... 335 Figure 40. Satisfaction with transportation services of fire departments perceived by patients…….. 336 Figure 41. Satisfaction with services of Private Institutions of Social Solidarity perceived by
patients……… 337 Figure 42. Assessment of support received from family, neighbors and friends six months after
discharge……….. 356 Figure 43. Means of factors associated to social support measured by the Lubben Social Network
Scale-18………... 365 Figure 44. Macro Level and subsequent subcategories system design………. 373 Figure 45. Meso Level and subsequent Organizational Collaboration subcategories system design.. 376 Figure 46. Meso Level and subsequent Professional Collaboration subcategories system design….. 377 Figure 47. Micro Level and subsequent Clinical Collaboration subcategories system design……… 380 Figure 48. Macro Level and System Integration distribution of responses……….. 383 Figure 49. Meso Level and Organizational Collaboration - Collaboration perception………... 385 Figure 50. Meso Level and Organizational Collaboration - Characteristics of collaboration……….. 387 Figure 51. Meso Level and Professional Collaboration - Interpersonal relationships……….. 389 Figure 52. Meso Level and Professional Collaboration - Service quality of care providers…... 391 Figure 53. Micro Level and Clinical Collaboration………... 393 Figure 54. Macro Level and System Integration……….. 395 Figure 55. Meso Level and Organizational Collaboration - Collaboration perception……… 397 Figure 56. Meso Level and Organizational Collaboration - Characteristics of collaboration……….. 398 Figure 57. Meso Level and Professional Collaboration – Interpersonal relationships………. 400
Figure 58. Meso Level and Professional Collaboration - Service quality of care providers…... 401 Figure 59. Micro Level and Clinical Collaboration………... 403 Figure 60. In-degree centrality of global collaboration between care providers for stroke patients… 405 Figure 61. Out-degree centrality of global collaboration between care providers for stroke patients.. 405 Figure 62. Betweenness centrality of global collaboration between care providers for stroke
patients……… 405 Figure 63. Closeness centrality of global collaboration between care providers for stroke patients… 406 Figure 64. Eigenvector centrality of global collaboration between care providers for stroke patients 406 Figure 65. Clustering coefficient of global collaboration between care providers for stroke patients. 406 Figure 66. In-degree centrality of collaboration of the intensity of 2-5 between care providers for
stroke patients………. 407 Figure 67. Out-degree centrality of collaboration of the intensity of 2-5 between care providers for
stroke patients………. 408 Figure 68. Betweenness centrality of collaboration of the intensity of 2-5 between care providers
for stroke patients……… 408 Figure 69. Closeness centrality of collaboration of the intensity of 2-5 between care providers for
stroke patients………... 409 Figure 70. Eigenvector centrality of collaboration of the intensity of 2-5 between care providers for
stroke patients………. 409 Figure 71. Clustering coefficient of collaboration of the intensity of 2-5 between care providers for
stroke patients………. 409 Figure 72. In-degree centrality of collaboration of the intensity of 3-5 between care providers for
stroke patients………. 410 Figure 73. Out-degree centrality of collaboration of the intensity of 3-5 between care providers for
stroke patients………. 411 Figure 74. Betweenness centrality of collaboration of the intensity of 3-5 between care providers
for stroke patients………... 411 Figure 75. Closeness centrality of collaboration of the intensity of 3-5 between care providers for
stroke patients………. 411 Figure 76. Eigenvector centrality of collaboration of the intensity of 3-5 between care providers for
stroke patients………. 412 Figure 77. Clustering coefficient of collaboration of the intensity of 3-5 between care providers for
stroke patients………... 412 Figure 78. Betweenness centrality demonstration of collaboration with the intensity of 3 to 5
between care providers for stroke patients………... 413 Figure 79. Clustering demonstration in collaboration with the intensity of 3 to 5 between care
providers for stroke patients……… 413 Figure 80. Reciprocated vertex pair ratio demonstration in collaboration with the intensity of
3 to 5 between care providers for stroke patients………... 414 Figure 81. Regional collaboration with the intensity of 3 to 5 between care providers for stroke
patients………... 415 Figure 82. Regional collaboration with the intensity of 3 to 5 between care providers for stroke
patients - the central part of the network……… 416 Figure 83. Regional collaboration with the intensity of 3 to 5 between care providers for stroke
patients - the south-east part of the network……… 417 Figure 84. Regional collaboration with the intensity of 3 to 5 between care providers for stroke
patients - the north-west part of the network…... 418 Figure 85. Nodes with the relationship intensity of 4 to 5……… 419 Figure 86. In-degree centrality of collaboration of the intensity of 4-5 between care providers for
stroke patients………... 420 Figure 87. Out-degree centrality of collaboration of the intensity of 4-5 between care providers
for stroke patients………... 420 Figure 88. Betweenness centrality of collaboration of the intensity of 4-5 between care providers
for stroke patients……… 420 Figure 89. Closeness centrality of collaboration of the intensity of 4-5 between care providers
for stroke patients………... 421 Figure 90. Eigenvector centrality of collaboration of the intensity of 4-5 between care providers
for stroke patients……… 421 Figure 91. Clustering coefficient of collaboration of the intensity of 4-5 between care providers for
stroke patients………. 422 Figure 92. Four strongest connected nodes in the network of the relationship intensity 4-5………... 422 Figure 93. The node with the highest degree in the network of the relationship intensity 4-5……… 423 Figure 94. The node with the second highest degree in the network of the relationship intensity 4-5. 424 Figure 95. Collaboration configuration with the intensity 5……… 424 Figure 96. Model of Intensity Levels for Collaborative Linkages……… 457 Figure 97. Contracting model of an ARS with ACES (external) and ACES with respective
LIST OF ABBREVIATIONS AND ACRONYMS
ACES - groups of primary care centers also designated Primary Care Trusts (Agrupamentos de Centros de Saúde)
ADL - activities of daily living
ARS - Regional Health Administrations (Administrações Regionais de Saúde) BTS - Bartlett’s test of sphericity
CARE - the Cooperative for Assistance and Relief Everywhere CCN - the Community Care Network
CEO - Chief Executive Officer CFA - confirmatory factor analysis CFO - Chief Financial Officer COO - Chief Operational Officer CSR - corporate social responsibility DALYs - disability-adjusted life years
ECR - Regional Coordinating Teams (Equipas Coordenadoras Regionais) EEC - the European Economic Community
ERS - the Health Regulation Authority (Entidade Reguladora da Saúde) EU - the European Union
EU-15 - EU Member States before May 2004 EU-27- EU Member States after January 2007 GP - general practitioner
HFA - Health for All
HiAP - Health in All Policies
HIP - Hospital Infante D. Pedro [Aveiro district, Portugal] HRQoL - health-related quality of life
ICIDH - the International Classification of Impairments, Disabilities, and Handicaps INE - the National Statistics Institute (Instituto Nacional de Estatística)
INEM - the National Institute of Medical Emergency (Instituto Nacional de Emergência Médica, I.P.)
IPJ - the Portuguese Institute of the Youth (Instituto Português da Juventude, I.P.)
IPSS - Private Institutions of Social Solidarity (Instituições Particulares de Solidariedade Social)
KMO - the Kaiser-Mayer-Olkin measure of sampling adequacy NGO - non-governmental organizations
NHS - the National Health System
OECD - the Organization for Economic Cooperation and Development
PAII - the Integrated Support Program for the Elderly (Programa de Apoio Integrado a Idosos) PCA - principal component analysis
PCT - Primary Care Trusts PHC - primary health care PPP - public-private partnerships QoL - quality of life
RNCCI - the National Network of Integrated Continuous Care (Rede Nacional de Cuidados Continuados Integrados)
SEM - structural equations modeling
SLS - Local Health Systems (Sistemas Locais de Saúde) SS-QoL - the Stroke-Specific Quality of Life Scale SU - stroke unit
TEC - the Treaty establishing the European Community TFEU - the Treaty on the Functioning of the European Union UAG - Management Support Units (Unidades de Apoio à Gestão) UCC - Community Care Units (Unidades de Cuidados na Comunidade)
UCSP - Personalized Health Care Units (Unidades de Cuidados de Saúde Personalizados) UN - the United Nations
UNICEF - the United Nations Children’s Fund
URAP - Shared Assistance Resources Units (Unidades de Recursos Assistenciais Partilhados) USAID - the United States Agency for International Development
USF - Family Health Units (Unidades de Saúde Familiar) USP - Public Health Units (Unidades de Saúde Pública) VIF - Variance Inflation Factor
INTRODUCTION
An enourmous increase of chronic and long-term conditions in last decades is a global phenomenon requiring substantial organizational shifts in health and social care provision. However, organizing care interventions across a multiple-setting, in spite of unquestionable interest of policy makers, is still sporadic. Portugal is no exception in that tendency and, undoubtedly, there is a pressure on change of the collaborative paradigm between care service providers in the country. An improvement of the system effectiveness would lead to a better care delivery and meeting the system users’ needs in a more efficient way creating conditions for satisfaction with care services they experience. The present thesis defies the existing situation and aims to investigate the status of intersectoral collaborative action in Portugal directed specifically for patients who underwent cerebrovascular accident. Particularly, this work has an objective to evaluate the impact of existing partnerships on patients’ quality of life, perceived service quality and satisfaction with care, support and assistance services they experienced, and analyzing ways they function in the Portuguese context. The general premise behind this doctorate proposal is to introduce theory and develop methodology that can bring significant insights to practice in care provision. These fundamentals will be an answer to the exigency of the health and social systems improvement in Portugal, which is an object of concern of successive governing parties.
The concept of a health care system has been, since its establishment, designed to orientate the underlying population toward acute care, having as a primary concern rescue of human life written in its foundations. Decades of economic, social and demographic changes have led to significant modifications in several aspects of life and health does not constitute any difference here. Incidence and prevalence of long-term and chronic conditions are directly linked to longer life expectancy as they tend to increase with age; on the other hand, literature provides rich evidence on how unhealthy lifestyles deteriorate health status proving that, at least partially, health condition remains in hands of a person. That feeling of empowerment and responsibility for the own health state may play an important role in policy making nowadays, especially in what patients with long-term conditions concern. As long-term conditions cannot be cured but can only be controlled by medication and eventually by other treatments or therapies, if not accompanied by healthy lifestyle, they raise a risk of an unexpected severe health incident such as cerebrovascular accident. People with two or more long-term conditions are proven to need and use more health and social care services, including emergency care and community services
INTRODUCTION
(McKevitt et al., 2003). Hence, aspects of health have moved beyond of what the health sector can handle on its own.
Demographic, socio-economic and epidemiologic challenges have been pressing concern of policy makers for more than a decade and are real (Pierson, 2006). Along with an increasing demand for care services, attempts to conceptualization and measurement of service quality, patient satisfaction and quality of life have led to an intense theoretical discussion on these concepts and their relation (Badri, Attia, & Ustadi, 2009; Baker & Taylor, 1997; Marcussen, Ritter, & Munetz, 2010; Parasuraman, Zeithaml, & Berry, 1994; Raposo, Alves, & Duarte, 2008; Tam, 2007; Taylor & Cronin, 1994). Nonetheless, a few have braved to balance them against a multiple-setting context. The challenge puts thus policy makers under enormous pressure on how to organize and manage the system in eyes of budget limitations and urges ordinary projects on the economic and social policy basis. International community has gradually recognized the potential and importance of intersectoral collaborations as a fundamental element of health and social strategy. Partnering across sectors encompasses particular concepts of collaboration bearing in mind different areas of action, ranging from strategy planning, development of exact structures and processes, up to implementation of the project throughout partners and systems.
It is commonly acknowledged that patients’ reports on their health and satisfaction with quality of care services are as important as providers’ perspective and many self-reported health measures (Aragon & Gesell, 2003) among which quality of life is now considered one of the most widely regarded and extensively used (Kind, 2001; Varricchio & Ferrans, 2010). Providing quality care and assuring patient satisfaction while maintaining sustainability of health and social systems is a challenge to countries. Health care organizations operate in an extremely competitive environment and managing patient perceptions on service quality and satisfaction is mandatory to survival. A growth of customer-centered initiatives has been observed (McNulty & Ferlie, 2002), but this shift is much weaker than in other sectors. Portugal lags behind others in what efficiency and effectiveness of care concern and approaches conducting to continuity of care are only beginning to take place.
On the other hand, health is understood as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” (WHO, 1946, p. 100) and, consequently, provision of health care services is currently widening from being delivered to an ill person to approaching the general population, with efforts shifting beyond acute episodes to focus on health promotion, prevention and rehabilitation.
INTRODUCTION
For that reason, research leading to understanding and practice of patient flow, among such interventions and interactions, is required. The pressing need for collaboration inside and between several entities constituting a network of care, seen nowadays as a sort of remedy for inefficiency, lack of coordination, unacceptable long waiting lists, medical errors, patient discontent and ever growing costs supported by health and social care systems, makes this approach not only obligatory, but vital. A rise of demand for complex, multidisciplinary care services in an aging society and scarce resources increases an urgent need to provide tools and methodologies to guarantee and improve the coordination and continuity of care (Andreasson & Winge, 2010; Hebert et al., 2003).
The model of intersectoral partnerships (ISP) is based on understanding that sectoral differences are beneficial in creating innovative solutions (Charles & McNulty, 1998). As experience shows, ISP may increase social cohesion while producing sustainable structural and social change (Ministry of Health, 2005; Peake, Gallagher, & Valentine, 2008) and have demonstrated a great success when one-sector initiatives failed. The purpose of cross-sectoral collaboration moves beyond multiple organizations working together to accomplish what a single organization could not achieve. The challenge resides in encouraging engagement in a continuous dialogue that would lead to coherent, cohesive need-based planning and implementation, and sustainable, meaningful system change (Public Health Institute for the California Endowment, 1998).
In today’s world, a collaborative action is deemed to be a reasonable response exceeding the potential of competition in reaching a strong competitive position on the market. Collaborative linkages between health and other areas have been increasingly described in literature. As evidence shows, their multidisciplinary nature entails excellence requiring health professionals to adopt a change of practice in order to work effectively in different settings and to collaborate with professionals also from outside the health arena. Methods to determine a baseline, measure achievements along several axes, analyze multidimensional information and use results for future planning must somehow capture this dynamism.
Collaborative environment can be approached as a network of organizational relationships between service providers to a group of customers of interest. In the today’s networked society and economy, health and social care organizations seem to be by nature embedded in the network perspective as they represent business and personal relationships between diverse entities providing mostly fragmented care services to the population. Care provision involves currently different types of organizations, from different sectors, of different structures and
INTRODUCTION
policies. The network theory allows for analyzing these organizations and linkages existing between them from the perspective of a variety of network indicators and characteristics. Network agreements have proven to already be established in issues addressing public health matters, however, perspectives for their applications are broad and bring a promise to advance toward better health outcomes for the society involving agents across-sectors. The latter is of special relevance as the health care sector capacity has reached its limit to respond the population health care demand and health care services are nowadays strictly bound with other care services due to particularity of prevailing long-term health conditions.
A social network origins from understanding that a social phenomenon should be firstly perceived and investigated through properties of relations within and between units of analysis, instead of the properties of these units. The network approach is based on the social exchange perspective (Cook, 1977; Emerson, 1972), which points into two relevant features. Firstly, a relationship between parties is only possible when all find it profitable at any level. Second, in business relationships, cooperation is an informal process of coordinated actions between organizations (Blankenburg Holm, Eriksson, & Johanson, 1996). Network analysis understands social systems as networks of dependency relationships resulting from differential possession of scarce resources at the nodes and a structured allocation of these resources at the ties (Wellman, 1983).
While network analysis is considered to be a well-established concept, its usefulness has not reached its peak in health and social care yet (Luke & Harris, 2007). Currently, complexity and uncertainty of the environment and the surrounding dynamics make health and social care sectors not very much different from other sectors from the economy. Rutten and Boekema (2004) argue that large enterprises need to enter into the collaborative environment in order to share their knowledge and get the partners’ knowledge and skills in return, yet, the same applies to organizations involved in health and social care provision and the prospective to exchange knowledge and build synergies resorting to external contexts. Due to their interdependency, actors from the health and social care arena have been pressured to interact with other entities, having the interaction broadened from a number of organizations, in either the health or the social care, to more widespread contacts, in some cases happening on a daily basis, jointly with private or voluntary sector entities also participating in care and support services delivery. This situation has arisen to provide a response to comprehensive care needs of the country population. Collaborative networks are considered variations of social networks, where relationships between actors are of a collaborative nature. While the basic task of a network in a business relationship is to manage economic transactions between different parties of the network, one
INTRODUCTION
cannot forget that social entities belong to the organizational typology as well and a dynamics of relationships derives from interpersonal relationships between individuals composing them (Granovetter, 1973; Uzzi, 1997). Therefore, it remains equally valid to apply a micro-level approach to networks, examining patterns of connections, shared norms and personal emotions between individuals besides a commonly assumed macro-level (Leek & Canning, 2011). The Portuguese health care is built upon three coexisting and extended beyond each other systems (Barros & Simões, 2007): the National Health System (NHS), special health insurance schemes comprising certain professionals (health subsystems) and voluntary private health insurance. The National Health System exists since 1979 (Pisco, 2006) and is taxed-based providing general and universal coverage of care. The responsibility for developing health policy and managing the NHS relies on the Ministry of Health. Co-payments are required for primary care, secondary health care appointments, hospital admissions and diagnostic exams. In addition, health subsystems function as special health insurance schemes and are based on employee and employer contributions covering total or partial care. Special health insurance schemes apply to a group of professions such as civil servants, bank employees and soldiers. According to estimates, around 25% of the population benefit from a second (or more) layer of health insurance coverage through health subsystems and voluntary health insurance (Barros & Simões, 2007).
Since 2002, the Portuguese health system has adopted a number of measures to improve its performance. They have included reorganization of the public network of services, creation of long-term care units, public-private partnerships (PPP) for new hospitals, and the reform of primary care (Barros & Simões, 2007). Still, one of the major concerns in Portugal is the rise in health care expenditure. Total health spending accounted for 10.7% of GDP in 2010, more than one percentage point higher than the OECD (Organization for Economic Cooperation and Development) average of 9.5%. Health spending in Portugal increased in real terms by 2.3% per year in average between 2000 and 2009; however, this growth rate slowed down to 0.6% only in 2010 (OECD, 2012c). Despite recognized improvements in population health, this growing concern about spending levels and awareness of waste in resource allocation have motivated some policy steps toward restructuring process.
Five Regional Health Administrations (ARS - Administrações Regionais de Saúde) are in charge of implementing national health policy objectives, developing guidelines and protocols and supervising health care delivery.
INTRODUCTION
Portuguese primary health care is nowadays provided by a mix of public and private health service providers. This network incorporates primary care system integrated within the NHS, private sector primary care providers, and professionals and group of professionals in a liberal system which the NHS contracts or with which develops cooperation agreements (Barros & Simões, 2007). For a specialist or a hospital appointment (with an exception of emergencies), a general practitioner (GP) referral is necessary. General practitioners function as gatekeepers to the system.
Traditionally associated to primary health care health centers have been an object of a reform aimed at restructuring the whole primary care system. Still, at the date, the reform has not been entirely finalized. Three Primary Care Trusts (ACES - Agrupamentos de Centros de Saúde), public, administratively autonomic services constituted by a number of functional units, existed in the district of Aveiro, ACES Baixo Vouga I, ACES Baixo Vouga II and ACES Baixo Vouga III, until their merger into ACES Baixo Vouga in 2012 (Ordinance no. 394-A/2012, article 2). Hospital emergency department is, in its assumption, medical facility specialized in acute care of cases without prior appointment. However, emergency facilities have become a common choice for patients who, independently on a reason, cannot obtain a medical appointment within the primary or secondary health care. In Portugal this is a particularly serious issue and a number of non-urgent cases in an emergency room are elevated due to long waiting lists, both for GP and specialist consultations. It is estimated that around one fourth of patients in a hospital emergency department do not need immediate medical care (Barros & Simões, 2007). While the new primary care reform deems a guarantee to admission, even in case of a family doctor absence, the same does not apply to patients of traditional health centers (Szczygiel, Pinto, & Santana, 2011).
Hospitals have been subject to two types of reforms. There has been a redefinition of the existing NHS supply of hospital services resulting in closing several maternity departments and announcing new hospitals to be built under public-private partnerships. On the other hand, changes have been introduced to the public hospital model, namely to management rules and payment systems (Barros & Simões, 2007). Most hospital services are provided according to the integrated model, directly run by the NHS. Nonetheless, decentralization has not been fully possible and cooperation between the primary care services and the hospital care has not yet been satisfactorily accomplished.
Specialist care is provided within hospital ambulatory services and by private providers on a basis of agreement with the Ministry of Health. Private care provision consists of diagnosis,
INTRODUCTION
therapeutic and dental services, usually requested by the National Health System, and private consultations in private structures, for private beneficiaries (Council of the European Union, 2007).
Social care is of responsibility of the Ministry of Labor and Social Solidarity, which is also responsible for social benefits such as pensions or unemployment and incapacity benefits. There is a social action system consisting mainly of family and social services with casual benefits in form of cash, directed to population in risk or situation of poverty and social exclusion to groups such as children, youth, people with disabilities and the elderly. Benefits are personalized and their attribution depends on the discretionary decision of a social worker (Ferreira, 2003). A direct provision of social and family services is in majority of cases made by non-profit organizations, Private Institutions of Social Solidarity (IPSS - Instituições Particulares de Solidariedade Social). Social care services are provided in day centers, nursing homes and at home as personal aid and home care. Non-profit organizations manage or own 81% of social equipment and services while central and local government manages only 4%. Recently, the for-profit sector has achieved an important weight in the provision of family services, accounting for 13% (Ferreira, 2003). Day centers, nursing homes and residences for the elderly provide a broad range of services including meals, laundry services, bathing or assistance while taking medication.
In light of the increasing awareness toward changing conditions and circumstances, a network of long-term care was brought to life with an objective to face the new reality and population needs (Barros & Simões, 2007). The National Network of Integrated Continuous Care (RNCCI - Rede Nacional de Cuidados Continuados Integrados) was created by Decree Law no. 101/2006 within the scope of the Ministry of Health and the Ministry of Labor and Social Solidarity. This network combines teams providing long-term care, social support and palliative activity with its origins in communitarian services (Barros & Simões, 2007). The network delivers services in convalescence, medium-term care and rehabilitation, long-term care and maintenance, and palliative care units, and within day care and autonomy promotion.
The Portuguese population reached 10.6 million people (INE, 2011) and has been steadily increasing. While the population of the country has been rising, at the same time the number of births has been declining and the crude birth rate has been below the EU1-15 average since 1990. In 2006, life expectancy at birth was 82.3 years for females and 75.5 years for males (Barros &
