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Conceptualising rehabilitation goals and making them SMARTER Deborah Hersh, PhD Senior Lecturer Speech Pathology, SPSS, ECU Contact Info: www.ecu.edu.au/research/week It is important to set goals... Contact Info: www.ecu.edu.au/research/week Setting a Goal • essential part of rehabilitation – Wade, 1998 • a fundamental component of contemporary rehabilitation practice – Levack et al., 2006 • integral to person-centredness – Cott, 2004 Contact Info: www.ecu.edu.au/research/week Collaborative Goal Setting • Numerous calls to work collaboratively – Duchan & Black, 2001; Holliday, Cano, Freeman & Playford, 2007; McClain, 2005 • Policy directives – Eg: National Stroke Foundation Clinical Guidelines for Stroke Management 2010 • Therapeutic approaches which incorporate collaborative goal setting – – – – Social approaches LPAA A-FROM Byng & Duchan, 2005; Chapey et al., 2001; Simmons-Mackie, 2000 Contact Info: www.ecu.edu.au/research/week But is it really happening? • No.... – Rosewilliam, Roskell & Pandyan, 2011 • People post-stroke still have limited involvement in goal setting – Barnard, Cruice & Playford, 2010; Cott, 2004; Gustafsson & McLaughlin, 2009; Holliday, Ballinger & Playford, 2007; Parry, 2004; Wressle, Öberg & Henriksson, 1999 • Clinicians control the goal setting process – Holliday, Antoun & Playford, 2005; Levack et al., 2006, 2009; Playford et al., 2000; Van de Weyer et al., 2010 • ...and there is little collaboration with people with aphasia. – Kuipers et al. 2004; Leach, Cornwell, Fleming & Haines, 2010; Parr, Byng, Gilpin & Ireland, 1997 Contact Info: www.ecu.edu.au/research/week Example • Holliday, Antoun & Playford (2005) – Questionnaire of 202 rehabilitation professionals (mainly doctors) – Nearly 50% used a problem-orientated approach to goal setting – Just over 40% used a client-centred approach – Most reported giving no verbal or written information to patients on goal setting – Often discussed by team without patient present – Only 50% gave patients a record of treatment goals – 30% did not involve patients in any evaluation of goals Contact Info: www.ecu.edu.au/research/week Reasons why professionals ‘own’ goal setting – Playford et al. (2000): • • • • Process is faster Easier to ignore goals which seem too hard to work on Having a team plan encourages patients to go along with it Patients with communication difficulties can still be helped achieve a goal even if they can’t understand or express it • Goal setting helps teams work productively Contact Info: www.ecu.edu.au/research/week Goal setting is confusing for clients... Contact Info: www.ecu.edu.au/research/week ...despite good intentions. • Maybe we need to re-think how we can be more collaborative in goal setting... Contact Info: www.ecu.edu.au/research/week Plan for this presentation • Summary of findings from the Goals in Aphasia Project – What did people with aphasia want from rehabilitation? – What did family members want? – What did speech pathologists do in goal setting? – How do speech pathologists conceptualise a goal? • Explanation of SMARTER Goal Setting model Contact Info: www.ecu.edu.au/research/week METHODS • Funding – NHMRC – project grant with colleagues (Linda Worrall, Bronwyn Davidson, Alison Ferguson, Tami Howe and Sue Sherratt) • Design • Qualitative descriptive research strategy (Sandelowski, 2000) • Participants • 51 participants with aphasia recruited through community sources • PWA nominated family members and their treating speech pathologists • Final sample • 50 PWA (26 women, 24 men, mean age 63.9 years, mean of 54.3 months post onset, WAB mean 69.6AQ). • 49 FM (36 women, 12 men) • 36 SPs (32 women, 2 men) Contact Info: www.ecu.edu.au/research/week • Data collection – Semi-structured in depth interviews by trained experienced post doctoral speech pathology researchers – Interviews of PWA videotaped, FM & SPs audiotaped, all transcribed verbatim. • Topics – For PWA and FMs: what they wanted/what their goals were at different stages of recovery, and what experiences were helpful or unhelpful. – SPs: goals for their clients, what they perceived their clients’ goals to be, their definitions of goals, and barriers and facilitators to goal setting. Contact Info: www.ecu.edu.au/research/week What do people with aphasia want? 1. 2. 3. 4. 5. 6. 7. 8. 9. Return to pre-stroke life Communication Information Speech therapy Physical health goals Social/Work Leisure Control/Independence Dignity/respect Contribution to society Contact Info: www.ecu.edu.au/research/week Example: Return to pre-stroke life:...Back to normal • ...just to be normal and enjoy life. (Mavis) • I trying to normal but not working. I want to 100 cent again. (Christopher) • I thought I, I will just get better. (Neville). Contact Info: www.ecu.edu.au/research/week What do family members want? • For themselves: – Information • About the stroke, aphasia, prognosis, services – Support • Family, community services, financial – Ways to communicate and maintain their relationship with their loved one with aphasia – To be included and involved in rehabilitation – To have a sense of hope and positivity – To take care of their own well-being – To cope with new responsibilities Contact Info: www.ecu.edu.au/research/week What do family members want? • For the person with aphasia: – Survival – Effective communication – A level of independence – To be able to handle emergencies – Social opportunities – Stimulation – Meaningfulness in life Contact Info: www.ecu.edu.au/research/week What goals do speech Pathologists set in practice? Functional therapy Impairmentlevel therapy Education, counselling, family involvement Goals Contact Info: www.ecu.edu.au/research/week How do speech pathologists define goals? (Hersh, et al. 2012 a) • Six overlapping categories: – Goals defined by the desires of clients/families – Defined through SMART concepts – Goals as steps – Representing different aspects of the ICF: impairment or functional – Goals as contracts – Implicit goals Contact Info: www.ecu.edu.au/research/week Competing goals: • Speech pathologists aspire to be person-centred • But the goal setting process is dominated by the need for goals to be SMART (professional-centred) – Barnard, Cruice & Playford, 2010; Hersh et al., 2012a; Leach, Cornwell, Fleming & Haines, 2010 Contact Info: www.ecu.edu.au/research/week Focus on the steps or sub-goals... Contact Info: www.ecu.edu.au/research/week ... So the big goals are not always addressed Contact Info: www.ecu.edu.au/research/week SMARTER Goal Setting (Hersh et al., 2012b) • New framework developed from Goals in Aphasia Project • Does not seek to replace SMART but these goals can be negotiated in a SMARTER way • SMART is about the nature of goals • SMARTER is about the process of setting them • SMARTER encompasses a set of values to underpin a collaborative, responsive and flexible goal setting process Contact Info: www.ecu.edu.au/research/week SMARTER goal setting •Shared •Monitored •Accessible •Relevant •Transparent •Evolving •Relationship-centred Contact Info: www.ecu.edu.au/research/week Shared Monitored G O A L S Accessible Relevant Transparent Evolving Relationshipcentred Contact Info: www.ecu.edu.au/research/week Specific Measurable Achievable Realistic Time-bound Goal setting should be Shared •Principles of shared decision-making (Charles et al., 1997; 1999) • Understanding of each other’s perspective • Real choices, real negotiation • Some level of agreement •Practical suggestions: –Preparation of client and family for goal setting • Goal setting folder? Pre-admission interview (if appropriate)? –Orientation to rehabilitation context/staff/team and expectations of both clients and staff –Accessible information – range of media/aphasia friendly –Increased time required –Attendance and inclusion at meetings –Aphasia friendly documentation and dissemination of discussions, goal choices –Effective interprofessional collaboration Contact Info: www.ecu.edu.au/research/week Example with person with aphasia •I: OK. So her question "What do you want to work on?" that woke it all up, did it? •Alistair: Er, yes. Yeah, erm. •I: That's interesting. •Alistair: I felt so happy. •I: Yes? That somebody had asked you what you wanted? •Alistair: Yes, yes. Contact Info: www.ecu.edu.au/research/week Goal setting should be Monitored • Why monitored rather than measured? – Redirection of focus... • Continuous evaluation – Discussions of change (or lack of it) within therapy – Not limited to discreet periods of assessment – Iterative approach, appraisal and feedback – Shared aphasia friendly documentation of change • Emphasis beyond numerically-based change – Encourages inclusion of activity and participation level evaluation and feedback – Includes client self-evaluation, family evaluation – Helps avoid goal setting purely driven by an assessment result which may not reflect client goals Contact Info: www.ecu.edu.au/research/week Goal setting should be Accessible •Aphasia friendly, accessible processes are crucial to collaborative goal setting •Practical suggestions: –Extra time –Structured workbook prior to sessions –semi-structured interview format using supported conversation –Aphasia-friendly materials for negotiating original goals, showing how goals split into steps, monitoring change, revising goals –Accessible documentation and dissemination of discussion –“Talking mats” idea? Contact Info: www.ecu.edu.au/research/week Goal setting should be Relevant •Practical suggestions: –Don’t assume what is relevant for someone – work through it together and keep checking –Don’t only rely on assessment findings on standard batteries to guide a starting point for therapy –Consider a home visit for someone in residential rehabilitation – goal setting in an authentic context may be useful –Involve family and friends where it is possible –Ensure the therapy reflects the relevance of the goals Contact Info: www.ecu.edu.au/research/week Example from a person with aphasia They wanted to know what a horse was, what a dog was, and animals… I know what a horse was… I went to a room. They had, they said ‘horse’… and they said I must write ‘horse’… But it wasn’t what I …. I wanted to read. But I couldn’t read because it was just like pages and pages and pages and I got fed up. (Edwina) Contact Info: www.ecu.edu.au/research/week Goal setting should be Transparent •There need to be very clearly discussed LINKS – Between big goals and small steps or subgoals – Between goals identified during goal-setting and the therapy tasks/activities chosen •There should be clear records of agreed goals •Everyone should understand the rationale behind them and know how they were chosen Contact Info: www.ecu.edu.au/research/week Establishing goals & subgoals (SLP suggestions) •Lots of talk •Goals lists •Visualisation, metaphor & analogy (steps, ladders, journey, bite-sized chunks) •Relating steps to client’s life & interests •Making subgoals ‘outcome oriented’ •Working through – hierarchy of everyday activities – Modalities – Prioritisation: rating tasks for importance •Seeking regular feedback Contact Info: www.ecu.edu.au/research/week Goal setting should be evolving •Goals change with time •Goals need to be revised and revisited regularly •Ensure clients are aware early that they can request a change of direction •Don’t assume goals in the early stages of recovery must be impairment level and that later goals are necessarily activity/participation –Clients may have different priorities •Don’t assume that client input is only possible once people have made some recovery Contact Info: www.ecu.edu.au/research/week Goal setting should be RELATIONSHIP-CENTRED •Goal setting involves getting to know your client and family so that plans for rehabilitation are well grounded and informed •Do not use a formal assessment session as a basis for getting to know your client Contact Info: www.ecu.edu.au/research/week Conclusion • Goal setting is often reported by clients and families as confusing and they often feel excluded • Professional tendencies to prioritise SMART ideals have reinforced this • SMARTER concepts increase awareness of the potential for a collaborative process • Many clinicians already use aspects of SMARTER • But this framework engages a set of values, attitudes and practical changes Contact Info: www.ecu.edu.au/research/week Goals are complex, multi-layered and overlapping... Contact Info: www.ecu.edu.au/research/week But we need to aim high … Contact Info: www.ecu.edu.au/research/week References • • • • • • • • • • • • • Barnard, R.A., Cruice, M. & Playford, E.D. (2010). Strategies used in the pursuit of achievability during goal setting in rehabilitation. Qualitative Health Research, 20, 239-250. Byng, S. & Duchan, J. (2005). Social model philosophies & principles: Their applications to therapies for aphasia. Aphasiology, 19, 906-922. Chapey, R., Duchan, J., Elman, R., Garcia, L., Kagan, A., Lyon, J., & Simmons-Mackie, N. (2001). Life participation approaches to aphasia. In Chapey, R. (Ed.), Language intervention strategies in aphasia and related neurogenic communication disorders (4th ed.). Philadelphia, PA: Lippincott, Williams & Wilkins. Charles, C., Gafni A., & Whelan, T. (1997). Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango). Social Science and Medicine, 44, 681–692. 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(2000). Goal-setting in rehabilitation: report of a workshop to explore professionals' perceptions of goal-setting. Clinical Rehabilitation, 14, 491-496. Playford, E. D., Siegert, R., Levack, W., & Freeman, J. (2009). Areas of consensus and controversy about goal setting in rehabilitation: a conference report. Clinical Rehabilitation, 23, 334-344. Rosewilliam, S., Roskell, C.A., & Pandyan, A.D. (2011). A systematic review and synthesis of the quantitative and qualitative evidence behind patient-centred goal setting in stroke rehabilitation. Clinical Rehabilitation, 25, 501-514. Van de Weyer, R.C., Ballinger, C. & Playford, E.D. (2010). Goal setting in neurological rehabilitation: staff perspectives. Disability and Rehabilitation, 32, 1419-1427. Wade, D.T. (2009). Goal-setting in rehabilitation: an overview of what, why and how. Clinical Rehabilitation, 23, 291-295. Contact Info: www.ecu.edu.au/research/week