Guidelines For Nurses Working In Home Care
Guidelines for Nurses Working in Home CareI.Introduction to Working in Home CareThe home setting carries with it other differencesfrom the hospital, in addition to the issues relatedto authority. In a hospital unit there are prescribedand enforced standards of care, there is a fairlycontained space in which to carry out care andthere are limitations about who can visit and forhow long. There are also defined lines of authorityfor determining care and for enforcing rules andregulations. In the home, there should exist moreof a family professional partnership, with the familytaking the lead in determining the household “rulesand routines” and nurses taking a less directionalrole. There may be specified standards of carebut who, where, and when care will be provided isnot as easily defined as in the hospital. Frequencyand duration of visits and numbers of visitorsor playmates are more relaxed and, therefore,less controlled than in the hospital. Nurses haveless control over to whom and to what the childis exposed. They are more at the mercy of theenvironment in the home setting than they areaccustomed to in the hospital. There are a greaternumber of decisions which need to be made byfamily and nurses about how to balance normaldevelopmental experiences with care needsand there is a real sense of isolation from otherprofessionals with whom to discuss treatmentplans, progress and problem solving.Providing nursing care in a home is very different fromhospital based nursing for a number of reasons. Thefollowing information describes some of the differencesand difficulties experienced by families and nursesworking together to provide home and communitybased services to medically fragile children. Whatfollows is based on surveys of home health nursesand interviews with parents, siblings and children whohave been or are participants in home- based care.A. The EnvironmentThe main difference between hospital and homecare has to do with the setting itself. The hospitalis a primary setting for nurses and a secondarysetting for families. On the other hand, the home isthe primary setting for the family and a secondarysetting for nurses. Under normal circumstances,nurses are the authorities on nursing care in thehospital and parents are the authority on theirfamily life in the home. In the hospital, nurses donot do much consulting with parents about what isdone, and in the home parents rarely consult withanyone on how they function or about the decisionsthey make. Under normal circumstances, thehospital and the home are two distinct and discreteenvironments. However, in the context of homecare, there is a blending of these two settingswhich can and often does create a difficult situationfor nurses and parents.Prior to taking the child with a disability home,parents should be taught the child’s total care.When this is done, parents usually know moreabout the individual care of their child than anyprofessional coming to the home. The parentsbecome the experts in the total, day-to-day careof their child at home. Parents are not used tobeing in charge of nursing care but they are usedto being the authority at home. Nurses are not usedto providing nursing care in homes but are used tobeing the authority on nursing care. Conflicts mayarise once home care begins because the parentshave “home court” advantage and know moreabout the specific child but do not have the overallknowledge base and experience of the nurse.Similarly, the home is more relaxed than thehospital environment, with fewer backups orsupports available to help. While it may bedesirable to be able to focus more intensely onone patient, there are also fewer challenges thanoffered by a hospital environment. Boredom andcomplacency may be a problem as home carecan become almost too casual at times and theprofessionalism required in the hospital maybecome diluted by the home environment.B. The RelationshipsThe second most significant difference betweenhospital and home rests within the relationships.In home care, nurses are in the position of beingobserved and supervised by parents. While thismay not be supervision in the classic sense of theword, it is nonetheless a reality. In some cases it
may feel more like being continually “scrutinized”and it can be a difficult adjustment for nurses.There is the basic feeling that a nonprofessional,such as a parent, does not have the education toevaluate the nurses’ performance. This feeling ofbeing evaluated by a nonprofessional can be amajor source of frustration for nurses working inhome care.Also, in the home, nurses will be exposed to theinner workings of family life, some of which maybe distressing. Nurses may not agree with theway family members are treated and may feel uncomfortable with a variety of aspects of a family’sculture and life-style. In a hospital setting, nursesmay have some exposure to the behavior of siblings and parents but generally it is lacking in theintensity and extent to which it will be experiencedwhen working in the home. In the home, nursesmay become involved in family relationship issueson a day-to-day basis which, while technically unrelated to the care of the child, are related to theenvironment in which the care is being provided.This may cause difficulty in maintaining the professional relationship required by the job.The primary focus of home care nurses is the medical care of the child in the waiver program but nurses can expect to take part in any activities whichrelate to the child including physical care, daily careof the child’s equipment and environment, and support of educational and developmental programs.Questions regarding other aspects of the child’slife, within the context of the family, will arise fornurses, just as questions about nurses will arisefor the family. Although the nursing personnel areemployed to care for one child, the fact that nurseswill essentially be working in the home requiresthat relationships be established with other familymembers as well as other health care professionals. The initial months are especially difficult aseveryone adjusts to their roles and relationshipswith the multiple providers of care.The following information is provided to help nursesestablish and maintain a professional working relationship within a home environment. The generalguidelines are designed to help nurses preparementally for the experience of home care with thespecific guidelines as a way of avoiding identifiedsources of stress. It is recommended that parents,case manager and/or the hospital personnel meetwith nursing personnel who will be in the homeafter discharge to go over the guidelines. Thenursing agency supervisor needs to be involved inthe discussions to assure that the guidelines arein line with agency policies and procedures andwill be supported by the agency and supervisor.II. General Information for Nurses Working in HomeCareA. Adjustment to Home CareFor nurses who have not worked in home carebefore, there will be a period of adjustment nomatter how well thought through the experienceis by all involved. It is a different environment andnurses need to be aware that it will take time tomake the adjustment. There are never going to bethe clearly defined roles and responsibilities whichexist in other environments. Learning to cope withthe home setting will necessitate a willingness andability to be flexible.Family members will be experiencing a numberof emotionally charged issues over the course ofthe home care experience. They may react angrilytoward nurses in ways which are inappropriate.Nurses do not have to submit to mental or verbalabuse. However, it is important to remember toobjectify and not take personally outbursts whichare not rational. Experienced professionals do notfeel threatened when a parent questions some action and nurses need to be prepared to both listento the content as well as the meaning of questionsor even outbursts. It is important to evaluate whatelse is going on in the home because even subtlechanges may be the source of stress.B. The Early Months of Home CareThe first six months of home care are a time ofhigh anxiety for everyone, with the first month themost difficult. Parents are nervous about their ownability to care for their child without the backup ofthe hospital staff and are not yet fully trusting of thehome care nurses. Parents will be anxious abouteverything but especially about the “details” of thecare of the child. Nurses may be impacted by thesefamily stressors, simply by virtue of being there.It is also a time of anxiety for nurses who are newto home care and who are not sure of their ownability or the parents’ ability to handle emergencies.It is during this time that trust must be establishedbetween parents and nurses. Because of theparents’ anxiety and nurses’ anxiety, there isa strong risk that inappropriate patterns ofcommunication will be established.The first six months are also a time of high turnoverof nurses who decide they do not wish to work insuch an environment. However, it is important tounderstand that the home care situation will notalways be so anxiety or tension ridden. Parentsand nurses will develop a routine with the childand anxiety will decrease markedly.
C. Home Care Over the Long TermOnce staffing patterns are established and thehome has relaxed into a workable routine, thenext “critical incident” time for families commonlyoccurs at about 20 to 24 months. By that point, thefamily has generally dealt with the “getting home”and “getting along” aspects of home care but seemto go through an intense experience dealing with“getting on” with a family life which is markedly different than they had anticipated. The fact that thiswill be a long term or “forever” experience seemsto hit parents rather hard after the first two yearsand can be a major turning point for some families.The experience can last for several months and isusually characterized by anger, ambivalence anddepression. Again, this is a time when nurses,simply by virtue of being present, are going tobe the most obvious target for the anger andambivalence. Parents may begin to find fault witheverything which the nurses do, even though thenurses have been doing the exact same things formany months. This is a particularly difficult timefor families because it seems so out of sync withwhat they felt they had already dealt with by coming home. It is a prime time for what can appear tobe arbitrary discharge of nurses and home healthagencies. Family discord may reach an all timehigh and the tension in the home can permeateall aspects of family life.Nurses need to be particularly sensitive to parentsgetting tired at this time and help in whatever waypossible to make things run smoothly. Legitimateconcerns about the care of the child can be addressed through proper channels as they arisebut it is important to remain as calm and objectiveas possible through the rough points and not topersonalize the situation.III. Guiding Principles for Nurses in Home CareThere are three guiding principles which are importantto assure that the home care experience will be thesupportive service it is intended to be. The principlesoverlap and are interrelated but are presented in thefollowing as discrete entities for emphasis.A. The Parent as Authority in the HomeWith the large number of agencies, organizationsand health care professionals involved with thechild and family, it is easy to forget that the parentsare the ultimate authority over their child and thecare that their child receives. Everyone else isthere as service providers and/or as consultantsbut it is the parents who are and should be incontrol of the overall situation. In this regard, whilenurses may be hired by a home health agency andwhile funding for home care may come from a payorother than the family, the parents are, in fact, theconsumers and therefore equivalent to being thenurse’s employers. They have the authority to bothselect and remove agencies and individual serviceproviders and to establish the specific guidelines forhow service is provided to their child in their home.While the discharge of individual providers and/oragencies is not the recommended first responsewhen dealing with problems in home care, theparents are the authority in their own homes andtherefore this can occur.Nurses need to keep in mind that they are workingfor the family, not present in the home as a favorto the child or family or out of altruistic concern.Working in home care is a contractual, businessrelationship. Therefore, inherent in this businessrelationship is the requirement of respect for parental authority. Efforts to enable parents to developand maintain the central position of authority areessential. This does not mean that parents haveto do everything themselves but rather that theyhave the authority to oversee the entire homecare situation and can assign responsibility to theappropriate people.Nurses need to consistently carry out their responsibilities in a manner which will gain the trust of theparents. Parents must also feel that the nurses inthe home will be supportive of parental decisionsand will respect the parents’ ability and right tocare for their own child. If nurses are able to develop a supportive, trusting and mutually respectfulrelationship with parents, then difficulties can bediscussed and problems can be resolved in a waywhich is not threatening to either parents or nurses.Developing a relationship that is respectful of theparents’ authority and the nurses’ skills and responsibilities is a dynamic process. It takes timeand a conscientious, consistent commitment fromthe nurse, the nursing agency and the parent.B. Professional and Personal SupportIt is of utmost importance for nurses to establisha personal and professional supportive networkoutside of the home in which they are working todeal with the intensity and stress of home care.Working with one patient in one home, while it hasits desirable qualities, also has drawbacks. It canbecome boring, stressful or all consuming, especially for nurses who work full time in the home.Professional support should be available throughthe nursing supervisor, home care colleagues, or
their professional organizations. Regular supervision meetings, staff conferences or even nursingsupport groups may help the individual nurse toput into perspective one’s own behavior or theunexpected behavior of family members.Personal or social support from one’s own familyand friends is also important. Nurses who try tohave personal or social needs fulfilled in the client’senvironment are at risk of becoming too personally involved with the family. This can lead to aninability to maintain an appropriate professionalrelationship.C. Maintaining a Professional Relationshipt is perfectly normal for families consciously orunconsciously, to seek to incorporate the homecare nurse into the family unit in order to decreasethe stress of having an outsider in the home. Thispull is difficult to resist because it feels like an acceptance and statement of affirmation to be considered as a “family member.” While this may beappealing for the nurse, this does not necessarilyreflect the family’s personal statement regardingthe nurse as a person. It is, instead, an attempt todecrease the family’s own anxiety.As professionals, nurses are responsible to maintain an appropriate professional distance while atthe same time supporting and respecting the family’s naturally established boundaries, even whenthe family attempts to include nurses as familymembers.There are families who have no boundaries orboundaries which are so diffuse as to be virtuallynonexistent. These families will automatically viewnurses as members of the family unit and expectnurses to function as a full member of the family. Inthese circumstances, it is all the more important forthe nurses to help the family establish boundariesby identifying those areas where it is inappropriatefor the nurses to be involved even when invited,such as, in family arguments, decisions aboutfamily activities or even life style choices.Becoming overly identified with the child or familycan be a problem for nurses as well as the family. Itis important for nurses to remain objective in orderto execute their role with maximum efficiency andeffectiveness. This is not intended to mean thatthe home care assignment is “just another job,”but it is intended to emphasize that it is a job andshould not become the nurse’s life.IV. Specific Guidelines in the HomeThe next sections will deal with more specificguidelines for nurses working in home care. Thespecific guidelines are written for all levels ofprofessionals in home care and while some mayseem obvious, they are provided as reminders thatcertain behaviors and actions may have impactbeyond the original intent.A. Common Courtesy in Home CareThere will be many caregivers entering the homeand the child’s bedroom in particular. It is importantto be sensitive to the fact that it is someone’s homeand treat the furnishings with respect, e.g., wipe upspills on furniture and carpeting; notify the parentif something is broken; wipe feet before entering,etc. With so many additional people coming in andout of the home there will be extra wear and tearon the furnishings and efforts need to be made tominimize that as much as possible.It is not the responsibility of the nurses to do general housework but it is expected that nurses willhelp maintain a clean and neat environment forthe child, e.g., replacing supplies and equipmentin their proper places, making sure the child putstoys away after use, etc.B. Value JudgmentsNurses may be working in homes in which theyexperience differences in basic social values andbehavior than those of their own. These differencesshould not be identified to the parents. As long asthe life style and behaviors of the family do notrisk harm to the child or prevent the nurses fromdoing the job they are there to do, how a familylives is their own choice. Most concerns in thisarea center on judgments regarding disciplineof the child and/or siblings, housekeeping, andrelationships. Similarly, the financial affairs of thefamily including how a family chooses to spendtheir funds is not the business of the nurses. It isrecognized however, that it can be difficult to workin an environment where values differ dramatically.If nurses find the differences too distressing, it maybe necessary to consider the decision not to workwith a particular family.C. Spiritual or Religious BeliefsThe spiritual or religious beliefs of nurses shouldnot be expressed in the work place. In addition, itis important to avoid any attempt to influence thechild, siblings, or parents regarding spiritual orreligious values which may differ from the family’s
own. If the child asks questions of a spiritual or areligious nature, nurses are expected to defer tothe parent(s).D. Day-to-Day RoutineHome care is a 24 hour a day, 7 days a week jobfor the family and generally a 40 hours or lesswork week for nurses. Routines which the familyhas established for the child should be followedas closely as possible. Asking the family how andwhen they would like to discuss non-emergencyupdates on the child’s care will avoid repetitionof information.H. Reporting Abuse or NeglectChild Abuse or Neglect: There are occasionswhen it may be necessary to raise concerns abouta parent’s or other care giver’s ability or willingness to care for a child. Nurses are mandatedreporters under the Abuse and Neglect ReportingAct (ANCRA) and are responsible to report anyacts of physical abuse, neglect, or sexual abuseto the Department of Children and Family Services (DCFS) at 1-800-252-2873. Physical andsexual abuse are fairly clearly defined in the Actitself. Neglect, on the other hand, is less easy todetermine, especially when a medically complexchild is involved.It is necessary to document incidents of neglectincluding description of alleged neglectful behav
I. Introduction to Working in Home Care Providing nursing care in a home is very different from hospital based nursing for a number of reasons. The following information describes some of the differences and difficulties experienced by families and nurses working together to provide home and community- based services to medically fragile children.
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