Quality and safety in hospital cancer care: A mixed methods study of next of kin involvement
Keywords:mixed methods study, next of kin involvement, hospital cancer care, cancer
Introduction: Next of kin involvement in cancer care services is complex, challenging and influenced by factors related to the organisation of the healthcare service, the resources of the next of kin, and the patient’s ability to cope with treatment and care.
As the provision of cancer care services has changed from in-patient wards to out-patient clinics, next of kin involvement practice faces new challenges. As the roles of healthcare professionals and of patients are regulated by law, the formal expectations of the next of kin role are low in Norway. However, changes in the organisation of cancer care services bring a new perspective to the role of next of kin.
The Ministry of Health Care Services requires healthcare services to acknowledge the next of kin’s need for relief, involvement, and contribution to patient care. Less is known about how to facilitate and adapt to these changes. Research confirms that next of kin involvement is a key factor in keeping a patient safe during the cancer care trajectory, but there has been little discussion of the best way to involve the next of kin.
This PhD thesis addresses the lack of knowledge on next of kin role for quality and safety in hospital cancer care, and the need for methods and tools for next of kin’s systematic involvement in these services.
Aim: The aims of the study were to explore the role of next of kin for quality and safety in hospital cancer care, and to develop a consensus- based guide for next of kin involvement in hospital cancer care. The objectives were:
- to map next of kin involvement and methods used in two hospitals from the managers’ and healthcare professionals’ perspective,
- to explore next of kin satisfaction with cancer care services and suggestion for next of kin involvement from the next of kin perspective,
- to synthesise finding and explore topics and elements relevant for a next of kin involvement guide to support quality and safety in hospital cancer
Methods: This study has utilised a mixed methods case study design, with a mixed methods convergent design at its core, including 1) a multiple embedded case study with managers and healthcare professionals (n=32) within cancer care departments in two University hospitals in Norway; 2) mapping of next of kin experiences with a questionnaire survey measuring their satisfaction with cancer care in the same two hospitals (n=238); and 3) conducting a modified Nominal group technique consensus process with a stakeholder groups (n=20) from both hospitals and next of kin representatives. The findings were integrated into a guide for next of kin involvement in hospital cancer care.
Results: Paper I reports findings from a comparative multiple embedded case study of cancer departments in two Norwegian university hospitals. The aim was to explore how managers and healthcare professionals understand the role and contribution of next of kin in cancer care, and what methods they used to involve next of kin. Data collection consisted of analysis of national policy documents, and interviews with managers and healthcare professionals collected in 2016. Results showed that although healthcare professionals in both hospitals depended on next of kin collaboration throughout the care process, only a few systematic approaches to involvement were found. Managers and healthcare professionals in both hospitals insisted on a need for more guidance for next of kin involvement in hospital cancer care. This paper illuminates nine areas in which next of kin are important to quality and safety in cancer care: information, pain treatment, transitions, observations, motivation, emotional support, physical activity, rehabilitation, daily care, nutrition, palliative and terminal care.
Paper II reports findings from the same comparative multiple embedded case study as in paper I. Data collection was the same, but the data was analysed by directed content analysis according to Hollnagel’s four potentials for resilient performance (respond, monitor, anticipate and learn). The results showed how next of kin are co-creators of resilient performance in hospitals. They complemented healthcare professionals in all four potentials for resilient performance.
Paper III reports findings from a mixed methods convergent design study. Responses were collected from 238 next of kin between November 2016 and November 2017. The aim was to explore next of kin satisfaction with hospital cancer care and to use the results as a basis for improving quality and safety in hospital cancer care. The paper applied the 20-item FAMCARE scale as a survey instrument. Open-ended questions were used for qualitative analysis. The paper combined regression analysis, exploratory factor analysis and qualitative content analysis. Results showed that next of kin in both hospitals reported high satisfaction with care. In general, results showed a higher score on satisfaction with care (1.5,1.1-2.0), p < .001 (Wilcox signed test) than with involvement related items. This indicates a lack of systematic approaches and sound methods of involvement to improve satisfaction and service quality and safety. The largest difference between the case hospitals was found in item Q15 (“The way the family is included in treatment and care decisions”), with a 30% increased probability of being satisfied or very satisfied at hospital 1 (RR 1.3, 95% CI 1.1-1.7, p = .013). The synthesis of the mixed methods results of this study disclosed that next of kin should be acknowledged as an independent part in the healthcare team around the patient, and not merely as part of the patient’s role.
Paper IV reports findings from a participatory consensus method based on a modified Nominal group technique process applied as a single one- day meeting with 20 stakeholder participants. The overarching research problem for the meeting was: What topics or elements should be included in a next of kin involvement guide to support quality and safety in hospital cancer care? This paper integrates agreed upon topics of next of kin-related challenges in hospital cancer care by presenting a guide development for use in clinical practice. The results showed key topics and elements designed for managers and healthcare professionals in the cancer care setting to guide improvement initiatives for quality and safety. The panel emphasised the importance of building systems for gathering experiences from next of kin, incorporate and use experiences for service improvement, tailor next of kin training, and support and create a culture that considers next of kin involvement as a prerequisite for sound patient care. The paper results in the Next of Kin Involvement Guide. The guide builds on the Organizing for Quality framework  and is adapted to the cancer care setting by integrating the key topics from the consensus process.
Conclusion: The thesis has demonstrated that next of kin hold a vital role for quality and safety in the cancer care in the two case hospitals (e.g. transitions, palliative care, pain treatment, motivation, daily care). It also disclosed that hospital cancer care lacked systematic next of kin involvement in the organisation of healthcare services. In addition, tools and guides for sound next of kin involvement were missing. By identifying suggested methods for involvement (e.g. system improvement, user surveys, one appointed healthcare professional for the next of kin, closer interaction with support bodies) from the managers’, healthcare professionals’, and next of kin’ perspectives, and by integrating these into the Next of Kin Involvement Guide (Figure 5.), the thesis contributes with a requested tool that has the potential to support managers’ and healthcare professionals’ future working on quality and safety in hospital cancer care.
Bate, P., P. Mendel, and G. Robert, Organizing for quality : the improvement journeys of leading hospitals in Europe and the United States. Oxford: Radcliffe Publishing Ltd, 2008.
Cancer Registry of Norway, Cancer in Norway 2018 - Cancer incidence, mortality, survival and prevalence in Norway. Oslo, 2019. Available from: cin2018.pdf (kreftregisteret.no).
Indicators, OECD., Health at a Glance 2019: OECD Indicators. OECD publishing: Paris, 2019. Available from: 4dd50c09-en.pdf (oecd-ilibrary.org).
Ministry of Health and Care Services, Leve med kreft. Nasjonal kreftstrategi (2018-2022). Norway, 2018. Available from: Leve med kreft. Nasjonal kreftstrategi (2018-2022) (regjeringen.no).
Saunes, I., Karanikolos M, and Sagan, A, Health systems in Transition. Health system review, 2020. 22(1): i-163.
Pedersen., A.W. and S. Kuhnle, The Nordic welfare state model, in The Nordic models in political science. Challenged, but still viable? Editor: Knutsen, O, Fagbokforlaget: Bergen, Norway, 2017.
Ministry of Health and Care Services, Care Plan 2020 - The Norwegian Government's plan for the care services field for 2015-2020. Norway, 2015. Available from: careplan2020_eng.pdf (regjeringen.no)
Ministry of Health and Care Services, Meld. St. 15 (2017-2018) A full life - all your life - A Quality Reform for Older Persons. Norway, 2017. Avalible from: A full life - all your life (regjeringen.no)
Ministry of Health and Care Services, NOU 2011 :17 Når sant skal sies om pårørendeomsorgen - fra usynlig til verdsatt og inkludert. Norway, 2011. Available from: NOU 2011: 17 - regjeringen.no
World Health Organization, WHO report on cancer: setting priorities, investing wisely and providing care for all. Geneva, 2020. Available from: 9789240001299-eng (2).pdf
Ministry of Health and Care Services, Meld. St. 9 (2019-2020) Kvalitet og pasientsikkerhet 2018. Norway, 2018. Available from: Meld. St. 9 (2019-2020) - regjeringen.no
Aase, K., J. Waring, and L. Schibevaag, Researching quality in care transitions: international perspectives. Switzerland: Springer, 2017.
Partanen, E., T. Lemetti, and E. Haavisto, Participation of relatives in the care of cancer patients in hospital-A scoping review. Eur J Cancer Care (Engl), 2018, 27(2): p. e12821.
Ferrell, B., J. Hanson, and M. Grant, An overview and evaluation of the oncology family caregiver project: improving quality of life and quality of care for oncology family caregivers. Psychooncology, 2013, 22(7): p. 1645-52.
Jadalla, A., et al., Family Caregiver Strain and Burden: A Systematic Review of Evidence-Based Interventions When Caring for Patients With Cancer. Clin J Oncol Nurs, 2020, 24(1): p. 31-50.
Committee on Quality of Health Care in America., Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National academy press, 2001.
Ministry of Health and Care Services, Meld.St.11 (2015-2016) Nasjonal helse-og sykehusplan (2016-2019) Norway, 2015. Available from: Meld. St. 11 (2015-2016) - regjeringen.no
Shen, Q., et al., Injuries before and after diagnosis of cancer: nationwide register based study. BMJ, 2016, 354: p. i4218.
Haukland, E.C., et al., Adverse events in hospitalised cancer patients: a comparison to a general hospital population. Acta Oncol, 2017, 56(9): p. 1218-1223.
Haukland, E.C., et al., Adverse events in deceased hospitalised cancer patients as a measure of quality and safety in end-of-life cancer care. Bmc Palliative Care, 2020, 19(1).
Hannisdal, E., et al., A risk analysis of cancer care in Norway: the top 16 patient safety hazards. Jt Comm J Qual Patient Saf, 2013, 39(11): p. 511-6.
Norwegian patient injury compensation (NPE), Statistikk for regionale helseforetak. Norsk pasientskadeerstatning: Oslo, 2017. Available from: rhf_rapport_2017_web.pdf (npe.no)
Greene, J., et al., How Patient Partners Influence Quality Improvement Efforts. Jt Comm J Qual Patient Saf, 2018, 44(4): p. 186-195.
Tranberg, M., et al., Co-afflicted but invisible: A qualitative study of perceptions among informal caregivers in cancer care. J Health Psychol, 2019, p. 1359105319890407.
Wittenberg, E., J. Goldsmith, and T.A. Parnell, Development of a communication and health literacy curriculum: Optimizing the informal cancer caregiver role. Psychooncology, 2020, 29(4): p. 766-774.
Frambes, D., et al., Informal Caregivers of Cancer Patients: Review of Interventions, Care Activities, and Outcomes. West J Nurs Res 2018; 40(7): p. 1069-1097.
Given, B.A., C.W. Given, P. Sherwood, The challenge of quality cancer care for family caregivers. Semin Oncol Nurs, 2012, 28(4): p. 205-12.
Stenberg, U., et al., Family caregivers of cancer patients: perceived burden and symptoms during the early phases of cancer treatment. Soc Work Health Care, 2014, 53(3): p. 289- 309.
Ekstedt, M., et al., Health care professionals' perspectives of the experiences of family caregivers during in-patient cancer care. J Fam Nurs, 2014, 20(4): p. 462-86.
Kim, H., M. Yi, Unmet needs and quality of life of family caregivers of cancer patients in South Korea. Asia Pac J Oncol Nurs, 2015, 2(3): p. 152-159.
Laidsaar-Powell, R., et al., Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences. Patient Educ Couns, 2016, 99(7): p. 1146-1155.
Kent, E.E., et al., Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving. Cancer, 2016, 122(13): p. 1987-95.
Teixeira, R.J., et al., The impact of informal cancer caregiving: A literature review on psychophysiological studies. Eur J Cancer Care (Engl), 2019, 28(4): p. e13042.
da Silva, M.M., and S. Lima Lda, [Participation of the family in hospital-based palliative cancer care: perspective of nurses]. Rev Gaucha Enferm, 2014, 35(4): p. 14-9.
Stenberg, U., et al., Living close to a person with cancer: a review of the international literature and implications for social work practice. J Gerontol Soc Work, 2014, 57(6-7): p. 531-55.
Lambert, S.D., J.V. Levesque, and A. Girgis, The impact of cancer and chronic conditions on caregivers and family members, in Cancer and Chronic Conditions: Addressing the Problem of Multimorbidity in Cancer Patients and Survivors, 2016, p. 159-202.
Lambert, S.D., et al., Priorities for caregiver research in cancer care: an international Delphi survey of caregivers, clinicians, managers, and researchers. Support Care Cancer, 2019, 27(3): p. 805-817.
Kim, Y., and R. Schulz, Family caregivers' strains: comparative analysis of cancer caregiving with dementia, diabetes, and frail elderly caregiving. J Aging Health, 2008, 20(5): p. 483-503.
Haukland, E.C., et al., Adverse events in deceased hospitalised cancer patients as a measure of quality and safety in end-of-life cancer care. BMC Palliat Care, 2020, 19(1): p. 76.
Johansen, S., M. Cvancarova, and C. Ruland, The Effect of Cancer Patients' and Their Family Caregivers' Physical and Emotional Symptoms on Caregiver Burden. Cancer Nurs, 2018, 41(2): p. 91-99.
Li, Q.P., Y.W. Mak, and A.Y. Loke, Spouses' experience of caregiving for cancer patients: a literature review. Int Nurs Rev, 2013, 60(2): p. 178-87.
Ugalde, A., et al., A systematic review of cancer caregiver interventions: Appraising the potential for implementation of evidence into practice. Psychooncology, 2019, 28(4): p. 687- 701.
Macdonald, M., and A. Lang, Applying Risk Society Theory to findings of a scoping review on caregiver safety. Health Soc Care Community 2014; 22(2): p. 124-33.
Applebaum, A.J., and W. Breitbart, Care for the cancer caregiver: a systematic review. Palliat Support Care, 2013, 11(3): p. 231-52.
Geng, H.M., et al., Prevalence and determinants of depression in caregivers of cancer patients: A systematic review and meta- analysis. Medicine (Baltimore), 2018, 97(39): p. e11863.
Adelman, R.D., et al., Caregiver burden: a clinical review. JAMA, 2014, 311(10): p. 1052-60.
Ge, L., and S.Z. Mordiffi, Factors Associated With Higher Caregiver Burden Among Family Caregivers of Elderly Cancer Patients: A Systematic Review. Cancer Nurs, 2017, 40(6): p. 471- 478.
Litzelman, K., et al., How Does Caregiver Well-Being Relate to Perceived Quality of Care in Patients With Cancer? Exploring Associations and Pathways. J Clin Oncol, 2016, 34(29): p. 3554- 3561.
Litzelman, K., Caregiver Well-being and the Quality of Cancer Care. Semin Oncol Nurs, 2019, 35(4): p. 348-353.
Choi, S., and J. Seo, Analysis of caregiver burden in palliative care: An integrated review. Nurs Forum, 2019, 54(2): p. 280-290.
Singer, A.E., et al., Populations and Interventions for Palliative and End-of-Life Care: A Systematic Review. J Palliat Med, 2016, 19(9): p. 995-1008.
Abuatiq, A., et al., Perceptions of Stress: Patient and Caregiver Experiences With Stressors During Hospitalization. Clin J Oncol Nurs, 2020, 24(1): p. 51-57.
Lund, L., et al., Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver's relationship to the patient: a survey. BMC Cancer 2014; 14(1): p. 541.
Ullrich, A., et al., Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients. BMC Palliat Care, 2017, 16(1): p. 31.
Palacio, C., and J.T. Limonero, The relationship between the positive aspects of caring and the personal growth of caregivers of patients with advanced oncological illness : Postraumattic growth and caregiver. Support Care Cancer, 2020, 28(7): p. 3007-3013.
Kajiwara, K., et al., The relationship between the positive aspects of caring and emotional distress among caregivers of patients with advanced oncological illness. Support Care Cancer, 2020, 28(9): p. 3983-3984.
Ornstein, K.A., et al., The Use of a Brief 5-Item Measure of Family Satisfaction as a Critical Quality Indicator in Advanced Cancer Care: A Multisite Comparison. J Palliat Med, 2017, 20(7): p. 716-721.
Dy, S.M., et al., A systematic review of satisfaction with care at the end of life. J Am Geriatr Soc, 2008, 56(1): p. 124-9.
Augustussen, M., et al., Relatives' level of satisfaction with advanced cancer care in Greenland - a mixed methods study. Int J Circumpolar Health, 2017, 76(1): p. 1335148.
Can, G., et al., A psychometric validation study of the Quality of Life and FAMCARE scales in Turkish cancer family caregivers. Qual Life Res, 2011, 20(8): p. 1319-29.
Johnsen, A.T., et al., The relatives' perspective on advanced cancer care in Denmark. A cross-sectional survey. Support Care Cancer 2012; 20(12): p. 3179-88.
Ringdal, G.I., M.S. Jordhoy, and S. Kaasa, Measuring quality of palliative care: psychometric properties of the FAMCARE Scale. Qual Life Res, 2003, 12(2): p. 167-76.
Ringdal, G.I., M.S. Jordhoy, and S. Kaasa, Family satisfaction with end-of-life care for cancer patients in a cluster randomized trial. J Pain Symptom Manage 2002; 24(1): p. 53-63.
Kristjanson, L.J., Validity and reliability testing of the FAMCARE Scale: measuring family satisfaction with advanced cancer care. Soc Sci Med, 1993, 36(5): p. 693-701.
Lo, C., et al., The FAMCARE-Patient scale: measuring satisfaction with care of outpatients with advanced cancer. Eur J Cancer, 2009, 45(18): p. 3182-8.
Teresi, J.A., et al., Performance of the Family Satisfaction with the End-of-Life Care (FAMCARE) measure in an ethnically diverse cohort: psychometric analyses using item response theory. Support Care Cancer, 2014, 22(2): p. 399-408.
Hannon, B., et al., Satisfaction with oncology care among patients with advanced cancer and their caregivers. Qual Life Res, 2013, 22(9): p. 2341-9.
Ornstein, K.A., et al., Use of an Item Bank to Develop Two Short- Form FAMCARE Scales to Measure Family Satisfaction With Care in the Setting of Serious Illness. J Pain Symptom Manage, 2015, 49(5): p. 894-903 e1-4.
Liang, L., et al., Patient engagement in hospital health service planning and improvement: a scoping review. BMJ Open, 2018, 8(1): p. e018263.
Vincent, C., and R. Davis, Patients and families as safety experts. CMAJ, 2012, 184(1): p. 15-6.
Given, B.A., Safety of Care by Caregivers of Cancer Patients. Semin Oncol Nurs, 2019, 35(4): p. 374-379.
Braithwaite, J., et al., Health Care as a Complex Adaptive System, in Resilient Health Care, E. Hollnagel , J. Braithwaite, and R.L. Wears, Editors. England: Ashgate Publishing limited: England. p. 57-73, 2013.
O'Hara, J.K., K. Aase, and J. Waring, Scaffolding our systems? Patients and families 'reaching in' as a source of healthcare resilience. BMJ Qual Saf 2019; 28(1): p. 3-6.
O'Hara, J.K., C. Canfield, and K. Aase, Patient and family perspectives in resilient healthcare studies: A question of morality or logic? Safety Science 2019; 120: p. 99-106.
Hollnagel, E., Safety-I and Safety-II : The Past and Future of Safety Management. Safety-I and Safety-II : The Past and Future of Safety Management. Farnham: Ashgate Publishing Ltd, 2014.
Hollnagel, E., Safety-II in Practice: Developing the Resilience Potentials. London:Taylor & Francis, 2017.
Wiig, S., et al., Defining the boundaries and operational concepts of resilience in the resilience in healthcare research program. BMC Health Serv Res, 2020, 20(1): p. 330.
Fylan, B., et al., A qualitative study of patient involvement in medicines management after hospital discharge: an under- recognised source of systems resilience. BMJ Qual Saf, 2018, 27(7): p. 539-546.
Wiig, S., et al., Next of Kin Involvement in Regulatory Investigations of Adverse Events that Caused Patient Death: A process evaluation (Part I - The Next of Kins' Perspective). J Patient Saf, 2019 - Volume Publish Ahead of Print .
Wiig, S., et al., Next of Kin Involvement in Regulatory Investigations of Adverse Events that Caused Patient Death: A process evaluation (Part II - The Inspectors' Perspective). J Patient Saf, 2019 - Volume Publish Ahead of Print.
Bombard, Y., et al., Engaging patients to improve quality of care: a systematic review. Implement Sci, 2018, 13(1): p. 98.
Iflaifel, M., et al., Resilient Health Care: a systematic review of conceptualisations, study methods and factors that develop resilience. BMC Health Serv Res, 2020, 20(1): p. 324.
Laidsaar-Powell, R., et al., Facilitating collaborative and effective family involvement in the cancer setting: Guidelines for clinicians (TRIO Guidelines-1). Patient Educ Couns, 2018, 101(6): p. 970-982.
Banner, D., et al., Patient and Public Engagement in Integrated Knowledge Translation Research: Are we there yet? Res Involv Engagem, 2019, 5: p. 8.
Bøckmann, K., and A. Kjellevold, Pårørende i helsetjenesten: en klinisk og juridisk innføring. 2. ed. Bergen:Fagbokforlaget, 2015.
Norwegian Directorate of Health, Veileder om pårørende i helse og omsorgstjenesten. Norway, 2017 Available from: https://www.helsedirektoratet.no/veiledere/parorendeveileder
Petkovic, J., et al., Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation. Syst Rev, 2020, 9(1): p. 21.
Mack, J.W., et al., Evaluation of Patient and Family Outpatient Complaints as a Strategy to Prioritize Efforts to Improve Cancer Care Delivery. Jt Comm J Qual Patient Saf, 2017, 43(10): p. 498- 507.
Carman, K.L., et al., Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff (Millwood), 2013, 32(2): p. 223-31.
Bate, P., and G. Robert, Experience-based design: from redesigning the system around the patient to co-designing services with the patient. Qual Saf Health Care, 2006, 15(5): p. 307-10.
Maurer, M., et al., Guide to Patient and Family Engagement: Environmental Scan Report. American Institutes for research Rockville, MD, 2012. Available from: uide to Patient and Family Engagement: Environmental Scan Report (ahrq.gov)
Aase, K., and L. Schibevaag, Researching Patient Safety and Quality in Healthcare. A Nordic perspective. Boca Raton: CRC Press. Taylor & Francis Group, 2017.
Jha, A.K., et al., Patient safety research: an overview of the global evidence. Qual Saf Health Care, 2010, 19(1): p. 42-7.
Burnett, S., et al., Prospects for comparing European hospitals in terms of quality and safety: lessons from a comparative study in five countries. Int J Qual Health Care, 2013, 25(1): p. 1-7.
Donaldson, M.S., L.T. Kohn, and J. Corrigan (eds.), To err is human : building a safer health system. Washington: National Academy Press, 2000.
Doyle, C., L. Lennox, and D. Bell. .A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open, 2013, 3(1).
The Norwegian Directorate of Health, ...Og bedre skal det bli! Nasjonal strategi for kvalitetsforbedring i Sosial- og helsetjenesten (2005-2015) : til deg som leder og utøver, Norway, 2005.
Norwegian Directorate of Health, Nasjonal handlingsplan for pasientsikkerhet og kvalitetsforbedring. 2019-2023. Norway, 2019. Avaliable from:Hdir_Rapportmal 15.11.18 (helsedirektoratet.no)
Vincent, C., Patient safety. Churchill Livingstone: Elsevier, 2006.
Wiig, S., et al., Applying different quality and safety models in healthcare improvement work: Boundary objects and system thinking. Reliability Engineering & System Safety, 2014, 125: p. 134-144.
Bate, P., P. Mendel, and G. Robert, Organizing for Quality: Inside the ''Black Box'' of Health Care Improvement in Europe and the United States. RAND Corporation, 2008. Availible from: Organizing for Quality: Inside the ''Black Box'' of Health Care Improvement in Europe and the United States (rand.org).
Hollnagel, E., J. Braithwaite, and R.L. Wears, Resilient health care. Ashgate studies in resilience engineering. Farnham: Ashgate, 2013.
Hollnagel, E., M. Sujan, J. Braithwaite, Resilient Health Care - Making steady progress. Safety Science, 2019, 120: p. 781-782.
Bergerød, I.J., Ledelse, kvalitet og pasientsikkerhet : sammenlignende case studie av to norske sykehus. 2012, University of Stavanger, Norway (Master thesis in Norwegian).
Anderson, J.E., et al., Translating research on quality improvement in five European countries into a reflective guide for hospital leaders: the 'QUASER Hospital Guide'. Int J Qual Health Car, 2019, 31(8): p. G87-G96.
Bergerød, I.J., and S. Wiig. Leading quality and patient safety improvement in Norwegian hospitals. Boca Raton:Taylor & Francis, 2016, p. 161-179.
Wiig, S., et al., Improving quality and safety in nursing homes and home care: the study protocol of a mixed-methods research design to implement a leadership intervention. BMJ Open, 2018, 8(3): p. e020933.
Johannessen, T., et al., Designing and pilot testing of a leadership intervention to improve quality and safety in nursing homes and home care (the SAFE-LEAD intervention). BMJ Open, 2019, 9(6): p. e027790.
Ellis, L.A., et al., Patterns of resilience: A scoping review and bibliometric analysis of resilient health care. Safety Science, 2019, 118: p. 241-257.
Vincent, C., and R. Amalberti, Safety in healthcare is a moving target. BMJ Qual Saf, 2015, 24(9): p. 539-40.
Hollnagel, E., R. Wears, and J. Braithwaite, From Safety-I to Safety-II: A white paper. Published simultaneously by the University of Southern Denmark, University of Florida, USA, and Macquarie University, Australia, 2015
Hosseini, S., K. Barker, and J.E. Ramirez-Marquez, A review of definitions and measures of system resilience. Reliability Engineering & System Safety, 2016, 145(Supplement C): p. 47- 61.
Bergström, J., R. van Winsen, and E. Henriqson, On the rationale of resilience in the domain of safety: A literature review. Reliability Engineering & System Safety 2015; 141(Supplement C): p. 131-141.
Woods, D.D., Essential characteristics of recilience, in Resilience Engineering: Concepts and Precepts, In: Hollnagel, E., D.D. Woods, and N.E. Leveson (ed.). Resilience Engineering. Ashgate Publishing, Ltd., 2006, p. pp. 21-34.
Fairbanks, R.J., et al., Resilience and resilience engineering in health care. Jt Comm J Qual Patient Saf , 2014, 40(8): p. 376-83.
Righi, A.W., T.A. Saurin, and P. Wachs, A systematic literature review of resilience engineering: Research areas and a research agenda proposal. Reliability Engineering & System Safety, 2015, 141(Supplement C): p. 142-152.
Ellis, B., and S.I. Herbert, Complex adaptive systems (CAS): an overview of key elements, characteristics and application to management theory. Inform Prim Care 2011; 19(1): p. 33-7.
Plsek, P.E., and T. Greenhalgh, Complexity science: The challenge of complexity in health care. BMJ, 2001, 323(7313): p. 625-8.
Robson, R., ECW in complex adaptive systems, in Resilient health care, 2015, p. 177-88.
Anderson, J.E., et al., Implementing resilience engineering for healthcare quality improvement using the CARE model: a feasibility study protocol. Pilot Feasibility Stud, 2016, 2(1): p. 61.
Wears, R.L. and A.Z. Hettinger, The tragedy of adaptability. Ann Emerg Med, 2014, 63(3): p. 338-9.
Turenne, C.P., et al., Conceptual analysis of health systems resilience: A scoping review. Soc Sci Med, 2019, 232: p. 168- 180.
Anderson, J.E., et al., Implementing resilience engineering for healthcare quality improvement using the CARE model: a feasibility study protocol. Pilot Feasibility Stud, 2016, 2: p. 61.
Berg, S.H., et al., Methodological strategies in resilient health care studies: An integrative review. Safety Science, 2018, 110: p. 300-312.
Berg, S.H., and K. Aase, Resilient characteristics as described in empirical studies on health care, in Exploring Resilience, 2019, Springer, Cham. p. 79-87.
Norwegian Directorate of Health, Veileder til forskrift om ledelse og kvalitetsforbedring i helse- og omsorgstjenesten. Norway, 2017.Available from: https://www.helsedirektoratet.no/veiledere/ledelse-og- kvalitetsforbedring-i-helse-og-omsorgstjenesten
Oyri, S.F., et al., Hospital managers' perspectives with implementing quality improvement measures and a new regulatory framework: a qualitative case study. BMJ Open, 2020, 10(12): p. e042847.
Anderson, J.E., et al., Defining adaptive capacity in healthcare: A new framework for researching resilient performance. Appl Ergon, 2020, 87: p. 103111.
Rae, A., et al., A manifesto for Reality-based Safety Science. Safety Science, 2020, 126: p. 104654.
Wears, R.L., E. Hollnagel, and J. Braithwaite. Resilient Health Care, Volume 2 : The Resilience of Everyday Clinical Work. Resilience of everyday clinical work. Farnham: Ashgate Publishing Ltd, 2015.
Lincoln, Y.S., and E.G. Guba, Naturalistic inquiry. Beverly Hills, Calif: Sage, 1985.
Phillips, D.C., The expanded social scientist's bestiary: a guide to fabled threats to, and defenses of, naturalistic social science. Lanham, Md: Rowman & Littlefield, 2000.
Polit, D.F., and C.T. Beck, Essentials of nursing research : appraising evidence for nursing practice, 9th Edition. Wolters Kluwer, 2018.
Kelle, U., Sociological explanations between micro and macro and the integration of qualitative and quantitative methods. Forum: Qualitative Social Research, 2001, 2(1).
Bryman, A., The Debate about Quantitative and Qualitative Research: A Question of Method or Epistemology? The British Journal of Sociology, 1984, 35(1): p. 75-92.
Ostlund, U., et al., Combining qualitative and quantitative research within mixed method research designs: a methodological review. Int J Nurs Stud, 2011, 48(3): p. 369-83.
Morgan, D., Integrating qualitative and quantitative methods : a pragmatic approach. United States of America: Sage Publications, Inc, 2014.
Tashakkori, A., and C. Teddlie, SAGE handbook of mixed methods in social & behavioral research. 2nd ed. Thousand Oaks, Calif: SAGE, 2010.
Creswell, J.W., A concise introduction to mixed methods research. Thousand Oaks, Calif: SAGE, 2015.
Creswell, J.W., and J.D. Creswell, Research design : qualitative, quantitative & mixed methods approaches. 5th edition. ed. Qualitative, quantitative and mixed methods approaches. Los Angeles, California: Sage, 2018.
Plano, C., L. Vicki, and J.W. Creswell, The Mixed methods reader. Los Angeles: Sage, 2008.
Carter, N., et al., The use of triangulation in qualitative research. Oncol Nurs Forum, 2014, 41(5): p. 545-7.
Morse, J.M., and L. Niehaus, Mixed method design : principles and procedures. Developing qualitative inquiry. Vol. volume 4. Walnut Creek, Calif: Left Coast Press, 2009.
Fetters, M.D., L.A. Curry, and J.W. Creswell, Achieving Achieving integration in mixed methods designs-principles and practices. Health Serv Res, 2013, 48(6 Pt 2): p. 2134-56.
Bergerod, I.J., et al., Next-of-kin involvement in improving hospital cancer care quality and safety - a qualitative cross-case study as basis for theory development. BMC Health Serv Res, 2018, 18(1): p. 324.
Bergerod, I.J., G.S. Braut, and S. Wiig, Resilience From a Stakeholder Perspective: The Role of Next of Kin in Cancer Care. J Patient Saf, 2020, 16(3): p. e205-e210.
Yin, R.K., Case study research : design and methods. 5th ed. ed. Los Angeles, Calif: SAGE, 2014.
Ministry of Health and Care Services, Meld. St. 29 (2012-2013) Future Care. Norway, 2012. Availible from: careplan2020_eng.pdf (regjeringen.no)
Ministry of Health and Care Services, National cancer strategy. Together- against cancer. Norway, 2013. Available from: i- 1158_together-against_cancer_web.pdf (regjeringen.no)
Ministry of Health and Care Services, Meld. St. 10 (2012-2013) High Quality - Safe Services - Quality and Patient safety in the Health and Care Services. Norway, 2012. Available from: Meld. St. 10 (2012-2013) - regjeringen.no
Cho, J.Y., and E. Lee, Reducing Confusion about Grounded Theory and Qualitative Content Analysis: Similarities and Differences. The Qualitative Report 2014; 19(32): p. 1-20.
Elo, S., et al., Qualitative Content Analysis. SAGE Open, 2014, 4(1).
Graneheim, U.H., B.M. Lindgren, and B. Lundman, Methodological challenges in qualitative content analysis: A discussion paper. Nurse Educ Today, 2017, 56: p. 29-34.
Hsieh, H.F., and S.E. Shannon, Three approaches to qualitative content analysis. Qual Health Res, 2005, 15(9): p. 1277-88.
Krein, S.L., et al., The influence of organizational context on quality improvement and patient safety efforts in infection prevention: a multi-center qualitative study. Soc Sci Med, 2010, 71(9): p. 1692-701.
Creswell, J.W., Research Design: Qualitative, Quantitative, and Mixed Methods Approaches. 5th Edition. SAGE Publications, 2014.
Zou, G., A modified poisson regression approach to prospective studies with binary data. Am J Epidemiol, 2004, 159(7): p. 702- 6.
Revelle, W., psych: Procedures for Personality and Psychological Research, in https://CRAN.R- project.org/package=psych Version = 1.8.4., E. Northwestern University, Illinois, USA, Editor. Evanston, Illinois, USA, 2018.
Garrido, L.E., F.J. Abad, and V. Ponsoda, A new look at Horn's parallel analysis with ordinal variables. Psychol Methods, 2013, 18(4): p. 454-74.
Horn, J.L., A Rationale and Test for the Number of Factors in Factor Analysis. Psychometrika, 1965, 30: p. 179-85.
Pallant, J., SPSS survival manual : a step by step guide to data analysis using IBM SPSS. 6th Edition. Maidenhead: McGraw Hill Education, 2016.
Barrera-Gómez, J, X. Basagaña, Models with Transformed Variables Interpretation and Software. Vol. 26. 2015. e16-7.
Graneheim, U.H., and B. Lundman, Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today, 2004,. 24(2): p. 105- 12.
Bergerod, I.J., et al., Measuring next of kin satisfaction with hospital cancer care: Using a mixed-method approach as basis for improving quality and safety. J Adv Nurs, 2020, 76(5): p. 1232-1246.
Delbecq, A.L., and A.H. Van de Ven, A Group Process Model for Problem Identification and Program Planning. The Journal of Applied Behavioral Science, 1971, 7(4): p. 466-492.
Delbecq, A.L., and A.H. Van de Ven, Group Techniques for Program Planning: A Guide to Nominal Groups and Delphi Process. Illinois: Scott Foresman Company Glenview, 1975.
Jones, J., and D. Hunter, Consensus methods for medical and health services research. BMJ 1995; 311(7001): p. 376-80.
McMillan, S.S., M. King, and M.P. Tully. How to use the nominal group and Delphi techniques. Int J Clin Pharm, 2016, 38(3): p. 655-62.
Bergerod, I.J., et al., Developing a Next-of-Kin Involvement Guide in Cancer Care-Results From a Consensus Process. Cancer Nurs, 2020, Publish Ahead of Print.
Fàbregues, S., and J.F. Molina-Azorín, Addressing quality in mixed methods research: a review and recommendations for a future agenda. Quality & Quantity, 2016, 51(6): p. 2847-2863.
O'Cathain, A., E. Murphy, and J. Nicholl, The quality of mixed methods studies in health services research. J Health Serv Res Policy, 2008, 13(2): p. 92-8.
Gelo, O., D. Braakmann, and G. Benetka, Quantitative and qualitative research: beyond the debate. Integr Psychol Behav Sci, 2008, 42(3): p. 266-90.
Tashakkori, A., and C. Teddlie, Quality of inferences in mixed methods research: Calling for an integrative framework, In: Bergman, M. (ed.), Advances in mixed methods research, London:Sage, 2008, p. 101-119.
O'Cathain, A., Assessing the quality of mixed methods research: Toward a comprehensive framework. In: Tashakkori, A, and C. Teddlie (ed.), Handbook of mixed methods in social and behavioral research, Second edition, 2010, 531: p. 531-555.
Vindrola-Padros, C., et al., The role of embedded research in quality improvement: a narrative review. BMJ Qual Saf, 2017, 26(1): p. 70-80.
Willis, R., et al., Problems with measuring satisfaction with social care. Health Soc Care Community, 2016, 24(5): p. 587- 95.
National Committees for Research Ethics in Norway, Guidelines for Research Ethics in the Social Sciences, Law and the Humanities, 2006, 26(01): p. 2015.
Marshall, M., et al., Moving improvement research closer to practice: the Researcher-in-Residence model. BMJ Qual Saf, 2014, 23(10): p. 801-5.
Marshall, M., et al., Increasing the impact of health services research on service improvement: the researcher-in-residence model. J R Soc Med, 2016, 109(6): p. 220-225.
Fulop, N., et al., Implementing changes to hospital services: factors influencing the process and 'results' of reconfiguration. Health Policy, 2012, 104(2): p. 128-35.
McEvoy, P., Interviewing colleagues: addressing the issues of perspective, inquiry and representation. Nurse Res, 2001, 9(2): p. 49-59.
Taylor, J., The intimate insider: negotiating the ethics of friendship when doing insider research. Qualitative Research, 2011, 11(1): p. 3-22.
Greene, M.J., On the inside looking in: Methodological insights and challenges in conducting qualitative insider research. The qualitative report, 2014, 19(29): p. 1-13.
Wiles, R., et al., Researching researchers: lessons for research ethics. Qualitative Research, 2006, 6(3): p. 283-299.
Longacre, M.L., L. Weber-Raley, and E.E. Kent, Toward Engaging Caregivers: Inclusion in Care and Receipt of Information and Training among Caregivers for Cancer Patients Who Have Been Hospitalized, 2020, J Cancer Educ
Blaschke, S.M., et al., Identifying priorities for cancer caregiver interventions: protocol for a three-round modified Delphi study. BMJ Open, 2019, 9(2): p. e024725.
Ministry of Health and Care Services, Meld. St. 26 (2014-2015) The primary health and care services of tomorrow - localised and integrated. Norway, 2014. Available from: Meld. St. 26 (2014- 2015) - regjeringen.no
Batalden, M., et al., Coproduction of healthcare service. BMJ Qual Saf , 2016, 25(7): p. 509-17.
Elwyn, G., et al., Coproduction: when users define quality. BMJ Qual Saf , 2020, 29(9): p. 711-716.
Greenhalgh, T., et al., Achieving Research Impact Through Co- creation in Community-Based Health Services: Literature Review and Case Study. Milbank Q , 2016, 94(2): p. 392-429.
García-Torres, F., et al., Caregiver Burden Domains and Their Relationship with Anxiety and Depression in the First Six Months of Cancer Diagnosis. International Journal of Environmental Research and Public Health, 2020, 17(11): p. 4101.
Beckett, K., et al., Embracing complexity and uncertainty to create impact: exploring the processes and transformative potential of co-produced research through development of a social impact model. Health Res Policy Syst, 2018, 16(1): p. 118.
Braithwaite, J., E. Hollnagel, and G.S. Hunte, Working Across Boundaries: Resilient Health Care, Volume 5. CRC Press, 2019.
Wu, A.W., et al., Supporting the Emotional Well-being of Health Care Workers During the COVID-19 Pandemic. Journal of Patient Safety and Risk Management, 2020, 25(3): p. 93-96.
Croskerry, P., A. Abbass, A.W. Wu, Emotional influences in patient safety. J Patient Saf 2010; 6(4): p. 199-205.
Croskerry, P., A. Abbass, and A.W. Wu. How doctors feel: affective issues in patients' safety. Lancet, 2008, 372(9645): p. 1205-1206.
Wiig, S., P.D. Hibbert, and J. Braithwaite, The patient died: What about involvement in the investigation process? Int J Qual Health Care, 2020, 32(5): p. 342-346.
Bell, S.K., et al., A Multi-Stakeholder Consensus-Driven Research Agenda for Better Understanding and Supporting the Emotional Impact of Harmful Events on Patients and Families. Jt Comm J Qual Patient Saf, 2018, 44(7): p. 424-435.
Jackson, T., et al., Patient and public involvement in research: from tokenistic box ticking to valued team members. BMC Med, 2020, 18(1): p. 79.
Leveson, N., Safety III: A Systems Approach to Safety and Resilience, 2020, Mit engineering systems lab.
Aboumatar, H., Three Reasons to Focus on Patient and Family Engagement During the COVID-19 Pandemic. Qual Manag Health Care, 2020, 29(3): p. 176-177.
Involve, N., Briefing notes for researchers: involving the public in NHS, public health and social care research. UK: INVOLVE Eastleigh, 2012.
Wiig, S., K. Aase, and R. Bal, Reflexive Spaces: Leveraging Resilience Into Healthcare Regulation and Managemen. J Patient Saf, 2020, Volume Publish Ahead of Print
Bell, S., et al., A Multi-Stakeholder Consensus-Driven Research Agenda for Better Understanding and Supporting the Emotional Impact of Harmful Events on Patients and Families. The joint commission Journal on Quality and Patient Safety, 2018,Volume 44, Issue 7, p. 424-435
Grimes, T.C., et al., Household medication safety practices during the COVID-19 pandemic: a descriptive qualitative study protocol. BMJ Open, 2020, 10(11): p. e044441