Livros: "Family centred care discourse"

1

Ainsworth, Frank. Family centred group care: Model building. Aldershot, Hants, England: Ashgate, 1997.

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2

Canada, Canada Health. Family-centred maternity and newborn care: National guidelines. Ottawa: Health Canada, 2000.

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3

Zlotnik Shaul, Randi, ed. Paediatric Patient and Family-Centred Care: Ethical and Legal Issues. New York, NY: Springer New York, 2014. http://dx.doi.org/10.1007/978-1-4939-0323-8.

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4

Shaul, Randi Zlotnik. Paediatric patient and family-centred care: Ethical and legal issues. New York: Springer, 2014.

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5

Woods, Robert T. Involving families in care homes: A relationship-centred approach to dementia care. London: Jessica Kingsley Publishers, 2007.

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6

Woods, Robert T. Involving families in care homes: A relationship-centred approach to dementia care. London: Jessica Kingsley Publishers, 2007.

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7

Rush, Janet. Family centred maternity care: Scoring tool/survey : project report March 1994. Toronto, Ont: Ontario Ministry of Health, 1994.

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8

1946-, O'Neil Di, ed. Beyond child rescue: Developing family-centred practice at St Luke's. St Leonards, NSW: Allen & Unwin, 1996.

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9

Primary care diagnostics: The patient-centred approach in the new commissioning environment. 2^a ed. London: Radcliffe Publishing, 2011.

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10

Rosner, Christine. Instructor's manual and test questions to accompany Betz, Hunsberger, and Wright family-centred nursing care of children. Philadelphia: W.B.Saunders, 1994.

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11

Talking about care: Two sides to the story. Bristol, UK: Policy, 2005.

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12

Gale, Jerry Edward. Conversation analysis of therapeutic discourse: The pursuit of a therapeutic agenda. Norwood, N.J: Ablex Pub. Corp., 1991.

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13

Kunstmann, Anne-Christin. Familiale Verbundenheit und Gerechtigkeit: Fehlende Perspektiven auf die Pflege von Angehörigen : eine Diskursanalyse. Wiesbaden: VS Verlag für Sozialwissenschaften, 2010.

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14

(Editor), Lynda Smith, Maureen Bradshaw (Editor) e Valerie Coleman (Editor), eds. Family Centred Care. Palgrave Macmillan, 2001.

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15

Ainsworth, Frank. Family Centred Group Care: Model Building. Taylor & Francis Group, 2018.

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16

Ainsworth, Frank. Family Centred Group Care: Model Building. Taylor & Francis Group, 2018.

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17

Family Centred Group Care: Model Building. Taylor & Francis Group, 2018.

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18

Ainsworth, Frank. Family Centred Group Care: Model Building. Taylor & Francis Group, 2018.

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19

Ainsworth, Frank. Family Centred Group Care: Model Building. Routledge, 2018. http://dx.doi.org/10.4324/9780429460067.

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20

Lynda, Smith, Coleman Valerie e Bradshaw Maureen, eds. Family-centred care: Concepts, theory and practice. Basingstoke: Palgrave, 2002.

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21

Chalmers, Beverley. Family-Centred Perinatal Care: Improving Pregnancy, Birth and Postpartum Care. Cambridge University Press, 2017.

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22

Webb, Janine. Counselling and the practice of family centred care. 1997.

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23

Canadian Institute of Child Health. e Canada Health Services Directorate, eds. Family-centred maternity and newborn care: National guidelines. [Ottawa?]: Published by the authority of the Minister of National Health and Welfare, 1987.

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24

Family-centred maternity and newborn care: National guidelines. Ottawa, Ont: Health Canada, 2000.

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25

Canada, Canada Health, ed. Family-centred maternity and newborn care: National guidelines. Ottawa: Health Canada, 2000.

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26

Langton, Helen. The Child with Cancer: Family-Centred Care in Practice. Bailliere Tindall, 2000.

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27

Helen, Langton, ed. The child with cancer: Family-centred care in practice. Edinburgh: Baillière Tindall, 2000.

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28

Shaul, Randi Zlotnik. Paediatric Patient and Family-Centred Care: Ethical and Legal Issues. Springer, 2016.

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29

Family Focused Grief Therapy: A Model of Family-Centred Care during Palliative Care and Bereavement (Facing Death). Open University Press, 2002.

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30

Bloch, Sidney, e David W. Kissane. Family Focused Grief Therapy: A Model of Family-Centred Care during Palliative Care and Bereavement (Facing Death). Open University Press, 2002.

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31

Williams, Brian, M. D. Dowell John e M. D. Snadden David. Patient-Centred Prescribing: Seeking Concordance in Practice (Patient-Centered Care). Not Avail, 2007.

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32

O'Neil, Di, e Dorothy Scott. Beyond Child Rescue: Developing Family Centred Practice at st Luke's. Allen & Unwin Pty., Limited (Australia), 1998.

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33

Lethborg, Carrie, e David W. Kissane. The family perspective. Oxford University Press, 2015. http://dx.doi.org/10.1093/med/9780199656097.003.0176.

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In considering cancer as an illness that affects not only the patient but their entire family, this chapter offers a model of family-centred care to encourage an understanding of the impact of illness on the family, the family in the caregiver role, and the needs of family-based caregivers. From a clinical perspective, the authors offer a guide for assessing these families for interventions, including the use of open communication and information provision, the recognition of past patterns of relating, the encouragement of acceptance of support, discussions with the family as a whole, and support during unpreventable emotional suffering that families experience. Specific interventions described include preventive and supportive interventions, interventions that challenge dysfunction, and interventions with the family when a patient is dying. Family-centred care is challenging as a paradigm but a useful harness to improved quality of life, one that warrants the effort involved to ease the suffering of all.

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34

Charlotte, Ikels, ed. Filial piety: Practice and discourse in contemporary East Asia. Stanford, Calif: Stanford University Press, 2004.

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35

Kissane, David W. Psychosocial care of families in palliative care. Oxford University Press, 2018. http://dx.doi.org/10.1093/oso/9780198806677.003.0007.

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The families of patients in the palliative care setting have a range of educational and care needs that form part of the basic responsibility of the hospice service. Routine family meetings are an important way to address these needs. Additionally, up to one third of families have some level of dysfunction in their relationships, which prove predictive of morbid bereavement outcomes—prolonged grief and major depressive disorders. These families who carry risk of poorer outcomes need additional care, optimally commenced during palliative care, and continued into bereavement to provide continuity of service. Assessment of family strengths and relational functioning provide insight into clinical targets to support a family. The needs of children, the elderly, disabled, or mentally ill family members need to be addressed alongside those of patients with complex illnesses. A preventive model of family-centred care may involve six to ten family therapy sessions across nine to 18 months.

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36

Sampson, Elizabeth, e Karen Harrison Dening. Palliative care and end of life care. Oxford University Press, 2013. http://dx.doi.org/10.1093/med/9780199644957.003.0028.

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Our ageing population and changes in cause of death, mean that increasing number of people will die in old age. Older people have, in many countries, had poor access to good quality end of life care. Many will develop multiple co-morbidities associated with age; dementia, mental health problems and general frailty. Palliative care is an approach which aims to relieve suffering and take account of a person’s physical, psychosocial and spiritual needs as they near the end of life. Advanced dementia is now being perceived as a “terminal illness”. Interventions such as antibiotics and enteral tube feeding remain in use despite little evidence that they improve quality of life or other outcomes. A person-centred approach from a multidisciplinary team is vital in providing good quality end of life care in a range of settings The acknowledgement of anticipatory grief and provision of bereavement support are vital for some family carers.

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37

Sorin-Peters, Riva. The development and evaluation of a learner-centred training program for spouses of adults with chronic aphasia. 2002.

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38

Makarychev, Andrey, e Alexandra Yatsyk. Sovereignty and Russian national identity-making: The biopolitical dimension. Edinburgh University Press, 2018. http://dx.doi.org/10.3366/edinburgh/9781474433853.003.0005.

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The chapter addresses Russian national identity by applying the concept of biopolitics. This approach constitutes a departure from dominant schools of thought, which view contemporary Russian political and social concepts through traditional lenses: institutional change, state–society relations, centre–periphery controversies, etc. Biopolitics offers a specific way of anchoring the uncertain Russian identity in a set of consensually understood nodal points that encapsulate bodily practices of corporeal discipline and control. The chapter argues that Putin’s regime utilises such a biopolitical approach to consolidate its rule, drawing on conservative norms that can be asserted through religious, gender-based or ‘Russian World’-grounded discourses. It examines this point through case studies of school education, anti-adoption legislation, the penitentiary system, family and reproductive health and other aspects.

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39

LeBlanc, Thomas W., e James A. Tulsky. Communication with the patient and family. Oxford University Press, 2015. http://dx.doi.org/10.1093/med/9780199656097.003.0061.

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High-quality palliative medicine depends upon communication that is patient-centred, clear, and attends to the central role of emotion in the medical encounter. Good communication leads to a number of improved outcomes including greater adherence to therapy, higher patient satisfaction, decreased anxiety and depression, and care that is more consistent with patients’ goals. Unfortunately, in practice, communication frequently does not meet these standards and opportunities are lost to meet patients’ most basic needs. That said, good communication can be deconstructed and conceptualized as a series of discrete behaviours and skills including assessing patient understanding before entering into difficult conversations, asking permission to discuss tough topics, delivering information in small manageable chunks while checking for understanding, responding to patients’ emotions, eliciting patients’ values, and aligning treatment preferences to their goals. Specific techniques and cognitive roadmaps exist to help navigate these conversations and ought to be in the toolbox of every palliative care clinician.

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40

Hain, Richard, Ann Goldman, Adam Rapoport e Michelle Meiring, eds. Oxford Textbook of Palliative Care for Children. 3^a ed. Oxford University Press, 2021. http://dx.doi.org/10.1093/med/9780198821311.001.0001.

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The importance of palliative care for children facing life-threatening illness and their families is now widely acknowledged as an essential part of care, which should be available to all children and families, throughout the child’s illness and at the end of life. The new edition of the Oxford Textbook of Palliative Care for Children brings together the most up to date information, current knowledge, evidence, and developments of clinical practice in the field. The main principles underlying this edition remain child and family-centred care, flexible and individualized care, evidence based and reflective practice, and teamwork. Structured into four sections. ‘Foundations of care’ describes core issues, the foundations on which paediatric palliative care is based. ‘Child and family care’ looks at different aspects of psychological, social, and cultural care for the sick child or young person, and their family. These chapters cover the time course of the illness, around the time of death and support for the bereaved family. ‘Symptom care’ focuses on the uses of medication, specific symptoms, and their management. Finally, ‘Delivery of care’ examines practical approaches to care in different environments and the needs of clinicians.

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41

Zaider, Talia, Shira Hichenberg e Lauren Latella. Advancing family communication skills in oncology nursing. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780198736134.003.0028.

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This chapter presents a new communication skills training initiative designed to advance family-centred care in the inpatient oncology setting. Because of their consistent contact with families, oncology nurses are well-positioned to initiate and model supportive care to the family. Two formats of training are presented: (i) a single-session module for acute care nurses focuses on responding to challenging family interactions at the bedside; (ii) a comprehensive, six-month curriculum for advanced practice nurses focuses on conceptualization and intervention skills, as applied to a range of complex family situations that arise during a patient’s admission. The training presented here teaches nurses to effectively partner with families, assess support needs, facilitate collaborative problem-solving, and transition families to psychosocial resources. Both training efforts were piloted at a large, comprehensive cancer centre. Preliminary data supports the feasibility and perceived relevance of training content, as well as gains in nurses’ confidence working effectively with families.

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42

Cullum, Sarah. Management of dementia. Oxford University Press, 2013. http://dx.doi.org/10.1093/med/9780199644957.003.0039.

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The management of dementia discusses the needs of people in both the early and later stages of dementia, focusing on social and environmental aspects as well as physical and psychological. The main management tasks in early dementia are helping the person with dementia and their family come to terms with the diagnosis, optimising quality of life in the present, and planning for the future. In later dementia we deal with maintaining person-hood, the emergence of behavioural and psychological symptoms of dementia, making decisions for a person who no longer has capacity to do so for themselves, and end of life care in people who are increasingly frail and have limited ability to communicate their needs. Underpinning all of these is the need for respect and communication, and to provide person-centred and relationship-centred care for people with dementia and their carers.

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43

Scheunemann, Leslie P., e Robert M. Arnold. Communication with patients and families in the ICU. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780199600830.003.0011.

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Regular, consistent communication with families of intensive care unit (ICU) patients is important for family satisfaction, patient-centred decision-making, and reducing the emotional burden of the ICU stay on family members. In fact, the family meeting can appropriately be considered a core procedure of intensive care practice. Good communication requirements include the appropriate clinicians and family members, providing a quiet and undisturbed setting, and choosing appropriate goals for each meeting. Clinicians should strive to develop skills for listening, observing family dynamics, and responding to emotions. ICU administrators should consider building processes of care to promote regular, consistent communication and partnerships with interdisciplinary teams, such as ethics committees and palliative care that can supplement these skills.

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44

Raveesh, B. N., Swaran P. Singh e Soumitra Pathare. Coercion and mental health services in the Indian subcontinent and the Middle East. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780198788065.003.0016.

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Mental health law in the Indian subcontinent and the Middle East has been evolving over the past few decades. There have been rapid socio-economic, cultural, and psychosocial changes in the traditional, rural and family-centred societies. People with mental disorders are amongst the most vulnerable in these societies but there is meagre literature on the issue about coercion, coercive practice, standard measures on coercion, and restraint in this region. There are problems of limited resources and training and inadequate service provision. Anecdotal evidence suggests that coercion, is common, both in mental health facilities and in the community. This chapter reviews the provision of mental health care in the region, with relevant legislative developments, and the limited research data on coercion.

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45

Muriel, Anna C., e Paula K. Rauch. Talking with families and children about the death of a parent. Oxford University Press, 2015. http://dx.doi.org/10.1093/med/9780199656097.003.0161.

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The untimely death of a parent is one of the most challenging events for families and the clinicians who care for them. This chapter discusses how a basic knowledge of child development and the ways that children understand illness and death can provide a template from which to engage families about how to help their children during this time and into bereavement. It addresses such topics as how children understand death at different ages, timing of discussions with children, decisions about the setting for end-of-life care in a family context, visits between ill parents and children, legacy leaving, and children’s participation in funerals and memorial services. When clinicians support honest, child-centred communication, and help families anticipate common situations and questions, surviving adults are able to use their own best resources to provide thoughtful care for the children.

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46

Emanuel, Linda L., e Rebecca Johnson. Truth telling and consent. Oxford University Press, 2015. http://dx.doi.org/10.1093/med/9780199656097.003.0104.

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Truth telling and informed consent are relatively recently established legal and ethical norms in end-of-life health care. This chapter provides an exploratory guide to the evolution of both norms, highlighting some of the benefits, problems, and issues associated with both terms. It also presents a selection of the stepwise protocols and practices which Western medicine has developed in order to deliver patient-centred palliative care which comforts and relieves. In addition, the chapter discusses the impact that constant adjustment to loss can have on patient psychology and decision-making in end-of-life care scenarios and the value of framing that experience in terms of continuous reintegration. Finally, the chapter discusses the lessons which can be learned from the contested place of family within health-care systems where decision-making depends on truth telling and informed consent, and the lessons which can be learned from familism across the globe.

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47

Mathers, Nigel, e Craig Sinclair. Planning ahead in all areas. Oxford University Press, 2018. http://dx.doi.org/10.1093/oso/9780198802136.003.0026.

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Advance care planning (ACP) has traditionally been identified as a means by which patients can give anticipatory directions for future medical treatment. However the narrow focus on medical treatments has been criticized by those who argue that ACP should commence early in a life-limiting illness, be an ongoing process, and encompass goals and values in a broad range of domains (e.g. cultural, spiritual, lifestyle, and/or financial). Benefits would include reduced focus on end-of-life care, alignment with person-centred care principles, and greater capacity for incorporating ‘future planning’ discussions into routine care. This approach may be accessible to a broader range of patients, enabling meaningful discussions to commence prior to, or soon after, diagnosis of a life-limiting illness. We discuss the implications of this broad approach to ACP for practitioners, patients, and family caregivers, with reference to relevant case examples.

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48

Wein, Simon, e Limor Amit. Adjustment disorders and anxiety. Oxford University Press, 2015. http://dx.doi.org/10.1093/med/9780199656097.003.0174.

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Adjustment disorders and anxiety are two of the more common responses to stressors in palliative care. At one end of the spectrum, adjustment and anxiety are normal defences. However, when coping mechanisms fail these responses can become pathological. Judging when a response is pathological is based on two principles: the severity of symptoms and the extent of disruption of normal functioning or homeostatic adaptation. The intimate two-way relationship between physical and psychological symptoms in palliative care means that physical symptoms have to be well controlled and that psychological symptoms can be masked by physical complaints. Management principles include talking therapies, psychopharmacology, and complementary treatments. Examples of innovative psychological treatments are dignity therapy and meaning-centred therapy. Every palliative care intervention requires consideration of the family and it is also important to monitor anxiety and adjustment of the staff who are also prone to burn-out, compassion fatigue, and difficulties in adjusting to stressors.

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49

Tasker, Robert C., Carlo L. Acerini, Edward Holloway, Asma Shah e Pete Lilitos, eds. Oxford Handbook of Paediatrics 3e. 3^a ed. Oxford University Press, 2020. http://dx.doi.org/10.1093/med/9780198789888.001.0001.

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This new edition of the Oxford Handbook of Paediatrics is a compact, pocket-sized compendium of clinical problems and treatment options from a team of specialist contributors and editors with years of clinical experience. Taking a child-centred approach, the practical advice and know-how contained within this handbook will be invaluable to all those involved in the care of the younger patient. Fully revised and updated, this third edition of the handbook provides vital information on areas such as neonatology, surgery, genetics and congenital malformations, and child protection in a user-friendly and succinct style. Sections are also devoted to covering the treatment of children in the community and the psychological effects of illness on both the child and their family. All chapters have been revised and updated, with many completely overhauled chapters, practical advice, and space for personalized notes. This handbook will be invaluable to all aspects of acute and chronic paediatrics.

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50

Goddard, Shannon L., e Brian H. Cuthbertson. ICU Follow-Up Clinics. Oxford University Press, 2014. http://dx.doi.org/10.1093/med/9780199653461.003.0053.

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ICU follow-up clinics have been proposed and, in some cases, adopted in an effort to improve post-ICU care. Clinics are heterogeneous in staffing and organization and may provide a range of services, from drug reconciliation to mental health referrals. Some clinics integrate support services for family members and caregivers. In other cases, the clinics exist largely as a research environment where they may help to better understand long-term outcomes of survivors of critical illness. Thus far, clinical trials have not shown these clinics to improve patient-centred outcomes or to be cost-effective. However, qualitative literature does suggest a subjective sense of benefit for patients and family members. The lack of quantitative evidence in support of clinics does not mean that the long-term needs of ICU patients cannot be addressed in a formal way. However, it does suggest that clinics are not effective as delivered in the trials. Critical care researchers should be directed by both the qualitative and quantitative literature in conceiving new interventions and testing them in clinical trials. The model of an interdisciplinary clinic including rehabilitation specialists should be further explored.

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