Path. Å forstå kreftpasienters behandlingsforløp | NAFKAM

Path. Å forstå kreftpasienters behandlingsforløp

Denne beskrivelsen er i hovedsak på engelsk.

Å forstå kreftpasienters behandlingsforløp - en helhetlig beskrivelse av valg og resultat av skolemedisinske, komplementære og alternative behandlingstiltak hos kreftpasienter.

Prosjektleder: Gro Berntsen

Patients Trajectories to Healing (PATH)

The patient pathway concept in this project includes the patient experiences regarding wellbeing, health and illness. We asked patients, about the health care events they choose to engage in, the self-care they take on, and their life events. We seek to develop better concepts and theoretical models to understand and evaluate Patient Pathways.

Methods and material

2011-2013 Patient data: We recruited 10 cancer patients to phase1 of the study, 1 dropped out. We have qualitative and quantitative data over one year follow-up of 9 patients with interviews, diaries and questionnaire data.

2014 Workshop: 5 of 9 patients participated in a workshop on the topic: Patient driven health service evaluation – what questions should be asked and how should they be asked?

2016 A workshop directed at health service stakeholders – both national and internationally asking the question: Person centered care – why are we not succeeding?

2017 Follow-up workshop directed at health service researchers and clinicians – both national and internationally asking the question: Person centered care – why are we about to succeed?

2017 Video interview  (2 hours – pilot) with 1 participant based on the methodology of DiPEX international/healthtalk.org.

Ph.d.

Frank Hansen, a university funded PhD student, is working on three papers based on the PATH material related to the following research questions:

• Hansen F, Berntsen GKR, Salamonsen A.       
“What matters to you?” A longitudinal qualitative study of Norwegian patients’ perspectives on their pathways with colorectal cancer. Int J Qual Stud Health Well-Being 2018.

• Hansen F, Berntsen GKR, Salamonsen A. 
Patient pathways as social drama: A qualitative study of cancer trajectories from the patient’s perspective. Int J Qual Stud Health Well-Being, 2019.

• Frank Hansen, Gro K. Rosvold Berntsen, Anita Salamonsen.
Medical pluralism in the aftermath of cancer. Health seeking actions and cancer patients’ construction of trajectories to healing. Submitted to Anthropology & Medicine. submitted 1st revision, awaiting second peer review.

We expect the last papers to be published in 2019.

Hansen has in July 2019 submitted a PhD thesis for evaluation:
What Really Matters: A longitudinal qualitative study of pathways with colorectal cancer from Norwegian patients’ perspectives.

 

Publications:

Publication place and time

Authors and title

8th international conference on the Society for integrative oncology, november 10-12, 2011, Cleveland, Ohio, USA.

 

Balneaves L, Mulkins A, Verhoef M, Warber S, McKenzie E, Koithan M, The Experience of Integrative Oncology

 

8th international conference on the Society for integrative oncology, november 10-12, 2011, Cleveland, Ohio, USA.

 

S Warber, M Bialko, L Lachance, A Mulkins, E McKenzie, L Balneaves, M Koithan, G Berntsen, M Verhoef.  Modification of the International CAM Questionnaire (I-CAM-Q) for use in a longitudinal study of CAM use and patient decision making.

 

8th international conference on the Society for integrative oncology, november 10-12, 2011, Cleveland, Ohio, USA

M Verhoef, A Mulkins, E McKenzie, L Balneaves, M Koithan, S Warber, G Berntsen.

Pathways of cancer treatment and care: Making sense of CAM use and its meaning.

 

Poster presentation. International society of quality in health (ISQUA). Edinburgh, UK, 13-16th October 2013.

Gro K Rosvold Berntsen , Deede Gammon , Cornelia Ruland , Vinjar Fønnebø. Developing methods to capture the patient pathways experience.

Presentation at workshop – Integrated care unit at NST, Tromsø, 10th. April 2013

GK Berntsen: What is quality in a patient pathway perspective, and what are the consequneces for our ICT-tools? [Hva er kvalitet i pasientforløp og hva betyr svaret for IKT-verktøyene våre?]

National network for the implemenation of the «Norwegian Coordination reform». [Nasjonalt nettverk for implementering av Samhandlingsreformen] Tromsø 11th of June 2013

Gro Berntsen. «A patient centered health service: The Chronic Care model” [En pasientsentrert helsetjeneste. «The chronic Care model»].

Workding group for the Patient in a virtual team». [Arbeidsgruppe for “Pasienten i virtuelt team”]. Tromsø. 3rd june  2013.

G Berntsen. Quality in the patient pathway. [Kvalitet i pasientforløp]

The education conference. [Utdanningskonferansen ved Universitetet I Tromsø]. 25th April 2013.

Gro Berntsen. A patient centered health service. [En pasientsentrert helsetjeneste. «The chronic Care model»]

The national Norm conference for information security. [Den nasjonale norm-konferansen for Informasjonsikkerhet.] Arrangert av Helse- og omsorgdepartementet. Tromsø, 31st October 2013

G Berntsen. The patient perspective of integrated care and informational continuity.  [Pasientperspektivet i samhandling og informasjonsflyt.]

Innovation meeting [Innomed møteplass], Oslo 6. November 2013

G Berntsen, What is quality in a patient pathways perspective, and what are the consequences for our ICT-tools? [Hva er egentlig kvalitet i pasientforløp? - og hva betyr svaret for IKT-verktøyene våre?]

Workshop Copenhagen University, Danmark. 26. November 2013

Gro Berntsen. What is quality in a patient pathways perspective, and what are the consequences for our ICT-tools? [Hva er egentlig kvalitet i pasientforløp? - og hva betyr svaret for IKT-verktøyene våre? ]

Workshop, workingroup for Patient Centered Teams. [Workshop, Arbeidsgruppen for “Pasientsentrerte helsetjenesteteam”]. Tromsø 9th December 2013

Gro Berntsen, What is quality in a patient pathways perspective, and what are the consequences for the Patient centered Team project? [Hva er egentlig kvalitet i pasientforløp? - og hva betyr svaret for TUT og Hotline? ]

Life-based and art-based research: exploring their collective, social and political potential

The Annual Conference in 2015 will be held in Italy at Università di Milano Bicocca

From Thursday 5th to Sunday 8th March 2015

Anita Salamonsen, Gro Berntsen, Linda H. Nesby, and Mona A. Kiil

Life stories as tools to change conventional health care systems and individual illness experiences: Examples and reflections from a Scandinavian context

Journal of Complementary and Integrative Medicine 2015

DOI 10.1515/jcim-2014-0070

Received November 17, 2014; accepted July 23, 2015

Andrea L. Mulkins*, Emily McKenzie, Lynda G. Balneaves, Anita Salamonsen

and Marja J. Verhoef .

From the conventional to the alternative:

exploring patients’ pathways of cancer

treatment and care

Poster presentation - The International Research Congress on Integrative Medicine and Health (IRCIMH), May 13-16 2014, Florida, USA

Nina Foss and Gro K.Rosvold Berntsen. Cancer Patients’ Stories about CAM-use: The Ongoing Work to Shape as Good a Life as Possible during Cancer Illness and Treatment,

Submitted to Qualitative Health Research jan 2015.

Foss, Berntsen, Salamonsen. Cancer patients' trajectories in complementary therapies.

2015 In press. BMJ Open.

Berntsen GKR, Gammon D, Steinsbekk A, Salomonsen A, Foss N, Ruland C, Fønnebø V, How do we deal with multiple goals for care within an individual patient trajectory? A document content analysis of health service research papers on goals for care

Poster presentation at: The Society for Integrative Oncology (SIO) 12thinteranational Conference in Boston, MA, USA. 15th of November 2015.

A.Salamonsen,M. A. Kiil, A. Kristoffersen, G. Berntsen..Understanding patient pathways and health care needs among persons living with colorectal cancer.

The international Society of Quality in health care (ISQUA), 30th ISQUA conference, Doha Qatar, 4-7th of october 2015, Oral presentation.

 

G. K. R. Berntsen 1,*, D. B. Gammon 1, A. Høyem 1, C. Ruland 2

The perspective of patients with complex long-term pathways: A mixed method analysis in light of recommended practice

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