Lived experience leadership

Last updated

Lived experience leadership (or consumer leadership, service user leadership, or patient leadership) in development, delivery, or evaluation of health policy, services, research or education refers to the application of collective experiential knowledge and expertise to decision-making and agenda-setting processes in health services and systems. [1] It differs from patient engagement and involvement initiatives, in which people with lived experience are more tokenistically consulted in initiatives with other health professionals maintaining decision-making power. [2]

Contents

Definitions and Origin

There is a history of advocacy to redress systemic oppression against mental health consumers going back at least to civil rights movements of the 1960s. While mental health policies and services started to consider consumer engagement at this time, [3] and the world's first identified lived experience academic position was developed and implemented at the University of Melbourne in 2000, [4] it was not until 2005 that the concept of consumer leadership was first explicitly proposed in the academic literature by Sarah Gordon, a service user academic based at the University of Otago. [5] Gordon identified that a paradigm shift from engagement or participation to leadership - such that people with lived experience could use that in decision-making processes - would be needed to realise the benefits of lived experiential expertise and to meet policy directives for lived experience involvement.

The concept and practice of lived experience leadership has largely developed within the mental health space. [3] However, across other marginalised groups and advocates, there has been increasing interest in lived experience leadership, including in other parts of the sector such as palliative care [6] or health more broadly, [7] and among, for instance, others who have been marginalised such as people who have experienced homelessness, [8] or people who have experienced incarceration. [9]

Lived experience leadership is often confused or conflated with other participatory approaches, including patient and public involvement, co-production, or co-design. [2] A key distinction between lived experience leadership and other approaches in which other health professionals (i.e., those not working from lived experience perspectives) control health systems and initiatives relates to the extent to which decision-making power and resources are shared. Approaches controlled by other health professionals, in which people with lived experience are kept out of decision-making and agenda-setting roles or processes, have been criticised for such tokenism. [10]

Characterising Lived Experience Leadership

Seminal research into establishing definitions of lived experience leadership has identified key characteristics of it relating to roles, requirements, purpose, and process. [1]

Roles

Lived experience leadership can be enacted through a variety of roles, but it is not role-dependant. [1] While obvious examples of roles in which lived experience leadership may be practiced are senior health positions requiring lived experience, [11] [12] it could also take place in representative roles, or in the absence of formal roles.

Requirements

The requirements for lived experience leadership appear to be lived experience and leadership capacity. [1] To be considered lived experience leadership, the application of lived experiential expertise should take into not only one's own experiences, but also the synthesis of collective lived experiences. [13]

Purpose

The purpose of lived experience leadership is to effect change to improve the circumstances of other service users. [1] Some identified changes brought about by lived experience leadership include contributions to human rights agendas, bridging between services and service users for more meaningful service provision, and less restrictive practices in healthcare. [14]

Process

Lived experience leadership is performed through a variety of processes, namely through collaboration, direct or indirect influence over decision-making, application of lived experience, and development of inclusive cultures. [1] Health systems and organisations usually exclude people with lived experience from decision-making structures. However, evidence suggests that recognising the expertise of people with lived experience, and providing resources or opportunities for them to be able to drive health system agendas is a step towards supporting their leadership. [15]

Related Research Articles

<span class="mw-page-title-main">Advance healthcare directive</span> Legal document

An advance healthcare directive, also known as living will, personal directive, advance directive, medical directive or advance decision, is a legal document in which a person specifies what actions should be taken for their health if they are no longer able to make decisions for themselves because of illness or incapacity. In the U.S. it has a legal status in itself, whereas in some countries it is legally persuasive without being a legal document.

Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Within the published literature, many definitions of palliative care exist. The World Health Organization (WHO) describes palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain, illnesses including other problems whether physical, psychosocial, and spiritual". In the past, palliative care was a disease specific approach, but today the WHO takes a broader patient-centered approach that suggests that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness. This shift was important because if a disease-oriented approach is followed, the needs and preferences of the patient are not fully met and aspects of care, such as pain, quality of life, and social support, as well as spiritual and emotional needs, fail to be addressed. Rather, a patient-centered model prioritizes relief of suffering and tailors care to increase the quality of life for terminally ill patients.

<span class="mw-page-title-main">Geriatrics</span> Specialty that focuses on health care of elderly people

Geriatrics, or geriatric medicine, is a medical specialty focused on providing care for the unique health needs of the elderly. The term geriatrics originates from the Greek γέρων geron meaning "old man", and ιατρός iatros meaning "healer". It aims to promote health by preventing, diagnosing and treating disease in older adults. There is no defined age at which patients may be under the care of a geriatrician, or geriatric physician, a physician who specializes in the care of older people. Rather, this decision is guided by individual patient need and the caregiving structures available to them. This care may benefit those who are managing multiple chronic conditions or experiencing significant age-related complications that threaten quality of daily life. Geriatric care may be indicated if caregiving responsibilities become increasingly stressful or medically complex for family and caregivers to manage independently.

A patient is any recipient of health care services that are performed by healthcare professionals. The patient is most often ill or injured and in need of treatment by a physician, nurse, optometrist, dentist, veterinarian, or other health care provider.

Terminal illness or end-stage disease is a disease that cannot be cured or adequately treated and is expected to result in the death of the patient. This term is more commonly used for progressive diseases such as cancer, dementia, advanced heart disease, and for HIV/AIDS, or long COVID in bad cases, rather than for injury. In popular use, it indicates a disease that will progress until death with near absolute certainty, regardless of treatment. A patient who has such an illness may be referred to as a terminal patient, terminally ill or simply as being terminal. There is no standardized life expectancy for a patient to be considered terminal, although it is generally months or less. Life expectancy for terminal patients is a rough estimate given by the physician based on previous data and does not always reflect true longevity. An illness which is lifelong but not fatal is a chronic condition.

Psychiatric nursing or mental health nursing is the appointed position of a nurse that specialises in mental health, and cares for people of all ages experiencing mental illnesses or distress. These include: neurodevelopmental disorders, schizophrenia, schizoaffective disorder, mood disorders, addiction, anxiety disorders, personality disorders, eating disorders, suicidal thoughts, psychosis, paranoia, and self-harm.

A clinical nurse specialist (CNS) is an advanced practice nurse who can provide advice related to specific conditions or treatment pathways. According to the International Council of Nurses (ICN), an Advanced Practice Nurse is a registered nurse who has acquired the expert knowledge base, complex decision-making skills and clinical competencies for expanded practice, the characteristics of which are shaped by the context and/or country in which s/he is credentialed to practice.

Patient advocacy is a process in health care concerned with advocacy for patients, survivors, and caregivers. The patient advocate may be an individual or an organization, concerned with healthcare standards or with one specific group of disorders. The terms patient advocate and patient advocacy can refer both to individual advocates providing services that organizations also provide, and to organizations whose functions extend to individual patients. Some patient advocates are independent and some work for the organizations that are directly responsible for the patient's care.

The psychiatric survivors movement is a diverse association of individuals who either currently access mental health services, or who have experienced interventions by psychiatry that were unhelpful, harmful, abusive, or illegal.

End-of-life care (EOLC) is health care provided in the time leading up to a person's death. End-of-life care can be provided in the hours, days, or months before a person dies and encompasses care and support for a person's mental and emotional needs, physical comfort, spiritual needs, and practical tasks.

The Liverpool Care Pathway for the Dying Patient (LCP) was a care pathway in the United Kingdom covering palliative care options for patients in the final days or hours of life. It was developed to help doctors and nurses provide quality end-of-life care, to transfer quality end-of-life care from the hospice to hospital setting. The LCP is no longer in routine use after public concerns regarding its nature. Alternative methodologies for Advance care planning are now in place to ensure patients are able to have dignity in their final hours of life. Hospitals were also provided cash incentives to achieve targets for the number of patients placed on the LCP.

Annie Therese Altschul, CBE, BA, MSc, RGN, RMN, RNT, FRCN was Britain's first mental health nurse pioneer; a midwife, researcher, educator, author and a patient advocate, emeritus professor of nursing.

Patient participation is a trend that arose in answer to medical paternalism. Informed consent is a process where patients make decisions informed by the advice of medical professionals.

An informal or primary caregiver is an individual in a cancer patient's life that provides unpaid assistance and cancer-related care. Caregiving is defined as the processing of assisting someone who can't care for themselves, which includes physical, mental, emotional, social, and spiritual needs. Due to the typically late onset of cancer, caregivers are often the spouses and/or children of patients, but may also be parents, other family members, or close friends. Taking care of family members at home is a complicated experience. The relationships involved constantly shift and change, in expected and unexpected ways. The expected or expected changes can negatively affect physical health, emotions, social life, and spiritual well-being of the caregiver. Informal caregivers are a major form of support for the cancer patient because they provide most care outside of the hospital environment. This support includes:

A moral injury is an injury to an individual's moral conscience and values resulting from an act of perceived moral transgression on the part of themselves or others. It produces profound feelings of guilt or shame, moral disorientation, and societal alienation. In some cases it may cause a sense of betrayal and anger toward colleagues, commanders, the organization, politics, or society at large.

In health care, person-centered care is a practice in which patients actively participate in their own medical treatment in close cooperation with their health professionals. Sometimes, relatives may be involved in the creation of the patient’s health plan. The person-centered model of health care is used both for in and outpatient settings, emergency care, palliative care as well as in rehabilitation.

Healthcare chaplaincy is the provision of pastoral care, spiritual care, or chaplaincy services in healthcare settings, such as hospitals, hospices, or home cares.

<i>International Journal of Mental Health Nursing</i> Academic journal

The International Journal of Mental Health Nursing (IJMHN) is a bimonthly peer-reviewed medical journal covering psychiatric and mental health nursing. It is published by Wiley and is the official journal of the Australian College of Mental Health Nurses.

A nurse scientist is a registered nurse with advanced education and expertise in nursing research. These professionals play a critical role in advancing nursing knowledge, improving patient care, and shaping the future of the nursing profession. Highly educated and specialized, nurse scientists conduct research to generate new knowledge about nursing care, employing a deep understanding of nursing theory, research methodologies, and clinical practice. Nurse scientists are essential contributors to the development of new nursing interventions and practices. Their skills extend beyond academic settings and these advanced nurses work in hospitals, research institutes, and community organizations. Through their efforts, nurse scientists have a profound impact on the quality of healthcare, contributing significantly to the improvement of patient care and the overall advancement of the nursing profession. They possess advanced qualifications, typically holding a Ph.D. in nursing or a related field, demonstrating expertise not only in research principles and methodology but also in-depth content knowledge within a specific clinical area. The primary focus of the role is to provide leadership in the development, coordination and management of clinical research studies; provide mentorship for nurses in research; lead evaluation activities that improve outcomes for patients participating in research studies; contribute to the overall health sciences literature. Nurse scientists have been regarded as knowledge brokers. They participate in nursing research.

<span class="mw-page-title-main">Patient and public involvement</span> Patient and public engagement in health sector

Public involvement in medical research refers to the practice where people with health conditions (patients), carers and members of the public work together with researchers and influence what is researched and how. Involvement is not the same as participation which means taking part in research, for example taking a drug in a clinical trial.

References

  1. 1 2 3 4 5 6 Stewart, Stephanie; Scholz, Brett; Gordon, Sarah; Happell, Brenda (February 2019). "'It depends what you mean by leadership': An analysis of stakeholder perspectives on consumer leadership". International Journal of Mental Health Nursing. 28 (1): 339–350. doi:10.1111/inm.12542. PMID   30281898.
  2. 1 2 Scholz, Brett; Stewart, Stephanie; Pamoso, Aron; Gordon, Sarah; Happell, Brenda; Utomo, Bagus (February 2024). "The importance of going beyond consumer or patient involvement to lived experience leadership". International Journal of Mental Health Nursing. 33 (1): 1–4. doi:10.1111/inm.13282. PMID   38131453.
  3. 1 2 Scholz, Brett; Gordon, Sarah; Happell, Brenda (February 2017). "Consumers in mental health service leadership: A systematic review". International Journal of Mental Health Nursing. 26 (1): 20–31. doi:10.1111/inm.12266. PMID   28093883.
  4. ↑ Scholz, Brett (May 5, 2022). "We have to set the bar higher: towards consumer leadership, beyond engagement or involvement". Australian Health Review. 46 (4): 509–512. doi:10.1071/AH22022. PMID   35508415.
  5. ↑ Gordon, Sarah (December 2005). "The Role of the Consumer in the Leadership and Management of Mental Health Services". Australasian Psychiatry. 13 (4): 362–365. doi:10.1080/j.1440-1665.2005.02215.x. PMID   16403131.
  6. ↑ Scholz, Brett; Bevan, Alan; Georgousopoulou, Ekavi; Collier, Aileen; Mitchell, Imogen (September 2019). "Consumer and carer leadership in palliative care academia and practice: A systematic review with narrative synthesis". Palliative Medicine. 33 (8): 959–968. doi:10.1177/0269216319854012. PMID   31199194.
  7. ↑ Edwards, R., Parham, J., Wells, L. (2022). The Australian conusmer leadership experience. Consumers Health Forum of Australia. https://chf.org.au/publications/australian-consumer-leadership-experience
  8. ↑ Andrews, Cal; Heerde, Jessica A (2021). "A role for lived experience leadership in Australian homelessness research". Parity. 34 (6): 22–23.
  9. ↑ Buck, Gillian; Ryan, Kemi; Ryan, Natasha (March 17, 2023). "Practicing Lived Experience Leadership with Love: Photovoice Reflections of a Community-Led Crime Prevention Project". The British Journal of Social Work. 53 (2): 1117–1141. doi:10.1093/bjsw/bcac174.
  10. ↑ Ocloo, Josephine; Garfield, Sara; Franklin, Bryony Dean; Dawson, Shoba (December 2021). "Exploring the theory, barriers and enablers for patient and public involvement across health, social care and patient safety: a systematic review of reviews". Health Research Policy and Systems. 19 (1): 8. doi: 10.1186/s12961-020-00644-3 . PMC   7816359 . PMID   33472647.
  11. ↑ "Job Advert".
  12. ↑ "Mary O'Hagan as the Victorian Government's first Executive Director of Lived Experience". November 11, 2021.
  13. ↑ Stewart, S., Warner, T., Griffiths, S., Edan, V., Makuvachuma, D., Scholz, B., Roper, C., & Kennedy, H. (2023). Power of Self as the Resource and the North Star: A Discursive Analysis of Lived Experience Leaders’ Constructions of Lived Experience Leadership. International Mad Studies Journal, 1(1).
  14. ↑ Byrne, Louise; Stratford, Anthony; Davidson, Larry (March 2018). "The global need for lived experience leadership". Psychiatric Rehabilitation Journal. 41 (1): 76–79. doi:10.1037/prj0000289. PMID   29494198.
  15. ↑ Scholz, Brett; Bocking, Julia; Happell, Brenda (February 2018). "Improving exchange with consumers within mental health organizations: Recognizing mental ill health experience as a 'sneaky, special degree'". International Journal of Mental Health Nursing. 27 (1): 227–235. doi:10.1111/inm.12312. PMID   28145617.
This page is based on this Wikipedia article
Text is available under the CC BY-SA 4.0 license; additional terms may apply.
Images, videos and audio are available under their respective licenses.