Rebecca Cunningham, OTD, OTR/L
Multiple Sclerosis (MS) is the most widespread disabling neurological condition of young adults around the world, with diagnosis most commonly occurring between 20 and 40 years of age (Halper & Harris, 2012). New research indicates there are just under one million people living with this disease in the United States (National Multiple Sclerosis Society [NMSS], n.d.), with 200 new cases diagnosed each week. MS is a demyelinating disease of the Central Nervous System (CNS) that affects the brain, optic nerves, and spinal cord. It is considered to be an autoimmune or immune-mediated condition in which the body mistakes its own cells as foreign invaders and attacks them. This leads to the damage of oligodendrocytes, which are responsible for the myelination of neurons in the CNS. As a result, neuronal connections throughout the CNS are slowed or irreparably damaged, causing a wide variety of symptoms based on the location and severity of lesions. The most common symptoms include fatigue; depression; muscle weakness; vision changes; bowel, bladder, and sexual dysfunction; gait disruption; paresthesia; and neuropathic pain (Halper & Harris, 2012). These symptoms have the potential to affect multiple areas of occupational performance, including activities of daily living (ADLs), instrumental activities of daily living (IADLs), work, and community integration. As such, occupational therapists (OTs) have the expertise to help people with MS improve their functioning across areas of occupational performance, as well as assist them in making lifestyle changes to promote more effective and independent self-management of the disease.
Evidence in the MS literature supports behavior and lifestyle interventions as an important component for symptom and disease management. This includes:
- Stress management and self-regulation routines (Artemiadis, et al, 2012; Burns, Nawacki, Kwasny, Pelletier & Mohr, 2014; Mohr, et al, 2012)
- Bowel, bladder, and sexual dysfunction management (Blackmore, Hart, Albiani & Mohr, 2011; Coggrave, Norton & Cody, 2014; Moore, 2007; Orasanu & Mahajan, 2013)
- Nutrition and eating routines (Rensel, 2013; Riccio & Rossano, 2015)
- Fatigue management (Asano, Berg, Johnson, Turpin & Finlayson, 2015; Forwell, 2013)
- Physical activity routines (Bethoux, 2013; Kargarfard, Etemadifar, Baker, Mehrabi & Hayatbakhsh, 2012)
- Sleep habits and routines (Clancy, Drerup & Sullivan, 2015; Strober, 2015).
An occupational therapy (OT) approach to treatment that focuses on behavior and lifestyle changes is Lifestyle Redesign®. OTs who utilize Lifestyle Redesign® help patients acquire health-promoting habits and routines (Clark, et al, 1997) to improve overall function, health, and quality of life. This methodology involves didactic presentation, peer exchange, direct experience, and personal exploration interventions, in order to facilitate reflection, and increase motivation for and the enactment of health-promoting behavior changes (Mandel, Jackson, Zemke, Nelson & Clark, 1999). A module format consisting of the aforementioned components is utilized to promote focused intervention implementation regarding different aspects of health management that serves to improve chronic condition self-management skills. Lifestyle Redesign® interventions can be delivered in group and one-to-one formats, with increased individualization of modules when working one-to-one.
Due to the efficacy of Lifestyle Redesign® methodology (Clark, et al, 2011; Clark et al, 1997; Jackson et al, 1998;) and the evidence in the MS literature regarding benefits of behavior and lifestyle change for disease self-management, the University of Southern California (USC) and the USC Occupational Therapy Faculty Practice (OTFP) provide both one-to-one and group based service opportunities for individuals living with an MS diagnosis.
One-to-one Lifestyle Redesign® services are provided at the USC OTFP. Collaboratively developed plans of care vary in duration, but typically last between eight and twelve visits. The Canadian Occupational Performance Measure (COPM), RAND Short Form 36 Health-Related Quality of Life questionnaire, and Multiple Sclerosis Quality of Life Inventory (MSQLI) are measures used to support the evaluation process, and are completed again at discharge. Modules that are utilized during follow-up visits to facilitate implementation of the Lifestyle Redesign® process cover a variety of performance areas, including:
- Bowel, bladder, and sexual symptom management
- Stress management
- Fatigue management
- Cognitive symptom management
- Healthy eating routines
- Physical activity routines
- Sleep habits and routines
- Time management
- Assertive communication and self-advocacy
All modules are structured to provide education, promote self-analysis and problem-solving, support strategy identification and prioritization of health-promoting changes in habits and routines, and facilitate short-term goal setting. While data has yet to be analyzed and published on the one-to-one service provision, early trends show improvements across overall COPM scores, a selection of MSQLI subscales, and specific RAND SF-36 subscores.
Group based Lifestyle Redesign® services for the MS population are delivered through the Optimal Living with MS program, which is a 11-week course that involves USC OT students delivering group and individual interventions for participants living with MS under the supervision of an OT faculty member. The course consists of 1.5 hours per week of OT, a one-hour educational speaker, and one hour of physical therapy. The OT group contains the four components of Lifestyle Redesign®, beginning with didactic education and peer-to-peer sharing, followed by an occupation-based activity, and concluding with one-to-one problem solving and goal setting between the participant and their assigned student. Modules implemented during the group format include fatigue management, stress management, assertiveness and self-advocacy, eating routines, adaptive equipment, and home safety.
Outcome measures administered pre- and post-program include the COPM and Modified Fatigue Impact Scale (MFIS). Significant improvements in functioning and quality of life are seen in both the COPM and MFIS scores. COPM Performance score mean increased by 1.75 points and COPM Satisfaction score increased by 2.68 points. Higher COPM scores indicate improved perceived performance or satisfaction in activities of functional difficulty that were identified as most important upon evaluation. MFIS Physical Subscale mean decreased by 4.23 points, Cognitive Subscale mean decreased by 3.95 points, and Psychosocial Subscale mean decreased by 0.90 points. Total MFIS Score revealed a mean decrease of 9.60 points. Lower MFIS scores indicate less impact of fatigue on the different domains.
While data has yet to be published on the one-to-one Lifestyle Redesign® service provision, the Optimal Living with MS group data adds to a growing body of evidence that suggests lifestyle-based OT interventions can make a significant difference in function, health, and quality of life for people living with MS. Participants demonstrated improvements in perceived participation and satisfaction in self-identified areas of functional and lifestyle difficulty. In addition, the results demonstrate that participants felt reduced impact of fatigue in physical, cognitive, and psychosocial areas of functioning. Outcomes from the one-to-one service line continues to be collected, with upcoming planned analysis and publication of results, in order to support OT’s role in providing services to the MS population.
About the Author:
Rebecca Cunningham, OTD, OTR/L received her Master’s and Clinical Doctorate of Occupational Therapy degrees from the University of Southern California. Her clinical residency was completed at the USC Occupational Therapy Faculty Practice, where she provided Lifestyle Redesign® services and focused on further development of the Lifestyle Redesign® program for individuals living with Multiple Sclerosis. As a clinical faculty member at the USC Occupational Therapy Faculty Practice, Dr. Cunningham works with clients in the multiple sclerosis, chronic pain and headaches and mental health programs, and is a member of the USC Multiple Sclerosis multidisciplinary team.
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Mandel, D.R., Jackson, J.M., Zemke, R., Nelson, L. & Clark, F.A. (1999). Lifestyle redesign®: Implementing the well elderly program. Bethesda, MD: The American Occupational Therapy Association.
Mohr, D.C., Lovera, J., Brown, T., Cohen, B., Neylan, T., Henry, R…Pelletier, D. (2012). A randomized trial of stress management for the prevention of new brain lesions in MS. Neurology, 79: 412-419.
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Jan Stube, PhD, OTR/L, FAOTA & Debra Hanson, PhD, OTR/L, FAOTA
The Collaborative Occupational Measure of Performance and Change over Time™ (COMPACT™) is designed to promote best practice ideals in occupational therapy (OT) – client-centered and occupation-focused intervention. This includes a focus on occupational goals that are valued by the client and caregiver, objective assessment of occupational performance, and collaborative goal setting that sets the stage for client engagement in the therapy process (Aiken, Fourt, Cheng & Polatajko, 2011). Why is this important? Clients and caregivers who do not actively participate in the goal setting process or who are not aware of their (client) goals are not as invested in the therapy process, slowing therapy progress (Colaianni & Provident, 2010; Maitra & Erway, 2006). Maintaining the focus of OT intervention on occupation rather than underlying impairment is most motivating to the client and a stimulant to therapy progress (Blaga & Robertson, 2008; Moats, 2007; Palmadottir, 2006; Smallfield & Karges, 2011). Predictably, client satisfaction, an important consideration for medical reimbursement, is enhanced. Similarly, caregivers who are informed of their family member’s condition and engaged in the therapy process are better able to participate responsibly in discharge planning than those who are not involved, or engaged late in the rehabilitation process (Bright et al., 2012; Gustafsson et al., 2010.
Description of the COMPACT™:
Based on the AOTA’s OT Practice Framework – 3rd edition (2014), the client’s (or patient’s) perspective on their occupational participation is at the heart of the COMPACT instrument. Provided in an easy-to-use checklist format, the COMPACT™ consists of three forms:
Form A reflects the perspective of the patient and the caregiver in regard to previous pattern of occupational performance, current difficulties in activity participation and priorities for occupational therapy intervention.
Form B is designed to re-assess the priorities of the patient and caregiver in response to therapy progress. Through form use, 1) the patient and his or her perspectives of skill level in occupational performance are now rated, and 2) the patient and caregiver’s perspectives of priorities for future occupational therapy intervention are identified.
Form C provides a format for gathering together the perspectives of the patient, the caregiver and the therapist for collaborative goal-setting. It provides 1) a record of the patient and caregiver priorities, 2) therapist ratings of objective performance in areas of occupation (using relevant observation-based assessment tools), and 3) a format for identifying goals derived from analysis of patient and caregiver priorities and objective performance ratings.
Overall, the COMPACT™ is intended for use as a tool to facilitate ongoing communication between the patient, the caregiver and the therapist over time. This enables client-centered treatment planning responsive to objective measurement of occupational competency.
The initial version of the COMPACT™ tool was reviewed by a panel of occupational therapy experts from across practice areas who verified the tool’s value. Preparation for pilot testing in clinical settings was next, and involved editing the forms for clinical usage and development of an administration manual. Receiving university institutional review board approval and copyright and trademark filing through University of North Dakota followed.
A three-month pilot testing phase of the COMPACT™ tool then occurred across two Midwestern U.S. physical rehabilitation health systems, both inpatient and outpatient settings. Using convenience sampling, 20 experienced OT practitioners were recruited for study participation. They, in turn, recruited 18 client participants for COMPACT™ data gathering.
The mixed methods research design used for the pilot study included data gathering from both OT and client participant groups. Focus groups with OT practitioners yielded feedback (formal and audiotaped) regarding the process and experiences of using the assessment tool (qualitative information). This was combined with the clients’ completion of the COMPACT™ tool (quantitative data) to complete the pilot testing research phase.
Descriptive client participant data was collected via the COMPACT™ forms using SPSS, v.21. Qualitative data from the focus group was coded and analyzed for emerging patterns and themes.
Results & Summary
All focus group OT practitioner participants agreed regarding the value, face validity and content validity of the COMPACT™. Client data supported face and content validity by their ability to select occupations of importance to them (100%) and to self-rate five occupations as priorities for intervention in the majority of the cases (83%). An interesting result was that the clients’ self-selected priorities extended beyond ADLs alone; clients selected IADLs along with or instead of ADLs in the majority of cases; this was found across practice settings (acute care, inpatient, and outpatient).
Recommendations included the addition of an acute care COMPACT™ form to limit client choices and minimize the risk of overwhelming medically fragile clients. Additionally, OT practitioners consistently stated that they felt the forms were less appropriate for use with clients with cognitive challenges; this is a consideration for OT practice usage. Although the COMPACT™ is designed for use with caregivers as well as the client receiving direct care, only two caregivers participated in the pilot study. The inclusion of caregivers in client-centered occupational priority intervention planning is recommended for further research.
In response to positive feedback from our pilot study regarding the clinical value, face validity, and initial content validity of the COMPACT™ tool, we revised the forms and administration manual and published the tool on the University of North Dakota’s Department of Occupational Therapy website, http://www.med.und.edu/occupational-therapy/. We invite readers to view the COMPACT™ and, if interested, to contact us regarding: 1) what they find valuable/important or challenging about the COMPACT™ tool as they use it in practice; and 2) their interest in participation with us in a multi-site research trial.
Jan Stube, PhD, OTR/L, FAOTA is a professor in the Department of Occupational Therapy, University of North Dakota, Grand Forks, ND. Her research interests are in the areas of physical disabilities practice, including neurorehabilitation, and the scholarship of teaching and learning in higher education.
Debra Hanson, PhD, OTR/L, FAOTA is a professor and academic fieldwork coordinator in the Department of Occupational Therapy, University of North Dakota, Grand Forks, ND. Her research interests include fieldwork education, professional identity, and application of best practice ideals.
Aiken, F., Fourt, A., Cheng, I.K.S., & Polatajko, H.J. (2011). The meaning gap in occupational therapy: Finding meaning in our own occupation. Canadian Journal of Occupational Therapy, 78(5), 294 – 302.
American Occupational Therapy Association (AOTA). (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl. 1), S1-S48. http://dx.doi.org/10.5014/ajot.2014.682006.
Blaga, L., & Robertson, L. (2008). The nature of occupational therapy in acute physical care settings. New Zealand Journal of Occupational Therapy, 55, 11 – 18.
Bright, F.A.S., Boland, Pl, Rutherford, S.J., Kayes, N.M., & McPherson, K.M. (2012). Implementing a client-centred approach in rehabilitation: An autoethnography. Disability and Rehabilitation, 34, 997 – 1004. DOI:10.3109/09638228.2011.629712
Colaianni, D., & Provident, I. (2010). The benefits of and challenges to the use of occupation in hand therapy. Occupational Therapy in Health Care, 24(2), 130 – 146.
Gustafsson, L., Hodge, A., Tobinson, M., McKenna, K., & Bower, K. (2010). Information provision to clients with stroke and their carers: Self-reported practices of occupational therapists. Australian Occupational Therapy Journal, 57, 190 – 196.
Maitra, K., & Erway, F. (2006). Perception of client-centered practice in occupational therapists and their clients. The American Journal of Occupational Therapy, 60(3), 298 – 310.
Moats, G. (2007). Discharge decision-making, enabling occupations, and client-centred practice. Canadian Journal of Occupational Therapy, 74(2), 91 – 101.
Palmadottir, G. (2006). Client-therapist relationships: Experiences of occupational therapy clients in rehabilitation. British Journal of Occupational Therapy, 69(9), 394 – 401.
Smallfield, S., & Karges, J. (2009). Classification of occupational therapy intervention for inpatient stroke rehabilitation. American Journal of Occupational Therapy, 63, 408 – 413.
By: Mary Ann McColl, PhD, MTS
What can occupational therapists do to integrate spirituality in practice? First, let’s think about how spirituality might arise in the day-to-day interactions in occupational therapy. There are usually two ways that clients let us know that they have spiritual issues on their minds, or that their functional problems may have a spiritual dimension – directly and indirectly (McColl, 2000). Some clients will be explicit about their religious beliefs and convictions, their public or private faith practices, and their relationship with a Higher Power. Others will approach the issue indirectly, by displaying symbols of their faith, by asking questions about issues such as life after death, reasons for things that happen, search for meaning, loss of hope or faith.
There are at least four ways that occupational therapists can engage with clients in response to either a direct or an indirect overture about spirituality (McColl, 2011).
- The first thing an occupational therapist can do, and something that every therapist should be prepared to do (regardless of his or her own faith experience or preparation), is to listen for and recognize the words, symbols, ideas or themes that clients may use to alert the therapist to the potential for a spiritual issue. Spiritual issues are sufficiently sensitive in our culture that clients may be insecure about raising them. It would be a shame indeed if a therapist was unable to appreciate the depth and importance of a spiritual issue that a client was trying to raise, and therefore left it unattended.
Although discussions of spirituality requires a significant degree of cultural competence, one need not know about every religion to be able to talk to someone about his or her spirituality. Discussions of spirituality may deal with generic concepts, like the relationship with a higher power, hope for the future, meaning in life, or belonging in a faith community. There are two difficulties that therapists typically encounter when clients raise spiritual issues. Either they do not have language or concepts to respond confidently and professionally, or they are worried about imposing their own beliefs on the client. Both are legitimate concerns, but both can be dealt with by simply acknowledging the depth and importance of the issue the client is raising, and asking if he or she would like to discuss it further.
- Another very legitimate option for therapists encountering spiritual issues is to offer to help clients find someone who is qualified to have in-depth spiritual conversations with them. This may be an officiant of the client’s own faith tradition, or it may be a multi-faith chaplain, such as work in many health and social service facilities. Referral to a spiritual counsellor can be a very effective therapeutic contribution for a client who is struggling with a spiritual issue.
- Indirect spiritual interventions are a third way that therapists may choose to engage with clients whom they suspect have spiritual issues affecting their occupation. A review of the literature revealed six modalities that offer the opportunity of a spiritual experience or discussion, but that are not inherently spiritual or religious (McColl, 2011; 2016). These modalities can be used by therapists even if they are not spiritual or religious themselves.
- Narrative: The process of creating and relating narratives is a vehicle for spiritual exploration and growth, allowing the narrator to create meaning, to connect to spiritual themes (like hope, healing and redemption), and to make connections across past, present and future (Kirsch, 2011).
- Ritual: Rituals are ordinary activities that are invested with symbolic meaning when performed to celebrate, commemorate or sanctify important events or ideas ( Thibeault, 2011). They have the power to mark passages, transitions and milestones.
- Appreciation of nature: Experiences in the natural world can make one more aware of the mystery and connectedness of all things. The sense of awe and wonder that often accompanies experiences in nature can evoke thoughts and feelings about beauty, creation and the divine (Unruh, 2011).
- Creativity: A fourth type of indirect spiritual intervention is creative activity, or what Peloquin (1997) refers to as “making rather than doing” (p. 168). Creative activity affords an opportunity for unconstrained expression of spirit and communication of universal truths (Toomey, 2011; Woodbridge, 2011).
- Work: Work is an occupational medium that offers individuals an opportunity for service and contribution, for participation in a shared mission, for the dignity associated with a job well done, and for the rhythm of work and the orderliness of time structured by work routines (Baptiste, 2011).
- Movement: Movement therapy can evoke spiritual remembrance of our physical connection to the earth, to our bodies and to each other. Embodiment is a fundamental aspect of what it means to be human, even when the body is physically limited or constrained (McColl, 2016).
- The fourth option is direct spiritual intervention, meaning specific faith practices, such as prayer, meditation, worship, or spiritual counselling. These interventions usually require additional training and qualifications, and most therapists will feel that these are outside of their professional scope of practice, unless they have obtained some specialty certification. McColl & Farah (2011) offer guidelines for the use of direct spiritual interventions. They suggest that a therapist ask him or herself the following four questions:
- Is the client’s problem inherently spiritual in nature?
- Is the client receptive to spiritual intervention?
- Is the therapist qualified to offer the spiritual intervention?
- Would the therapist’s employer support him or her in offering this type of intervention?
If the answer to all four questions is “yes”, then a therapist may consider offering to pray, meditate, worship or engage in other spiritual practice with a patient. There are a number of cautions outlined in McColl and Farah (2011), such as the need for a secure therapeutic relationship, the necessity for the practice to be genuine, and the assurance that it is in no way forced or imposed.
In summary, there are a number of options for occupational therapists to acknowledge and honour the spiritual dimension of their clients. They fall on a continuum from simply recognizing and giving voice to spiritual concerns, all the way to engaging in direct spiritual practices. Therapists will vary on the extent to which they are comfortable with these options or even interested in this area of practice – and that is nothing to be ashamed of. What would be a shame indeed is to fail to recognize spiritual suffering in a client, or to recognize it but not know what to do. I hope this brief article reassures occupational therapists that they can not only identify spiritual issues, but also that they can do something helpful –
- by acknowledging the issue,
- by referring to a qualified spiritual health professional,
- by providing opportunities within familiar therapeutic modalities for spiritual expression and exploration, and
- in some carefully considered cases, by sharing in a spiritual practice with a client.
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About the Author:
Mary Ann McColl, PhD, MTS is a Professor of Occupational Therapy in the School of Rehabilitation Therapy at Queen’s University in Kingston, Ontario, Canada. She is also Associate Director of the Centre for Health Services and Policy Research, Professor in Public Health Sciences, and Academic Lead for the Canadian Disability Policy Alliance. Dr. McColl is author of Spirituality and occupational therapy (2nd ed.), as well as the Canadian Occupational Performance Measure (5th ed.), Theoretical basis of occupational therapy (3rd ed.), Disability & social policy in Canada (2nd ed.), and Inter-professional primary health care.
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2. Krisch, B. (2011). Narrative: What makes narratives spiritual and how can we use them in OT? In M.A. McColl (Ed.), Spirituality and occupational therapy (2nd ed.) (pp. 201-208). Ottawa, ON: CAOT Publ.
3. McColl, M. A. (2000). Muriel Driver Memorial Lecture: Spirit, occupation and disability. Canadian Journal of Occupational Therapy, 67 (4) 217-229. http://dx.doi.org/10.1177/000841740006700403
4. McColl, M. A. (2011). Spirituality and occupational therapy (2nd ed). Ottawa, ON: CAOT Publ.
5. McColl, M. A. (in press). Spirituality among older adults. In Bonder, B. (Ed.) Functional Performance in Older Adults (4th ed.) Phildelphia: F.A. Davis.
6. McColl, M.A., & Farah, J. (2011). Guidelines for direct spiritual intervention. In M.A. McColl (Ed.), Spirituality and occupational therapy (2nd ed.) (pp 193–200). Ottawa, ON: CAOT Publ.
7. Peloquin, S. M. (1997). Nationally speaking-The spiritual death of occupation: Making worlds and making lives. American Journal of Occupational Therapy, 51, 167-168. doi: 10.5014/ajot.51.3.167
8. Thibeault, R. (2011). Ritual: Ceremonies of life. In M.A. McColl (Ed.), Spirituality and occupational therapy (2nd ed) (pp. 233-240). Ottawa, ON: CAOT Publ.
9. Toomey, M. (2011). Creativity: Spirituality through the visual arts. In M.A. McColl (Ed.), Spirituality and occupational therapy (2nd ed) (pp. 233-240). Ottawa, ON: CAOT Publ.
10. Unruh, A. (2011). Appreciation of nature: Restorative occupations. In M.A. McColl (Ed.), Spirituality and occupational therapy (2nd ed) (pp. 249-256). Ottawa, ON: CAOT Publ.
11. Woodbridge, M. (2011). Creativity: Soul sessions. In M.A. McColl (Ed.), Spirituality and occupational therapy (2nd ed) (pp. 223-232). Ottawa, ON: CAOT Publ.
McColl, M. A. (in press). Spirituality and client-centred practice. In Humbert T (Ed.) Occupational therapy & spirituality. AOTA Publ.
McColl, M. A. (2002). Occupation in stressful times. American Journal of Occupational Therapy, 56(3), 350-353. http://dx.doi.org/10.5014/ajot.56.3.350
McColl, M. A., Bickenbach, J., Johnston, J., Nishihama, S., Schumaker, M., Smith, K., …Yealland, B. (2000a). Changes in spiritual beliefs after traumatic disability. Archives of Physical Medicine and Rehabilitation, 81(6), 817-823. http://dx.doi.org/10.1053/apmr.2000.5567
McColl, M. A., Bickenbach, J., Johnston, J., Nishihama, S., Schumaker, M., Smith, K., & Yealland, B. (2000b). Spiritual issues associated with traumatic-onset disability. Disability and Rehabilitation, 22(12), 555-564. http://dx.doi.org/10.1080/096382800416805
By: Stephanie Kokesh, OTD, OTR/L
Addressing sexual health within occupational therapy is vital to providing comprehensive care. It requires skill, tact, and access to appropriate resources. In both clinical practice and the related literature, occupational therapy efforts traditionally focus on restoring independence within productive, self-care and leisure activities (Sakellariou & Algado, 2006). Often overlooked, sexual activity is an activity of daily living that enables well-being through the engagement in “activities that result in sexual satisfaction and/or meet relational or reproductive needs” (American Occupational Therapy Association [AOTA], 2014, p. S19). Although a majority of occupational therapists support holistic, “whole” person care (Jones, Weerakoon, & Pynor, 2005) sexual activity does not receive the same attention as does the more typically addressed activities of daily living (ADL) such as bathing, grooming, and dressing (Hattjar, Parker, & Lappa, 2008). Sexual health – of which includes sexual activity – should be regularly addressed within occupational therapy services for adults with an accepting, problem-solving attitude (Solet, 2007) in order to address the needs of patients from all backgrounds.
Access to and knowledge of related resources have the potential to improve efforts of addressing sexual health from the OT perspective. Oftentimes, one of the most difficult steps is simply opening the door to discussion. Two useful methods, of which can be used partially or in combination, include the PLISSIT Model and the Sexual Assessment Framework (McBride & Rines, 2000).
The PLISSIT model has been a longstanding model for addressing any topic that may be considered “sensitive.” The PLISSIT Model involves: Permission, Limited Information, Specific Suggestions, and Intensive Therapy (see Figure below). The “levels” of information are arranged as such because a majority of clients typically receive the necessary information as related to Permission and Limited Information (and do not require further formal intervention).
Permission may refer to either clinician initiated discussion, or clinician response to a client remark, from which a clinician can normalize the challenges the client is experiencing.
A very simple way to obtain Permission for further discussion is through use of the normalizing “3-Step Method” (McBride & Rines, 2000):
- “Many men/women with (condition) have concerns or questions about the sexual part of their lives.”
- “Have you thought about this at all?”
- “Would you like to talk to someone about it?”
Oftentimes, Permission can easily lead to Limited Information of which involves situating general and basic sexual health related education alongside typically addressed ADL/IADL:
E.g. “We have discussed your sternal precautions as related to your everyday tasks. In addition, a lot of folks have questions about sexual activity after open heart surgery. I want to briefly discuss safety modifications for the next few months.
If further information is desired or required, one is able to provide an individual with Specific Suggestions accordingly. This would involve discussion related to the individual’s unique practices, roles and routines, with subsequent activity analysis and joint problem solving in order to provide the client with relevant individualized education. This is also a point during which the Sexual Assessment Framework can further guide focused discussion (McBride and Rines, 2000).
Intensive Therapy is outside the scope of usual OT practice, and includes referral to or intervention by specialized clinicians including but not limited to the areas of: sexual medicine, gynecology, urology, psychiatry, psychology, etc.
The Sexual Assessment Framework is a road map for addressing the many components that are involved in sexual health. Borrowed from nursing literature (McBride & Rines, 2000), the framework includes: Sexual Knowledge; Sexual Behavior; Sexual Self-View; Sexual Interest; Sexual Response; Fertility and Contraception; and Sexual Activity.
Sexual knowledge involves an individual’s values and beliefs about sex and sexuality. (McBride & Rines, 2000). An OT clinician can provide a client with education regarding anatomy/physiology as impacted by the client’s condition or change in health/functional status. For example, an individual who has sustained a spinal cord injury, will greatly benefit from education regarding changes in neurological function, including impact on sexual function.
Sexual Behavior involves the “ability to initiate or maintain a social/sexual relationship” while Sexual Self-View encompasses one’s self-concept and body image. An OT clinician can explore the client’s former social/relationship roles in order to re-define one’s self as a person, a man or woman, and as a sexual being so as to develop new or modified roles and routines. The Canadian Occupational Performance Measure can be used to identify and prioritize facets related to one’s sexuality and sexual self-view.
Sexual Interest refers to the physical and psychological drive behind sexual activity engagement. Oftentimes, anxiety, fear, depression, and pain often interfere with sexual desire or “libido.” An OT clinician should consider targeting alternative pain management strategies, guided relaxation/meditation, or stress management.
Sexual response refers to the physical response and arousal that accompanies sexual activity. We traditionally define this as including: penile erection/vaginal lubrication, nipple erection, ejaculation, and orgasm. Depending on one’s health status, it is important to know how the client’s response has changed. For example, if related to a spinal cord injury, increased physical stimulation may be required to achieve erection, orgasmic threshold may be elevated, and/or increased duration for the refractory period may exist. An OT clinician can empower the client to participate in body/sensory mapping – with self or partner – so as to determine what forms of physical input are pleasurable. In addition, employ the client to consider or explore non-penetrative sexual/intimate activities. Furthermore, an occupational therapist might provide basic education surrounding sexual response in order to assist a patient in identifying challenges and referring patients to the appropriate professionals.
Fertility and Contraception involve family planning, safe sex, and integration of birth control. Depending on the client’s practices, OT may be involved in medication management strategies, or mechanical device management as related to UE function and coordination to manage a male condom; female condom or diaphragm; or feminine hygiene products. In addition, OT can target childcare as related to the necessary motor, process, and social skills (AOTA, 2014; McBride & Rines, 2000).
Lastly, Sexual Activity includes the “motor abilities, hand function, balance, strength, management of bowel and bladder programs…dressing and undressing, transferring, and affectionate activities such as hugging and petting” (McBride & Rines, 2000, p. 10). Patients can be assisted with identifying any challenges related to body functions (e.g. pain, sensation, neuromusculoskeletal and movement-related functions) and performance skills (e.g. motor and praxis skills, sensory-perceptual skills, emotional skills, cognitive skills, and communication/social skills) that may be interfering with the occupational performance of sexual activity. Such information can help the occupational therapist in designing an appropriate plan that meets the patient’s goals while aligning with his/her sexual values and beliefs (AOTA, 2014; McBride & Rines, 2000).
Addressing sexual health within occupational therapy is imperative but infrequently occurs. Often, patients expect clinicians to initiate discussion about sex, whereas clinicians expect the patients to make the first move. Therefore, sometimes a “don’t ask, don’t tell” attitude exists, thus preventing initiation of a sexual health conversation altogether (Forsythe & Horsewell, 2006). Occupational therapists should adopt an active role within sexuality education and support programs (Summerville & McKenna, 1998) for adults receiving occupational therapy services.
The infrequent attention to sexual health related issues could potentially hinder the redefinition of the sexual self or the psychosocial adjustment within a person who has experienced a traumatic event or change in health status (Ide, 2004; Walters & Williamson, 1998). Studies have shown that patients rate sexual fulfillment and sexual reactivation as a high priority during rehabilitation (Northcott & Chard, 2000). In addition, patients who are more knowledgeable regarding sexual health information are more successful in achieving a satisfying sex life following an injury (Forsythe & Horsewell, 2006), thus contributing to increased well-being and quality of life (Jones, Weerakoon, & Pynor, 2005).
The foundation of approaching sexual health consists of maximizing existing or remaining function of both mind and body while adapting to any limitations with an optimistic, positive, and open attitude (Elliott, 2009). An occupational therapy clinician is well suited to encourage a patient to reconceptualize and explore new possibilities of sexual activity (Solet, 2007) through intervention and discussion surrounding sexual health. It is hoped that the suggestions and resources offered can assist occupational therapy clinicians with addressing sexual health and routinely including the discussion of sexual activity into practice.
Special thanks to the clinicians of the Sexual Health Rehabilitation Service of Vancouver Coastal Health, Vancouver, B.C., for sharing your vast amount of skill and knowledge.
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About the Author:
Stephanie Kokesh, OTD, OTR/L, CSRS is the Director of Clinical Education/Academic FW Coordinator for the OTA Program at (Community Based Education and Development d/b/a) CBD College, Los Angeles, CA. She continues to also practice clinically at Cedars-Sinai Medical Center. Stephanie is involved in professional organizations – AOTA, OT Association of CA (OTAC), ACOTE Educational Standards Review Committee, and the Los Angeles OT Leadership Forum (LAOTLF). Stephanie received her entry-level OTD from Creighton University in Omaha, NE. Her “excitement” for sexual health and OT began during her time at Creighton. She was extremely fortunate to have completed her 16-week professional rotation with the Sexual Health Rehabilitation Service at the G.F. Strong Rehab Centre in Vancouver, B.C.
Patient Friendly Resources (not all inclusive):
- PleasureAble Manual: Sexual Device Manual for Persons with Disabilities **FREE!!
- Kaufman, M., Silverberg, C., and Odette, F. (2007). The ultimate guide to sex and disability: For all of us who live with disabilities, chronic pain, and illness. Publisher: Cleis Press Inc.
3. Tepper, M. (2015). Regain that feeling: Secrets to sexual self-discovery. Publisher: CreateSpace Independent Publishing Platform
Videotape/DVD for Patient/Partner Education (not all inclusive):
Alexander, C. J. & Sipski, M. (Producers). (1993). Sexuality reborn: Sexuality following spinal cord injury. [Videotape]. (Available from the Kessler Medical Rehabilitation Research and Education Corporation, 1199 Pleasant Valley Way, West Orange, NJ 07052).
BC Rehab. (n.d.) Talking about sexual issues and spinal cord injury: A guide for professional caregivers. (Available from The BC Rehab Education Resource Centre, 700 West 57th Avenue, Vancouver, BC, V6P 1S1, (604) 321-3231).
Hebert, L. A. (Producer). (n.d.). Sex and back pain: How to restore comfortable sex lost to back pain. (Available from IMPACC USA, PO Box 1247, 7 Washington Street, Greenville, ME 04441).
Orner, E. (Producer). (n.d.) Untold Desires [Videotape]. (Available from Filmakers Library, 124 East 40th St, NY, NY 10016, (212) 808-4980).
Donnelly, S., Falardeau, K., Falardeau, M., & Gallagher, J. (2012). SexAbility. (Landmark Media, 3450 Slade Run Drive, Falls Church, VA, 22042) Can be purchased at: http://www.landmarkmedia.com/videos_detail.asp?videokey=1713.
Hattjar, B. (Ed). (2012). Sexuality and occupational therapy: Strategies for persons with disabilities. Bethesda, MD: AOTA Press
- Sipski, M. and Alexander, C. (1997). Sexual function in people with disability and chronic illness: A health professional’s guide. Maryland: Aspen Publishers, Inc.
- Sexual Health Rehabilitation Courses (for Allied Health) through British Columbia Institute of Technology
- American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process, 3rd Edition. American Journal of Occupational Therapy, 68(Suppl. 1), S1–S48. http:// dx.doi.org/10.5014/ajot.2014.682006
- Anderson, K. D. (2004). Targeting recovery: Priorities of the spinal cord-injured population. Journal of Neurotrauma, 21(10), 1371-1383.
- Elliott, S. (2009). Sexuality after spinal cord injury. In E. C. Field-Fote (Ed.), Spinal cord rehabilitation (pp. 513-529). Philadelphia: F.A. Davis
- Esmail, S., Esmail, Y., & Munro, B. (2001). Sexuality and disability: The role of health care professionals in providing options and alternatives for couples. Sexuality and Disability, 19(4), 267-282.
- Forsythe, E. & Horsewell, J.E. (2006). Sexual rehabilitation of women with a spinal cord injury. Spinal Cord, 44(4), 234-41.
- Greco, S. B. (1996). Sexuality education and counseling. In S. P. Hoeman (Ed.), Rehabilitation nursing: Process and application (pp. 594-623). Louis, MO: Mosby Inc.
- Hattjar, B., Parker, J. A., & Lappa, C. L. (2008). Addressing sexuality with adult clients with chronic disabilities: Occupational therapy’s role. OT Practice, 13(11), CE-1-CE-7.
- Ide, M., Watanabe, T., & Toyonaga, T. (2002). Sexuality in persons with limb amputation. Prosthetics and Orthotics International, 26, 189-194.
- Jones, M. K., Weerakoon, P, & Pynor, R. A. (2005). Survey of occupational therapy students’ attitudes towards sexual issues in clinical practice. Occupational Therapy International, 12(2), 95-106.
- McBride, K. E. & Rines, B. (2000). Sexuality and spinal cord injury: A road map for nurses. SCI Nursing, 17(1), 8-13.
- Northcott, R. & Chard, G. (2000). Sexual aspects of rehabilitation: The client’s perspective. British Journal of Occupational Therapy, 63(9), 412-418.
- Sakellariou, D. & Algado, S. S. (2006). Sexuality and disability: A case of occupational injustice. British Journal of Occupational Therapy, 69(2), 69-76.
- Solet, J. M. (2007). Optimizing personal and social adaptation. In M. Vining Radomski and C. A. Trombly Latham (Eds.), Occupational therapy for physical dysfunction. 6th (pp. 924-950). Philadelphia: Lippincott Williams & Wilkins.
- Summerville, P., & McKenna, K. (1998). Sexual education and counseling for individuals with a spinal cord injury: Implications for occupational Therapy. British Journal of Occupational Therapy, 61, 275-279.
- Townsend, E. A. & Polatajko, H. J. (2007). Enabling occupation II: Advancing an occupational therapy vision for health, well-being, & justice through occupation. Ottawa: CAOT Publications ACE.
- Walters, A. S. & Williamson, G. M. (1998). Sexual satisfaction predicts quality of life: A study of adult amputees. Sexuality and Disability, 16(2), 103-115.
By: Jami Dalchow, OTD, OTR/L, SCDCM
Recently, I was working with a patient who was only several days out from having had a stroke. While trying to engage him in conversation I asked what he did for a living. He replied “I drive truck. Well…I did. I won’t be able to anymore.” This is a common thought for individuals who have had a CVA and are now dealing with a loss and/or change in their independence. The ability to drive is so central to our lives that a sudden change in ability leaves individuals wondering what lies ahead. This can especially be true for working-age adults who equate the necessity of driving with the ability to work and be productive, in turn, making an income. Driving is often seen as a sign of independence and freedom regardless of age or disability. Any occupational therapy clinician that has ever had a conversation with a patient about driving or the potential for inability to drive can attest that is it not an easy topic to discuss.
Not all individuals who have had a stroke will be able to go back to driving. In one study, approximately 31% of patients who underwent inpatient rehabilitation following stroke returned to driving within 6 months (Aufman, Marghuretta, Barco, Carr, & Lang, 2013). A larger sample from a recent meta-analysis and systematic review found that 54% of participants with a stroke passed an on-road evaluation at an average time of 8.8 months following insult (Devos, Akinwuntan, Nieuwboer, Truijen, Tant, & De Weerdt, 2011). Driving is considered an instrumental activity of daily living (IADL) and is, therefore, our responsibility to address regardless of practice setting.
Driving is an incredibly complex task that requires many functional abilities, mainly grouped into motor, visual-perceptual, sensory and cognitive components. Depending on the type and severity of the stroke, one or more of these components can be impacted at varying degrees. Because there can be such a wide range of deficits following a stroke, driving evaluation should be a key component of any rehabilitation program. Some programs may have the capacity to evaluate patients close to discharge if appropriate. Other facilities may wish to evaluate the patient once outpatient therapy services have been concluded. Some facilities have taken the approach that driving will not be addressed until a follow-up neurologist appointment 2-3 months after discharge from the acute hospital setting as this allows optimal neurological improvement before formally evaluating any remaining deficit areas (Smith-Arena, Edelstein, & Rabadi, 2006). At one time, it was estimated that 87% of people who returned to driving after a stroke did not have any type of formal driving assessment (Fisk, Owsley, & Pulley, 1997). Although access to driving rehabilitation programs has increased since that time, there is still a large majority of patients who are not evaluated. The question should not ask if a driving evaluation is necessary, but rather when.
In recent years, physicians have been given educational material of how to assess older drivers and refer for further evaluation when appropriate (American Medical Association, 2010). This comprehensive manual includes topics on medical impairments, assessing physical function, assessing cognitive function, interventions, driving rehabilitation specialists, counseling, ethical responsibilities, state licensure laws, and medical conditions that affect driving. Although this resource is directed specifically at the medical physician it is a valuable resource for any professional working with older adults or any individuals who continue to drive.
If physicians are unsure about an individual’s fitness-to-drive they will often refer to a driving rehabilitation program for further assessment. Driving rehabilitation specialists, typically occupational therapists or occupational therapy assistants are experienced in assessment and/or management of a wide range of diagnoses including stroke. Just as all rehabilitation programs vary in their intervention strategies, all driving rehabilitation programs vary in their approach to assessment batteries. Some programs rely heavily on clinic based paper and pencil tests to predict on-road performance after stroke. While others, consider the on-road evaluation the gold standard for medical fitness to drive (Kay, Bundy, Clemson, & Jolly, 2008). A combination of the two approaches is often used for a comprehensive evaluation. The clinical evaluation can identify deficit areas that the occupational therapist needs to be watch for during the on-road evaluation. Without the clinical evaluation, the therapist may miss key information that is essential for safe driving. Often, the clinical evaluation will help to discover a field cut, memory impairment, decreased cervical range of motion, or slowed processing speed.
There are many assessments and intervention strategies that you, as an occupational therapy generalist clinician, can use to address driving with your patients regardless of what type of assessment the driving rehabilitation program near your facility uses. If you are questioning whether your patient who has had a stroke is ready to start driving again you can do a quick clinical screening to determine if they should be referred for further evaluation. Often times, if a patient has “passed” the screening with an occupational therapy generalist, it would not need to be completed again, although this varies by facility.
Clinical assessments that have been shown to predict driving ability include:
National Institutes of Health Stroke Scale (NIHSS)
Short Blessed Test
Mini Mental Status Examination (MMSE)
Functional Independence Measure (FIM)
Road Sign Recognition
Trail Making Test Part B (TMT B)
Useful Field of View (UFOV)
The Motricity Index
Visual fields testing
If a patient is referred for a formal driving evaluation, they can expect the assessment to take between 2-3 hours. The clinical screening/assessment typically lasts for 45 minutes – 1. 5 hours while the on-road evaluation lasts for 1-1.5 hours. Upon completion, the driving rehabilitation specialist will make a recommendation immediately and discuss the findings with the patient and family members. If it is determined that the patient is not ready to resume driving yet at that time, further recommendations will be made. Sometimes, an individual simply needs further occupational, physical, and speech therapy to continue working on neurological deficits.
Regarding intervention and driving preparedness for cognitive-perceptual training, a review by Golisz (2014) reported that cognitive-perceptual training with use of programs similar to the UFOV result in positive changes in driving performance. Speed-of-processing and reasoning training decreased the rate of driver at-fault motor vehicle accidents per year (by 50%). Computer based interventions are common and involve visual attention skills targeting UFOV – participants quickly identify and locate visual targets while the visual displays become progressively more challenging.
In terms of physical fitness, coordination, flexibility, and speed of movement have been associated with on-road performance. Golisz (2014) found moderate evidence supporting improved driving performance through use of physical tasks that require simultaneous cognitive-perceptual skills. Examples of noted activities include: use of peripheral vision to maintain several balloons in the air – could include an auditory cue to interact with a specific color of balloon; and responding to different auditory or visual signs while walking in order to target processing speed. Simulated driving activities with use of props appeared to improve self-reported driving skills and confidence. Task examples include head/neck/torso rotation to locate signs; and imitation of checking the rearview mirror, braking, or steering during an audiotape of roadway sounds.
A generalist OT practitioner has the knowledge and the ability to initiate screening, assessment, and intervention for individuals post-stroke in order to document on and promote the possibility of a return to driving. Targeting of driving related performance skills along the care continuum can contribute to the assessment completed at a driving rehabilitation facility as well as is invaluable to the patient during the journey of recovery.
Valuable Resources for Occupational Therapists regarding Driving
AMA Physicians Guide to Assessing and Counseling Older Drivers
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About the Author
Dr. Jami Dalchow received her Bachelor of Science from South Dakota State University (SDSU) before obtaining her OTD from Washington University in St. Louis. It was at Washington University that she developed a love for all things driving and occupational therapy. She received a majority of her training regarding clinical assessments and on-road evaluations during her graduate work. She was fortunate enough to be able to start practicing with her area of passion after she became employed at Sanford Health in Sioux Falls, SD. Jami holds the Specialty Certification in Driving and Community Mobility (SCDCM) from AOTA.
She enjoys spending her days evaluating medical fitness-to-drive and completing driver training after a disability.
American Medical Association. (2010). Physicians Guide to Assessing and Counseling Older Drivers. http://www.ama-assn.org/ama1/pub/upload/mm/433/older-drivers.pdf.
Aufman, E., Bland, M., Barco, P., Carr, D., & Lang, C. (2013). Predictors of Return to Driving After Stroke. American Journal of Physical Medicine and Rehabilitation, 92(7). 627-634.
Devos, H., Akinwuntan, A.E., Nieuwboer, A., Truijen, S., Tant, M., & De Weerdt, W. (2011). Screening for Fitness to Drive after Stroke. Neurology. 76. 747-756.
Fisk, G., Owsley, C., & Pulley, V. (1997). Driving After Stroke: Driving exposure, advice, and evaluations. Archives of Physical Medicine and Rehabilitation. 78. 1338-1345.
Golisz, K. (2014). Occupational Therapy Interventions to Improve Diving Performance in Older Adults: A Systematic Review. American Journal of Occupational Therapy, 68(6), 662-669.
Kay, L., Bundy, A., Clemson, L., Jolly, N. (2008). Validity and Reliability of the On-road Driving Assessment with Senior Drivers. Accident Analysis & Prevention. 40 (2). 751–759
Smith, L., Edelstein, L., & Rabadi, M. (2006). Predictors of a Successful Driver Evaluation in Stroke Patients After Discharge Based on an Acute Rehabilitation Hospital Evaluation. American Journal of Physical Medicine and Rehabilitation. 85(1). 44-52.
Using the Motor Assessment Scale: Updates to assessing hand function, as a quick and comprehensive evaluation of motor function in stroke survivors
By: Joyce Sabari, Ph.D, OTR, FAOTA
UPDATE: The Motor Assessment Scale Resources Web Site is NOW Live
Current evidence-based practice for motor rehabilitation after stroke is influenced by task-oriented approaches that aim to improve overall function related to balance, gross mobility, and use of the paretic limbs. Therapists are encouraged to use standardized assessment tools for objective measurement of client progress, communication about client status between different treatment sites within the continuum of care, and research investigating the efficacy of selected interventions.
The Motor Assessment Scale (MAS) is a standardized assessment devised by Carr, Shepherd, Nordholm & Lynne (1985) to assess motor function in stroke survivors and to correspond with the motor relearning approach to recovery after stroke (Carr & Shepherd, 1998; 2007). The MAS is a well-studied assessment with properties that make it useful for rehabilitation therapists, and is specifically recommended as a measure of post-stroke motor function in the American Heart Association’s Clinical Practice Guideline for Stroke Rehabilitation (Duncan, Zorowitz, et al, 2005) and the Canadian health system’s Evidence-Based Review of Stroke Rehabilitation (Salter et al, 2012). Objective reviews of stroke assessments typically commend the MAS for reliability and ease of administration (Poole & Whitney, 2001; Fasoli, 2003). The MAS continues to be used extensively as an outcome measure in studies of rehabilitation interventions for stroke survivors (Langhammer, Stanghelle, Lindmark, 2009; Hayward et al, 2013, Colomer, et al, 2013; Katrak, Black & Peeva, 2011, Kwah, et al, 2013).
The MAS provides a standardized scoring system for assessing eight categories of motor behavior:
- Supine to Side-lying
- Supine to Sit
- Balanced Sitting
- Sit to Stand
- Upper Arm Function
- Hand Movements
- Hand Activities
The full protocol is available at: http://www.rehabmeasures.org/pdf%20library/motor%20assessment%20scale%20testing%20form.pdf
Each category is scored on a 7 point scale (0-6), based on a person’s ability to perform specific tasks. The tasks in each category are intended to be hierarchical; that is, the ability to accomplish task 6 implies the ability to accomplish tasks 1 through 5. This arrangement reduces administration time and increases its appeal to clinicians.
Two of the 8 items on the MAS assess hand function. A third item on the MAS assesses upper arm function (defined as a person’s ability to functionally use the shoulder and elbow). In response to concerns raised in a previous study (Poole & Whitney, 1988) about the hierarchies used to assign scores on the hand items, Sabari et al. (2005) used Rasch analysis to evaluate the validity of the scoring hierarchy of the 3 upper limb items This Rasch analysis of a sample of 100 stroke rehabilitation patients provided support for the hierarchical scoring criteria proposed by the MAS developers for upper-arm function. However, the analysis showed significant problems with the scoring hierarchies for the hand movements and the advanced hand activities items. Specifically, several criteria were not in order of performance difficulty, significant gaps in difficulty were found between adjacent criteria, and some criteria were redundant with one another in their levels of difficulty. Subsequent studies by independent authors (Aamodt, Kjendahl & Jahnsen, 2006; Pickering et al, 2010) corroborated these findings.
Though many evaluations of motor function in stroke survivors have been developed and piloted, very few provide clinicians with a single tool that provides holistic information about the multiple aspects of motor performance that are critical components to neurorehabilitation interventions. Aside from its original problems in the hand items, the Motor Assessment Scale provides a quick, comprehensive assessment of motor function in stroke survivors. Therefore, I worked with colleagues to redesign the two hand items on the MAS, following a multi-step process of scale development, refinement and Rasch analysis (Sabari, Woodbury & Velozo, 2014). The published report is available at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4142312/
Data collectors at eight clinical sites were enthusiastic about the utility of the newly developed hand items, and it is my sincere hope that, with these suggested improvement, occupational therapy clinicians will consider adopting the MAS as a clinical assessment tool. I am currently working with colleagues at SUNY Downstate Medical Center to develop a resource web page, which will provide therapists with the complete test protocol, training videos and other materials to help them use the tool with confidence. We hope the webpage will be accessible by January 1, 2016. I invite you to send me an email if you would like to receive notification, with the link, when this webpage becomes available.
To read more from Occupational Therapy Cafe on task-oriented approaches click here
About the Author
Joyce Sabari, PhD, OTR, FAOTA is Associate Professor and Chair of the Occupational Therapy Program at SUNY Downstate Medical Center. In addition to her published work related to the Motor Assessment Scale, she has written several textbook chapters about neurorehabilitation and task-based approaches to improving motor function in stroke survivors. She is also the author of the 2008 edition of Occupational Therapy Practice Guidelines for Adults with Stroke, published by AOTA Press.
Aamodt, G., Kjendahl, A., Jahnsen, R. (2006). Dimensionality and scalability of the Motor Assessment Scale (MAS). Disability and Rehabilitation, 28, 1007-1013.
Barker, R.N., Brauer, S.G., Carson, R.G. (2008). Training of reaching in stroke survivors with severe and chronic upper limb paresis using a novel nonrobotic device: a randomized clinical trial, Stroke, 39(6), 1800-1807.
Brauer, S.G., Bew, P.G., Kuys, S.S., Lynch, M.R., Morrison, G. (2008). Prediction of discharge destination after stroke using the Motor Assessment Scale on admission: A prospective, multisite study, Archives of Physical Medicine and Rehabilitation, 89(6), 1061-2065.
Carr, J.H. & Shepherd, R.B. (2003). Stroke rehabilitation: Guidelines for exercise and training to optimize motor skill, London: Butterworth Heinemann.
Carr, J.H. & Shepherd, R.B. (1998). Neurological rehabilitation: Optimizing motor performance, London: Carr, J.H. & Shepherd, R.B.
Carr, J.H., Shepherd, R.B. & Nordholm, L. (1985). Investigation of a new motor assessment scale for stroke patients. Physical Therapy, 65, 175-180.
Colomer, C., Baldovi, A., Torrome, S, et al. (2013) Efficacy of Armeo Spring during the chronic phase of stroke: Study in mild to moderate cases of hemiparesis, Neurologia, 28, 261-267.
Duncan, P.W., Zorowitz, R., Bates, B., Choi, J.Y., Glasberg, J.J., Graham, G.D., Katz, R.C., Lamberty, K. & Reker, D. (2005). Management of Adult Stroke Rehabilitation Care: A Clinical Practice Guideline – Appendix D, Stroke, 36, 100-143.
English, C.K., Hillier, S.L., Stiller, K.R., Warden-Flood, A. (2007). Circuit class therapy versus individual physiotherapy sessions during inpatient stroke rehabilitation: A controlled trial, Archives of Physical Medicine and Rehabilitation, 88, 955-963.
Fasoli, S. (2003). Assessing Upper-Limb Motor Function in Clients with Stroke. American Occupational Therapy Association Physical Disability Special Interest Section Quarterly. 26(2), 1-4.
Hayward, K.S., Barker, S.G., Brauer, D., Lloyd, S., Horsley, A., Carson, R.G. (2013). SMART arm with outcome-triggered electrical stimulation: a pilot randomized clinical trial, Topics in Stroke Rehabilitation, 20, 289-298.
Katrak, P.H., Black, D., Peeva, V. (2011). Stroke rehabilitation is Australia in a freestanding inpatient rehabilitation unit compared with a unit located in an acute care hospital, Physical Medicine & Rehabilitation, 3, 716-722.
Kwah, L.K., Harvey, A., Diong, J., Herbert, R.D. (2013). Models containing age and NIHSS predict recovery of ambulation and upper limb function six months after stroke: An observational study, Journal of Physiotherapy, 59, 189-197.
Langhammer, B., Stanghelle, J.K., Lindmark, B. (2009). An evaluation of two different exercise regimes during the first year following stroke: A randomized controlled trial, Physiotherapy Theory and Practice, 25(2), 55-68.
Pickering, R.L., Hubbard, I.J., Baker, K.G., Parsons, M.W. (2010). Assessment of the upper limb in acute stroke: the validity of hierarchical scoring for the Motor Assessment Scale, Australian Occupational Therapy Journal, 57, 174-182.
Poole J, Whitney S. Motor Assessment Scale for stroke patients: Concurrent validity and interrater reliability. (1988). Archives of Physical Medicine and Rehabilitation, 69, 195-197.
Sabari, J.S., Lim, A.L., Velozo, C.A., Lehman, L., Kieran, O. & Lai, J.S. (2005). Assessing arm and hand function after stroke: a validity test of the hierarchical scoring system used in the motor assessment scales for stroke. Archives of Physical Medical Rehabilitation, 86, 1609-15.
Sabari, J.S., Woodbury, M., Velozo, C.A. (2014). Rasch analysis of a new hierarchical scoring system for evaluating hand function on the Motor Assessment Scale for Stroke, Stroke Research and Treatment, Volume 2014, Article ID 730298.
Salter, K., Campbell, N., Richardson, M., Mehta, S., Jutai, J., Zettler, L., Moses, M., McClure, A., Mays, R., Foley, N., Teasell, R. (2012). Outcome measures in stroke rehabilitation, in The Evidence-Based Review of Stroke Rehabilitation (EBRSR), R. Teasell, Ed., Chapter 21.
By: Donna Edwards, MA CCC-SLP, BCS-S
As we begin our pediatric series, I thought it best to build on the previous article “Dysphagia in Children and Young Adults with Neuromuscular Disorders” by Lenie van den Engel-Hoek, PhD who in her opening paragraph introduces us to dysphagia and a relationship to choking.
Eating is a learned skill incorporating a myriad of complex neurophysiological processes that are impacted by a multitude of variables in the meal time environment, in the presentation by and expectations of the feeder, and in the inherent uniqueness of the pediatric patient, family and culture that we serve. Over this series we will delve into various aspects of typical/atypical feeding and swallowing.
For decades professionals have explored use of clinical techniques and research endeavors to provide improved oral feeding for children and thus optimize safety, growth, development, maturation and enhancement of mealtimes with family. Our ultimate goal has been optimization of feeding skills, enhancement of nutrition/hydration for growth and development, family interactions during meal times and support of cultural traditions.
Despite our diligence and understanding of feeding and swallowing disorders, our awareness of choking risk in pediatrics is often misaligned with current data.
This article was reposted from Dysphagia Cafe.
Use of Narrative and Portraiture in Qualitative Research: Exploring the Lived Experiences of Gay Men with HIV
By: David Leary, PhD, OTR/L
At a recent professional conference I attended, a presenter described the current health care climate as “volatile”. At first, I thought that too strong a word, perhaps too negative. Yet the terms “dynamic” and “challenging” seemed over used. However we describe the current experience of health care, we might agree that the experiences of being a health care consumer, as well as a health care professional are filled with change. I find that when things around me are changing too fast, I try to ground myself in the familiar. As an occupational therapist, I find a way to make sense of the health care climate by returning to the foundational concept of occupation. One of my personal occupations over the past ten years has been attending classes in pursuit of a PhD.
As part of this schooling occupation, several years ago, I immersed myself in the process of conducting a qualitative research study. I wanted to take part of my clinical practice and get to know more about occupation in the lives of my clients. I chose for my topic to utilize narrative to explore the lives of men with HIV. One of my foundational assumptions was that these men experienced particular challenges to their engagement in meaningful activities or occupations. The five men who participated in this study self identified as gay men. I proposed that for these men living with HIV along with their membership in this marginalized group resulted in a unique and complex experience. The following describes the unique method I chose and what I learned about occupation through this research.
I have always been an avid reader of stories; I might even say that reading is one of my primary occupations. I do it for pleasure and I do it for work. I remember reading that the best place to begin a story was at the beginning. I used this simple idea to frame this research; as a collection of stories. There are a variety of different types of stories and they can serve a number of purposes. Storytelling can contribute to a sense of self and locate one in a cultural community. Stories can serve as a resource for making sense of conflicts and contradictions. The stories I explored in this research represented a variety of voices and genres. The men who participated in this storytelling process did so through their own words and actions. Transcripts of narrative interviews and field notes based on my observations reflected their words. On occasion, I added my voice to the collection and told a few of my own stories. Each of these stories focused on the intersections of experience, occupation, and health in the lives of gay men infected with the human immunodeficiency virus (HIV).
Living with the double stigma of homosexuality and HIV / AIDS may, perhaps, be outside of the experience of the majority in our society. “Misinterpretations of people’s experiences and meanings are commonplace with behavior outside the experience and lifestyle of conventional academic researchers” (Becker, 1998, p.15). Foregrounding personal narratives allowed the participants themselves to relay their experiences and their meanings in their own words; thereby reducing the potential for misinterpretation. This research emphasized a focus on particularities; recording subtle, specific, descriptions and nuanced details of human experiences. I proposed that understanding several differing perspectives offered glimpses into the array of possible lived experiences; perhaps illuminating more universal patterns.
I am an occupational therapist. I found it difficult to transition to a “researcher”. I chose a method to conduct my study that I felt complemented my skills used in clinical practice. Portraiture is an innovative methodology drawing on phenomenological, narrative and ethnographic foundations. The goal of portraiture was to create a narrative that included the systematic and careful description of good ethnography, with the evocative resonance of fine literature. This method, developed by Sarah Lawrence-Lightfoot, was a means to join science and art; the empirical and the aesthetic. In this study, this method was used to create a narrative portrait of each of the five participants, conveying their essence through a painting with words. “The portraits are designed to capture the richness, complexity, and dimensionality of human experience in social and cultural context, conveying the perspectives of the people who are negotiating those experiences.” (Lawrence-Lightfoot & Davis,1997, p.3).
The development of portraiture was based on “…a long and rich history of dialogue and collaboration between artists and scholars” (Lawrence-Lightfoot & Davis, 1997, p.5). Lawrence-Lightfoot drew upon the work of Oliver Sacks (1985), The Man Who Mistook His Wife for a Hat, as he argued that science and art together contributed to the medical stories patients share with physicians. Works by William James and John Dewey were noted as examples of “boundary crossings and improvisations” between science and the representations of reality in their writings (Lawrence-Lightfoot & Davis, 1997, p. 6).
The visual metaphor of the portrait utilized in this study, had been previously used to describe ethnographic work. Clifford Geertz (1973) likened ethnographic work as being made or created, such as representing someone in a painting. “The line between the mode of representation and substantive content is as undrawable in cultural analysis as it is in painting” (p.16). Portraiture emphasized the importance of the humanistic dimensions of art via interpretation, imagination and creativity, balanced by “rigorous and systematic attention to the details of social reality and human experience” (Lawrence-Lightfoot & Davis, 1997, p.10).
This method allowed the researcher to navigate borders that typically separate disciplines, purposes, and audiences in the social sciences, “…bridging aesthetics and empiricism, appealing to intellect and emotion, seeking to inform and inspire….” (Lawrence-Lightfoot & Davis, 1997, p xvi). In this research study, I focused on the subjective point of view of the five individual gay men, rather than to emphasize homosexuals as an institutional group. The portraits developed of these five men were narratives of particular individuals, rather than landscapes of a community or cultural group. Descriptions of social and cultural contexts were key elements of the method, but it was a perspective seen through the subject and the researcher’s view. Portraiture included the careful and systematic documenting of words and actions. The focus was on how these actions were experienced and perceived by the individual, and explored the meanings attached to these actions.
Portraiture guides the interviews and participant observations in the study; additional lenses of narrative and experience contribute to the analysis. A narrative portrait of each man is presented along with in-depth thematic analysis of his experiences. Emergent themes include uncertainty with daily medications and side effects, which serve as constant reminders of their HIV status. A sense of control over their lives is achieved through adapting routines and reliance on social supports. Their narratives include rich diversity in self understandings that are deeply intertwined in their coming out as gay, the awareness of their HIV status, and their experiences of their body. The development of multiple identities is an ongoing process situated in a larger context of social relatedness. The men search for ways to make sense of the death of friends, their fear of their own sickness and death, and their possible future lives with HIV. These experiences of loss are expressed, negotiated, and narrated through the appropriation of metaphors, engagement in social action, and utilizing narrative as a cultural resource. The intersections of portraiture, narrative and engagement provide a better understanding of the complexity of the lived experiences of these five men.
As our clinical practice develops in this “dynamic” and “challenging” health care climate, I believe that our focus on the power of occupation in the daily life experiences of our clients can truly make a difference. Perhaps we can therapeutically connect with our clients in ways that help quell the “volatility” of health care and the challenges of each individual’s particular life.
About the Author:
David Leary, PhD, OTR/L is a presently a senior Occupational Therapist at Cedars-Sinai Medical Center in Los Angeles, CA. He received his PhD in Occupational Science from USC. He has a colorful and extensive background spanning clinical work, assistant professorship at the OTA and MSOT levels, and administration and management. He is passionate about mentoring other therapists, supporting the OT student fieldwork program, and improving therapy line service delivery. David recently presented a workshop at AOTA 2015, Effective Occupation-Based Services in Acute Care: Integrating Practice-Based Evidence With Clinical Reasoning.
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Behar, R. (1996). The vulnerable observer: Anthropology that breaks your heart. Boston: Beacon Press.
Dixxon, A.D., Chapman, T.K., & Hill, D.A. (2005). Research as an aesthetic process: Extending the portraiture methodology. Qualitative Inquiry, 11, 16-26.
Garro, L. & Mattingly, C. (2000). Narrative as construct and construction. In C. Mattingly & L. C. Garro (Eds.), Narrative and the cultural construction of illness and healing (pp. 1-49). Berkley: University of California Press.
Jackson, M. (1998). Minima ethnographica: Intersubjectivity and the anthropological project. Chicago: The University of Chicago Press.
Jensen, U.J. & Mattingly, C.F. (2009). (Eds.). Narrative, self and social practice. Arhus C, Denmark: Philosophia Press.
Lawlor, M. (2003). Gazing anew: The shift from a clinical gaze to an ethnographic lens. The American Journal of Occupational Therapy, 57, 1, 29-39.
Lawrence-Lightfoot, S. (2005). Reflections on portraiture: A dialogue between art and science. Qualitative Inquiry, 11, 3, 3-15.
Lawrence-Lightfoot, S., & Davis, J. (1997). The art and science of portraiture. San Francisco: Jossey-Bass Inc.
Rofes, E. (1998). Dry bones breathe: Gay men creating post-AIDS identities and culture. The Haworth Press: Binghamton, N.Y.
By: Jennifer Brauer, OTR/L, OTD
According to the Centers for Disease Control and Prevention (2014) stroke is the leading cause of death in the United States, as every four minutes someone dies of a stroke. Occupational Therapists work with individuals who have had a stroke to help regain the motor, cognitive, sensory perceptual, social and emotional regulation skills in order to resume performance of meaningful activities. This article will take a closer look at forced use as a treatment approach for remediating movement and promoting functional use of the affected upper extremity after stroke.
Neuroplasticity refers to the brain’s ability to reorganize and develop new neural connections through areas directly adjacent to an infarct in the brain or away from the infarct on either side of the brain. Research has shown that after an initial stroke, limitations caused by that stroke have recovered; yet when the individual had another stroke on the other side of the brain the limitations from the first stroke returned. This demonstrates neuroplasticity and the brain’s ability to reorganize as one side of the brain took over function for the side of the brain with the infarct; then the regained function was lost when the individual had another stroke on the other side of the brain. Other studies suggest that persons may be asymptomatic for a neurological condition as the brain has already began to reorganize (Krakauer, 2005). Research and investigation into neuroplasticity continues to be ongoing.
Occupational Therapists’ understanding of neuroplasticity helps to justify treatment approaches aimed at remediating lost function of the upper extremity after a stroke, versus treatment approaches that teach compensatory strategies. Forced use is one treatment approach that requires the affected extremity to engage in movement over a period of time or series of repetitions.
Prior to using this approach, therapists should consider and assess the person’s vision or visual perception, tissue length, joint mobility, degree of activation or hemiparesis and cognition (Nelson, n.d.). Vision is important to assess as persons with neglect will need to improve attention to the affected extremity prior to having the recognition of the affected extremity needed to perform forced use. Also a person’s vision plays a role in the feed forward loop of anticipatory reactions and movements of the affected extremity. Addressing vision and understanding the person’s vision will help the therapist make a successful treatment plan.
Understanding any limitations with the person’s tissue length and/or joint mobility will guide the therapist in preparatory activities like stretching, muscle energy techniques, and mobilizations that need to take place in order to achieve the desired movement of the affected extremity and to help reduce compensatory movement during treatment. Knowing the degree of movement or amount of activation will allow the therapist to appropriately grade forced use activities and determine if forced use is an appropriate treatment approach at that point in recovery. Insight into cognition helps the therapist choose an appropriate context for the activity and steps to the activity.
During forced use activities therapists may observe compensatory movement control strategies caused by the brain and body attempting to accommodate for hypertonicity, hypotonicity, changes in tissue extensibility and decreased neural transmission and cortical input (Lui, McCombe Waller, Kepple, Witall, 2013). Carr and Shepherd (2000) state that the use of compensatory strategies can cause long-term functional limitations. Upper extremity movements that are not facilitated by the therapist may contribute and reinforce compensatory movements (Jeyaraman, Kathiresan, Gopalsamy, 2010). Compensatory movement control strategies have been related to level of impairment after stroke and impaired shoulder contribution during reach activities. A review of studies looked at truncal restraint as a means for reducing compensatory movement control strategies during forced use reach activities. Only one of the studies reviewed was a randomized control study. It did however show the potential for truncal restraint to reduce compensatory movement of the trunk in order to regain a functional reach of the affected extremity (Jeyaraman, Kathiresan, Gopalsamy, 2010).
Further research delves into determining the difference in efficacy between forced use as massed practice or as variable practice. In massed practice, the affected upper extremity performs a single repetitive movement for a period of time. In variable practice the movement trajectory is changed during the forced use activity. Dr. Krakauer (2005), applies motor learning theory to remediating the function of the affected upper extremity after stroke. He states, “motor learning does not need to be rigidly defined . . . it includes skill acquisition, motor adaption, such as prism adaptation and decision making.” He further goes on to state that distributed practice and task variability help improve learning and retention while contributing to the generalization of a skill (Krakauer, 2006).
Understanding the principles of neuroplasticity can influence the structuring of forced use techniques integrated into occupational therapy intervention. Multiple considerations need to be taken into account when choosing forced use a treatment technique for the recovery of movement of an upper extremity after stroke.
For more information and education related to this topic: Use promo Code “OTcafe” for a discount on the following online courses:
Functional Treatment Ideas and Strategies in Adult Hemiplegia By: Jan Davis, MS, OTR/L
The Hemiplegic Shoulder: Practical Assessment and Intervention Strategies By: J.J. Mowder-Tinney, PT, PhD, NCS, C/NDT, CSRS
About the Author
Jennifer Brauer, OTR/L, OTD, obtained her Doctorate Degree from Creighton University. She has been an Occupational Therapist for over 5 years, with experience in inpatient rehab and acute care. Most of her clinical experience includes working with individuals who have had a brain injury or stroke. She is certified in Neuro-IFRAH. She has been published in Informa Healthcare and OT Practice. She presented a poster at NOTA on the use of the ArmeoSpring as a treatment intervention for stroke survivors. She is currently practicing on a stroke team at Immanuel Medical Center in Omaha, NE, where she is also actively involved in the education committee.
Carr, J & Shepherd, R. (2000). Movement science: Foundations for physical therapy in rehabilitation (2nd ed.). Aspen Publishers, MD: Gaithersburg.
Centers for Disease Control and Prevention. (2014). Stroke Fact Sheet. Retrieved from http://www.cdc.gov/dhdsp/data_statistics/fact_sheet/docs/fs_stroke.pdf
Jeyaraman, S., Katiresan, G., & Gopalsamy, K. (2010). Normalizing the arm reaching patterns after stroke through forced use therapy – A systematic review. Neuroscience & Medicine, 1, 20-29.
Krakauer, J. (2005). Arm function after stroke: From physiology to recovery. Seminars in Neurology, 25(4), 384-395.
Krakauer, J. (2006). Motor learning: Its relevance to stroke recovery and neurorehabilitation. Current Opinion in Neurology, 19, 84-90.
Liu, W., McCombe Waller, S., Kepple, T., & Whitall, J. (2013). Compensatory arm reaching strategies after stroke: Induced position analysis. Journal of Rehabilitation Research and Development, 50(1), 71-84.
Nelson, C. (n.d.) The concept of forced use as an element of therapy handling. Retrieved from www.clinicians-view.com/Articles/Article005.pdf