The Impact of Motor Neurone Disease on Carers

1. The Impact of Motor Neurone Disease on Carers A Systematic Review and Development of a Questionnaire Carole Mockford, Crispin Jenkinson and Ray Fitzpatrick University of Oxford Funded by the Motor Neurone Disease Association, UK M O T O R NEURONE DISEASE ASSOCIATION

2. STUDY AIMS 2-fold aim: • To explore the impact on carers’ everyday lives of looking after a person diagnosed with MND • To explore their experience of the service providers from the statutory services as well as the private and voluntary sector.

3. Why another questionnaire? • What do we hope to achieve? • What will carers gain?

4. PART ONESystematic Review

5. RESEARCH QUESTIONS • What does research evidence tell us about the lived experience of being a carer of a person diagnosed with MND? • What does research evidence tell us about the carers’ perceptions of service provision?

6. CRITERIA • Assessment of carer must have taken place including interviews • Must include the carer’s experience • Not: *Professional carers’ experience *Individual case studies *Studies where carer only provides information on behalf of patient

7. SEARCH TERMS Keywords The terms used in the title and/or abstract (if available) were: carer(s) motor neuron(e) disease caregiver(s) amyotrophic lateral sclerosis family partner spouse

8. SEARCH • Ten year period 1994-2004 • 23 medical, social and academic sites • National Research Register • Theses websites • Unpublished work/conference abstracts

9. FINDINGS • 30 studies (32 key texts) • Studies conducted in USA(14), UK(9), Germany(3), Sweden(1), Europe(1), Canada(1) and Australia(1) • Quantitative studies (19), qualitative (7) and mixed methods approach (4) • A narrative analysis was performed

10. INSTRUMENTS USED • Burden Zarit Burden Inventory (3 times); ALSPCF (2 times); BSFC; CCI; CSI; SCB • Psychological STAI; WOCC; BHS; POMS; BDI (2 times); BDI-II;HAD; DSM-IV; Diagnostic Interview Schedule Coping Response Inventory – adult form Perceived Stress Scale • Quality of Life SEIQOL-DW; MQOL-SIS; MLDL • Intimacy Intimacy Scale; SSRS • Health SF-36

11. IMPACT ON CARER What does research evidence tell us about the lived experience of being a carer of a person diagnosed with MND? General health Relationships Emotional health Protective factors Life Satisfaction Risk factors Socio-economic factors Achille 1999, Adelman et al 2004, Bolmsjo and Hermeren 2003, Bromberg et al 1996, Bromberg and Forshew 2002, Brown 2003, Dawson and Kristjanson 2003, Dennison 1996, Freer 2002, Ganzini et al 1998, Gelinas et al 1998, Goldstein et al 1998, Goldstein et al 2000, Hecht et al 2003, Jenkinson et al 2000, Kaub-Witterner et al 2003, Krivickas et al 1997, Lecouturier etal 1998, Martin and Turnbull 2001, Miller et al 2000, Rabkin et al 2000, Trail et al 2003, Trail et al 2004, Wasner et al 2004.

12. CARERS AND SERVICE PROVISION What does research evidence tell us about the carers’ perceptions of service provision? Hospital care Written information Health care Voluntary organisations Social care Birch et al 1995, Bolmsjo and Hermeren 2001, Bolmsjo and Hermeren 2003, Brown 2003, Dawson and Kristjanson 2003, Freer 2002, Ganzini et al 2002, Goldstein et al 1998, Goldstein et al 2000, Krivickas et al 1997, Lecouturier et al 1998, McCluskey et al 2004, Motor Neurone Disease Association 2002, 2002, Perkins 2001, Van Teijlingen 2001

13. SUMMARY OF THE RESEARCH LITERATURE Main data collection method: • Validated questionnaires (12) • Qualitative and interview based studies (8) • Researcher designed questionnaires (10)

14. SUMMARY OF FINDINGS • Sample sizes were often small (58% <=50) • Cross sectional studies • Data were diverse and sometimes contradictory

15. IS THERE A NEED FOR A DISEASE SPECIFIC QUESTIONNAIRE? • To aid comparison between studies • To further our understanding of a carer’s experience of assisting someone with MND • To explore the specific needs of this clientele to improve service provision

16. PART TWO Questionnaire development

17. QUESTIONNAIRE DESIGN 2 parts: • Part one – to develop the long form questionnaire • Part two – to develop a shorter form questionnaire

18. PART ONEINTERVIEWS AND FOCUS GROUPS • MND specialised clinic – database (100+) • Recruitment: patient not newly diagnosed <6m diagnosis accepted not close to death had informal carer

19. DATA COLLECTION • Approached 37 patients • Number of carers volunteering for interview (22) • Number of carers volunteering for focus groups (11)

20. INTERVIEWS AND FOCUS GROUPS • Method • Interview schedule – examples What kind of tasks do you have to perform? How do you manage? • Focus group schedule - examples What support services do you use? What do you think about it?

21. DEVELOPING THE QUESTIONNAIRE • Thematic analysis using NUDIST software • Themes informed each question: Employment ADL Equipment Social support Relationships Finances Social activities Carers’ health Diagnosis Primary care Home care Voluntary organisations Emotional support Written information Special training

22. PILOT QUESTIONNAIRE • Expert opinion/ interviewees (20/23 returned) • Changes were made • The pilot questionnaire Mailed to 150 carers from the MND Association database (67% response rate) with covering letter

23. LONG FORM QUESTIONNAIRE • The long form questionnaire designed • Back to the Ethics board • Mailed to 300 carers (65% response)

24. PART TWODEVELOPING THE SHORTENED QUESTIONNAIRE • Why? – main comment: length and time • How? – and maintain broad focus • > 70% response - ceiling or floor effect • > 5% missing values - relevance • More use of Likert tables – more response categories and quicker to complete

25. Final stage • Back to the Ethics board • Out to 233 carers plus health status measurements: ALSAQ-40 to patients SF-36 to carers • Analysis

26. Why another questionnaire? • What do you hope to achieve? • What will carers gain?

27. CONCLUSIONS • Research evidence from systematic review identifies a need for a disease specific questionnaire. • This disease specific questionnaire will: • identify specific issues concerning carers who assist those with MND/ALS • identify areas where the support services can reduce the demands upon these carers and, potentially, benefit their health • allow for better comparison between studies