The way in which the figure of the caregiver can be portrayed as a necessary support for the patient is also discussed. Testimonies from digital platforms, fictional universes, examples from everyday life and from public and private organizations provide insight into the relationships between patients, caregivers and carers.
Table of Contents
Preface xi
Laurence CORROY and Christelle CHAUZAL-LARGUIER
Author Biographies xxv
Part 1 Stakes and Opportunities of Digital and Playful Devices for Patients, Caregivers and Care Providers 1
Chapter 1 The Use of Games as an Innovative Prevention Method for Discussing Work with Hospital Healthcare Staff 3
Julie PAVILLET and Aurélia DUMAS
1.1 Introduction 3
1.2 Methodology of the research 5
1.2.1. Collaborative research and participatory methodology .. 5
1.2.2 Exploratory survey in the USLD: some elements of the organizational context 7
1.3 The use of games as a method of occupational health prevention 9
1.4 Results of the exploration and experimentation stage 11
1.4.1 Contributions of the game: gaps and displacements 11
1.4.2 The game to approach the relational and affective dynamics within the construction of the caregiver and the work group 13
1.5 Conclusion and perspectives 17
1.6 References 18
Chapter 2 The Digital Space as a Resource for Accessing an Alternative Discourse of Caregivers on Caregiving 21
Nathalie GARRIC and Frédéric PUGNIÈRE-SAAVEDRA
2.1 Introduction 21
2.2 The caregiver: a suffering social figure whose status has recently been recognized 23
2.3 A digital field constructed in correlation with a reference corpus of caregivers’ words 25
2.4 Theoretical framework 27
2.5 Some results 29
2.5.1 The caregiver: an actor who receives little attention in the media and political arena 29
2.5.2 A strong singularity of the digital corpus in a positive dimension 32
2.6 Division and/or continuity of the caregiver status constructed by blogs 38
2.7 Conclusion 43
2.8 References 44
Chapter 3 Co-design with Patients with Chronic Diseases for Information and Training Materials Related to Connected Implants 47
Ambre DAVAT and Fabienne MARTIN-JUCHAT
3.1 Introduction 47
3.2 Co-design based on affect stories 49
3.3 Application to the RealWorld4Clinic project 51
3.3.1 Constitution of the group 51
3.3.2 Course of the sessions 52
3.3.3 Identification of issues through affect stories 52
3.3.4 Main questions and development of hypotheses 53
3.3.5 Development of the method 54
3.3.6 Review of the study’s progress 54
3.4 Assessment of the first phase of the study 56
3.4.1 Sample 56
3.4.2. Patient profile/temporality in the adaptation to the disease 57
3.4.3 Acceptance/rejection of implants 59
3.4.4 Sources of anxiety related to implantation 60
3.4.5 Impact of telemonitoring on the care pathway 60
3.5 Conclusion: co-design, one of the conditions for an ethics of innovation in health? 61
3.6 Acknowledgments 62
3.7 References 63
Chapter 4 Institutional Communication in Healthcare Organizations as a Marker of Patient Orientation: The Case of Institutional Websites 65
Corinne ROCHETTE and Emna CHERIF
4.1 Introduction 65
4.2 Patient orientation, between culture and behavior 67
4.3 Methodology and research proposals 70
4.4 Main results 72
4.5 Discussion and conclusion 75
4.6 Appendix: Terminology reminders 77
4.7 References 78
Chapter 5 Digital Communication and Merchandising for Caregivers: The Case of Thermal Baths 81
Christelle CHAUZAL-LARGUIER and Alexis MEYER
5.1 Introduction 81
5.2 The question of adapting the spa offer to a specific audience 86
5.2.1 The caregiver: a legitimate target for the spa industry 86
5.2.2 Short-term thermal care for caregivers in search of differentiating content 89
5.3 The seduction strategy of caregivers in question 92
5.3.1. The informational approach to communication is preferred .. 92
5.3.2 Good referencing of the websites of thermal establishments is poorly exploited 95
5.4 Conclusion 98
5.5 References 100
Part 2 Narrative Medicine and Patient and Caregiver Hermeneutics 103
Chapter 6 When the Doctor Becomes a Patient: The Relationship Between the Caregiver and the Breast Cancer Patient in Demain nous appartient 105
Laurence CORROY and Emilie ROCHE
6.1 Introduction 105
6.2 Narrative of the disease 107
6.3 Emotional journey of the patient physician 109
6.4 The role of caregivers 115
6.5 Conclusion 123
6.6 References 124
Chapter 7. Taming Cancer. Affected Bodies, Mirrored Emotions and Challenges for Patients and Their Loved Ones 127
Anne VEGA and Ibtissem BEN DRIDI
7.1 Introduction - a limited recognition of the role of relatives? 127
7.2 The invisible work of family caregivers in the care trajectory of the patient 129
7.2.1 Memorizing and/or translating and coordinating consultations 130
7.2.2 Accompanying: trying to reduce anxiety, restoring image and dignity 131
7.2.3 (Re)building or unraveling relationships: limits to commitments 133
7.3 The centrality and vitality of caregivers 135
7.3.1. To have ties and networks of medical inter-knowledge 135
7.3.2 Having administrative and financial assistance 136
7.3.3 Behind the duty to support: helping keep morale up, social utility and trying to survive 137
7.4 Conclusion - helping to maintain dignity and morale: another form of empowerment to be recognized 141
7.5 References 142
Chapter 8 About Long Illnesses Family Caregivers: Actors and Producers of Care and Health The Case of Algeria 145
Aicha BENABED
8.1 Introduction 145
8.2 Family help in the Algerian context 148
8.3. Family help and secular care: an alternative to medical work .. 150
8.4 The motivations for taking care of the sick relative 156
8.5 The impact of care on the health of the patient’s relative 157
8.6 Conclusion 159
8.7 References 159
Chapter 9 Affective Dynamics of Caregivers to Those with Alzheimer’s and Resilience Self-(re)Construction through Two Devices: A Digital Platform and a Biographical Interview 161
Abdelhadi BELLACHHAB, Olga GALATANU and Valérie ROCHAIX
9.1 Introduction 162
9.2 The biographical interview versus the discussion forum: two distinct devices of self-construction 163
9.3 Spaces of expression 165
9.3.1 The forum, constrained freedom and conventional authenticity? 165
9.3.2 The interview, a “position of social gaze” 167
9.4 Theoretical and epistemological framework 168
9.4.1 Definitions of concepts: affects, emotions and feelings 170
9.4.2 Classes of emotions 171
9.5 The emotional experience of caregivers through two communication devices 173
9.5.1 Tool-based approach to the corpus 173
9.5.2 The emotional experience reconstructed lexically in the forum 177
9.5.3 The emotional experience reconstructed lexically in the interviews 181
9.6 Conclusion 184
9.7 References 185
Chapter 10 Co-constructing a Territory that Provides Assistance 189
André SIMONNET, Julia GUDEFIN and Maya CHABANE
10.1 Introduction 189
10.2 For a territory that helps caregivers: Escale des aidants 193
10.3 A reflective approach in the sociology of action 196
10.3.1. Workshops by and for caregivers as a research field .. 196
10.3.2 Between tools and first results, what are the challenges of aid at the local level? 198
10.4 Conclusion: what place for caregivers in the health and social systems? 203
10.5 References 206
List of Authors 207
Index 211
