Municipal cancer rehabilitation & support in everyday living by. Karen la Cour Head of the Research Initiative of Activity Studies and Occupational Therapy Associate Professor, PhD. MSc. OTR Institute of Public Health, Health, Man and Society, University of Southern Denmark

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Disposition 1. Community-based rehabilitation across Denmark - Organizational challenges

2. Involvement of patients and their relatives - Relational potentials

3. Everyday living with cancer - Consequences for daily activity

4. Activity, cancer and quality of life at home - Support in home environments

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Community-based cancer rehabilitation – from 11 projects in 15 Danish communities Conditions Prioritized rehabilitation areas, Physical activity Coordination and coherence Back to life, coping and work Resources Locally dependent Realization A variety of designs Results Experiences, effects and processes 2012

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Methods Participants

Inclusion of citizens, n = 813

27 rehabilitation managers

22 % Job center 21 % Self initiated 13 % Hospital w. referral/rehab. plan 9 % Hospital without referral/rehab. Plan 11 % General practitioner 24 % Other

Data generation Questionnaires, Semi structured interviews and focus-group discussions Data analysis Descriptive statistics and thematic analysis

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Organizational challenges - for coordination and coherence Obstacles • Collaboration across sectors internally and externally of the municipality • Insufficient knowledge of each others competencies between professional actors • Different traditions and understandings of rehabilitation among healthcare professionals • Many collaborators and practices

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Many actors in municipal cancer rehabilitation

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Strategies • • • • •

Personal relations/ network Steering committees Visibility and communication Specialist/Knowledge function Shared language of rehabilitation International Classification system of Functioning ICF Health and illness conditon Body function and structures

Activities

Environmental-factors

Participation

Personal factors WHO, 2001

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Coordination of rehabilitation Individual based coordination Rehabilitation-management (RM), mono-professional coordination of citizens rehabilitation process

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Coordination of rehabilitation Team-based rehabilitation coordination Knowledge sharing Competence gliding, less vulnerable

Recommendations • One primary RM/ w. decision and referral authority 2012

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Cancer rehabilitation with joint involvement Cancer has consequences for patients and their relatives -

Living conditions Relationship The rehabilitation process

Existing research often take one perspective (Fors et al. 2011; Chambers et al., 2011)

An intervention study to support to both patients and relatives during treatment and the rehabilitation process Leddere et al. submitted 2012 2012

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Cancer rehabilitation w involvement of patients and relatives

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The residential rehabilitation course Table 1. Monday

Tuesday

7:00 – 7:30 am 7:30 – 8:15 am

Wednesday Leisure

Thursday

Friday

Breakfast buffet

8:30 – 8:40 Arrival ___ Welcome and presentation of the week schedule ___ Course participant introductions

Morning activities

Using your body: Introduction to on-site training facility ___ Everyday life after treatment

12:30pm All these consideration Afternoon activities

Geocaching (men) Arts& Crafts (women)

Gathering All these considerations (continued) ___ Mindfulness meditation

Individual conversations (each couple and a course counselor) ___ Mindfulness meditation

Interest groups ___ Relaxation

Lunch Art therapy (a) ___

Partner massage (a)

Free time (b)

Free time (b)

Course evaluation and good bye ___

(half the group a and half b) 6 pm

Departure 3pm

Dinner Easy dances

Evening activities

Do I get enough and the right foods?

Gala dinner

la Cour et al. submitted 2012 2012

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Joint involvement in residential rehabilitation An ethnographic study Participants 20 persons, 10 couples patients and a self chosen relative

Data collection Fieldwork Analysis Constant comparative method 2012

Sharing & learning  Not being alone/ legitimizing  Relational communication and understanding  New strategies  Learning through doing  Better chances for making changes at home  Network …

Not all rehabilitation ‘effects’ can be measured by standardized instruments Karen la Cour

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Study of everyday activities of people with advanced cancer Methods Forty-five participants (n = 45) advanced cancer – lung cancer, colon cancer and breast cancer (23 women, 22 men, age 39-80). Sub-sample for home-visits Data generation Time Geographical diary Method, (124 days) & qualitative interviews (Nordell & Ellegård, 1997) Participant observations (Davies, 2001) Data analysis Descriptive statistic & TGM data-organization Constant comparative method (Strauss & Corbin, 1998) 2012

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Results Days with cancer dominated by self-care and leisure

Time is spend at home with limited social contact

Activity Sphere participants' time in daily occupations 1% 5% 5%

Self care Care for others

19%

Household Leisure

7% 2%

61%

Transport Food preparation Work

Consequences of cancer influence rhythm and satisfaction in daily life 2012

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Symptoms and everyday living Physical discomfort – Consequences in daily activity Reported symptoms

Impact on everyday activity and participation

•Fatigue

 overall effect, initiating and performing activity

•Nauseous/vomiting

 restricts geographical sphere

•Sensibility disturbances

 impact hand functioning, fine-motor activities, cold/hot items self-care, household, etc.

•Pain •Breathing problems,

 overall effect

•Decreased physical function,  gross-motor activity, heavy work etc. rom/ strength /endurance

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Narratives in the face of dying Evolving around,

I am healthy although I am sick Routines and continuity My little Mecca……

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My little Mecca – an example of Ella and her garden E: It´s the garden as much as possible and I force my husband to do the heavy work. Just carrying the soil is a major problem. I am the only one who enjoys the garden – so it really isn't for other people, it is just for my self. I can spend hours on a small flower-project. Int: And what it is about the garden?

E: It is so wonderful because it is life, that grow out of the soil. I can cut weed and envision these flowers blossoming….

The findings demonstrate how the participants mobilize effort and adaptive strategies to conduct activity that are meaningful to them 2012

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Implications For the persons involved • It is life confirming to be able to continue being an active and engaged person • Not underestimate the value of routines

Methodologically • Dairies as an entrance to peoples lives facilitate participant perspective • Diaries stimulate self-reflection and potentials for change

Transition & support for living at home …. 2012

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A new project Activity, advanced cancer and quality of life at home  Increasing numbers of people live with incurable cancer longer

 Cancer may cause functional limitations 

decreased ability to perform activities, such as self-care, household, leisure and work may affect possibilities for engagement in meaningful activity reduced quality of life

The overall objective is to develop and test an intervention program that enables people living at home with advanced cancer to manage everyday activities, 2012

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The studies A cohort study (n=180) • To describe the daily activity problems at home: • experiences of and ability to perform everyday activities; • prevalence of needs • barriers for activities including particular challenges for home-based interventions. Develop a tailored home-based intervention program, w. activity training/adjustment, compensatory strategies, home modifications, assistive technology An RCT study (n =120) • To examine if the intervention program; improve ability to perform everyday activities; increase quality of life and if it is cost-effective. 2012

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Methods for data collection Dimension Daily living at home

Method/Instrument Qualitative interview

Purpose in study Explore subjective experiences of activities in the home

Semi-structured interview Activities

Individually Prioritized Problems Analysis (IPPA)

Identification of difficult activities and prioritization of the most important activities

Structured interview Activities

Activities of Daily Living Questionnaire (ADL-Q)

Self-reported quality of activities of daily living (ADL) performance

Activities

Everyday Technology Use Questionnaire, ETUQ

Competence in use of everyday technology

Structured interview Activities

Assessment of Motor and Processing Skills (AMPS)

Observed quality of ADL performance

Structured observation Quality of life

EORCT-QLQ 30 (questionaire)

Quality of life as a proxy for well-being

Quality of life

EQ-5D (questionaire)

Quality of life for computing utilities

Home environment

Housing Enabler, reduced version

Housing accessibility problems

Structured observation & interview

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Methods and context • Questionnaires

• Interviews • Observations

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Summary and perspectives  Organizational structures are ‘key’ to rehabilitation  Attention to roles and involvement of relatives in rehabilitation  Support and ‘tools’ for transitioning to everyday life  Context is critical for assessment of problems, needs and effects Rehabilitation must enable people with cancer to return to and recreate a fulfilling everyday life in their own environments 2012

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Thank you for your attention Funding for the presented studies has been given by The Danish Cancer Society & TrygFonden Thanks also to research colleagues Professor Helle Ploug Hansen, Postdoc Loni Ledderer, Senior researcher Åse Brandt and Post doc Eva Währens . 2012

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