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Family-centered care or Relationship-Centered Care [1] is one of four approaches that provides an expanded view of how to work with children and families. Family-centered service is made up of a set of values, attitudes, and approaches to services for children with special needs and their families. In some family-centered settings such as the Hasbro Children's Partial Hospital Program, medical and psychiatric services are integrated to help teach parents and children methods to treat illness and disease. Family-centered service recognizes that each family is unique; that the family is the constant in the child's life; and that they are the experts on the child's abilities and needs. The family works with service providers to make informed decisions about the services and supports the child and family receive. In family-centered service, the strengths and needs of all family members are considered. [2]
Family-centered service reflects a shift from the traditional focus on the biomedical aspects of a child's condition to a concern with seeing the child in context of their family and recognizing the primacy of family in the child's life. The principles argue in favor of an approach that respects families as integral and coequal parts of the health care team. [2] This approach is expected to improve the quality and safety of a patient's care by helping to foster communication between families and health care professionals. Furthermore, by taking family/patient input and concerns into account, the family feels comfortable working with professionals on a plan of care, and professionals are "on board" in terms of what families expect with medical interventions and health outcomes. In some health systems, patients and family members serve as advisers to the hospital in order to provide input that can lead to general quality improvement efforts. [3] Family-centered approaches to health care intervention also generally lead to wiser allocation of health care resources, as well as greater patient and family satisfaction.
“Family” means any person(s) who plays a significant role in an individual's life. This may include a person(s) not legally related to the individual who act as advocates. [4] Members of “family” include spouses, domestic partners, and both different-sex and same-sex significant others. “Family” includes a minor patient's parent or parents, regardless of the gender of either parent. Solely for purposes of visitation policy, the concept of parenthood is to be liberally construed without limitation as encompassing legal parents, foster parents, same-sex parent, stepparents, those serving in loco parentis (in place of the parent), and other persons operating in caretaker roles.
This definition of family was developed in consultation with the Healthcare Equality Index Advisory Council, Gay and Lesbian Medical Association and Joint Commission staff members. Like the majority of the definitions of “family” contained in submitted hospital policy, this definition establishes a broad and encompassing concept of family. The specifically enumerated members of family provide guidance to staff and prevent biased interpretation to the contrary. The concept of “domestic partners” contained in this definition encompasses not only domestic partnerships, but all legally recognized same-sex relationships, including civil unions and reciprocal beneficiary arrangements. The definition also focuses on a functional definition of parenthood as established by the individual's role as caretaker of a minor child. This is designed to ensure visitor access for the individuals most responsible for the care of a minor patient, even if this caretaker relationship lacks formal recognition under applicable state law.
This definition of “family” places hospital personnel on notice as to the unique nature of parenthood in the visitation context. While the definition requires that caretaker-individuals be granted access to visit minor patients, this caretaker status does not necessarily carry with it the rights that accompany legal parental status. For instance, applicable state law may dictate that only a biological or custodial parent may determine the course of medical care for a minor child.
While specific methods of implementing family-centered care approach differs from facility to facility, procedures are fairly similar. On admission, the patient usually designates one or two people who will serve as their primary "care partners". The admitting staff discuss the reasons for admission with the patient and their "care partners" and what health criteria are required for the patient's discharge.
"Care partners" are then intricately involved with the patient's care by their entire attending healthcare team, including physicians, nurses, nutritionists, social workers, and more. At every stage, "care partners" and patients discuss with healthcare professionals test results, the state of the patient's current health, what type of things to expect throughout the day, and discharge goals. "Care partners" are invited to take part in nursing interventions, including bathing, feeding, helping the nursing staff with moving the patient, and assisting the patient in exercising or moving about the unit. "Care partners" are also invited to take an active role in "rounds," providing feedback and asking questions reflective of theirs and the patient's wishes or concerns.
"Care partners" are also indoctrinated on various elements of hospital operating policy, such as quiet time and visitation rules. The "care partners" are then generally allowed to manage the adherence to these policies in a manner conducive to the patient's healing and common sense—for example, by managing how many visitors are present in the patient's room.
Family-centered care emerged as an important concept in health care at the end of the 20th century; but the implementation of family-centered care was met with a variety of snags. Prior to the early 1990s, the relationship between care providers and patients was distant. The traditional model of care centered on physicians, and an expectation that patients and their families would assume a passive role as an observer, rather than a participant. Healing was treated largely as an abstract or business-like affair. Special requests by the patient were seen as interfering with the provision of their care or even as being a detriment to their health. Modern ideas like open visitation or care partners were almost unheard of and were generally dismissed as impossible to accomplish. This was compounded by the implementation of Health Maintenance Organizations, which successfully reined in the rising healthcare costs of the 1970s at the cost of the patient-healthcare worker relationship.
Much of the early work on family-centered care emerged from the pediatric and geriatric medicine fields; for example, as research came to light about the effects of separating hospitalized children from their families, many healthcare institutions began to adopt policies that welcomed family members to be with their child around the clock. As awareness increased of the importance of meeting the psychosocial and holistic needs of not only children, but all patients, the family-centered care model began to make serious headway as a credible intervention model. In the United States, this was further encouraged by Federal legislation in the late 1980s and early 1990s that provided additional validation on the importance of family-centered principles. [5] [6] [7] [8] [9]
Beginning in the mid-1990s (although elements of family-centered care had begun appearing in the early 1980s), however, this situation began to change. Studies began to show that many of the supposed detriments to family-centered care were negligible, not supported by research, or untrue. A study conducted in 2001 [10] showed that open visitation had little to no effect on physiologic parameters such as heart rate, blood pressure, respiratory rate, cardiac arrhythmias, and intercranial pressure. Indeed, evidence suggested anxiety levels and general cardiovascular health were positively affected after the implementation of family-centered care, leading to fewer medical interventions being required (physical or chemical therapies in particular). [11] Another area of concern, septic and infection control, found that as long as a patient's visitors were educated in the proper aseptic procedure (such as hand washing and use of handsanitizer gel), infection control outcomes were not negatively affected by unrestricted visitation. [10]
Patient care was also positively affected. In one study, it was found that patients receiving family-centered care were far more likely to have met the criteria of medical and nursing care plans (such as drinking x amount of fluids every eight hours, moving from NP suctioning to bulb suctioning, or the measurement of patient's intake/output), as the patient's family took it upon themselves to encourage or assist the patient in accomplishing these goals. [12] Family and close friends were more likely to identify slight variations in the patient's mental or physical health that health care professionals largely unfamiliar with the patient may miss. Furthermore, while health care professionals are very talented at their work, their jobs are generally limited by the walls of the health care facility, whereas a patient's family is not. Enlisting a patient's family as a part of their health care team helps enable their ability to assist, manage, and assess the patient's healing after their discharge from a health care facility.
A study undertaken at the University of Virginia's Children's Hospital [13] showed that sharing information and involving family in a patient's care (via the family-centered care model described previously) had the following effects:
A study conducted at eight hospitals demonstrated that implementing family-centered rounds, an intervention to standardize communication between families and healthcare providers, reduced the rate of harmful medical errors. [21]
A research study published in Denmark in 2015, examined the effect of nursing support on parents of children admitted to the Pediatric Intensive Care Unit. The study resulted in an increased satisfaction from parents of the support provided by nurses who were trained with the NPST, the Nurse Parent Support Tool manual. [22]
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.
Primary care is a model of health care that supports first-contact, accessible, continuous, comprehensive and coordinated person-focused care. It aims to optimise population health and reduce disparities across the population by ensuring that subgroups have equal access to services.
Child life specialists are pediatric healthcare professionals who work with children and families in hospitals and other settings to help them cope with the challenges of hospitalization, illness, and disability. They provide children with age-appropriate preparation for medical procedures, pain management, and coping strategies, and play and self-expression activities. They also provide information, support, and guidance to parents, siblings, and other family members.
Primary nursing is a system of nursing care delivery that emphasizes continuity of care and responsibility acceptance by having one registered nurse (RN), often teamed with a licensed practical nurse (LPN) and/or nursing assistant (NA), who together provide complete care for a group of patients throughout their stay in a hospital unit or department. While the patient is on the nurses' unit, the primary nurse accepts responsibility for administering some and coordinating all aspects of the patient's nursing care, with the support of other members of the nursing staff. This results in the nurse having greater insight into the patient's condition, both medical and emotional.
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 medical home, also known as the patient-centered medical home (PCMH), is a team-based health care delivery model led by a health care provider to provide comprehensive and continuous medical care to patients with a goal to obtain maximal health outcomes. It is described in the "Joint Principles" as "an approach to providing comprehensive primary care for children, youth and adults."
Transitional care refers to the coordination and continuity of health care during a movement from one healthcare setting to either another or to home, called care transition, between health care practitioners and settings as their condition and care needs change during the course of a chronic or acute illness. Older adults who suffer from a variety of health conditions often need health care services in different settings to meet their many needs. For young people the focus is on moving successfully from child to adult health services.
Ambulatory care nursing is the nursing care of patients who receive treatment on an outpatient basis, ie they do not require admission to a hospital for an overnight stay. Ambulatory care includes those clinical, organizational and professional activities engaged in by registered nurses with and for individuals, groups, and populations who seek assistance with improving health and/or seek care for health-related problems. The American Academy of Ambulatory Care Nursing (AAACN) describes ambulatory care nursing as a comprehensive practice which is built on a broad knowledge base of nursing and health sciences, and applies clinical expertise rooted in the nursing process.
Healthcare in Denmark is largely provided by the local governments of the five regions, with coordination and regulation by central government, while nursing homes, home care, and school health services are the responsibility of the 98 municipalities. Some specialised hospital services are managed centrally.
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.
Institutional abuse is the maltreatment of a person from a system of power. This can range from acts similar to home-based child abuse, such as neglect, physical and sexual abuse, and hunger, to the effects of assistance programs working below acceptable service standards, or relying on harsh or unfair ways to modify behavior. Institutional abuse occurs within emergency care facilities such as foster homes, group homes, kinship care homes, and pre-adoptive homes. Children who are placed in this type of out of home care are typically in the custody of the state. The maltreatment is usually caused by an employee of the facility.
The Improvement Science Research Network (ISRN) is a research network for academics and physicians who are conducting studies in the new medical field of improvement science.
Pediatric psychology is a multidisciplinary field of both scientific research and clinical practice which attempts to address the psychological aspects of illness, injury, and the promotion of health behaviors in children, adolescents, and families in a pediatric health setting. Psychological issues are addressed in a developmental framework and emphasize the dynamic relationships which exist between children, their families, and the health delivery system as a whole.
Nurse-Family Partnership (NFP) is a non-profit organization operating in the United States that connects mothers pregnant with their first child with registered nurses, who provide home visits until the child's second birthday. NFP intervention has been associated with improvements in maternal health, child health, and economic security.
Health care quality is a level of value provided by any health care resource, as determined by some measurement. As with quality in other fields, it is an assessment of whether something is good enough and whether it is suitable for its purpose. The goal of health care is to provide medical resources of high quality to all who need them; that is, to ensure good quality of life, cure illnesses when possible, to extend life expectancy, and so on. Researchers use a variety of quality measures to attempt to determine health care quality, including counts of a therapy's reduction or lessening of diseases identified by medical diagnosis, a decrease in the number of risk factors which people have following preventive care, or a survey of health indicators in a population who are accessing certain kinds of care.
Cultural competence in healthcare refers to the ability for healthcare professionals to demonstrate cultural competence toward patients with diverse values, beliefs, and feelings. This process includes consideration of the individual social, cultural, and psychological needs of patients for effective cross-cultural communication with their health care providers. The goal of cultural competence in health care is to reduce health disparities and to provide optimal care to patients regardless of their race, gender, ethnic background, native languages spoken, and religious or cultural beliefs. Cultural competency training is important in health care fields where human interaction is common, including medicine, nursing, allied health, mental health, social work, pharmacy, oral health, and public health fields.
Linda H. Aiken, is an American nurse and researcher who is currently the Director for the Center for Health Outcomes and Policy Research and a Senior Fellow of the Leonard Davis Institute for Health Economics. She also is the Claire M. Fagin Leadership Professor of Nursing Science and a professor of Sociology at the University of Pennsylvania, Philadelphia.
Family-centered practices (FCPs) use a variety of different tools for child development, where the development, provision, and assessment of healthcare is equally constructive to both children and their families. FCP is valuable to clients of all children and can be applied in many different healthcare settings.
The Platt Report, formerly known as the Welfare of Sick Children in Hospital , was a report that was the result of research into the welfare of children who were undergoing medical treatment within the UK and to make suggestions that could be passed on to the hospital authorities that would improve their welfare during hospital visits. The report was named after Sir Harry Platt, who was the President of the Royal College of Surgeons. Platt produced the report at the behest of the Ministry of Health in the UK government. The recommendations in the Platt Report, provided the means by which a child trauma ward of a hospital should be planned for children. Established on 12 June 1956, the committee that was to produce the report defined their remit as:
To make a special study of the arrangements made in hospitals for the welfare of ill children – as distinct from the medical and nursing treatment – and to make suggestions which could be passed on to hospital authorities.
The COVID-19 pandemic has impacted hospitals around the world. Many hospitals have scaled back or postponed non-emergency care. This has medical consequences for the people served by the hospitals, and it has financial consequences for the hospitals. Health and social systems across the globe are struggling to cope. The situation is especially challenging in humanitarian, fragile and low-income country contexts, where health and social systems are already weak. Health facilities in many places are closing or limiting services. Services to provide sexual and reproductive health care risk being sidelined, which will lead to higher maternal mortality and morbidity. The pandemic also resulted in the imposition of COVID-19 vaccine mandates in places such as California and New York for all public workers, including hospital staff.