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1.
Psychooncology ; 33(3): e6316, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38446540

RESUMO

OBJECTIVE: Observational data suggest hope is associated with the quality of life and survival of people with cancer. This trial examined the feasibility, acceptability, and preliminary outcomes of "Pathways," a hope intervention for people in treatment for advanced lung cancer. METHODS: Between 2020 and 2022, we conducted a single-arm trial of Pathways among participants who were 3-12 weeks into systemic treatment. Pathways consisted of two individual sessions delivered during infusions and three phone calls in which participants discussed their values, goals, and goal strategies with a nurse or occupational therapist. Participants completed standardized measures of hope and goal interference pre- and post-intervention. Feasibility was defined as ≥60% of eligible patients enrolling, ≥70% of participants completing three or more sessions, ≥70% of participants completing post-assessments, and mean acceptability ratings ≥7 out of 10 on intervention relevance, helpfulness, and convenience. Linear regression fixed effects models with covariates modeled pre-post changes in complete case analysis and multiple imputation models. RESULTS: Fifty two participants enrolled: female (59.6%), non-Hispanic White (84.6%), rural (75.0%), and with low educational attainment (51.9% high school degree or less). Except for enrollment (54%), feasibility and acceptability markers were surpassed (77% adherence, 77% retention, acceptability ratings ≥8/10). There was moderate improvement in hope and goal interference from pre-to post-intervention (d = 0.51, p < 0.05 for hope; d = -0.70, p < 0.005 for goal interference). CONCLUSIONS: Strong feasibility, acceptability, and patient-reported outcome data suggest Pathways is a promising intervention to increase hope and reduce cancer-related goal interference during advanced lung cancer treatment.


Assuntos
Esperança , Neoplasias Pulmonares , Feminino , Humanos , Masculino , Escolaridade , Modelos Lineares , Neoplasias Pulmonares/terapia , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida
2.
Langenbecks Arch Surg ; 409(1): 266, 2024 Aug 31.
Artigo em Inglês | MEDLINE | ID: mdl-39215842

RESUMO

PURPOSE: Despite mobilization is highly recommended in the ERAS® colorectal guideline, studies suggest that more than half of patients don't reach the daily goal of 360 min out of bed. However, data used to quantify mobilization are predominantly based on self-assessments, for which the accuracy is uncertain. This study aims to accurately measure postoperative mobilization in ERAS®-patients by validated motion data from body sensors. METHODS: ERAS®-patients with elective bowel resections were eligible. Self-assessments and motion sensors (movisens: ECG-Move 4 and Move 4; Garmin: Vivosmart4) were used to record mobilization parameter from surgery to postoperative day 3 (POD3): Time out of bed, time on feet and step count. RESULTS: 97 patients were screened and 60 included for study participation. Self-assessment showed a median out of bed duration of 215 min/day (POD1: 135 min, POD2: 225 min, POD3: 225 min). The goal of 360 min was achieved by 16.67% at POD1, 21.28% at POD2 and 20.45% at POD3. Median time on feet objectively measured by Move 4 was 109 min/day. During self-assessment, patients significantly underestimated their "time on feet"-duration with 85 min/day (p = 0.008). Median number of steps was 933/day (Move 4). CONCLUSION: This study confirmed with objectively supported data, that most patients don't reach the daily mobilization goal of 360 min despite being treated by an ERAS®-pathway with ERAS®-nurse. Even considering an empirically approximated underestimation, the ERAS®-target isn't achieved by more than 75% of patients. Therefore, we propose an adjustment of the general ERAS®-goals into more patient-centered, individualized and achievable goals. REGISTRATION: This study is part of the MINT-ERAS-project and was registered prospectively in the German Clinical Trials Register on 25.02.2022. Trial registration number is "DRKS00027863".


Assuntos
Procedimentos Clínicos , Deambulação Precoce , Procedimentos Cirúrgicos Eletivos , Recuperação Pós-Cirúrgica Melhorada , Estudos de Viabilidade , Humanos , Feminino , Masculino , Idoso , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Autoavaliação (Psicologia)
3.
Clin Rehabil ; 38(2): 234-250, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37644842

RESUMO

OBJECTIVES: This scoping review aims to map the literature on goal-setting tools in adult rehabilitation, exploring their characteristics, target users and supporting evidence to inform practice and future research in this area. METHODS: We completed a comprehensive search of four databases to identify relevant articles on tools for goal setting in rehabilitation. We followed Arkey and O'Malley's scoping review process to guide article selection, data extraction and data analysis. RESULTS: We identified a total of 165 studies that reported on 55 different goal-setting tools, including tools for goal selection and goal documentation (n = 31), goal setting and intervention planning (n = 15), and for measuring the quality of the goal-setting process (n = 9). Over half of the tools were primarily designed for use in rehabilitation of physical disabilities (n = 32). Some tools fell under multiple sub-categories based on their characteristics as follows: 22 framework tools, 12 interview tools, 9 outcome measurement tools for goal achievement, 6 outcome measurement tools for goal quality and 25 documentation tools. The majority of goal-setting instruments targeted goals at the level of activity and participation (n = 51) and aimed to facilitate a client-centred or shared decision-making approach to rehabilitation planning (n = 46). CONCLUSIONS: This study provides a comprehensive overview of existing goal-setting tools, highlighting their characteristics, target users and identified needs. These findings can enhance practitioners' awareness of the range of goal-setting tools available and can enable more effective utilization of these tools in clinical practice. Further research should investigate how clinicians can combine multiple tools to deliver goal setting.


Assuntos
Pessoas com Deficiência , Objetivos , Adulto , Humanos , Motivação , Pessoas com Deficiência/reabilitação
4.
BMC Health Serv Res ; 24(1): 87, 2024 Jan 17.
Artigo em Inglês | MEDLINE | ID: mdl-38233834

RESUMO

BACKGROUND: Apart from a consistent focus on treating inflammation, patients with inflammatory arthritis (IA) report a range of unmet needs. Many experience not only residual symptoms but also various other physical, psychological, and social effects. Therefore, this study aimed to develop a complex Interdisciplinary Nurse-coordinated self-management (INSELMA) intervention for patients with IA, as an add-on treatment to usual outpatient care for those with substantial disease impact. METHODS: This study followed the British Medical Research Council's updated framework for developing complex interventions. The process encompassed the following steps: (1) The evidence base was identified; (2) workshops were held, involving 38 relevant stakeholders (managers, physicians, nurses, physiotherapists, occupational therapists, social workers, psychologists from hospitals and municipalities, and two patient research partners), to discuss and further develop the preliminary ideas; (3) relevant theories were identified (i.e., self-efficacy, acceptance and commitment therapy, and health literacy); (4) the intervention was modeled and remodeled and (5) the results, describing the final INSELMA intervention and outcomes. RESULTS: The INSELMA intervention encompasses an initial biopsychosocial assessment, which is performed by a rheumatology nurse. Then, activities that the participant wishes to improve are identified and goals are set. The nurse refers the participant to a multidisciplinary team and coordinates their support and relevant services in the participant's municipality. In addition, the health professionals have the opportunity to hold two interdisciplinary conferences during the intervention period. The participant and the health professionals work to achieve the set goals during a 6-month period, which ends with a status assessment and a discussion of further needs. The INSELMA intervention aims to increase self-management, reduce the impact of IA (e.g., pain, fatigue, sleep problems, and absenteeism), and increase self-efficacy, quality of life, mental well-being, work ability, and physical activity. CONCLUSIONS: The development of the INSELMA intervention involved stakeholders from two Danish rheumatology outpatient clinics, patient research partners and municipalities. We believe that we have identified important mechanisms to increase the self-management and quality of life of people with IA and to decrease the disease impact in those who are substantially affected. The health professionals involved have developed competences in delivering the intervention and it is ready to be tested in a feasibility study.


Assuntos
Terapia de Aceitação e Compromisso , Artrite , Autogestão , Humanos , Qualidade de Vida , Artrite/terapia , Saúde Mental
5.
J Hum Nutr Diet ; 37(1): 217-226, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37794834

RESUMO

BACKGROUND: Nutrition counselling is characterised by a collaborative approach where the patient and the dietitian establish goals that promote health and self-management. Little is known about goal-setting in nutrition interventions of patients at risk of malnutrition. The present study aims to describe the perspectives and needs of patients at risk of malnutrition regarding goals of nutrition interventions. METHODS: Semi-structured interviews were conducted with 15 patients from three primary care centres and one hospital in mid-Sweden selected through purposive sampling. Interview transcripts were analysed using reflexive thematic analysis following the six-phase guidelines of Braun and Clarke to identify patterns of shared meaning and themes in the data. RESULTS: The findings highlight that the participants rarely reflected on their personal goals of the nutrition intervention. Instead, they strived to maintain strength and energy, with the nutrition counselling being seen as supportive in managing nutrition impact symptoms. They described discrepancies between their perspectives and the dietitian's regarding weight goals and the diet prescribed to gain weight. CONCLUSIONS: The study findings suggest that elucidating patients' goals is key to counteracting the discrepancies between the dietitians' clinically oriented goals and patients' perspectives. Goal-setting is part of the dietitian's structured working process, whereas the patient's lifeworld is complex and unstructured. To provide person-centred nutrition care, new strategies and tools are needed to facilitate collaborative goal-setting. These approaches will bridge the gap between clinical goals and patients' individual needs, promoting better alignment and improved outcomes.


Assuntos
Objetivos , Desnutrição , Humanos , Promoção da Saúde , Desnutrição/prevenção & controle , Dieta , Pesquisa Qualitativa
6.
BMC Musculoskelet Disord ; 25(1): 339, 2024 Apr 27.
Artigo em Inglês | MEDLINE | ID: mdl-38678259

RESUMO

BACKGROUND: Individual goal setting is a fundamental element in self-management supportive interventions, serving to guide actions and enhance motivation for engagement. Despite this, little is known about the goals people with back pain have and to what extent these differ across genders, age groups and geographical location. This study aimed to elucidate this by first describing individual goals set by Danish and Canadian participants in a self-management intervention for people with back pain using the ICF framework; then, determining what proportion of these goals met criteria for being specific, measurable, acceptable, and time bound, and finally, by investigating differences between countries, sexes, and age groups. METHODS: In a cross-sectional study conducted August 2018 to June 2020, 394 Danish and 133 Canadian (Alberta Province) participants defined their individual goals of participating in a self-management programme involving patient education and supervised exercises. The goals were linked to the ICF framework. Distribution of goals was compared between countries, sexes, and age groups. RESULTS: Goals most often related to the ICF component of 'Activity and Participation'. The most prevalent goals were "Walking" (DK: 20%; CA: 15%) and "Maintaining a body position" (DK: 17%; CA: 22%). Only few goals differed between populations, age and sex. All elements of SMART goal setting were recorded for 88% of Danish and 94% of Alberta participants. CONCLUSIONS: People with low back pain attending a self-management programme established goals according to the SMART criteria and focused primarily on activity. Goals were similar across countries and showed few differences across sex and age groups. The high number of different goals points to the need for individualised person-centred care.


Assuntos
Terapia por Exercício , Objetivos , Dor Lombar , Educação de Pacientes como Assunto , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Estudos Transversais , Adulto , Dor Lombar/terapia , Dor Lombar/diagnóstico , Terapia por Exercício/métodos , Idoso , Dinamarca , Educação de Pacientes como Assunto/métodos , Autogestão/métodos , Adulto Jovem , Fatores Etários , Alberta , Fatores Sexuais
7.
BMC Palliat Care ; 23(1): 179, 2024 Jul 19.
Artigo em Inglês | MEDLINE | ID: mdl-39030499

RESUMO

BACKGROUND: Palliative rehabilitation amalgamates the principles of palliative care and rehabilitation to enhance patients' quality of life by optimizing physical function and maximizing autonomy despite advancing illness. Alongside providing non-pharmacological symptom management, it emphasizes personalized goal-setting tailored to individual needs. This case illustrates the transformative impact targeted physiotherapy interventions can have on patients' physical function, morale and motivation in spite of their expected deterioration. CASE PRESENTATION: An 85-year-old male with angioimmunoblastic T cell lymphoma was admitted to home hospice care. He was referred for physiotherapy to optimize his function and mobility despite his short prognosis. A conversation guide was used throughout the duration of therapy to identify personal goals, prescribe and review the use of appropriate interventions, and discuss future therapeutic plans. Within a month he achieved his functional goals, experienced reduced physical dependency, and had increased satisfaction in his ability to participate more actively in self-care. This also resulted in significant improvements in his confidence, mood, and overall well-being. Engaging the patient actively in his care and management journey provided him with significant motivation and hope. CONCLUSION: The case study highlights the vital role of physiotherapists in facilitating transparent communication among patients, healthcare providers, and caregivers throughout palliative rehabilitation. Through open dialogue and utilizing conversation guides, physiotherapists help understand patient preferences, goals, and motivation. This patient-centred approach ensures that therapeutic interventions align with individual needs, enhancing overall patient care and the provision of holistic palliative care.


Assuntos
Cuidados Paliativos , Humanos , Masculino , Idoso de 80 Anos ou mais , Cuidados Paliativos/métodos , Objetivos , Modalidades de Fisioterapia , Qualidade de Vida/psicologia
8.
Eur Child Adolesc Psychiatry ; 33(1): 279-289, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36790555

RESUMO

The problematic use of technology of children and adolescents is becoming a growing problem. Research has shown that excessive technology use predicts a variety of psychological and physical health problems. The aim of this study was to analyze the role of leisure time activities (structured and unstructured) in adolescents as a predictor of problematic technology use. Participants were 7723 adolescents, of which 55% were girls, from four Spanish-speaking countries (Chile, Spain, Mexico, and Peru) between the ages of 13 and 18 years. The evaluation instrument applied was the YOURLIFE project self-report questionnaire. Two executive functions were measured: goal setting and inhibitory control. Using structural equation modeling, findings indicated that structured leisure time activities predicted less PTU, whereas unstructured activities predicted more PTU, MLχ2 (69, N = 7723) = 806.60; CFI = 0.929, RMSEA = 0.042, and the model had good predictive capacity for PTU (R2 = 0.46). Structured and unstructured activities also showed indirect effects on PTU through executive functions. As adolescents spent more time in unstructured leisure activities, poorer goal setting, inhibitory control skills, and more PTU were found. The opposite was true for structured leisure time activities. Implications of structured leisure activities to develop executive functioning and to prevent PTU for adolescents are discussed.


Assuntos
Comportamento do Adolescente , Atividades de Lazer , Criança , Feminino , Humanos , Adolescente , Masculino , Atividades de Lazer/psicologia , Inquéritos e Questionários , Autorrelato , Comportamento do Adolescente/psicologia , Chile
9.
Neuropsychol Rehabil ; : 1-32, 2024 May 28.
Artigo em Inglês | MEDLINE | ID: mdl-38805592

RESUMO

Goal Attainment Scaling (GAS) is a method for writing person-centred approach evaluation scales that can be used as an outcome measure in clinical or research settings in rehabilitation. To be used in a research setting, it requires a high methodological quality approach. The aim of this study was to explore the feasibility and reliability of the GAS quality rating system, to ensure that GAS scales used as outcome measures are valid and reliable. Secondary objectives were: (1) to compare goal attainment scores' reliability according to how many GAS levels are described in the scale; and (2) to explore if GAS scorings are influenced by who scores goal attainment. The GAS scales analysed here were set collaboratively by 57 cognitively impaired adults clients and their occupational therapist. Goals had to be achieved within an inpatient one-month stay, during which clients participated in an intervention aimed at improving planning skills in daily life. The GAS quality rating system proved to be feasible and reliable. Regarding GAS scores, interrater reliability was higher when only three of the five GAS levels were described, i.e., "three milestone GAS" (0.74-0.92), than when all five levels were described (0.5-0.88), especially when scored by the clients (0.5 -0.88).

10.
Pers Individ Dif ; 2242024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38882675

RESUMO

It is well established that people scoring high in narcissism fantasize about a grandiose future. However, little research has examined whether narcissism is actually associated with setting unrealistic, grandiose future goals for oneself. In the present study, we pool three independent adult samples (total N = 482) to evaluate the relationship between three dimensions of narcissism (agentic extraversion, antagonism, and narcissistic neuroticism) and self-reported likelihood of setting statistically unlikely goals (e.g., creating world peace). Through a series of bootstrapped correlation and regression analyses, we find that participants scoring higher in agentic extraversion and antagonism are more likely to set unrealistic goals, whereas participants scoring higher in narcissistic neuroticism are less likely to set unrealistic goals. When controlling for covariance between these narcissism dimensions as well as self-esteem and history of manic/hypomanic symptoms, agentic extraversion emerges as the strongest correlate of setting unrealistic goals. Overall, this study demonstrates that narcissism, and particularly agentic extraversion, is associated with intending to set grandiose future goals.

11.
Phys Occup Ther Pediatr ; 44(2): 198-215, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-37326454

RESUMO

AIMS: The study aimed to describe the implementation of a collaborative ride-on car (ROC) intervention by applying a practice model of family-professional collaboration. The model involves specific strategies for collaboration, "visualizing a preferred future" and "scaling questions." METHODS: The participants were two young children with mobility limitations and their mothers. The 12-week of ROC intervention involved training sessions with a therapist and home sessions. The outcomes included the Canadian Occupational Performance Measure (COPM) and Goal Attainment Scaling (GAS). RESULTS: The collaborative strategies facilitated parent engagement in goal setting, planning, and evaluation. After the intervention, the mothers' ratings of their children's performance and parent satisfaction on the COPM increased by 6 and 3 points, respectively, and the level of goal attainment exceeded expectations (+1 on GAS) in both families. Prior to the ROC intervention, both families were hesitant to use powered mobility. However, the experience of participating in the ROC intervention process broadened parents' perspectives on self-directed mobility and led them to explore options for their children to move independently. CONCLUSIONS: The collaborative ROC intervention can be used as an intervention for early mobility and a bridging step for families reluctant to use a powered wheelchair.


Assuntos
Automóveis , Cadeiras de Rodas , Criança , Feminino , Humanos , Pré-Escolar , Canadá , Mães , Pais
12.
Qual Life Res ; 32(2): 413-424, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36088501

RESUMO

PURPOSE: To estimate among people living with chronic HIV, to what extent providing feedback on their health outcomes will affect the number and specificity of patient-formulated self-management goals. METHODS: A personalized feedback profile was produced for individuals enrolled in a Canadian HIV Brain Health Now study. Goal specificity was measured by total number of specific words (matched to a domain-specific developed lexicon) per person-words using text mining techniques. RESULTS: Of 176 participants enrolled and randomly assigned to feedback and control groups, 110 responses were received. The average number of goals was similar for both groups (3.7 vs 3.9). The number of specific words used in the goals formulated by the feedback and control group were 642 and 739, respectively. Specific nouns and actionable verbs were present to some extent and "measurable" and "time-bound" words were mainly missing. Negative binomial regression showed no difference in goal specificity among groups (RR = 0.93, 95% CI 0.78-1.10). Goals set by both groups overlapped in 8 areas and had little difference in rank. CONCLUSION: Personalized feedback profile did not help with formulation of high-quality goals. Text mining has the potential to help with difficulties of goal evaluation outside of the face-to-face setting. With more data and use of learning models automated answers could be generated to provide a more dynamic platform.


Assuntos
Infecções por HIV , Autogestão , Humanos , Objetivos , Qualidade de Vida/psicologia , Canadá
13.
Health Expect ; 2023 Oct 13.
Artigo em Inglês | MEDLINE | ID: mdl-37830439

RESUMO

BACKGROUND: Chronic conditions and multimorbidity, the presence of two or more chronic conditions, are increasingly common in older adults. Effective management of chronic conditions and multimorbidity in older adults requires a collaborative and person-centred approach that considers the individual's goals, preferences and priorities. However, ensuring high-quality personalised care for older adults with multimorbidity can be challenging due to the complexity of their care needs, limited time and a lack of patient preparation to discuss their personal goals and preferences with their healthcare team. OBJECTIVE: To codesign a communication and goal-setting tool, My Wellbeing Journal, to support personalised care planning for older adults with chronic conditions and multimorbidity. DESIGN: We drew on an experience-based codesign approach to develop My Wellbeing Journal. This article reports on the final end-user feedback, which was collected via an online survey with older adults and their carers. SETTING AND PARTICIPANTS: Older adults with chronic conditions, multimorbidity and informal carers living in Australia. Personalised care planning was considered in the context of primary care. RESULTS: A total of 88 participants completed the online survey. The survey focused on participants' feedback on the tool in terms of effectiveness, efficiency, satisfaction and errors encountered. This feedback resulted in modifications to My Wellbeing Journal, which can be used during clinical encounters to facilitate communication, goal setting and progress tracking. DISCUSSION AND CONCLUSIONS: Clinicians and carers can use the tool to guide discussions with older adults about their care planning and help them set realistic goals that are meaningful to them. The findings of this study could be used to inform the development of recommendations for healthcare providers to implement person-centred, goal-oriented care for older adults with chronic conditions and multimorbidity. PATIENT OR PUBLIC CONTRIBUTION: Older adults living with chronic conditions and multimorbidity and their carers have contributed to the development of a tool that has the potential to significantly enhance the experience of personalised care planning. Their direct involvement as collaborators has ensured that the tool is optimised to meet the standards of effectiveness and usability.

14.
Health Expect ; 26(6): 2205-2215, 2023 12.
Artigo em Inglês | MEDLINE | ID: mdl-37424358

RESUMO

BACKGROUND: Person-centred goal planning is increasingly being incorporated into healthcare interventions. People experiencing severe and persistent mental illnesses (SPMIs) have high levels of co-occurring health conditions, reducing their life expectancy when compared with the general population. As medications are commonly used in the treatment of SPMIs, community pharmacists are well-placed to support the health and wellbeing of this population. OBJECTIVES: To examine pharmacists' and service users' experiences of goal planning as a component of a community pharmacy-based health intervention for people experiencing SPMIs (PharMIbridge intervention). METHODS: This study utilised a qualitative exploratory approach with an interpretive description method. Semistructured interviews were undertaken with community pharmacists (n = 16) and service user participants (n = 26) who had participated in pharmacist support services for people experiencing SPMIs (PharMIbridge intervention). RESULTS: Four themes relating to goal planning were identified. First, goal planning provided purpose and motivation for participation in the intervention. Planning realistic goals was important but often challenging. Both pharmacists and service users highlighted the relational aspects of goal planning and how strong relationships supported positive behaviour change and outcomes. Finally, individualised and flexible approaches were important aspects of the intervention, ensuring goals were meaningful to service users. CONCLUSIONS: The findings from this study identified positive outcomes from the inclusion of goal-planning processes in a community pharmacy-based health intervention. Further research regarding tools, strategies or training that could support future goal-planning interventions in primary healthcare is needed. PATIENT OR PUBLIC CONTRIBUTION: The PharMIbridge randomised controlled trial research team included lived experience members and was overseen by an expert panel that included members with a lived experience of mental illness and representatives from key organisations. The training provided to pharmacists was co-designed and co-delivered by the researchers and lived experience representatives, and pharmacists were supported by lived experience mentors. Service user participants were invited to participate in the interviews through a number of pathways (e.g., at the completion of the intervention, flyers). Those interested were provided with the full study participant information and provided with a $30 gift voucher at the conclusion of the interview.


Assuntos
Serviços Comunitários de Farmácia , Transtornos Mentais , Farmácias , Humanos , Motivação , Objetivos , Austrália , Transtornos Mentais/terapia , Farmacêuticos
15.
Rheumatol Int ; 43(10): 1897-1904, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37481593

RESUMO

Patients with Inflammatory Arthritis (IA) often experience difficulties in daily life as a result of their disease. Unfortunately, outpatient consultations in daily practice tend to focus on medical topics, thereby ignoring the impact of the disease on patients' daily lives. Patient-Reported Outcomes (PROs) can be used to understand this impact, but they are not enough for offering person-centered care. Because the patient's true values and goals can only be ascertained during a proper conversation, which should include both medical as well as patient goals. Therefore, the aim of the study is to evaluate the effect of a goal management strategy with integrated feedback on goal attainment and Health-Related Quality of Life(HRQoL) in IA patients. IA patients with an active disease were given the opportunity to set and follow-up goals. In addition to goal setting, patients were asked to complete online questionnaires on various PROs, including HRQoL. Ninety-two IA patients participated in the study. The mean age was 51 years and most of them had rheumatoid arthritis. A total of 302 patient goals were set, of which 32% were achieved. In the entire population, HRQoL did not change over time, but patients who did not meet their goals tended to report a lower HRQoL. Incorporating a feedback mechanism in a goal-setting strategy has a positive effect on goal attainment. Yet no effect was seen on HRQoL, but this may due to the fact that general HRQoL measurement are not sensitive or specific enough to detect changes that are accompanied with goal setting and attainment.


Assuntos
Artrite Reumatoide , Objetivos , Humanos , Pessoa de Meia-Idade , Retroalimentação , Qualidade de Vida , Artrite Reumatoide/terapia , Pacientes Ambulatoriais
16.
Clin Rehabil ; 37(10): 1420-1434, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37093740

RESUMO

OBJECTIVE: To explore rehabilitees' and professionals' experiences of goal-setting in a context of (un)certainty with a progressive neurodegenerative disease and how they navigate this (un)certainty in Parkinson's disease rehabilitation. DESIGN: A long-term multi-sited ethnographic fieldwork (2019-2020) following 20 rehabilitees and their goals over time and settings. Observation at 30 goal-setting meetings. PARTICIPANTS: Rehabilitees and professionals in Danish Parkinson's disease rehabilitation. Two randomly chosen groups of rehabilitees attending a Parkinson's disease course at a rehabilitation centre participated. METHODS: Semi-structured interviews and participant observation. RESULTS: Living with Parkinson's disease holds a certainty that the condition will progress yet an uncertainty regarding the pace and severity, as indicated by the notion (un)certainty. The (un)certainty challenges goal-setting. Reflecting on goal-setting, rehabilitees brought forth existential, economical, and societal considerations. Some expressed an ambivalent view, questioning the value of goal-setting with a progressive condition, yet finding own rehabilitation goals relevant. Others expressed a pragmatic view, attuning goals to fit the situation. Professionals found that the visible and invisible symptoms and the uncertain pace of Parkinson's made goal-setting challenging. They had to strike a balance between mentioning symptoms to come, yet not rendering the future too bleak. CONCLUSIONS: Rehabilitees and professionals found that setting goals in a condition that progresses is no easy task. They made use of strategies such as observation, repetition, future-proofing strategies, and attuning goals to navigate the (un)certainty. In goal-setting, to maintain functioning with progressive Parkinson's disease was a viable goal. Participants found they just do the best they can to navigate (un)certainty.


Assuntos
Doenças Neurodegenerativas , Doença de Parkinson , Humanos , Doença de Parkinson/reabilitação , Objetivos , Centros de Reabilitação , Antropologia Cultural
17.
Clin Rehabil ; 37(11): 1501-1509, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37487188

RESUMO

OBJECTIVE: To evaluate the preliminary effectiveness of a goal-directed movement intervention using a movement sensor on physical activity of hospitalized patients. DESIGN: Prospective, pre-post study. SETTING: A university medical center. PARTICIPANTS: Patients admitted to the pulmonology and nephrology/gastro-enterology wards. INTERVENTION: The movement intervention consisted of (1) self-monitoring of patients' physical activity, (2) setting daily movement goals and (3) posters with exercises and walking routes. Physical activity was measured with a movement sensor (PAM AM400) which measures active minutes per day. MAIN MEASURES: Primary outcome was the mean difference in active minutes per day pre- and post-implementation. Secondary outcomes were length of stay, discharge destination, immobility-related complications, physical functioning, perceived difficulty to move, 30-day readmission, 30-day mortality and the adoption of the intervention. RESULTS: A total of 61 patients was included pre-implementation, and a total of 56 patients was included post-implementation. Pre-implementation, patients were active 38 ± 21 minutes (mean ± SD) per day, and post-implementation 50 ± 31 minutes per day (Δ12, P = 0.031). Perceived difficulty to move decreased from 3.4 to 1.7 (0-10) (Δ1.7, P = 0.008). No significant differences were found in other secondary outcomes. CONCLUSIONS: The goal-directed movement intervention seems to increase physical activity levels during hospitalization. Therefore, this intervention might be useful for other hospitals to stimulate inpatient physical activity.


Assuntos
Exercício Físico , Hospitalização , Comportamento Sedentário , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Limitação da Mobilidade , Alta do Paciente , Monitores de Aptidão Física
18.
Clin Rehabil ; 37(9): 1153-1177, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-36862585

RESUMO

OBJECTIVE: To compare the effectiveness of a structured goal-setting and tailored follow-up rehabilitation intervention with existing rehabilitation in patients with rheumatic and musculoskeletal diseases. DESIGN: A pragmatic stepped-wedge cluster randomized trial. SETTING: Eight rehabilitation centers in secondary healthcare, Norway. PARTICIPANTS: A total of 374 adults with rheumatic and musculoskeletal diseases were included in either the experimental (168) or the control group (206). INTERVENTIONS: A new rehabilitation intervention which comprised structured goal setting, action planning, motivational interviewing, digital self-monitoring of goal progress, and individual follow-up support after discharge according to patients' needs and available resources in primary healthcare (the BRIDGE-intervention), was compared to usual care. MAIN MEASURES: Patient-reported outcomes were collected electronically on admission and discharge from rehabilitation, and after 2, 7, and 12 months. The primary outcome was patients' goal attainment measured by the Patient Specific Functional Scale (0-10, 10 best) at 7 months. Secondary outcome measures included physical function (30-s Sit-To-Stand test), health-related quality of life (EQ-5D-5L-index), and self-assessed health (EQ-VAS). The main statistical analyses were performed on an intention-to-treat basis using linear mixed models. RESULTS: No significant treatment effects of the BRIDGE-intervention were found for either primary (Patient Specific Functional Scale mean difference 0.1 [95% CI: -0.5, 0.8], p = 0.70), or secondary outcomes 7 months after rehabilitation. CONCLUSION: The BRIDGE-intervention was not shown to be more effective than existing rehabilitation for patients with rheumatic and musculoskeletal diseases. There is still a need for more knowledge about factors that can improve the quality, continuity, and long-term health effects of rehabilitation for this patient group.


Assuntos
Doenças Musculoesqueléticas , Qualidade de Vida , Adulto , Humanos , Motivação , Hospitalização
19.
Int J Lang Commun Disord ; 58(2): 342-356, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36218168

RESUMO

PURPOSE: Communicative participation poses a challenge in meetings between healthcare professionals (HCPs) and people with aphasia (PwA). How communication is affected by aphasia in group meetings, where several healthcare professionals participate together with the patient, is largely unexplored. The aim of this study was to investigate self-rated communicative participation during goal-setting meetings among PwA compared to patients without aphasia and to investigate whether communicative participation among PwA was associated with self-rated knowledge about aphasia among HCPs. A further aim was to investigate if there was a difference in the use of communication strategies among HCPs in the respective situations. METHODS: Nine PwA and nine control patients without aphasia rated their experience of communication during a goal-setting meeting. Thirty-eight HCPs rated their knowledge about aphasia and communication, and their use of communication strategies during goal-setting meetings. RESULTS: The PwA reported being listened to by the HCPs as well as being able to comprehend the meeting. PwA with more severe language impairment did not report a lower level of communicative participation compared to PwA with milder impairment. Half of the patients from both groups indicated some difficulty asking questions during the meeting. Patients' ratings of communication were not correlated to HCPs' knowledge of communication strategies. There was a significant difference in self-rated use of communication strategies among HCPs for the two conditions, although the individual variation was large. CONCLUSION: Results from both PwA and controls imply that patients may need more support to be able to ask questions in meetings with HCPs. Although self-ratings increase the ecological validity of the study of participation, further studies could benefit from using video observations in combination with self-reported experience, since awareness might influence results. WHAT THIS PAPER ADS: What is already known on this subject Aphasia is an acquired language disorder that affects patient-provider communication. In stroke rehabilitation, person-centred goal setting is a key component. If healthcare professionals (HCPs) are not able to use adequate communication strategies, a lack of accessible communication can become a barrier to person-centredness. There are evidence-based communication strategies which can be used to overcome this barrier. What this paper adds to existing knowledge This study aimed to investigate communicative participation during goal-setting meetings from the perspective of patients with aphasia and HCPs. To our knowledge, this is the first study where persons with aphasia are asked to rate communicative participation in goal-setting meetings. To broaden the perspective on communication and goal setting, ratings of patients with aphasia are compared to ratings by patients with stroke but no aphasia. The results of this study indicate that there is room for improvement regarding communication during goal-setting meetings. However, asking direct questions on communicative participation to persons with severe aphasia may not be feasible. What are the potential or actual clinical implications of this work? The results of this study imply that both patients with and without aphasia may need more support to be able to express themselves during goal-setting meetings. There also seems to be a need for further education on aphasia and communication strategies among rehabilitation professionals.


Assuntos
Afasia , Acidente Vascular Cerebral , Humanos , Objetivos , Afasia/etiologia , Afasia/reabilitação , Acidente Vascular Cerebral/complicações , Comunicação , Atenção à Saúde
20.
Child Care Health Dev ; 49(4): 760-768, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-36513964

RESUMO

AIM: The aim of this study is to describe the individualized occupational performance issues identified by parents/carers and children prior to selective dorsal rhizotomy (SDR) surgery and analyse change up to 2 years post surgery in goal attainment and quality of life (QoL). METHOD: The Australian SDR Research Registry (trial registration: ACTRN12618000985280) was used to extract data for individualized goals, goal attainment and QoL based on the Canadian Occupational Performance Measure (COPM) and the Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child parent-proxy) at baseline and 1 and 2 years following SDR. Change in mean scores was analysed using linear mixed models. RESULTS: Fifty-two children had COPM scores at baseline and 1 and/or 2 years post, of which 28 had two QoL scores. COPM problem areas included leisure (n = 39), productivity (n = 37) and self-care (n = 173). The most common goals were walking (26.1%), participation in physical activities (17.7%) and transitions (14.1%). Mean COPM scores improved significantly between baseline to 1 year and baseline to 2 years (P < 0.001). Mean QoL scores improved between baseline to 1 year for functional QoL domains: participation and physical health (P = 0.003) and pain and impact of disability (P = 0.011). CONCLUSIONS: Collaborative goal setting is an integral part of family-centred rehabilitation practice. The COPM was an appropriate individualized outcome measure in identifying meaningful goals for our SDR cohort. Results demonstrate improved scores in goal attainment and improvement in functional QoL domains. This paper highlights the need to include outcomes that measure daily life experiences.


Assuntos
Paralisia Cerebral , Rizotomia , Humanos , Rizotomia/métodos , Qualidade de Vida , Objetivos , Austrália , Canadá , Paralisia Cerebral/reabilitação , Resultado do Tratamento
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