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Developing an international research agenda for occupational therapy in palliative care

Background

According to the World Health Organisation palliative care is an approach that aims to improve patients’ and their families’ quality of life (QoL) by addressing the problems they face when living a life-threatening illness, such as physical, psychosocial and spiritual aspects of life (1). This definition also includes the ability to participate in everyday activities, which is related to better QoL (2,3). However, existing research in palliative care shows that enabling participation in everyday activities, while valued by people with palliative care needs (4), is rarely the main target of the interventions (5), although many people with a life-threatening illness face serious problems with everyday activities (6-12). Existing allied health interventions supported by research, focus much more on providing exercise and alleviating physical symptoms (13-19) and do not examine participation in valued everyday activities. Since palliative care aims to help people to live their lives as fully as possible, examining ways to enable participation in valued everyday activities should be a high priority. Occupational therapy (OT) aims to optimise function, and support participation in valued everyday activities along with adaptation and coping (20, 21) through the reframing goals and expectations as a person approaches the end of life (22). In recent years, there has been an increasing interest among OT scholars to develop and evaluate the impact of OT interventions in people with a lifethreatening illness (23-26). A recent survey of European OTs working with palliative care patients identified that while OTs were involved in service provision, their engagement in research and service development was very limited (27). The Task Force has been assembled to strengthen OTs’ position in palliative care and to set a research agenda for intervention studies in occupational therapy in palliative care. We will focus on all stages of life, from early childhood to older adulthood. This will complement and develop existing palliative care to better meet the everyday activity needs of people with a life-threatening illness. In order to achieve this we will engage both OT clinicians, managers and OT researchers across Europe and internationally (including Australia, USA and Canada) and draw on existing evidence of occupational therapy interventions in palliative care.

Aims and Objectives

The overall aim of the Task Force is to set a research agenda for intervention studies in occupational therapy in palliative care.

The specific objectives are as follows:

1. To identify the range and quality of existing research, through a scoping review of the research literature on OT intervention studies in palliative care.

2. To use the Task Force Steering Group’s international networks to establish and bring together a group to meet at EAPC 2020. The purpose of this meeting would be to:

  • Identify research priorities for OT in palliative care.
  • Guide a future research agenda including recommendations for methodological and intervention approaches.
  • Identify specific research topics and potential research collaborations.

3. Actively identify and include OTs from any Eastern European countries where OT in palliative care is less well developed to participate in the Task Force.

4. Following the EAPC 2020 meeting, to identify, organise and prioritise OT researchers’, OT clinicians’ and patients’ ideas about relevant and effective intervention components for people with a life-threatening illness using Group Concept Mapping (GCM) methodology. The purpose of this is to inform the content of interventions for evaluation studies.

Milestones
  • September 2019-April 2020: Building membership by including 30-40 OTs across Europe and worldwide using the Task Force Steering Group’s international networks. We will have a special focus on including OTs from Eastern European countries.
  • May 2020: Research priority setting meeting at EAPC 2020 in Palermo, Italy. Subsequently, conduct two yearly online EAPC conference taskforce meetings (half-day/day) identifying potential projects and forming collaborative groups who will take proposals forward for funding applications.
  • September 2020: Submit scoping review for publication to Palliative
    Medicine or Journal of Palliative Medicine.
  • December 2021: Submit GCM findings for publication to Palliative Medicine or Journal of Palliative Medicine. GCM is a mixed methods participatory approach consisting of 6 phases. We plan to conduct phase 1-5 online using the CS Global Max software and phase 6 as a face-to-face session. In phase 1, the participants will brainstorm on relevant and effective intervention components. Then they sort and label the ideas (phase 2), rate the importance of each idea on a five-point ordinal scale (phase 3) and generate a Cluster Rating Map (phase 4). In phase 5 they validate the generated Cluster Rating
    Map, and finally in phase 6 a final conceptual model is developed. At least 30 participants will be included, which is a sufficient number to produce a reliable conceptual model.
Supporting Institutions 

The following institutions will support the present Task Force:

  • The Research Initiative of Activity Studies and Occupational Therapy, Research Unit of General Practice, Department of Public Health, University of Southern Denmark 
  • Palliative and Supportive Services, Research Centre for Palliative Care, Death and Dying, Flinders University, Adelaide, Australia
  • Peter MacCallum Cancer Centre, Royal Melbourne Hospital, Melbourne, Australia
  • Faculty of Health and Life Sciences, Oxford Brookes University, Oxford, UK
References

1)World Health Organization. WHO Definition of Palliative Care. Available at:
http://www.who.int/cancer/palliative/definition/en/. Accessed 08-23-2019.

2) Brekke M, la Cour K, Brandt Å et al. The impact of ADL ability on quality of life among people with incurable cancer. In progress.

3) Esbensen BA, Osterlind K, Hallberg IR. Quality of life of elderly persons with cancer: a 6-month follow-up. Scand J Caring Sci 2007; 21(2):178-190.

4) Von Post H and Wagman P. What is important to patients in palliative care? a scoping review of the patient’s perspective. Scand J Occup Ther 2017. DOI: 10.1080/11038128.2017.1378715

5) Gomes B, Calanzani N, Curiale V et al. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev 2013; (6) CD007760:1-45.

6) Cheville AL, Troxel AB, Basford JR et al. Prevalence and treatment patterns of physical impairments in patients with metastatic breast cancer. J Clin Oncol 2008; 26(16):2621-2629.

7) Cheville AL, Bech LA, Petersen TL et al. The detection and treatment of cancer-related functional problems in an outpatient setting. Support Care Cancer 2009; 17(1):61–67.

8) Rainbird K, Perkins J, Sanson-Fisher R et al. The needs of patients with advanced, incurable cancer. Br J Cancer 2009; 101(5):759-764.

9) Johnsen AT, Petersen MA, Pedersen L et al. Do advanced cancer patients in Denmark receive the help they need? A nationally representative survey of the need related to 12 frequent symptoms/problems. Psychooncology 2013; 22(8):1724-1730.

10) Lindahl-Jacobsen L, Hansen DG, Wæhrens EE et al. Performance of activities of daily living among hospitalized cancer patients. Scand J Occup Ther 2015;22(2):137-146.

11) Sviden GA, Tham K, Borell L. Involvement in everyday life for people with a life threatening illness. Palliat Support Care 2010; 8(3):345-352.

12) Harrison-Paul J and Drummond AER. A randomised controlled trial of occupational therapy in oncology: challenges in conducting a pilot study. Br J Occup Ther 2006; 69(3):130-133.

13) Zimmermann C, Swami N, Krzyzanowska M et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet Oncol 2014; 383:1721-1730.

14) Jones L, Fitzgerald G, Leurent B et al. Rehabilitation in advanced, progressive, recurrent cancer: a randomized controlled trial. J Pain Symptom Manage 2013; 46(3):315-325.

15) Oldervoll LM, Loge JH, Lydersen S et al. Physical exercise for cancer patients with advanced disease: A randomised controlled trial. Oncologist 2011; 16:1649-57.

16) Henke CC, Cabri J, Fricke L et al. Strength and endurance training in the treatment of lung cancer patients in stages IIIA/IIIB/IV. Support Care Cancer 2014; 22(1):95-101.

17) Jensen W, Baumann FT, Stein A et al. Exercise training in patients with advanced gastrointestinal cancer undergoing palliative chemotherapy: a pilot study. Support Care Cancer 2014; 22(7):1797-1806.

18) Mayo NE, Moriello C, Scott SC et al. Pedometer-facilitated walking intervention shows promising effectiveness for reducing cancer fatigue: a pilot randomised trial. Clin Rehab 2014; 28(12):1198-1209

19) Van den Dungen IA, Verhagen CA, van der Graaf WT et al. Feasibility and impact of a physical exercise program in patients with advanced cancer: a pilot study. J Palliat Med 2014; 19(10):1091-1098.

20) la Cour K, Johannessen H, & Josephsson S. Activity and meaning making in the everyday lives of people with advanced cancer. Pall & Support Care; 7(4):469-479.

21) Eva G, Paley J, Miller M, Wee B. Patients’ constructions of disability in metastatic spinal cord compression. Pall Med 2009; 23: 132-140

22) Occupational Therapy Australia, Position Statement: Occupational therapy in palliative care. Aust Occup Ther J 62(6), 459-461.

23) Hegel MT, Lyons KD, Hull JG et al. Feasibility study of a randomized controlled trial of a telephone-delivered problem-solving-occupational therapy intervention to reduce participation restrictions in rural breast cancer survivors undergoing chemotherapy. Psychooncology 2011; 20(10):1092-1101.

24) Lindahl-Jacobsen L. Occupational therapy for cancer patients - a randomised, controlled study. PhD [thesis]. Odense: University of Southern Denmark; 2014.

25) Harrison-Paul J and Drummond AER. A randomised controlled trial of occupational therapy in oncology: challenges in conducting a pilot study. Br J Occup Ther 2006; 69(3):130-133.

26) Pilegaard MS, la Cour K, Gregersen LO, Johnsen AT, Lindahl-Jacobsen L, Højris I, et al. The 'Cancer Home-Life Intervention': A randomised controlled trial evaluating the efficacy of an occupational therapy-based intervention in people with advanced cancer. PallMed 2018;32(4):745-756.

27) Eva G, Morgan D. Mapping the scope of occupational therapy in palliative care: a European Association for Palliative Care (EAPC) cross-sectional survey. Pall Med 2018; 32(5):960-968.

Chair

Marc Sampedro Pilegaard 

OT and Postdoctoral researcher, Denmark

Email taskforce

Steering Committee

Karen la Cour - Denmark

Deidre Morgan - Australia

Celia Marston - Australia

Gail Eva - UK

Mario Lozano-Lozano - Spain

Carol Reynolds - Ireland

Julie Brose - Canada

Helen von Post - Sweden

Christoph Ostgathe - Germany - EAPC Board link

 

Members

Heidi Klit Birkemose - Denmark

Mette Falk Brekke - Denmark

Line Lindahl-Jacobsen - Denmark

 


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