The Lived Experience of Interdependence: Support Worker Relationships and Implications for Wider Rehabilitation

2021 ◽  
pp. 1-7
Author(s):  
John A. Bourke
Keyword(s):  
Lived Experience ◽  
Functional Independence ◽  
Self Determination ◽  
Support Worker ◽  
Meaningful Life ◽  
And Control

Abstract Engaging in a meaningful life where one can exercise autonomy has been proposed as a key aim of rehabilitation. Influenced by a neoliberal worldview, this has traditionally been characterised by a pursuit towards individual functional independence in which one completes tasks and activities unassisted. However for many persons, individual functional independence may not be a realistic, prioritised or beneficial goal. Many individuals must learn to work with support workers to exercise choice and control. Such relationships extend beyond a transactional nature and involve many subtle characteristics. In this article, I draw on my lived experience of partnering with support workers to illustrate the complexity of such relationships and how they can enable interdependence to serve as a vehicle to self-determination. I finish with some ideas about what rehabilitation can do to recognise the important role human connections play in facilitating interdependence. Understanding the nature of these relationships is necessary to provide services which value interdependence, supporting people to pursue a meaningful life following impairment.

Choice and Control Within Family Relationships: The Lived Experience of Adults With Intellectual Disability

2018 ◽  
Vol 56 (3) ◽  
pp. 188-201 ◽  
Author(s):  
Bernadette Curryer ◽  
Roger J. Stancliffe ◽  
Angela Dew ◽  
Michele Y. Wiese
Keyword(s):  
Decision Making ◽  
Intellectual Disability ◽  
Lived Experience ◽  
Family Support ◽  
Family Relationships ◽  
Interpretative Phenomenological Analysis ◽  
Phenomenological Analysis ◽  
Self Determination ◽  
Semistructured Interviews ◽  
And Control

Abstract Increased choice and control is a driving force of current disability policy in Australia for people with disability and their families. Yet little is known of how adults with intellectual disability (ID) actually experience choice and control within their family relationships. We used interpretative phenomenological analysis of individual, semistructured interviews conducted with 8 Australian adults with ID to understand the meaning given to their experience of family support received around choice and decision making. Three themes were identified: (1) centrality of family, (2) experience of self-determination, and (3) limitations to choice and control. The participants identified trusted family members from whom guidance around choice and decision making was both sought and received, often involving mutual decision making and limitations to control.

Scham und Autonomie

2012 ◽  
Vol 2012 (1) ◽  
pp. 163-192
Author(s):  
Sonja Rinofner-Kreidl
Keyword(s):  
Decision Making ◽  
Social Dynamics ◽  
Self Esteem ◽  
Self Determination ◽  
Intentional Content ◽  
Conceptual Clarification ◽  
The Social ◽  
Conventional Behavior ◽  
And Control

Autonomy is associated with intellectual self-preservation and self-determination. Shame, on the contrary, bears a loss of approval, self-esteem and control. Being afflicted with shame, we suffer from social dependencies that by no means have been freely chosen. Moreover, undergoing various experiences of shame, our power of reflection turns out to be severly limited owing to emotional embarrassment. In both ways, shame seems to be bound to heteronomy. This situation strongly calls for conceptual clarification. For this purpose, we introduce a threestage model of self-determination which comprises i) autonomy as capability of decision-making relating to given sets of choices, ii) self-commitment in terms of setting and harmonizing goals, and iii) self-realization in compliance with some range of persistently approved goals. Accordingly, the presuppositions and distinctive marks of shame-experiences are made explicit. Within this framework, we explore the intricate relation between autonomy and shame by focusing on two questions: on what conditions could conventional behavior be considered as self-determined? How should one characterize the varying roles of actors that are involved in typical cases of shame-experiences? In this connection, we advance the thesis that the social dynamics of shame turns into ambiguous positions relating to motivation, intentional content,and actors’ roles.

Diplomatic Doctrine and Style with Chinese Characteristics

2020 ◽  
Vol 16 (2-3) ◽  
pp. 370-380
Author(s):  
Chas W. Freeman
Keyword(s):  
Political Leadership ◽  
Self Determination ◽  
Chinese Revolution ◽  
Chinese Characteristics ◽  
And Control ◽  
Chinese Diplomacy ◽  
Contemporary Chinese ◽  
The Way

Summary Chinese diplomatic style is the product of many influences. It is rooted in 2,000 years of history but also reflects changes resulting from the Chinese Revolution and the dramatic expansion of its wealth, power, status and interests ongoing today. Much is made of the hierarchical tradition in China’s diplomatic thinking and its resistance to Western diplomatic norms. However, these provide unreliable guides for contemporary Chinese diplomacy. While ‘face’, in terms of the respect of others remains an important consideration, Chinese diplomacy is influenced by upholding its understanding of the principles of sovereignty, non-intervention and self-determination. It is also influenced by the ruling Chinese Communist Party’s conceptions of how political leadership and control are exercised and maintained. These concerns manifest themselves in the way Chinese diplomatic style has avoided force, favoured ambiguity and operated with a clear, but creatively interpreted, distinction between non-negotiable core principles and more flexible concrete arrangements.

Why is lived experience important for market stewardship? A proposed framework for why and how lived experience should be included in stewarding disability markets

2021 ◽  
Author(s):  
Ariella Meltzer ◽  
Helen Dickinson ◽  
Eleanor Malbon ◽  
Gemma Carey
Keyword(s):  
Lived Experience ◽  
Knowledge Production ◽  
Policy Research ◽  
Market Forces ◽  
Research Knowledge ◽  
Key Points ◽  
People With Disability ◽  
And Control ◽  
Insight Into ◽  
Inputs And Outputs

Background: Many countries use market forces to drive reform across disability supports and services. Over the last few decades, many countries have individualised budgets and devolved these to people with disability, so that they can purchase their own choice of supports from an available market of services.Key points for discussion: Such individualised, market-based schemes aim to extend choice and control to people with disability, but this is only achievable if the market operates effectively. Market stewardship has therefore become an important function of government in guiding markets and ensuring they operate effectively.The type of evidence that governments tend to draw on in market stewardship is typically limited to inputs and outputs and has less insight into the outcomes services do or do not achieve. While this is a typical approach to market stewardship, we argue it is problematic and that a greater focus on outcomes is necessary.Conclusions and implications: To include a focus on outcomes, we argue that market stewards need to take account of the lived experience of people with disability. We present a framework for doing this, drawing on precedents where people with disability have contributed lived experience evidence within other policy, research, knowledge production and advocacy contexts.With the lived experience evidence of people with disability included, market stewardship will be better able to take account of outcomes as they play out in the lives of those using the market and, ultimately, achieve greater choice and control for people with disability.<br />Key messages<br /><ul><li>Market stewardship is key to guiding quasi-markets, including in the disability sector;</li><br /><li>Evidence guiding market stewardship is often about inputs and outputs only;</li><br /><li>It would be beneficial to also include lived experience evidence from people with disability;</li><br /><li>We propose a framework for the inclusion of lived experience evidence in market stewardship.</li></ul>

scholarly journals Consumer-run services research and implications for mental health care

2016 ◽  
Vol 25 (5) ◽  
pp. 410-416 ◽  
Author(s):  
S. P. Segal ◽  
S. L. Hayes
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Self Determination ◽  
Functional Improvement ◽  
Way Of Life ◽  
Services Research ◽  
Self Help ◽  
Mental Health Consumers ◽  
The Individual ◽  
The Impact

Mental health consumers/survivors developed consumer-run services (CRSs) as alternatives to disempowering professionally run services that limited participant self-determination. The objective of the CRS is to promote recovery outcomes, not to cure or prevent mental illness. Recovery outcomes pave the way to a satisfying life as defined by the individual consumer despite repetitive episodes of disorder. Recovery is a way of life, which through empowerment, hope, self-efficacy, minimisation of self-stigma, and improved social integration, may offer a path to functional improvement that may lead to a better way to manage distress and minimise the impact of illness episodes. ‘Nothing about us without us’ is the defining objective of the process activity that defines self-help. It is the giving of agency to participants. Without such process there is a real question as to whether an organisation is a legitimate CRS or simply a non-governmental organisation run by a person who claims lived experience. In considering the effectiveness of CRSs, fidelity should be defined by the extent to which the organisation's process conveys agency. Unidirectional helping often does for people what they can do for themselves, stealing agency. The consequence of the lack of fidelity in CRSs to the origins of the self-help movement has been a general finding in multisite studies of no or little difference in outcomes attributable to the consumer service. This, from the perspective of the research summarised herein, results in the mixing of programmatic efforts, some of which enhance outcomes as they are true mutual assistance programmes and some of which degrade outcomes as they are unidirectional, hierarchical, staff-directed helping efforts making false claims to providing agency. The later CRS interventions may provoke disappointment and additional failure. The indiscriminate combining of studies produces the average: no effect.

scholarly journals Developing a Sustainable and Inclusive Northern Knowledge Ecosystem in Canada

2021 ◽  
Vol 13 (16) ◽  
pp. 9213
Author(s):  
Gary N. Wilson
Keyword(s):  
Lived Experience ◽  
Indigenous Peoples ◽  
Research Process ◽  
Self Determination ◽  
Academic Institutions ◽  
Research Methodologies ◽  
The North ◽  
Educational Capacity ◽  
Academic Researchers ◽  
The Future

A knowledge ecosystem is a collection of individuals and organizations who are involved in the creation, management and dissemination of knowledge, both in the form of research and lived experience and teaching. As is the case with ecosystems more generally, they thrive on variation and diversity, not only in the types of individuals and organizations involved but also in the roles that they play. For many decades, the northern knowledge ecosystem in Canada was dominated and controlled by Western scholarly approaches and researchers based in academic institutions outside the North. More recently, this research landscape has started to change, largely in response to the efforts of Indigenous peoples and northerners to realize greater self-determination and self-government. Not only have these changes led to the development of research and educational capacity in the North, but they have also changed the way that academic researchers engage in the research process. The keys to maintaining the future sustainability and health of the northern knowledge ecosystem will be encouraging diversity and balance in the research methodologies and approaches used to generate knowledge about the North and ensuring that the needs and priorities of northern and Indigenous peoples are recognized and addressed in the research process.

scholarly journals Can a Home Care Package deliver a meaningful life? Challenges for rural home care delivery

2021 ◽  
Vol 10 (2) ◽  
pp. 12
Author(s):  
Pauline Marsh ◽  
Amelie Fuller ◽  
Judith Anderson
Keyword(s):  
Home Care ◽  
Care Delivery ◽  
Individual Autonomy ◽  
Negative Consequences ◽  
Meaningful Life ◽  
Current Form ◽  
Life Challenges ◽  
Care Package ◽  
And Control ◽  
Depth Interviews

Objective: To explore the capacity and responsiveness of the Home Care Package (HCP) Program to deliver the promise of a meaningful life for rural residents.Methods: In-depth interviews utilising appreciative enquiry in two local government areas in rural/outer regional Tasmania (MM2-6). Participants: Rural staff and residents who were either receiving, seeking or delivering support through the HCP Program.Results: Interviews revealed that positive impacts of being assisted to stay at home resulted when staff were able to provide support that was appropriate to need, and enabled the continuation of rural community engagement, individual autonomy and control. When the HCP did not provide these, or even hindered them, there were negative consequences, and feelings of confusion, mistrust, and disappointment for staff and residents. The rural context creates specific challenges for the HCP Program in its current form, related to service availability and choice, staff recruitment, training and availability, and client/provider needs mismatch.Conclusions: Older rural people are variously impacted upon by the HCP Program. Factors of rurality, including workforce issues, hamper the Program’s potential to positively contribute to a meaningful life. As demand grows, changes are needed. There is a need to examine the Program design for urban-centrisms, and gain a greater awareness of older rural people’s needs and rural service challenges.

scholarly journals Relationship of indicators of socio-psychological adaptation and characteristics of personal self-determination in students with special needs

2020 ◽  
Vol 210 ◽  
pp. 19016
Author(s):  
Julia Selivanova ◽  
Marina Konovalova ◽  
Elena Shchetinina
Keyword(s):  
Special Needs ◽  
Internal Control ◽  
Risk Taking ◽  
Psychological Adaptation ◽  
Active Participation ◽  
Self Determination ◽  
Students With Special Needs ◽  
Self Acceptance ◽  
And Control ◽  
Relationship Of

The article examines the correlation between the indicators of social and psychological adaptation of students with special needs and the characteristics of their personal self-determination. The average indicators of the primary scales in the questionnaire of social and psychological adaptation of students with special needs were calculated. The study established positive interrelationships between adaptability and meaningful indicators of personal self-determination, such as orientation towards maximum involvement in activities and emotional richness of life, confidence in one's abilities and the possibility to control the events of one's life. Self-acceptance as a component of socio-psychological adaptation positively correlates to the target indicators of personal self-determination, such as the meaningfulness of life, the presence of a goal in life and satisfaction with the results of self-determination. Internal control positively correlates to satisfaction with the results of self-determination. External (in relation to the personality) control as a component of socio-psychological adaptation negatively correlates to the assessment of energy, involvement, internal control, risk-taking as ways to overcome life's problems, and also to current life as an emotionally intense period of life. Submissiveness as a component of socio-psychological adaptation is negatively interconnected with the idea of a person's ability to control everything that is happening. Escapism (avoiding problems) negatively correlates to living an emotionally rich life, active participation and control as ways to overcome difficulties.

scholarly journals The effect on subjective quality of life of occupational therapy based on adjusting the challenge–skill balance: a randomized controlled trial

2019 ◽  
Vol 33 (11) ◽  
pp. 1732-1746
Author(s):  
Ippei Yoshida ◽  
Kazuki Hirao ◽  
Ryuji Kobayashi
Keyword(s):  
Quality Of Life ◽  
Occupational Therapy ◽  
Controlled Trial ◽  
Functional Independence Measure ◽  
Functional Independence ◽  
Subjective Quality ◽  
Subjective Quality Of Life ◽  
Rehabilitation Process ◽  
And Control

Objective: To verify the effect of adjusting the challenge–skill balance with respect to rehabilitation process. Design: A single-blind, two-arm, parallel-group, randomized controlled trial. Setting: Recovery rehabilitation unit of Harue Hospital, Japan. Subjects: The trial included 72 clients (mean (SD): age, 74.64 (9.51) years; Functional Independence Measure score, 98.26 (15.27)) with cerebral or spinal disease or musculoskeletal disease. Interventions: Clients were randomly divided into two groups: the experimental group, who received occupational therapy with adjustment of the challenge–skill balance, and the control group who received conventional occupational therapy. Time from admission to discharge was considered the implementation period; the final evaluation was conducted at three months after discharge. Main measures: The primary outcome was subjective quality of life (Ikigai-9). Secondary outcomes were the health-related quality of life (EuroQol–5 Dimensions, Five Levels (EQ-5D-5L)), the Flow State Scale for Occupational Tasks, and the Functional Independence Measure. A cost-effectiveness analysis was conducted using total cost and quality-adjusted life-year based on the EQ-5D-5L. Results: Significant differences were observed between the experimental and control groups with respect to the Ikigai-9 score ( P = 0.008) and EQ-5D-5L ( P = 0.038), and the effect sizes were 0.76 (95% confidence interval [CI]: 0.27–1.24) and 0.62 (95% CI: 0.14–1.10), respectively. No significant between-group differences in other outcomes were observed, for example, the Functional Independence Measure score improved in both experimental and control groups (119.80 (5.50) and 118.84 (6.97), respectively. The incremental cost-effectiveness ratio was US$5518.38. Conclusions: Adjusting the challenge–skill balance may be a useful approach to improve the participant’s subjective quality of life in the rehabilitation process.

Lived experience influencing law reform: insights from a collaborative research project

2020 ◽  
pp. 146879412092565
Author(s):  
Eilionóir Flynn ◽  
Clíona de Bhailís ◽  
María Laura Serra
Keyword(s):  
Lived Experience ◽  
Collaborative Research ◽  
Research Team ◽  
Self Determination ◽  
Law Reform ◽  
Legal Capacity ◽  
Research Project ◽  
Recruitment And Selection ◽  
Selection Of

This article will explore the methodologies employed in a collaborative research project on lived experience of exercise or denial of legal capacity, known as the Voices of Individuals: Collectively Exploring Self-determination (VOICES) project. In so doing, the project’s research team will reflect on key decisions about the project’s background, design, implementation (including the recruitment and selection of participants, workshops and editing contributions) and considerations for further research.

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