Parental involvement in children’s healthcare decisions at the hospital: A health-promoting perspective
Background: In many Western countries, parents have a legal right to be involved and influence children’s healthcare decisions, ensuring that children’s healthcare is shaped and customised as far as possible to meet the children’s and their families’ needs and preferences. It is expected that this kind of parental involvement increases patient safety and quality of care. Parental involvement in children’s healthcare decisions has been an important area of health services in several countries for many years; however, it has not been sufficiently implemented in clinical practice. Aim: This thesis’ overall aim was to gain insight, from a healthpromoting perspective, into parental involvement in decision-making about shaping and customising children’s healthcare in an interprofessional hospital environment. The purpose was to enhance the knowledge on parental involvement in these decision-making processes and to identify areas for improvement. The research aims were as following: 1) To describe and establish a synthesis of previous research on parents’ perceptions of their participation in decision-making and the challenges they face in healthcare services for children. (Paper I) 2) To explore parents’ experiences on parental involvement in decisionmaking about their child’s healthcare at the hospital and to identify how health professionals can improve parental involvement. (Paper II) 3) To explore and describe parents’ experiences of how healthprofessionals facilitate parental involvement in decision-making surrounding children’s healthcare and to identify how health professionals can improve parental involvement in the hospital. (Paper III) 4) To explore health professionals’ construction of the phenomenon parental involvement in decision-making about children’s healthcare at the hospital and identify how parental involvement can be improved. (Paper IV) Methodology: This thesis uses an explorative, sequential, descriptive, qualitative design; is situated within a constructivist research paradigm; and involves four sub-studies (Paper I-IV). Sub-study 1 is a systematic integrated review on literature, published from January 2000 to February 2011, concerning research aim 1). This review was conducted according to Whittemore and Knafl’s framework. Sub-studies 2 through 4 are explorative, descriptive, qualitative studies involving individual semi-structured interviews. Sub-studies 2 and 3 comprise a purposive sample of 12 parents. Qualitative content analysis was performed according to Graneheim, Lindgren and Lundman. Sub-study 4 recruited 12 health professionals using a purposive selection procedure. The construction of the phenomenon in the interviews was analysed according to Silverman. The cultural stories were then interpreted and organised using Graneheim et al.’s qualitative content analysis. Findings: This thesis contributes new insights into parents’ and health professionals’ roles during decision-making about shaping and customising children’s healthcare at hospital. Parents’ personal factors seemed to influence their involvement; however, health professionals’ individually tailored facilitation of parental involvement appeared to empower the parents and increase active engagement. The health professionals’ attitudes and competencies seemed to influence how they involved the parents. Important elements that seem to improve parental involvement included empathetic communication, confidence in the health professional-parent relationship, high-quality intra- and interprofessional collaboration and adequate organisational resources. Conclusion: This thesis highlights the complexity of shared decisionmaking about children’s healthcare, including parents’ and health professionals’ essential, demanding roles. These roles need to be supported according to family-centred care, the World Health Organisation’s health promotion strategy and the biopsychosocial theory. The foremost responsibility of healthcare managers is to facilitate health professionals’ parental involvement and arrange for adequate organisational resources. Furthermore, this thesis provides new knowledge of how health professionals’ practice of shared decisionmaking in paediatric clinical settings influences parents’ ability to cope with their parental role and the quality of their children’s healthcare. Increased understanding of involving both the paediatric patient and parents in these decision-making processes is required to safeguard the paediatric patients a technical, safe and justifiable healthcare that is in keeping governmental directives, evidence-based practice and the biopsychosocial theory.
Akerjordet, K., Lode, K., & Severinsson, E. (2012). Clinical nurses' attitudes towards research, management and organisational resources in a university hospital: part 1. Journal of Nursing Management, 20, 814-823. https://doi.org/10.1111/j.1365-2834.2012.01477.x
Altheide, D. L., & Johnson, J. M. (2013). Reflections on Interpretive Adequacy in Qualitative Research. In N. K. Denzin & Y. S. Lincoln (Eds), Collecting and Interpreting Qualitative Materials (pp. 381-412) (4th ed.). California: Sage Publications.
Alvesson, M., & Sköldberg, K. (2008). Tolkning och reflektion.Vetenskapsfilosofi och kvalitativ metod. (2nd ed.). Denmark: Studentlitteratur.
Antonovsky, A. (1996). The salutogenic model as a theory to guide health promotion. Health Promotion International, 1(11),11-18. https://doi.org/10.1093/heapro/11.1.11
Antonovsky, A. (2012). Helsens mysterium. Den salutogene modellen.Oslo: Gyldendal Akademisk. A Norwegian edition of Unraveling the Mystery of Health. How People Manage Stress and Stay Well (1987). San Francisco: Jossey-Bass Inc., Publishers.
Arnstein, S. R. (1969). A Ladder of Citizen Participation. Journal of the American Planning Association, 35(4), 216-224. https://doi.org/10.1080/01944366908977225
Avis, M., & Reardon, R. (2008). Understanding the views of parents of children with special needs about the nursing care their child receives when in hospital: a qualitative study. Journal of Child Health Care, 12(1), 7-17. https://doi.org/10.1177/1367493507085615
Barry, M. J., & Edgman-Levitan, S. (1998). Shared Decision Making - The Pinnacle of Patient-Centered Care. Downloaded from nejm.org 14.01.18. The New English Journal of Medicine, (2012), march, 780-781. https://doi.org/10.1056/NEJMp1109283
Bazeley, P., & Jackson, K. (2013). Qualitative data analysis with NVivo. London: Sage Publications Ltd.
Bjertnæs, Ø. A., Garratt, A., Helgeland, J., Holmboe, O., Dahle, K. A., Hanssen-Bauer, K., & Røttingen, J. (2008). Foresattes vurdering av barne- og ungdomspsykiatriske poliklinikker. Tidskrift Norsk Lægeforening, 9, 1041-1045. (In Norwegian)
Bleakley, A. (2013). Working in "teams" in an era of "liquid" healthcare: What is the use of theory? Journal of Interprofessional Care, 27, 18-26. https://doi.org/10.3109/13561820.2012.699479
Boland, L., Kryworuchko, J., Saarimaki, A., & Lawson, M. L. (2017). Parental decision making involvement and decisional conflict: a descriptive study. BMC Pediatrics, 17, 146-153. https://doi.org/10.1186/s12887-017-0899-4
Burns, N., & Grove, S. K. (2011). Understanding nursing research.
Building an evidence-based practice. Maryland Heights: Elsevier Saunders.
Bærøe, K. (2009). Priority setting in health care: A framework for reasonable clinical judgements. Journal of Medical Ethics, 35, 488-496. https://doi.org/10.1136/jme.2007.022285
Carman, K. L., Dardess, P., Maurer, M., Sofaer, S., Adams, K., Bechtel, C., & Sweeney, J. (2013). Patient and Family Engagement: A Framework for Understanding The Elements And Developing Interventions And Policies. Health Affairs, 32, 223-231. https://doi.org/10.1377/hlthaff.2012.1133
Charavel, M., Bremond, A., Moumjid-Ferdiaoui, N., Mignotte, H., & Carrere, M. O. (2001). Shared decision-making in question. Pscho-Oncology, 10, 93-102. https://doi.org/10.1002/pon.502
Charles, C., Gafni, A., & Whelan T. (1997). Shared decision-making in the medical encounter: What does it mean? (Or it takes, at least two to tango). Social Science Medicine, 44, 681-692. https://doi.org/10.1016/S0277-9536(96)00221-3
Charles, C., Gafni, A., & Whelan, T. (1999). Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model. Social Science Medicine, 49, 651-661. https://doi.org/10.1016/S0277-9536(99)00145-8
Cheng, J. (2018). My Take on the Biopsychosocial Model of Patient- Centered Care. Pain Medicine, 19, 2101-2103. https://doi.org/10.1093/pm/pny187
Choen, D. J., & Crabtree, B. F. (2008). Evaluative Criteria for Qualitative Research in Health Care: Controversies and Recommendations. Annals of Family Medicine, 6(4), 331-339. https://doi.org/10.1370/afm.818
Chorney, J., Haworth, R., Graham, M. E., Ritchie, K., Curran, J. A., & Hong, P. (2015). Understanding Shared Decision Making in Pediatric Otolaryngology. Otolaryngology-Head and Neck Surgery, 152(5), 941-947. https://doi.org/10.1177/0194599815574998
Corlett, J., & Twycross, A. (2006). Negotiation of parental roles within family-centred care: a review of the research. Journal of Clinical Nursing, 15, 1308-1316. https://doi.org/10.1111/j.1365-2702.2006.01407.x
Coyne, I. (2007). Disruption of parent participation: nurses' strategies to manage parents on children's wards. Journal of Clinical Nursing, 17, 3150-3158. https://doi.org/10.1111/j.1365-2702.2006.01928.x
Coyne, I. (2013). Families and health-care professionals' perspectives and expectations of family-centred care: hidden expectations and unclear roles. Health Expectations, 18, 796-808. https://doi.org/10.1111/hex.12104
Coyne, I. T. (1996). Parent participation: a concept analysis. Journal of Advanced Nursing, 23(4), 733-740. https://doi.org/10.1111/j.1365-2648.1996.tb00045.x
Coyne, I., & Cowley, S. (2007). Challenging the philosophy of partnership with parents: a grounded theory study. International Journal of Nursing Studies, 44, 893-904. https://doi.org/10.1016/j.ijnurstu.2006.03.002
Coyne, I., Hallström, I., & Söderbäck, M. (2016). Reframing the focus of family-centred to a child-centred care approach for children's healthcare. Journal of Child Health Care, 20(4), 495-502. https://doi.org/10.1177/1367493516642744
Daly, J., Willis, K., Small, R., Green, J., Welch, N., Kealy, M., & Hughes, E. (2007). A hierarchy of evidence for assessing qualitative health research. Journal of clinical epidemiology, 60, 43-49. https://doi.org/10.1016/j.jclinepi.2006.03.014
D'Amour, D., Ferrada-Videla, M., San Martin-Rodriguez, L., & Beaulieu, M-D. (2005). The conceptual basis for interprofessional collaboration: Core concepts and theoretical frameworks. Journal of Interprofessional Care, 19(1), 116-131. https://doi.org/10.1080/13561820500082529
Davies, R. (2010). Marking the 50th anniversary of the Platt Report: from exclusion, to toleration and parental participation in the care of the hospitalized child. Journal of Child Health Care, 14(1), 6-23. https://doi.org/10.1177/1367493509347058
Decety, J., Smith, K. E., Norman, G. J., & Halpern, J. (2014). A social neuroscience perspective on clinical empathy. World Psychiatry, 13, 233-237. https://doi.org/10.1002/wps.20146
Denzin, N. K., & Lincoln, Y. S. (2013a). Introduction: The Discipline and Practice of Qualitative Research. In: N. K. Denzin, & Y. S. Lincoln (Eds), The Landscape of Qualitative Research. (pp. 1-41) (4th ed.). California: Sage Publications.
Denzin, N. K., & Lincoln, Y. S. (2013b). Part II. The Art and Practices of Interpretation, Evaluation, and Representation. In N. K. Denzin, & Y. S. Lincoln (Eds), Collecting and Interpreting Qualitative Materials. (pp. 245-354) (4th ed.). California: Sage Publications.
Diouf, N. T., Menear, M., Robitaille, H., Guèrard, G. P., & Lègarè, F. (2016). Training health professionals in shared decision making: Update of an international environmental scan. Patient Education and Counseling, 99, 1753-1758. https://doi.org/10.1016/j.pec.2016.06.008
Dixon-Woods, M. (2016). Systematic Reviews and Qualitative Studies. In D. Silverman (Ed), Qualitative research. (pp. 379-394) (4th ed.). London: Sage Publications.
Donovan, J., & Sanders, C. (2007). Key issues in the analysis of qualitative data in health services research. In A. Bowling, S. Ebrahim (Eds), Handbook of Health Research Methods: Investigation, Measurement and Analysis. Berkshire, GB: Open University Press.
Edwards, M., Davies, M., & Edwards, A. (2009). What are the external influences on information exchange and shared decision-making in healthcare consultations: a meta-synthesis of the literature. Patient Education and Counseling, 75, 37-52. https://doi.org/10.1016/j.pec.2008.09.025
Elo, S., & Kyngäs, H. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62(1), 107-115. https://doi.org/10.1111/j.1365-2648.2007.04569.x
Elwyn, G., Durand, M. A., Song, J., Aarts, J., Barr, P.J., Berger, Z., … Van der Weijden, T. (2017). A three-talk model for shared decision making: multistage consultation Process. BMJ, 359, j4891, 1-7. https://doi.org/10.1136/bmj.j4891
Elwyn, G., Frosch, D. L., & Kobrin, S. (2016). Implementing shared decision-making: consider all the consequences. Implementation Science, 11,114 (1-10). https://doi.org/10.1186/s13012-016-0480-9
Elwyn, G., Lloyd, A., May, C., van der Weijden, T., Stiggelbout, A., Edwards, A., … Epstein, R. (2014). Collaborative deliberation: A model for patient care. Patient Education and Counseling, 97, 158-164. https://doi.org/10.1016/j.pec.2014.07.027
Elwyn, G., Frosch, D., Thomson, R., Joseph-Williams, N., Lloyd, A, Kinnersley, P., … Michael Barry, M. (2012). Shared Decision Making: A Model for Clinical Practice. Journal of General Internal Medicine, 27(10), 1361-1367. https://doi.org/10.1007/s11606-012-2077-6
Engel, G. L. (1977). The Need for a New Medical Model: A Challenge for Biomedicine. Science, 126, 129-136. https://doi.org/10.1126/science.847460
Enosh, G., & Ben-Ari, A. (2016). Reflexivity: The Creation of Liminal Spaces-Researchers, Participants, and Research Encounters. Qualitative Health Research, 26(4), 578-584. https://doi.org/10.1177/1049732315587878
Entwistle, V. A., & Watt, I. S. (2006). Patient involvement in treatment decision-making: The case for a broader conceptual framework. Patient Education and Counseling, 63, 268-278. https://doi.org/10.1016/j.pec.2006.05.002
Eriksson, M., & Lindström, B. (2007). Antonovsky's sense of coherence scale and its relation with quality of life: a systematic review. Journal of Epidemiol Community Health, 61, 938-944. https://doi.org/10.1136/jech.2006.056028
Eriksson, M., & Lindström, B. (2008). A salutogenic interpretation of the Ottawa Charter. Health Promotion International, 23, 190- 199. https://doi.org/10.1093/heapro/dan014
Espezel, H., & Canam, C. J. (2003). Parent-nurse interactions: care of hospitalized children. Journal of Advanced Nursing, 44(1), 34- 41. https://doi.org/10.1046/j.1365-2648.2003.02765.x
Feenstra, B., Boland, L., Lawson, M. L., Harrison, D., Kryworuchko, J., Leblanc, M., & Stacey, D. (2014). Interventions to support children's engagement in health-related decision: a systematic review. BMC Pediatrics, 14, 109-118. https://doi.org/10.1186/1471-2431-14-109
Fiks, A. G., & Jimenez, M. E. (2010). The promise of shared decision- making in paediatrics. Acta Paediatrica, 99(10), 1464-1466. https://doi.org/10.1111/j.1651-2227.2010.01978.x
Foster, M., Whitehead, L., & Maybee, P. (2010). Parents' and health professionals' perceptions of family centred care for children in hospital, in developed and developing countries: A review of the literature. International Journal of Nursing Studies, 47(9), 1184-1193. https://doi.org/10.1016/j.ijnurstu.2010.05.005
Graham, I. D., Logan, J., Harrison, M. B., Straus, S. E., Tetroe, J., Caswell, W., & Robinson, N. (2006). Lost in Knowledge Translation: Time for a Map? The Journal of Continuing Education in the Health Professions, 26(1), 13-24. https://doi.org/10.1002/chp.47
Graneheim, U. H., Lindgren, B. M., & Lundman, B. (2017). Methodological challenges in qualitative content analysis: A discussion paper. Nurse Education Today, 56, 29-34. https://doi.org/10.1016/j.nedt.2017.06.002
Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105-112. https://doi.org/10.1016/j.nedt.2003.10.001
Groven, G., Danielsen, K., Holte, T., & Helgeland, J. (2006). Pårørendes erfaringer med somatiske barneavdelinger - hovedresultater fra nasjonal undersøkelse. (Acessed 11.06.10). http://www.kunnskapssenteret.no. (In Norwegian)
Halkier, B. (2010). Fokusgrupper. Oslo: Gyldendal Norsk Forlag.
Hallström I., & Elander, G. (2004). Decision-making during hospitalization: parents' and children's involvement. Journal Clinical Nursing, 13, 367-375. https://doi.org/10.1046/j.1365-2702.2003.00877.x
Hallström, I., Runeson, I., & Elander, G. (2002). An observational study of the level at which parents participate in decisions during their child's hospitalization. Nursing Ethics, 9, 202-214. https://doi.org/10.1191/0969733002ne499oa
Halpern, J. (2014). From idealized clinical empathy to empathic communication in medical care. Medicine, Health Care and Philosophy, 17, 301-311. https://doi.org/10.1007/s11019-013-9510-4
Harrison, T. M. (2010). Family-Centered Pediatric Nursing Care: State of the Science. Journal of Pediatric Nursing, 25, 335-343. https://doi.org/10.1016/j.pedn.2009.01.006
Holstein, J. A., & Gubrium, J. F. (2016). Narrative Practice and the Active Interview. In D. Silverman (Ed), Qualitative research. (pp. 67-82) (4th ed.). London: Sage Publications.
Jackson, C., Cheater, F. M., & Reid, I. (2008). A systematic review of decision support needs of parents making child health decisions. Health Expectations, 11, 232-251. https://doi.org/10.1111/j.1369-7625.2008.00496.x
Jimenez, M.E., Barg, F. K., Guevara, J. P., Gerdes, M., & Fiks, A. G. (2013). The impact of parental health literacy on the early intervention referal process. Journal of Health Care for Poor and Underserved, 24(3), 1053-1062. https://doi.org/10.1353/hpu.2013.0141
Jolly, J., & Shields, L. (2009). The evolution of family-centered care. Journal of Pediatric Nursing, 24, 164-170. https://doi.org/10.1016/j.pedn.2008.03.010
Kallio, H., Pietilä, A., Johnson, M., & Kangasniemi, M. (2016). Systematic methodological review: developing a framework for a qualitative semi-structured interview guide. Journal of Advanced Nursing, 72(12), 2954-2965. https://doi.org/10.1111/jan.13031
Karl, S. R., & Holland, J. C. B. (2015). The Roots of Psychosomatic Medicine II: George L. Engel. Psychosomathics, 56, 630-633. https://doi.org/10.1016/j.psym.2015.07.012
Kelly, K. P., Mowbray, C., Pyke-Grimm, K., & Hinds, P. S. (2017). Identifying a conceptual shift in child and adolescent-reported treatment decision making: "Having a say, as I need at this time". Pediatric Blood &Cancer, 64, 1-8. https://doi.org/10.1002/pbc.26262
Khan, A., Coffey, M., Litterer, K. P., Baird, J. D., Furtak, S. L., Garcia, B.M., … the Patient and Family Centered I-PASS Study Group. (2017). Families as Partners in Hospital Error and Adverse Event Surveillance. JAMA Pediatrics, 171(4), 372-381. https://doi.org/10.1001/jamapediatrics.2016.4812
Knafl, K., & Whittemore, R. (2017). Top 10 Tips for Undertaking Synthesis Research. Reasearch in Nursing & Health, 40, 189- 193. https://doi.org/10.1002/nur.21790
Kon, A. (2010). The Shared Decision-Making Continuum. The Journal of the American Medical Association, 304(8), 903-904. https://doi.org/10.1001/jama.2010.1208
Körner, M., Ehrhardt, H., & Steger, A-K. (2013). Designing an interprofessional training program for shared decision making. Journal of Interprofessional Care, 27, 146-154. https://doi.org/10.3109/13561820.2012.711786
Kristiansen, I. S., & Mooney, G. (2004). Evidence-Based Medicine. In its Place. New York: Routledge https://doi.org/10.4324/9780203493694
Land, V., Parry, R., & Seymour, J. (2017). Communication practices that encourage and constrain shared decision making in health-care encounters: Systematic review of conversation analytic research. Health Expectations, 20, 1228-1247. https://doi.org/10.1111/hex.12557
Law of health professionals (1999). Lov om helsepersonell (helsepersonelloven). (acessed 30.09.18) https://lovdata.no/dokument/NL/lov/1999-07-02- 64/%25C2%25A75#%C2%A75 (In Norwegian)
Légaré, F., Adekpedjou, R., Stacey, D., Turcotte, S., Kryworuchko, J., Graham, I.D., … Donner-Banzhoff, N. (2018). Interventions for increasing the use of shared decision making by healthcare professionals (Review). Cochrane Library. Cochrane Database of Systematic Reviews. https://doi.org/10.1002/14651858.CD006732.pub4
Légaré, F., Ratte', S., Gravel, K., & Graham, I. D. (2008). Barriers and facilitators to implementing shared decision-making in clinical practice: Update of a systematic review of health professionals' perceptions. Patient Education and Counseling, 73, 526-535. https://doi.org/10.1016/j.pec.2008.07.018
Légaré, F., Stacey, D., Pouliot, S., Gauvin, F-P., Desroches, S., Kryworuchko, J., …. Graham, I. D. (2011). Interprofessionalism and shared decision-making in primary care: a stepwise approach towards a new model. Journal of Interprofessional Care, 25, 18- 25. https://doi.org/10.3109/13561820.2010.490502
Lincoln, Y. S., Lynham, S. A., & Guba, E. G. (2013). Paradigmatic Controversies, Contradictions, and Emerging Confluences, Revisited. In N. K. Denzin, & Lincoln, Y. S. (Eds), The Landscape of Qualitative Research. (pp.199-265), (4th ed.). California: Sage Publications.
Lindström, B. (2018). Workshop salutogenesis and the future of health promotion and public Health. Scandinavian Journal of Public Health, 46(20), 94-98. https://doi.org/10.1177/1403494817743902
Lindström, B., & Eriksson, M. (2010). The Hitchhiker's guide to salutogenesis. Salutogenic pathways to health promotion. Helsinki: Folkhälsan research Center.
Lipstein, E. A., Brinkman, W. B., & Britto, M. T. (2012). What Is Known about Parents' Treatment Decisions? A Narrative Review of Pediatric Decision Making. Medical Decision Making, 32, 246-258.https://doi.org/10.1177/0272989X11421528
Lown, B. A. (2016). A social neuroscience-informed model for teaching and practising compassion in health care. Medical Education, 50, 332-342.https://doi.org/10.1111/medu.12926
Lown, B. A., Kryworuchko, J., Bieber, C., Lillie, D. M., Kelly, C., Berger, B., & Loh, A. (2011). Continuing professional development for interprofessional teams supporting patients in healthcare decision making. Journal of Interprofessional Care, 25(6), 401-408.https://doi.org/10.3109/13561820.2011.583563
Makoul, G., & Clayman, M. L. (2006). An integrative model of shared decision making in medical encounters. Patient Education and Counseling, 60, 301-312.https://doi.org/10.1016/j.pec.2005.06.010
Malterud, K. (2008). Kvalitative metoder i medisinsk forskning. Oslo: Universitetsforlaget. (In Norwegian)
Malterud, K., Siersma, V. D., & Guassora, A. D. (2016). Sample Size in Qualitative Interview Studies: Guideed by Information Power. Qualitative Health Research, 26(13), 1753-1760.https://doi.org/10.1177/1049732315617444
Massimo, L. M., Wiley, T. J., & Casari, E. F. (2004). From informed consent to shared consent: a developing process in paediatric oncology. The Lancet Oncology, 5, 384-387.https://doi.org/10.1016/S1470-2045(04)01496-2
Miller, J., & Glassner, B. (2016). The 'Inside' and the 'Outside': Finding Realities in Interviews. In D. Silverman (Ed), Qualitative research (pp. 51-66) (4th ed.). London: Sage Publications.
Naidoo, J., & Wills, J. (2009). Foundations for Health Promotion. Public health and health promotion practice. (3d ed.). Bailliére Tindall, Elsevier.
National health and hospital plan (2015). Nasjonal helse- og sykehusplan (2016-2019). Meld. St. 11 (2015-2016). (acessed 25.08.17) https://regjeringen.no/no/dokumenter/i-korte-trekk-nasjonal- helse- og sykehusplanny-side/id2462251/ (In Norwegian)
Nilsen, P. (2015). Making sense of implementation theories, models and frameworks. Implementation science, 10, 53.https://doi.org/10.1186/s13012-015-0242-0
Nutbeam, D. (2009). Defining and measuring health literacy: what can we learn from literacy studies? International Journal of Public Health, 54, 303-305.https://doi.org/10.1007/s00038-009-0050-x
Ofstad, E. H., Frich, J. C., Schei, E., Frankel, R. M., & Gulbrandsen, P. (2014). Temporal characteristics of decisions in hospital encounters: A threshold for shared decision making? A qualitative study. Patient Education and Counseling, 97, 216- 222.https://doi.org/10.1016/j.pec.2014.08.005
Ostrom, E. (1996). Crossing the great divide: Coproduction, synergy, and development. World Development, 24(6), 1073.https://doi.org/10.1016/0305-750X(96)00023-X
Papadimitriou, G. (2017). The "Biopsychosocial Model": 40 years of application in Psychiatry. Psychiatriki, 28(2), 107-110.https://doi.org/10.22365/jpsych.2017.282.107
Park, E. S., & Choe, I. Y. (2018). Shared decision-making in the paediatric ﬁeld: a literature review and concept analysis. Scandinavian Journal of Caring Sciences, 32, 478-489.https://doi.org/10.1111/scs.12496
Patients' Rights Act. The Act of 2 July. (1999). No. 63 relating to Patient's Rights. (accessed 20.02.17) http:app.uio.no/ub/ujur/oversatte-lover/data/lov-19990702-063- eng.pdf
Peräkylä, A. (2016). Validity in Qualitative Research. In D. Silverman (Ed), Qualitative research (pp. 413-428) (4th ed.). London: Sage Publications.
Polit, D. F., & Beck, C. T. (2010). Generalization in quantitative and qualitative research: Myths and strategies. International Journal of Nursing Studies, 47, 1451-1458.https://doi.org/10.1016/j.ijnurstu.2010.06.004
Power, N., & Franck, L. (2008). Parent participation in the care of hospitalized children: a systematic review. Journal of Advanced Nursing, 62, 622-641.https://doi.org/10.1111/j.1365-2648.2008.04643.x
Power, T. E., Swartzman, L. C., & Robinson, J. W. (2011). Cognitive- emotional decision making (CEDM): a framework of patient medical decision making. Patient Education and Counseling, 83, 163-169.https://doi.org/10.1016/j.pec.2010.05.021
Reeves, S., Pelone, F., Harrison, R., Goldman, J., & Zwarenstein, M. (2017). Interprofessional collaboration to improve professional practice and healthcare outcomes. Cochrane Database of Systematic Reviews, Issue 6. Art. No.: CD000072.https://doi.org/10.1002/14651858.CD000072.pub3
Regulations of children's hospitalisation (2000). Forskrift om barns opphold i helseinstitusjon. (acessed 01.01.19). https://lovdata.no/dokument/SF/forskrift/2000-12-01- 1217?q=forskrift%20om%20barns%20opphold%20i (In Norwegian)
Sackett, D. L., Rosenberg, W. M. C., Gray, J. A. M. Haynes, R. B., & Richardson, W. S. (1996). Evidence based medicine: what it is and what it isn't. British Medical Journal, 312, 71-72.https://doi.org/10.1136/bmj.312.7023.71
San Martin-Rodriquez, L., Beaulieu, M-D., D'Amour, D., & Ferrada- Videla, M. (2005). The determinants of successful collaboration: A review of theoretical and empirical studies. Journal of Interprofessional Care, 19(1), 132-147.https://doi.org/10.1080/13561820500082677
Shields, L. (2010). Models of care. Questioning family-centred care. Journal of Clinical Nursing, 19, 2629-2638.https://doi.org/10.1111/j.1365-2702.2010.03214.x
Shields, L., Pratt, J., & Hunter, J. (2006). Family centred care: a review of qualitative studies. Journal of Clinical Nursing, 15, 1317- 1323.https://doi.org/10.1111/j.1365-2702.2006.01433.x
Shields, L., Zhou, H., Pratt, J., Taylor, M., Hunter, J., & Pascoe, E. (2012). Family-centred care for hospitalised children aged 0-12 years. Cochrane Database of Systematic Reviews (10). https://doi.org/10.1002/14651858.CD004811.pub3
Silverman, D. (2013). Doing qualitative research (4th ed.). London: Sage Publications.
Silverman, D. (2014). Interpreting qualitative data (5th ed.). London: Sage Publications.
Silverman, D. (2016). Introducing Qualitative Research. In D. Silverman (Ed), Qualitative research. (pp. 3-14), (4th ed.). London: Sage Publications.
Smith, J., Cheater, F., Bekker, H., & Chatwin, J. (2013). Are parents and professionals making shared decisions about a child's care on presentation of a suspected shunt malfunction: a mixed method study? Health Expectations, 18, 1299-1315.https://doi.org/10.1111/hex.12106
Smith, J., Swallow, V., & Coyne, I. (2015). Involving parents in managing their child's long-term condition - a concept synthesis of family-centred care and partnership-in-care. Journal of Pediatric Nursing, 30, 143-159.https://doi.org/10.1016/j.pedn.2014.10.014
Solomons, N. M., & Spross, J. S. (2011). Evidence-based practice barriers and facilitators from a continuous qualitative improvement perspective: an integrative review. Journal of Nursing Management, 19, 109-120.https://doi.org/10.1111/j.1365-2834.2010.01144.x
Sorensen, K., Pelikan, J. M., Rothlin, F., Ganahl, K., Slonska, Z., Doyle, G., ... & Brand, H. (2015). Health literacy in Europe: comparative results of the European health literacy survey (HLS-EU). European Journal of Public Health, 5, 1-6.https://doi.org/10.1093/eurpub/ckv043
Stewart, J. L., Pyke-Grimm, K. A., & Kelly, K. P. (2005). Parental treatment decision making in pediatric oncology. Seminars in Oncology Nursing, 21 (2), 89-97.https://doi.org/10.1016/j.soncn.2004.12.003
Stewart, J. L., Pyke-Grimm, K. A., & Kelly, K. P. (2012). Making the right decision for my child with cancer: the parental imperative. Cancer Nursing, 35, 419-428.https://doi.org/10.1097/NCC.0b013e3182431071
Tallon, M. M., Kendall, G. E., & Snider, P. D. (2015a). Development of a measure for maternal confidence in knowledge and understanding and examination of psychosocial influences at the time of a child's heart surgery. Journal for Specialist in Pediatric Nursing, 20, 36-48. https://doi.org/10.1111/jspn.12096
Tallon, M. M., Kendall, G. E., & Snider, P. D. (2015b). Rethinking family-centred care for the child and family in hospital. Journal of Clinical Nursing, 24, 1426-1435. https://doi.org/10.1111/jocn.12799
Taylor, S. E. (2006). Health psychology. Boston: McGraw-Hill.
Teng, C. I., Chang, S. S., & Hsu, K. H. (2009). Emotional stability of nursing: impact on patient safety. Journal of Advanced Nursing, 5(10), 2088-2096. https://doi.org/10.1111/j.1365-2648.2009.05072.x
The Norwegian Directorate of Social and Health (2005). Sosial- og helsedirektoratet (2005) .... og bedre skal det bli. Nasjonal strategi for kvalitetsforbedring i Sosial- og Helsetjenesten (2005- 2015). (Veileder IS-1162). (In Norwegian)
The Norwegian Ministry of Health and Care Services (2011). Helse- og omsorgsdepartementet (2011). Nasjonal helse- og omsorgsplan (2011-2015). Meld. St. 16 (2010-2011). (In Norwegian)
The Norwegian Ministry of Health and Care Services (2012). Helse- og omsorgsdepartementet (2012). God kvalitet - trygge tjenester. Kvalitet og pasientsikkerhet i helse- og omsorgstjenesten. Meld. St. 10 (2012-2013). (In Norwegian)
The Norwegian Ministry of Health and Care Services (2014). Helse- og omsorgsdepartementet (2014). Kvalitet og pasientsikkerhet 2013. Meld. St. 11 (2014-2015). (In Norwegian)
The Norwegian Ministry of Social and Health Services (1999). Sosial- og helsedepartementet. (1999). Om verdier for den norske helsetjenesten. St.meld. nr. 26 (1999-2000). (In Norwegian)
Thompson, A. G. H. (2007). The meaning of patient involvement and participation in health care consultations: A taxonomy. Social Science & Medicine, 64, 1297-1310. https://doi.org/10.1016/j.socscimed.2006.11.002
Tuckett, A. (2004). Qualitative research sampling: the very real complexities. Nurse Researcher, 12(1), 47-60. https://doi.org/10.7748/nr2004.07.12.1.47.c5930
Tyreman, S. (2014). Finding the system in the System. Philosophy, Psychiatry & Psychology, 21(3), 207-209. https://doi.org/10.1353/ppp.2014.0042
Uhl, T., Fisher, K., Docherty, S. L., & Brandon, D. H. (2013). Insights into Patient and Family-Centered Care Through the Hospital Experiences of Parents. Journal of Obstetric, Gynecologic & Neonatal Nursing, 42, 121-131. https://doi.org/10.1111/1552-6909.12001
Uniacke, S., Browne, T. K., & Shields, L. (2018): How should we understand family-centred care? Journal of Child Health Care, 22(3), 460-469. https://doi.org/10.1177/1367493517753083
Wade, D. T., & Halligan, P. W. (2017). The biopsychosocial model of illness: a model whose time has come. Clinical Rehabilitation, 31(8), 995 -1004. https://doi.org/10.1177/0269215517709890
Wangmo, T., De Clercq, E., Ruhe, K. M., Beck-Popovic, M., Rischewski, J., Angst, … Elger, B. S. (2017). Better to know than to imagine: Including children in their health care. AJOB Empirical Bioethics, 8(1), 11-20. https://doi.org/10.1080/23294515.2016.1207724
Watts, R., Huaqiong, Z., Shields, L., Taylor, M., Munns, A., & Ngune, I. (2014). Family-centered care for hospitalized children aged 0- 12 years: a systematic review of qualitative studies. JBI Database of Systematic Reviews & Implementation Report, 12(7), 204-283. https://doi.org/10.11124/jbisrir-2014-1683
Whall, A. L., Sinclair, M., & Parahoo, K. (2006). A philosophic analysis of evidence-based nursing: recurrent themes, metanarratives, and exemplar cases. Nursing Outlook, 54, 30-35. https://doi.org/10.1016/j.outlook.2004.11.004
Whittemore, R. (2005). Combining Evidence in Nursing Research Methods and Implications. Nursing Research, 54(1), 56-62. https://doi.org/10.1097/00006199-200501000-00008
Whittemore, R., & Knafl, K. (2005). The integrative review: updated methodology. Journal of Advanced Nursing, 52(5), 546-553. https://doi.org/10.1111/j.1365-2648.2005.03621.x
Wirtz, V., Cribb, A., & Barber, N. (2006). Patient-doctor decision- making about treatment within the consultation - a critical analysis of models. Social Science & Medicine, 62, 116-124. https://doi.org/10.1016/j.socscimed.2005.05.017
World Health Organization (2009). Milestones in Health Promotion. Statements from Global Conferences. (accessed 25.07.17) http://www.who.int/healthpromotion/Milestones_Health_Promo tion_05022010.pdf
World Medical Association (2013). Ethical Principles for Medical Research Involving Human Subjects. (accessed 14.11.17) Available at: wma.net. https://doi.org/10.1515/9783110208856.233
Wyatt, K. D., List, B., Brinkman, W.B., Lopez, G. P., Asi, N., Erwin, P., … LeBlanc, A. (2015). Shared Decision Making in Pediatrics: A systematic Review and Meta-analysis. Academic Pediatrics, 15, 573-583. https://doi.org/10.1016/j.acap.2015.03.011