Person-centered Goals Research Articles

A concise patient reported outcome measure for people with aphasia: the aphasia impact questionnaire 21

ABSTRACTBackground: There are many validated and widely used assessments within aphasiology. Few, however, describe language and life with aphasia from the perspective of the person with aphasia. Across healthcare, patient experience and user involvement are increasingly acknowledged as fundamental to person-centred care. As part of this movement, Patient Reported Outcome Measures (PROMs) are being used in service evaluation and planning.Aims: This paper reports the quantitative aspects of a mixed methods study that developed and validated a concise PROM, the Aphasia Impact Questionnaire (AIQ), co-produced with People with Aphasia (PWA).Methods & Procedures: The AIQ was developed within the social model of disability and all stages of the development of the AIQ were performed in partnership with PWA. It was adapted from a pre-existing and lengthier PROM for PWA, the Communication Disability Profile. The first iterations of the AIQ focused on domains of communication, participation and well-being/emotional state. Subsequently the AIQ was extended to include additional items relating to reading and writing (AIQ-21). The research design was iterative. Initially, concurrent validity, internal consistency, and sensitivity of the AIQ-prototype were obtained. The AIQ-prototype was modified to become the AIQ-21. Statistical testing with a new group of PWA was performed, investigating internal consistency and concurrent validity of the AIQ-21.Outcomes & Results: Results for both the AIQ-prototype and AIQ-21 showed statistically significant concurrent validity and good internal consistency. Repeated measurement using the AIQ-prototype demonstrated statistically significant change after PWA accessed a community intervention.Conclusions: The AIQ-21 is a PROM that has great potential to be one of the core set of aphasia tests for clinical and research use. Results can be used alongside language assessment to enable person-centred goal setting and partnership working for people with aphasia.

Development of an English-language version of a Japanese iPad application to enhance person-centered goal setting in rehabilitation

Person-centered goal setting is considered a core part of the rehabilitation process. However, barriers to patient involvement in goal selection exist, including: cognitive and communicative impairments; tendencies for rehabilitation professional to control and direct the goal selection process; and difficulties some patients have with identifying meaningful goals that are relevant to rehabilitation. The aim of this study was to develop an English-language version of a Japanese iPad application designed to facilitate share-decision making around goal setting in rehabilitation: Aid of Decision-making in Occupational Choice–English (ADOC-E). ADOC-E makes use of images and a structure process to facilitate goal setting discussions. Phase 1: Delphi methods to reach consensus, with a group of 12 expert occupational therapists from four countries (UK, USA, Australia, and New Zealand) on the text and images in ADOC-E. Phase 2: Testing correct recognition (unprompted and prompted) of images in ADOC-E by health service users ( n = 25; age 20–95 years; Mini-Mental State Exam 13–30) in inpatient rehabilitation and residential care. Four Delphi rounds were required to reach consensus with the expert occupational therapists on the content of ADOC-E, ending with 100 items covering daily activities that people do and social roles they participate in. Ninety-five percent (95/100) of ADOC-E items could each be correctly identified by over 80% of participants with either unprompted or prompted recognition. Images were less like to be correctly identified (and were more challenging to represent in a single image) if they focused on goals at the level of social participation. While a few of the more abstract concepts in ADOC-E (related to complex social roles) were less likely to be correctly recognized by all participants, the text and images ADOC-E were deemed to be fit for purpose overall, and ready for future clinical testing.

Experiences of stroke survivors, their families and unpaid carers in goal setting within stroke rehabilitation: a systematic review of qualitative evidence.

The objective of the review was to synthesize the best available qualitative evidence regarding the experiences of stroke survivors, their families and unpaid carers, about goal setting within stroke rehabilitation. Clinical guidelines recommend person-centered goal setting in stroke rehabilitation but many barriers exist to its implementation. Individual differences and preferences, of both the stroke survivor and practitioner, may influence involvement in goal setting. A stroke survivor's relationship with close family members and unpaid carers can be powerful and could influence rehabilitation, recovery and goal setting. The participants of interest were adults (over 18 years) who had experienced a stroke and undergone rehabilitation, and their families and unpaid carers. The phenomena of interest were the experiences of goal setting within stroke rehabilitation for stroke survivors, their families and unpaid carers. The context was stroke rehabilitation in acute and community hospitals, inpatient rehabilitation units and the community. Studies considered for this review were qualitative primary research studies and the qualitative portion of mixed methods research. A three-step search strategy was used to identify English language qualitative primary research studies (both published and unpublished) through November 2017. Two reviewers independently appraised the included studies using the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research. Studies were included if they achieved 50% "yes" results for the methodological assessment. Data were extracted from the included papers using the standardized JBI qualitative data extraction tool. Data were synthesized using meta-aggregation. Four studies were included in this review, from which 44 findings were extracted. These were aggregated into 12 categories and four synthesized findings: (1) Person-centered goal setting is possible but often does not occur; (2) Practitioners shape the context of goal setting; (3) Practitioners need to listen to the person and know "who they are" - there is a need for an individualized approach to goal setting; (4) Recovery is ongoing and unpredictable. No findings reporting the experiences of goal setting from the perspective of family or unpaid carers were found, therefore all findings represent stroke survivor experiences. The role of goal setting in self-management could not be extracted from the data. Person-centered goal setting within stroke rehabilitation is both possible and rewarding but often does not occur. Goal setting contributes to the post-stroke rehabilitation experience and can be positively or negatively influenced by practitioners. Maintaining hope and a sense of forward momentum in recovery after stroke is perceived by stroke survivors as important and could be supported using goal setting that is tailored to the individual's needs and preferences. Future research should focus on refining individualized methods of goal setting in stroke rehabilitation and the role of the practitioner in this, including what skills are needed and how they can be acquired. The identified gaps in the literature about family members' and unpaid carers' experiences, and the role of goal setting in self-management, warrant further research.

Patient-centred goal setting in a hospice: a comparative case study of how health practitioners understand and use goal setting in practice.

Goal setting is recognised as an important way of supporting people to live as actively as possible until death. However, there is little agreement about how goal setting should be handled or delivered by health professionals in everyday practice. To investigate health-care practitioners' understanding and practice of patient-centred goal setting in a hospice. A comparative case study of 10 healthcare practitioners in one hospice. Non-participant observations (n=28), semi-structured interviews (n=10) and case-note analysis (n=67) were undertaken. Data were analysed using framework analysis. Participants viewed goal setting as part of routine practice. However, goal setting focused around what was seen as important from the health practitioner's perspective, rather than being patient-centred. Participants' goal-setting practice was implicit and opportunities to support patients to pursue goals were missed. Participants emphasised problem solving and alleviating symptoms rather than focusing on patient priorities and establishing patient-centred goals. While goal setting is valued, it is practiced in an implicit, practitioner-centred and inconsistent manner. A more explicit, person-centred goal setting process may support practitioners more consistently in helping patients to identify their priorities and enhance their quality of life.

Secondary Prevention Medication Use After Myocardial Infarction in U.S. Nursing Home Residents.

Secondary prevention medications are recommended for older adults after acute myocardial infarction (AMI), but little is known about whether nursing home (NH) residents receive these medications. The objective was to evaluate new use of secondary prevention medications after AMI in NH residents who were previously nonusers and to evaluate what factors were associated with use. Retrospective cohort using linked national Minimum Data Set assessments; Online Survey, Certification and Reporting records; and Medicare claims. U.S. NHs. National cohort of 11,192 NH residents aged 65 and older who were hospitalized for an AMI between May 2007 and March 2010, had no beta-blocker or statin use for 4months or longer before the hospitalization, and survived 14days or more after NH readmission. The outcome was the number of secondary prevention medications initiated within 30days of NH readmission. Thirty-seven percent of residents had no secondary prevention medications initiated after AMI, 41% had 1 initiated, and 22% had 2 initiated. After covariate adjustment, fewer secondary prevention medications were used in older residents (proportional odds ratio (POR)=0.48, 95% confidence interval (CI) =0.40-0.57 for ≥95 vs 65-74); women (POR=0.88, 95% CI=0.80-0.96);and those with a do-not-resuscitate (DNR) order (POR=0.90, 95% CI=0.83-0.98), functional impairment (dependent or totally dependent vs independent to limited assistance, POR=0.77, 95% CI=0.69-0.86), and cognitive impairment (moderate to severe vs no impairment, POR=0.79, 95% CI=0.70-0.89). More than one-third of older NH residents in the United States do not have any secondary prevention medications initiated after AMI, with fewer medications initiated in older residents; women; and those with, DNR orders, poor physical function, and cognitive impairment. A lack of evidence about the safety and effectiveness of secondary preventions medications in the NH population and unmeasured person-centered goals of care are plausible explanations for these findings.

Rights-Based and Person-Centered Approaches to Supporting People With Intellectual Disability: A Dialectical Model.

Protecting human rights has increasingly become a focus of regulation regarding individuals with Intellectual Disability (ID). While this focus on rights has succeeded in protecting people with ID from many of the most insidious abuses of the past, an over-emphasis on the human rights of people with ID while ignoring other aspects of their personalities and environments can create challenges. This article proposes the use of a dialectical model to address challenges raised by the relationship between two equally valid but often unequally considered approaches, namely, rights-based and person-centered. Suggestions are provided for using this model to meaningfully support individuals to reach their person-centered goals while continuing to recognize and address their individual rights, responsibilities, and challenges.

Measuring Values in Everyday Life and Their Correlation to Activity Participation

Abstract Date Presented 4/17/2015 In this study, we develop a measure that characterizes the relationship between values and participation in everyday life. The SPVLS will provide occupational therapists with information that will help to set person-centered goals to enable activity participation.

Abstract 203: Community Based Outpatient Stroke Rehabilitation Program Achieves Excellent Outcomes Including Return to Work, Driving, Improved Blood Pressure Control, and Other Rehabilitation Outcomes

Background: Return to Driving and Employment are goals for many stroke survivors. These person-centered goals are often the motivators for participation in outpatient rehabilitation. However, standardized measure sets and patient assessments are not in place or required for outpatient rehabilitation programs. As such, few outpatient rehabilitation programs measure and report patient centered outcomes like return to work or employment in addition to functional status and disease management measures. Methods: Prospective observational study of recovery of stroke patients treated between 12/2011-1/2015 in an interdisciplinary outpatient rehabilitation program that addresses health literacy, risk factors, physical, psychosocial, cognitive, communicative and vocational issues. Results: Among 96 consecutive patients (69 ischemic, 27 hemorrhages), with admit NIHSS scores 0-16, there were 59 men, 37 women, with an age range of 18-90 years. At baseline(admission to the outpatient program), 36.5% were aphasic(communication impairment), 88% had impairments and needed assistance with activities of daily living (55% and 33% with modified Rankin Scale [mRS] Scores of 3 and 4, respectively), compared with mild impairments (12%mRS 1-2). Of 46 patients working pre-stroke, 48% had returned to work and an additional 13% were work capable at discharge. Of 86 patients driving pre-stroke, 38% returned to driving at completion of the program and 27% began using public transportation. Stroke Impact Scale (SIS) stroke recovery Domain scores increased an average of 38%, SIS ADL scores 33%, SIS mood scores 17%. Cardiovascular and medication education sessions with the Nurse Practitioner(NP) were based on AHA guidelines that included Life’s Simple 7’s curriculum. Stroke Knowledge scores improved an average of 14% and stroke risk factor knowledge improved an average of 19% across program participants. Program treatment also emphasized blood pressure control and exercise, with all but 1 patient receiving an average of 23 physical therapy visits over the duration of program involvement. Compared with baseline, 6 minute walk and Berg Balance scores improved an average of 79% and 33%, respectively. Blood pressures(BPs) measured during the 1st 75% of PT visits were compared to BPs during the last 25%. 56% of patients had fewer moderate(140-159/91-99) to severe(>160/100) BPs and more normal(<120/80) to mild (121-139/81-90) range BPs. 15% had no change in mild-normal range and 29% had some worsening of BPs over the course of PT treatment. Conclusions: Participants in our interdisciplinary community-based rehabilitation program demonstrated improvements in stroke knowledge, physical function, blood pressure control, and mood, while also returning to work, driving, and participation in the community. Comparative research and multi-site studies are needed.

Factors influencing goal attainment in patients with post-stroke upper limb spasticity following treatment with botulinum toxin A in real-life clinical practice: sub-analyses from the Upper Limb International Spasticity (ULIS)-II Study.

In this post-hoc analysis of the ULIS-II study, we investigated factors influencing person-centred goal setting and achievement following botulinum toxin-A (BoNT-A) treatment in 456 adults with post-stroke upper limb spasticity (ULS). Patients with primary goals categorised as passive function had greater motor impairment (p < 0.001), contractures (soft tissue shortening [STS]) (p = 0.006) and spasticity (p = 0.02) than those setting other goal types. Patients with goals categorised as active function had less motor impairment (0.0001), contracture (p < 0.0001), spasticity (p < 0.001) and shorter time since stroke (p = 0.001). Patients setting goals for pain were older (p = 0.01) with more contractures (p = 0.008). The proportion of patients achieving their primary goal was not impacted by timing of first-ever BoNT-A injection (medium-term (≤1 year) vs. longer-term (>1 year)) post-stroke (80.0% vs. 79.2%) or presence or absence of severe contractures (76.7% vs. 80.6%), although goal types differed. Earlier BoNT-A intervention was associated with greater achievement of active function goals. Severe contractures impacted negatively on goal achievement except in pain and passive function. Goal setting by patients with ULS is influenced by impairment severity, age and time since stroke. Our findings resonate with clinical experience and may assist patients and clinicians in selecting realistic, achievable goals for treatment.

45. An international, prospective cohort to document the effectiveness of 1 cycle of BoNT/A based on attainment of individual person-centered goals in adult subjects suffering from upper limb spasticity following stroke (ULIS II): subanalysis of the South Asian group of spasticity patients

Introduction and Objectives: A total of 456 patients were recruited globally for the ULIS II study. To compare the data from South Asia (SA) with the global (GLB) results, a subanalysis was performed.Methods: A total of 51 patients from Hong Kong, Philippines, Thailand, Taiwan, Malaysia, and Singapo

An analysis of the “goal” in aphasia rehabilitation

Background: Despite the central importance of goal setting in aphasia rehabilitation, the notion of the goal itself has not been fully explored. Aims: This paper considers how speech pathologists conceptualise the nature of the “goal” in aphasia rehabilitation. Methods & Procedures: The researchers conducted a qualitative study involving 34 speech pathologists (32 female and 2 male; mean age 41 years, range 24–60 years) from Adelaide, Brisbane and Newcastle, Australia, who worked across acute and rehabilitation inpatient, outpatient, community, and domiciliary services. The speech pathologists participated in semi-structured in-depth interviews about their experiences of providing therapy to people with aphasia post stroke and their family members. Transcriptions of the recorded interviews were subjected to an interpretive thematic analysis involving careful reading and re-reading for recurring themes around notions of goals. Outcomes & Results: The analysis of the transcripts revealed six main categories of goal concepts: goals as desires; SMART goals; impairment and functional goals; goals as steps; goals as contracts; and implicit goals. The first two of these conceptual categories competed with each other reflecting broader tensions within speech pathology practice, and the relative prominence of these goal categories differed according to the rehabilitation context. Conclusions: The findings suggest that the notion of the goal is multifaceted, dynamic, context dependent, and involves inherent tension. A more detailed understanding of the different facets of a goal might assist speech pathologists in their efforts towards collaborative goal setting. A conceptual shift to include the goal as a vehicle of empowerment may be helpful as a precursor to effective, collaborative, and person-centred goal setting with people with aphasia.

The effect of a designated tool on person-centred goal identification and service planning among older people receiving homecare in New Zealand

This study sought to determine the ability of a designated tool developed to identify client-directed goals in a sample of older people referred for homecare. A retrospective pre/post-intervention design was used and a total of 360 older people in an urban centre in New Zealand were included in the analysis. All clients receiving services at the time of data collection (July 2007) who were referred for service provision between July 2003 and the implementation in January 2007 of a restorative model of homecare were included in the analysis. The restorative model of homecare included a designated goal-facilitation tool [Towards Achieving Realistic Goal in Elders Tool (TARGET)]. Prior to the use of TARGET, participants had a goal recorded for their home-care episode in 31 cases (8.6%), whereas following the implementation of TARGET, goals were recorded in 339 cases (94.2%). At a quarterly review, eight clients (2.2%) achieved their goal prior to TARGET, whereas 172 clients (47.8%) fully achieved their goal when TARGET was utilised. Within the sample, multinomial logistic regression showed that the use of TARGET significantly improved goal attainment. Furthermore, moderate-to-severe cognitive impairment significantly reduced the successful attainment of goals. The study highlighted the importance of a designated tool for facilitating older people to set goals that are then used in developing support plans to structure services to assist them in the home. The need for alternative strategies for goal setting for people with significant cognitive impairment was highlighted. This study, in attempting to determine the effect of a goal-facilitation tool as a driver for quality improvement in homecare, had an observational comparative design, this being the most pragmatic option to assess the feasibility of TARGET prior to further work being undertaken. The results do show that in this sample of older people receiving homecare, the use of TARGET led to a greater proportion of goal identification, higher rates of goal attainment and a more diverse range of categories of goals than traditional non-structured methods of goal setting.

Planning and Structuring Spinal Cord Injury Rehabilitation: The Needs Assessment Checklist

The study aimed to evaluate the Needs Assessment Checklist (NAC) as a clinically appropriate assessment tool for use during spinal cord injury (SCI) rehabilitation. Data were obtained during routine clinical assessments from 193 patients admitted to the National Spinal Injuries Centre, UK, from September 2007 to November 2009. Reliability analyses yielded high internal consistency coefficients (mean α = .889, SD .051), and the mean item internal validity correlation was .534 (SD .136). All subscales of the NAC were found to be highly significant to change between administrations (mean P <.001). Several differences were found on the NAC subscales with respect to gender, age, and mobility. Pain and psychological issues were associated with poorer rehabilitation outcomes. The NAC is demonstrated to be a clinically reliable assessment tool that can be used to structure rehabilitation progress by the generation of person-centered goals. The results highlight the importance of assessing psychological issues and pain during SCI rehabilitation.

SMARTER goal setting in aphasia rehabilitation

Background: There have been numerous calls for rehabilitation professionals to involve patients or clients in decisions about the goals of therapy. And yet collaborative goal setting in rehabilitation remains uncommon and is particularly difficult to achieve for people with aphasia. Aims: This discussion paper describes a new framework for conceptualising and structuring collaborative goal setting in aphasia rehabilitation. The framework has been developed based on the results of a large, multi-centred Australian study, the Goals in Aphasia Project, which explored client, family, and speech pathology experiences of rehabilitation goal setting. This framework, called SMARTER Goal Setting, describes a process of goal setting that is Shared, Monitored, Accessible, Relevant, Transparent, Evolving and Relationship-centred. Methods & Procedures: The methods and results from the Goals in Aphasia Project have already been published elsewhere but involved in-depth interviews with 50 people with aphasia, 48 family members, and 34 treating speech pathologists. This paper reviews the broader literature and summarises relevant findings from the Goals in Aphasia Project as a basis for discussion of each category of SMARTER. Outcomes & Results: Our new SMARTER framework both challenges and complements elements of the pervasive SMART goal paradigm (that goals should be Specific, Measurable, Achievable, Realistic and Time-bound), which currently dominates rehabilitation goal setting. SMARTER offers an easy way to summarise much of the collaborative work that already takes place in clinical practice but also emphasises aspects that could be improved. SMARTER does not replace SMART, but we suggest that SMART goals can be negotiated in a SMARTER way. Conclusions: While this paper discusses SMARTER goal setting within aphasia rehabilitation, a particularly challenging context for the implementation of collaborative practice, it may be applicable to rehabilitation more broadly. Given that person-centred goal setting within stroke rehabilitation remains infrequent, we suggest that there is an urgent need to raise awareness of its importance and challenge current practice. The SMARTER framework provides a useful structure to support collaborative goal setting.

Poster 469 Validation of Individual Person-centered Goal Statements for Goal Attainment Scaling in a Large International Cohort Study of Botulinum Toxin Type A for Upper Limb Spasticity After Stroke

Poster 469 Validation of Individual Person-centered Goal Statements for Goal Attainment Scaling in a Large International Cohort Study of Botulinum Toxin Type A for Upper Limb Spasticity After Stroke

«Shared decision making» und individualisierte Therapiezielsetzung – eine Pilotuntersuchung mit PRISM (Pictorial Representation of Illness and Self Measure) bei stationären Psychiatriepatienten

Although there is much talk about shared decision making and individualized goal setting, there is a lack of knowledge and knowhow in their realization in daily clinical practice. There is a lack in tools for easy applicable tools to ameliorate person-centred individualized goal setting processes. In three selected psychiatric inpatients the semistructured, theory driven use of PRISM (Pictorial Representation of Illness and Self Measure) in patients with complex psychiatric problems is presented and discussed. PRISM sustains a person-centred individualized process of goal setting and treatment and reinforces the active participation of patients. The process of visualisation and synchronous documentation is validated positively by patients and clinicians. The visual goal setting requires 30 to 45 minutes. In patients with complex psychiatric illness PRISM was used successfully to ameliorate individual goal setting. Specific effects of PRISM-visualisation are actually evaluated in a randomized controlled trial.

The Goals of Psychotherapy / Die Ziele der Psychotherapie / Las metas de la psicoterapia / Les buts de la psychothérapie / Os objectivos da psicoterapia /

Psychotherapy appears to be one kind of practice and one kind of science. Despite this, different schools of psychotherapy suggest different goals for their practices. The aim of the paper is to scrutinize some of the goals suggested and to formulate a normative theory of what goals psychotherapy in general ought to pursue. Various kinds of goals are identified, for example, personal goals, theoretical goals, and ultimate goals. Some theoretical goals, like cognitive change, symptom reduction, and self-knowledge, are found wanting as ultimate goals for psychotherapy, as are some broader goals, like health, well-being, and empowerment. Quality of life is found to be the most reasonable ultimate goal for psychotherapy, if it is achieved through some internal, mental change. This overarching goal is shown to encompass many of the other suggestions, including person-centered goals like congruence. Finally, the value of the study is primarily the formulation of goals that can help us construct better outcome instruments, and make it easier to compare the effects of different kinds of psychotherapy.

Measuring Participation of School-Aged Children With Traumatic Brain Injuries

This article discusses key issues to consider and selected approaches for assessing participation of school-aged children with traumatic brain injury. Approaches discussed include measures that explicitly assess participation, subsections from other measures that implicitly assess participation, and tailored methods that assess outcomes linked to person-centered goals or programs and interventions that address participation. Key considerations discussed include what should be measured, how should it be measured, what is the level of focus (individual, program, or population), and how does or could the selected approach address stakeholders' "information goals," that is, what stakeholders want and need to know?

4. Optimal participation in life after spinal cord injury: Physical, psychosocial, and economic reintegration into the environment

This leamer-directed module on spinal cord injury (SCI) presents a variety of perspectives of the process of personal and environmental adaptation for reintegration. Adaptation is unique to each person and does not predictably follow stages. Models used for understanding the process include biopsychosocial, ICIDH-2 (International Classification of Functioning, Disability and Health), and sector divisions of the environment. Home modification requires home (intermediate environment) evaluation and sociospatial behavioral mapping for planning and appropriation of remodeling in proportion to functional need and use. Options for access to the natural environment include specialized wheelchairs, climbing rigging, kayaks, and sail boats. Sports participation with adaptations is expanding and includes a larger variety of organizations and leagues. Economic needs are effectively anticipated with development of a life care plan. Procreative options to overcome infertility after SCI include vibratory stimulation for ejaculation, intravaginal insemination, intrauterine insemination, in vitro fertilization, and intracytoplasmic sperm injection. Approaches to requests for withdrawal of life-sustaining care include depression screening, pain evaluation, and assistance in accomplishment of person centered goals. Overall, community reintegration after SCI is continually improving because of better acceptance, accessibility, and technology for building adaptations. Overall Article Objectives:(a) To review models and theories of medical intervention and disablement and (b) to demonstrate their application in rehabilitation practice by designing unique treatment plans that meet patient person-centered goals.

Therapeutic Contracting: An Effective Strategy for Competency-Based Treatment

Abstract The therapeutic contracting program represents a comprehensive cognitive-behavioral treatment system for persons with serious mental illness. This article introduces therapeutic contracting principles and procedures through a case study format. Specific methods are described for engaging clients in the development, evaluation, and continuous reformulation of competency-based treatment plans. Organizational structures which serve to coordinate staff members' efforts around person-centered recovery goals and interventions are discussed. Finally, the therapeutic contracting model is presented as a meaningful framework for structuring long-term therapy across inpatient, partial hospital, and outpatient treatment settings.